Ty Louis Campbell - our little fighter

2012-02-29T18:04:00.001-08:00

No evidence of disease. Hallelujah. Thank you so much for all of your love. On top of that amazing news (breathe), Ty also gained another pound and a half! In just two weeks! He is a healthy growing boy and everyone at the hospital was commenting on how well he looks.

Today was a long, exhausting and rejoiceful day. I left the house this morning draped in jewelry with my pockets overflowing. I wanted to have all of you close to me for support. So many items to remind me of Ty and Gavin - along with beautiful good luck tokens and unique religious mementos of every denomination - have been thoughtfully gifted to me, Lou and Ty over these 18 months, and it is so comforting to feel that love from head to toe. I had my worry stone, my lucky ladybugs, my miracle stars, my bracelet, my medals, my stones, my coins, my necklaces, my SuperTy and "Cure Cancer" tees, my wallet inserts, my pictures, my prayer cards and more! It really reminded me how many people love Ty and all of my family, and that is so special.

After hearing the good news, Ty had his bi-weekly infusion and we decided to stop in on the inpatient side for a quick visit with some of the caring nurses we have grown to love and adore. They give Ty the BEST MOST LOVING CARE and Lou and I will forever be grateful for that. They take care of all of us, really, and it has made Ty the healthy little growing boy that they saw today. I miss them, but of course we are thrilled that we don't get to see them often anymore because that means Ty is healing. We are nowhere near out of the woods, not by a long shot, but I can see the sun through the trees and it is very bright.

Today was a good day indeed. :)

Wednesday can't come fast enough

2012-02-27T22:32:00.003-08:00

Two more days until Ty's MRI and I am beyond anxious. The worst is how I analyze everything Ty does. Poor kid. I don't want to freak him out, but it's hard to control when I am freaking out myself!

"Why are you squinting at the TV, do your eyes hurt? Can you see alright?"
"Why are you breathing like that, do you have a belly ache? Do you feel sick?"
"I heard you cough, do you feel nauseous? Are you going to throw up?"
"Why won't you answer me? Can you hear me okay?"

For months now, when Ty coughs he usually yells across the room, "I'm oh-tay, I just coughing, I not sick." I guess I've conditioned him because he knows that as soon as I hear something like that I drop whatever I'm doing and come running with a bucket. I'm not sure that instinct will ever go away completely.

I am just so lucky that Ty really hasn't been sick like that in a very long time - that I am mostly responding to false alarms. I can't tell you how much my life has changed since he stopped vomiting regularly (and by regularly, I mean hourly for months on end). I am living in rainbows and my whole world is healing. I just need to get that confirmation on Wednesday so I can feel free enough to jump in the clouds (at least for a few weeks, until the scanticipation gets the best of me again).

I have faith that his scan will be perfectly clear and free of cancer. All of your love, support, prayers, positive thoughts and healing energy are so greatly appreciated. Our little fighter will do this again someday.

Today was my mom's birthday. We spent the day with her and my Dad. Ty and Gavin picked out a cake and made her beautiful cards. We are home now, everyone tucked into bed, and I miss my mommy already. Happy Birthday, Mom. I love you forever.

Winter Fun

2012-02-26T14:26:00.000-08:00

It feels like winter is finally here, just as we started gearing up for Spring! My poor confused hyacinth and daffodil bulbs; they started coming up a few weeks ago and then we woke up to three inches of snow on Friday. I was happy to see the snow and I have my fingers crossed that the tulips I planted with Ty and Gavin will fair better than the early bloomers :)

I had big plans to go to Costco on Friday (woo hoo), but I was happy to pun on our snowpants instead and start shoveling. It was warm enough where Gavin was able to play in the snow with me for a couple of hours and we had a great time. Ty came out, too, but didn't last long at all. Probably because he was sitting in the snow instead of walking around so I think he just got cold. He threw a couple of snow balls at me and called it a day :)

Here are some pictures of Gavin with our snowman.

I also want to share some really sweet photos from our last trip to Vermont. I mentioned how much fun Ty and Gavin had when we went snowtubing at the mountain, but I didn't get to share many pictures. The first picture is a Campbell family photo, then Ty at the mountain with Daddy and Eva (his best friend), then Gavin alone, and the last one is of Ty and Gavin with their best friends from Long Beach, Eva and Theo. These pictures were just too precious not to share and I was inspired the chill in the air today and the snow on the ground here in Pawling, NY.

Before I sign off, I am also attaching a video of Ty snowtubing. It's hard to tell what's going on here, but it's pretty obvious that he's having a great time. I'm so happy that he was able to do this. His laugh is the most beautiful sound in the whole world.

Bereavement

2012-02-23T19:55:00.001-08:00

Pete and Mary, my cousin and his wife, will never be the same. They are bereaved parents and they are broken. Today would have been their baby Remy's first birthday. Their situation is one that I can imagine more than most because I have come so close to being in their shoes so many times, and because I live in the constant fear of Ty suffering a relapse. Bereaved parents suffer every single day of their lives from a throbbing wound that will never heal.

When I have the rare opportunity to run to the supermarket or the pharmacy without Ty, I feel his absence the entire time. There is a heavy, fearful awareness that the most important thing in the world to me is simply missing, even though I am perfectly sure that he is safe at home. (Don't get me wrong, those feelings of absence occur in whispering nanoseconds that are quickly replaced with feelings of sheer freedom :) ).

If I ever lost my Ty, I don't imagine I would ever stop looking for him in my rear view mirror. Ever. Life would not "go on". I would not recover. I would be forced to live in a new, brutally painful reality. I don't plan on ever going there, but that decision is out of my hands.

I wish I could hug Pete and Mary right now, and every parent I know who lost a child. Over the last 18 months I have gotten to know way too many parents who have gone on to lose their children to cancer. So, so many. It has to stop. Pediatric cancer awareness needs to improve, drastically; and funding needs to improve, drastically. There is so much tragedy and so many young lives lost due to accidents and illnesses. It makes me so upset to think how the ugliest illness of all, cancer, hasn't been stopped yet. WE HAVE TO STOP IT! Lou and I will never stop asking for your support and we have some future fundraising activities in the works that we hope you can participate in Even if the only support you can afford is prayers, positive energy and sharing Ty's story to spread awareness - we are eternally grateful beyond words.

Here is the bereaved parent that I talk to every night. During my most painful days I have felt her arms wrapped around me as I wept. I really have. I am so grateful because without talking to her, I don't know how I would have gotten through some of those days.

Ty's continued improvement
Over the past few days, Ty has been eating really well. We have had a lot of "fights" that are resulting in improved habits! It hasn't been easy, but the tough love is paying off because he is now happily eating strawberries, noodles, buttered toast, chicken, turkey roll-ups, yogurt melts and yogurt smoothies. He has slowed down on the apple juice, the cheese :( and the fruit snacks. He is currently obsessed with blue raspberry Sour Patch Kids, but he only gets two of them as a reward every time he eats a substantial amount of real food. I feel good about this. He is getting stronger! Lou is the one who decided it's time to get tough (I'm much more of a softie) and he was right. The Etoposide doesn't seem to affect his taste as much at the reduced dose he is on, and Ty has proven that he is willing to reintroduce some new, healthier foods. We are thrilled!

My friend Linda came all the way from Rhode Island for an overnight visit yesterday and she hasn't seen Ty since he was in the hospital in June. She could NOT believe how well he was doing. She couldn't stop talking about how strong he is, how well he played with Gavin and how he was able to mobilize around the house by "scooting" or holding my hand. To see how blown away she was reminded me of just how amazing Ty is and what a long way he has come.

The reason for her visit was to join me in accompanying one of our great friends (and one of Ty's biggest supporters) to an MRI in the city that evening. I am not writing to share the medical details or anything... the reason I am sharing is just to reflect on how great it is to get together with friends. It doesn't matter how much time goes by, I am always so comfortable and relieved to be in the company of people who know me best. Sitting in a waiting room at the imaging center during our big night out in NYC proved to be absolutely hilarious. We just talked and made each other laugh and it felt really, really good. Thanks girls!! Oh, and I finally got to see for myself what all the hype is about - Pinkberry truly is totally awesome.

I also had an overnight visit earlier this week from my oldest, bestest friend, Dawn, and her twin baby girls. I am so happy that we spent so much quality time together. She is also my first cousin and Pete's sister, so naturally we talked a lot about the loss of her baby niece. I hope I said the right things... there really are no words other than "I'm sorry." My friends really come through for me and I am so grateful for all of them. I hope I was able to return the favor a little bit this week.

Ty hasn't been sleeping as well as I would like (eek! - the nerves) but I am feeling better about it since my last post because I did not suspect any head pain the past few nights. He just seems a little uncomfortable at night and that could be anything. As Lou said after Ty cried out last night, "We only have one more week of stress and anxiety, then we get six whole weeks of bliss before the prescan stress begins again." To explain: Ty gets an MRI every two months. This will go on for a year or more, until it gets pushed back to every three months, then every six, then annually.

Goodnight everyone. More to share tomorrow. Thank you, as always, for keeping tabs on Ty and the rest of my family. Kisses from SuperTy! Love that face :)

Fun and fear

2012-02-19T20:04:00.000-08:00

I'm sorrythat it's taken me so long to share updates. The last few days have had theirfair share of ups and downs... fun and fear... but mostly fun (thank God). Thefew nights that I was online attempting to post an update turned out to bepretty rough. Ty has been more restless than usual, and just as I would getcomfortable with my computer in my lap I would hear him crying. Sorry everyone,but snuggling up with my little man always takes precedence over everything else :)

I'll go aheadand get the "fear" part out of the way because it is weighing on mymind and it always feels better to talk about it. Three nights this week, Tywoke up in the middle of the night whining. He was only half awake and hewouldn't talk to me when I asked what was wrong. His behavior reminded me somuch of how he used to be as a toddler just before his diagnosis. He waswhimpering while holding his head and there has been a lump in my throat eversince. Lou and I are both carrying some extra weight on our shoulders every dayas a result, and we are very much looking forward to his next scheduled MRI sowe can get the good news and breathe better.

Ty's next MRIis scheduled for Wednesday, February 29th. Leap year luck, right? There areseveral reasons why I know it will be fine, but that doesn't stop us fromfeeling on edge. First, because Ty had an MRI in late-January and it wasperfectly fine. Not much time has passed since then so it isn't likely there isanything large enough to be bothering Ty to the extent that it would keep him up at night. Second,because Ty is unable to turn himself over in bed so sometimes he cries and whines when he's uncomfortable and needs us to help adjust his position before he can fall back to sleep. Third, because his story is so inconsistent. I woke Ty up twonights ago to talk about why he was whimpering. He was reluctant to answer, andwhen he did his story was hard to decipher. He said he had head pain (oh myGod, it was like the string that holds my heart in place just snapped), butthen he said he just missed me and wanted me to sleep with him. In the morningwhen he woke, he told Lou that he didn't have a headache the night before, butwhen I asked him later that morning he said he did.

Did you havehead pain last night?
Yeah.
Really? Didit hurt a lot or a little?
Not really.
It didn'treally hurt, or it didn't really hurt a lot?
It didn'treally hurt a lot.
Wait, so didyou have head pain? I need you to answer me carefully because this isimportant.
Yes.
Do youremember when you used to have head pain? Was it the same as that?
No. It wasn'tthe same.
Oh, wellthat's good. Ty? Do you remember when you used to have head pain and it wouldhurt really, really bad?
No, I don'tremember.
Good. I don'tever want you to remember that, anyway. I'm so happy you don't remember.

So,as you can see, it's not easy to really know what Ty is telling us. He's allover the place and he changes his story on us, so I am trying not to worryabout it. Last night he was tossing and turning all night, and whining on andoff, but he insisted he did not have any head pain. He also has a bit of astuffy nose, so perhaps his head is congested and causing a little discomfort.It could be anything, as long as it's not cancer, right? That's all thatmatters. Look at this face... this is the smile of a boy who is otherwise feeling great!

Now, onto the fun stuff. Over the past week we have had a lots and lots of it. Valentine’s day was so sweet. Ty changed the words to the Spiderman songto: Valentine. Valentine. Would you be my Valentine? (Instead of “Spiderman. Spiderman. Does whatever a spider can…”). He’s been singing it over and over andover and over again. I am so proud thathe came up with something like that all by himself. It really reassures me that he is doingperfectly fine and doing things that any perfectly normal four year old kidwould do. Ty also received some veryspecial Valentine’s Day packages in the mail throughout the week, and it alwaysbrightens his day (and Gavin’s too). Here's Ty opening a box filled with love. What more could anyone need? I save every single letter that anyone sendsto Ty, because I know he will cherish them just as much as time goes by and find strength in them as hegets older. Thank you to all of thethoughtful families who put these together for Ty this Valentine’s Day.

On Wednesday, Lou, Ty and I spent theday at the hospital for his bi-weekly infusion. He was such a good boy at the clinic, so we let him visit the vendingmachines and the candy store downstairs at the hospital (always a very big dealfor Ty). His doctors and nurses agreed that he is doing very well, and they are so happy with how he is responding to his daily chemo now that they lowered the dosing across the board. On our way home, we stopped atNana and Papa’s house to cash in on some big hugs and kissesand Ty was so sweet. He loves being withhis grandparents so much.

Thursday Ty went to preschool and hereturned the class pet, Spot. He was SOPROUD when the teacher read his journal entry to the rest of the class. It’s moments like that when I am so thrilledto be there with him, sharing in his everyday preschool experiences. They held an adorable Winter Olympicsupstairs at the school and Ty reacted pretty much as I expected. He was excited at first, then overwhelmed. He often shuts down when there is are physical activities that he can’t participate in. He didn’t get upset at all, which is great,but he sighed and told me he was bored even though it was one of the moreexciting events that takes place at preschool. When everything slowed down toward the end, I showed Ty that themake-shift obstacle course was empty and I asked if he wanted to give it atry. Just as I thought, he had a big smile on his face when I put him down and helped him to jump over thehula hoops and climb the bridge. Hewanted to do it after all, he just needed some space.

Gavin went to his preschool class onFriday and he had a lot of fun, too. Heis getting so big! Not to mention, sohandsome. He will be three years old in April. I can’t believe it. Where did my baby go? I have to start planning a birthday party for him. Last year he shared his birthday with Ty because Ty's half birthday is April 4th, but this year we are going to forego the half-birthday celebration since Ty is feeling so well and just focus 100% on Gavin.

This weekend was especially busy. We have been all over the place. One of Ty’s very first friends, Kate, has twonew twin brothers and we were delighted to celebrate their christening in LongBeach on Saturday. The babies are soincredibly cute I could just eat them. Imiss that a lot. Time just goes too fastsometimes. The party for the twins wasso great. They had a DJ for the kidsthat kept Ty and Gavin entertained with games and dancing. They were having a lot of fun which allowedLou and I to make up for a lot of lost time with our old neighborhood friendsfrom Long Beach. All of the kids aregetting so big! It was so exciting tosee everyone, and to see how the more things change the more they stay thesame. They are all such great people,and so loving. I look forward to seeingeveryone again at the Robert Manzoni Memorial Fund Gala this March. This is a very special organization and wewould love for anyone and everyone in the NY area to join us there!!

After the christening, we had dinnerwith more great friends in Long Beach and we enjoyed the most delicioussushi!! God, how I miss good sushi. I don’t think it exists upstate. We spent the night at my mom’s house and allday Sunday was a blur. We completed ourdaily ritual of going to the supermarket and candy store. We visited with Aunt Dawn and her new babygirls. We played with Grandma, Pop-popand Great Granny for hours on end. Wewent down the block to visit with one of my great high school friends and herfamily (she lives right around the corner from my mom) and we got to see mycousins Debbie and Laura who I miss so much. I was so happy they stopped by my mom’s house, it has been way too longsince we've gotten together. They gave Ty agift card for Toys R Us and he later did the cutest thing. As we were driving home late tonight, Ty and Gavin were asleep in the back seat. Ty woke up in a half-asleep buzz and said… in a panic…“Mommy! Where’s my Toys R Us card?” I told him, “Don’t worry, Daddy put it ina very safe place.” Ty answered,“Good. I like that card. I like that a lot!” Of course he does. He can buy his two favorite things at Toys R Us. Toys and Candy!

Before signing off, I want to sharethis beautiful picture of Ty and Gavin. I used to long for these moments when Ty was sick. I hoped and prayed and believed that he wouldbe able to have fun with his toys and play with his brother again. Praise God. Thank you for your love and support. Please continue to pray for Ty’s improvement. Believe that his cancer will never ever, ever,ever, ever come back.

Love to you all

2012-02-14T20:48:00.000-08:00

Last Valentine's Day, Lou, Ty and I were in the pediatric intensive care unit (PICU) at Weill Cornell NY Presbyterian Hospital. In hindsight, those days were horrific... but we were clinging onto hope. Hope ends only when you stop believing, and we will never stop believing in Ty. God, he has been through so much. He is one amazing kid. SuperTy indeed. I love him and Gavin to infinity and back and I am the luckiest mommy in the world.

This Valentine's Day was an entirely different story. Ty spent the morning with me at preschool where he made beautiful Valentine's for all of his loved ones. He was walking around his classroom with minimal support from me, and he got a huge smooch on the cheek from one of his classmates (so did I, she is a sweetheart). Then we spent the rest of the day at home with Gavin, having tons of fun doing nothing special. Lou came home with flowers and we enjoyed a very loud, unromantic home-cooked meal filled with constant interruptions from Ty and Gavin. They were asleep early tonight and Lou and I are now watching some romantic comedy and calling it a night.

I posted this to my facebook tonight because I love it:

I asked a wise man, “Which is more important, to love or to be loved?” The man replied with another question: “Which is more important to a bird, the left wing or the right wing?”

Happy Valentine's Day to all of you.

Cancer is evil

2012-02-12T22:01:00.000-08:00

Stefanie Jacobowitz was a beautiful person. She died of ovarian cancer three days ago and I haven't been able to stop thinking about her and her family. She was 44 years old, she has three small children and she always struck me as such a loving mom and wife. I looked up to her and admired her hysterical sense of humor and her easygoing perspective on life. I am just so sorry and so sad.

I had so much to share about Ty's progress the other night but when I logged onto my computer and learned about Stefanie, I simply couldn't write anything. I was completely caught off guard and I have been so depressed over the news. I just needed a couple of days before I could update everyone on the little things happening in the Campbell family when another wonderful family is hurting so much.

I worked with Stefanie for several years when I was younger, and we reconnected on Facebook about five or six years ago. She followed Ty's journey and sent me words of encouragement often, even after she herself was diagnosed less than a year ago. She still thought of Ty and contacted me before his MRIs to say she was praying for him. All I can say is that she was a remarkable person. I used to laugh out loud at the clever remarks she was always posting on Facebook because she was just so funny and fun to know. She made me smile, she was sweet, she was kind and she should still be here; playing with her children and holding her husband's hand. When is cancer going to be stopped?

News like this naturally brings out my worst fears about cancer and what it has in store for Ty. I had to do laundry last night and I hesitated before scrubbing his pillow case to wash out a huge blood stain. The other night he had a bloody nose from hell - I swear it looked like a horror movie. It happens sometimes. His platelets might be low and the high doses of Accutane dries out his skin and his membranes so badly that they bleed something awful. Anyway, I hesitated because I thought I should keep the pillowcase with the fresh stain so I could hold onto a real, tangible piece of Ty. The same way I held onto some of his hair when we had to shave it. That was his blood, a biological part of him, and if anything should happen to him at least I could hug that pillowcase and run my fingers over the stain. I realize how strange this sounds, but it's the truth. In the end I scrubbed it and threw it in the machine because I believe in Ty and his continued improvement... and because you all do, too.

Last week, it was Ty's turn to bring home the class pet again. Spot. Thanks to our wonderful friends Charlie and Rachel, we were able to bring Ty and Gavin back up to their house in Vermont for some quiet time in the mountains, and of course Spot came with us. They all had a great time and we even went snow tubing.

Ty has been walking very well. He is standing without any support for a few seconds at a time, and he no longer needs support to hold him up as he walks. He just needs to hold our hands for balance, but his legs are finally strong enough to bear his weight and his ability to pull his left leg forward has greatly improved. His left forearm/hand is still very weak and spastic, but it is slowly improving as well. I am excited to see his physical therapist tomorrow because I wonder what else I can be doing to help him get closer to walking on his own. The other night Ty whispered to me, "Mama! Some day I'm gonna walk by myself!" It was just so cute how he whispered it in my ear.

Ty has been feeling great and having fun. The Etoposide hasn't knocked him down much at all, he is still staying active during the day. Today we had a lot of fun with his cousins James and Ryan, and later Ty made valentine's for all of his classmates. He put a lot of time into each one. On the back of each, he drew what he said was "candy" and then he wrote his name the best he could. Here is an example of the front and back. He made hearts for the girls and blue squares for the boys (of course, I wrote his name on the bottom, too). Cute!

His appetite hasn't improved much, but he has transitioned from the square pretzels to some noodles with butter and sprinkle cheese, which makes me very happy. He also drank seven mini yogurt smoothies today and he ate a few bites of cheese. Every little bit is a big deal. Some very kind people have written me emails with food suggestions, and I just wanted everyone to know that Ty also gets supplemental shakes through his G-tube that are filled with vitamins, proteins, calcium, etc. He has a nutritionist at Sloan Kettering who has special ordered these shakes in an effort to meet his daily needs, so hopefully he is getting some balance. I remember how devastated I was when I was told he would need a feeding tube back in August of 2010 and when I reflect on that now I don't know how we would have ever gotten by without it. It gives us such an advantage when it comes to his diet and administering his medication. Whew!

I can't believe it's 1AM and I don't feel tired at all. I am going to attempt to get some sleep, but I have a feeling I will be tossing and turning tonight. Goodnight everyone!

Two steps forward

2012-02-09T19:02:00.000-08:00

For some reason, the titles on my latest posts have not been showing up on the site. In case that happens again tonight, I want you to know that the title for today's entry should read, "Two Steps Forward." That is because Ty took two steps all on his own. He has been increasingly brave over the past two weeks and he has been letting go of our hands to stand on his own for several seconds at a time. Tonight, he decided to walk forward and he was able to take two small but steady steps before grabbing for our hands again. I think he is starting to realize how important it is for him to just take a chance and give it a try. If he is going to walk on his own again someday, he has to start somewhere!

This is all so wonderful and new. I feel more excited today than when he took his first steps at 10 months old! It is also a bit scarier now than it was then. When he was a baby, he was used to falling over. He was wobbly, he fell on his bum, he picked himself up and everything was fine. Ty at four years old is very weak, so he won't be able to catch himself if he falls. He doesn't have the strength in his arms to stop himself from hitting the ground... hard... but that doesn't stop him. Besides, he knows that Lou and I will ALWAYS be there to catch him. I am just so proud of him. Everything about him really is extraordinary. He is one super kid.

It's hard to tell, but Ty was scooting away when we took this picture. I pray that today has inspired him to be up on his feet more and more!

Next MRI

2012-02-07T07:33:00.000-08:00

Ty's next MRI of the full brain and spine is scheduled for Wednesday, February 29th. Fingers crossed for a lucky leap year! I originally posted February 8th on his Facebook page, but Lou has since reminded me that it won't be until the end of the month. Thanks to all of those who have been reaching out and wishing us luck for tomorrow. I will be holding onto all of those well wishes and saving them for three weeks from now.

Ty and Gavin are both doing great this week. We have been having a lot of fun together and trying to take advantage of Ty's increased appetite by making a lot of extra trips to the supermarket and CVS for whatever he is in the mood for. Mostly pretzels, but sometimes cheese and yogurt drinks, too. He even had a turkey rollup yesterday.

We took the boys snow tubing yesterday and I have a very fun video to share with you as soon as I have a chance to download. Ty absolutely loved it and he went over and over and over again. We were so impressed - he was fearless!

Cute story

2012-02-06T07:07:00.000-08:00

I just have a very short and sweet story to share. On Friday, I had to take Ty for his blood work. Although everything came back fine during our hospital visit on Wednesday, we are still being very conservative when it comes to his platelet count, so we had it checked again later in the week.

There is a lab at the local hospital that is open 24 hours and can provide the results within an hour or two, so we have been going there for several months now. Everyone who works there is getting to know Ty, and they treat him very well. I don't think they have a lot of young patients coming in, so most of them dote on Ty whenever we visit. It's not easy, because Ty knows that it's going to hurt and he puts on quite a show every time we visit, but they try to calm him down the best they can.

Most recently, there was a young guy working there who I have never seen before. I would guess he is in his early to mid-twenties. While we sat waiting for one of the nurses to come back and draw his blood, Ty was crying as usual. To calm him down the guy offered him candy, but Ty was not interested. Then he offered him some fruit snacks. Ty's eyes widened and he gave a whimpering nod. It worked! He ate all of the purple dinosaur fruit snacks and he was happy for the time being. When the other nurses arrived, they were so happy to see Ty and they commented on how strong he's getting (which always makes me happy). When they saw that he liked the fruit snacks they asked the guy where they came from and he responded by pointing to his own bagged lunch. How cute is that? Another random act of kindness that went a long way.

I just got such a kick out of the fact that this guy even brings his own dinosaur fruit snacks to work, and that he shared them with Ty. So sweet. Thanks to everyone who goes out of their way to put a smile on Ty's face. It means so much to us.

Ty is doing well. He starts his next cycle of chemo later this week (switching from Temodar to Etoposide again) but for now he is tolerating his medication and his walking has improved. His left arm/hand is still very weak and spastic, but his leg and his core balance has improved tremendously. He doesn't need nearly as much support as he used to, and he can stand by himself if he holds onto something from balance. Some day he will walk on his own again, I just know it.

Finding Peace

2012-02-01T19:52:00.000-08:00

Today was a very long day at the hospital, but it was also a great day. I had my moments where I wanted to scream and cry for all of the children like the teenager who lost her leg or the tiny baby in his crib getting his first toxic infusion, or Ty, who screamed and carried on as he always does when it's time for the needles. But then it was time for Ty's bi-weekly weight and he gained a whopping TWO POUNDS! This has never happened before. When Ty was diagnosed in August 2010 he weighed 13 kilos, and in May he weighed only ten. Today he was 12.7 (28 pounds). We were elated. I hope he can keep it up! Maybe it's the corn on the cob.

Ty is finally able to enjoy his time at the hospital. His chemo is tolerable and he is genuinely happy playing games or arts and crafts in the toy room. The toy room is in the middle of the large waiting room and surrounded by glass walls. For over a year, I used to peer into that room and envy all of those children. I used to be so upset that my adorable little baldie was too sick to play. Too sick to even move. Today, we played Cootie, we played Trouble and we made a cowboy hat for Gavin (like the one that Woody wears in Toy Story). Ty is a sweet and thoughtful boy.

This afternoon we met with Ty's neurosurgeon, his wonderful nurse practitioner and his marketing team. Without sharing any premature information, I just want to say that Dr. Jeffrey Greenfield is on to something very big. He is doing amazing things in the world of pediatric brain tumors and we are so excited to be part of it. If you are aware of any child who has suffered or is suffering with brain cancer, please send them to Weill Cornell for a consultation.

As most of you know, I have always felt that I need to DO SOMETHING! That there needs to be more awareness for childhood cancer, and sharing Ty's story is just one teeny tiny way of making me feel better about this horrific circumstance. Lou and I always wanted to leverage Ty's experience in a really big way. How can we make "Gold" the next "Pink"? But at the same time, we are parents to a very sick little boy and we are overwhelmed. Teaming up with Weill Cornell on this project is simply perfect. I can't wait to share more information with you as things progress, but I just wanted to let you know how excited we are. We finally feel like we are ready to be more active toward the cause and it feels really good.

Tonight, my heart feels calm. Whether or not a good night's sleep is in my future is still questionable, but at least I am at peace. Goodnight everyone. XOXO from Ty and all of us.

Abracadabra

2012-01-30T19:36:00.000-08:00

Ty was so strong today! He has been very brave when it comes to walking. For the first time since October 2010, Ty stood without holding my hand for at least five seconds. It was all his idea, too. He kept letting go of my hand and I kept grabbing him because I didn't know what he was doing. Then he said "Look!" and stood still all by himself. Lou couldn't believe his eyes and his physical therapist today said he did terrific. Every day is different, and some are better than others, but today was great and we are so happy.

It's amazing how he always learns to accommodate. Today I took these pictures of him doing a magic trick. It's hard to tell, but he was having trouble holding the pot, so he ended up lifting his knee to help balance the "pot" and using his weak hand to hold it down while he created the magic flower. Abracadabra!

Gavin had fun playing with his favorite toys today, too. Toy Story is his absolute favorite. Toy Story legos, Toy Story puzzles, Toy Story figurines. Here is how we found Buzz and Jesse at the end of the day. Poor Jesse is hanging upside down from her string, with her hat pulled over her face. Gavin is one funny kid. Goodnight, everyone. Preschool for Ty and me tomorrow!

2012-01-29T21:32:00.000-08:00

Blogger always has problems. I wanted to attach this photo of Gavin to my previous post, but it wouldn't allow it. Here is a quick snapshot of what I was dealing with today. He took all of the toys out of his toychest to hide from me when it was time for breakfast. The day was off to a great start <yes, that is meant to be sarcastic>. Still, he is one cute kid and I am so blessed :) XOXO. Goodnight.

Corn on the Cob

2012-01-29T20:37:00.000-08:00

Eating corn on the cob is a simple, every day thing. That's why I am so proud to show you this picture! Most importantly, look at the left hand! Ty gripped the corn with his left hand and lifted it to his mouth without any prompting or assistance. His fingers are still in a spastic position, but the level of control he has is finally improving a bit! He had a great day today. He was strong, he was walking well and he was happy.

Gavin, on the other hand, had me dangling from the end of my rope all day. He has been saying "no" and defying me nonstop. I am so glad that he finally went to bed and is sleeping soundly :) He just had one of those days, I guess. I would say, "It's time for a yummy lunch, yay!" and he says "No, mama, it's not time for lunch! It's not yummy!" Okay. I give him a munchkin for dessert and he calls it a cookie. I correct him and tell him it is a mini donut, and he says "No, mama, it's not a donut, it's a cookie!" Okay. He asks me how old he is so I tell him he is two and a half, and he yells "No, mama, I'm NOT two half!" "You're not? How old are you?" "I'm FOUR!" he tells me. I took the two boys to CVS for a treat and Gavin was completely out of control. He refused to sit in his car seat so I had to physically pin him down each time we got in and out of the car. Then, people don't realize that Ty can't walk so I have to carry him while trying to get my giant two year old to follow me/hold my hand/listen to a small percentage of what I say. He kept dropping limp to the floor while I would try to pull him up and drag him across the street while onlookers worried that I was pulling his arm out of his socket. So embarrassing. It was just one of those unbelievable days.

I think it's fair to say that every one of us has had those moments with our kids, right? I swear, sometimes he gives me more stress than Ty's chronic illness! In a very normal way, of course. I certainly don't mean to complain. I am just sharing a bit of my every day life and admitting that sometimes the little things bother me too, even after all I've been through. As much as I want to practice what I preach and enjoy EVERY moment, it's simply impossible :) I am not amazing, I am normal. Ty is amazing and he inspires me to try harder to be better.

Twinkle Twinkle Little Star

2012-01-27T14:03:00.000-08:00

I am upstairs in my office, trying to get through paperwork among other things. I am 100% distracted because I hear Ty singing "Twinkle Twinkle Little Star" downstairs. Over and over again he is singing that song. I am crying little, happy tears because I just love him so much and I am so lucky to be listening to the most beautiful sound in the world right now.

Ty, your star will always be the brightest star in the sky as far as we're concerned!

Kids are so fun and so innocent. Even with all he's been through, Ty has an incredible sense of humor and a smile that could inspire world peace if only it could be shared around the world :)

All children deserve life. They deserve to grow up. God, cancer is such a terrible thing. Childhood cancer is simply the worst of all evils. How is it that we aren't even close to a cure? That babies keep dying every day? I believe there needs to be more awareness to create more funding toward research.

Ty's latest cycle of chemo is causing some nausea and vomiting, but Ty is otherwise doing well. I haven't noticed much improvement on his left side, but at least he is stable. His bloodwork is fine and we return to the hospital on Wednesday for another infusion. His next big MRI is scheduled for February 8th, so please keep him in your thoughts and prayers.

All of our love.

Kindergarten?

2012-01-25T19:25:00.000-08:00

I don't have much to say about today. I am still thinking about a conversation I had with the school district about Kindergarten. I dropped by to hand over paperwork for Gavin (because he gets speech therapy) and I was called in for a impromptu conversation about Ty. They just wanted to see how he was doing, but we ended up discussing our plans for the next school year. We were strongly encouraged to start Ty on-time and begin full-day Kindergarten in September. There are a lot of valid reasons for this suggestion, but I can't even swallow the suggestion. Not even remotely. Sure, some of the reason may be because the regular mommy in me can't imagine my baby going to school full-time, but it's mostly because he simply isn't ready. He lost a year of his life, so he is a year behind (not to mention his physical disabilities), and even though he would be in a special class I still feel very uneasy about the idea. Another tough decision we are faced with... I'm sure it will work itself out and Lou and I will choose whatever we think is best for Ty. Most likely, it will mean another year of preschool before embarking on Kindergarten, but that is yet to be finalized.

In the meantime, I was sorting through some recent videos and wanted to share the attached. It's just so cute. Ty has a habit of thumbing through the latest flyers and picking out the toys that he wants. He certainly doesn't need any toys, but he has fun doing it so we let him dream :) Here he is talking about how Poppa is going to have to go back to work so he can afford all of his latest picks.

Happy to be home

2012-01-24T22:46:00.000-08:00

I returned very early Monday morning, and the boys were still sound asleep. I peeked in on Gavin in his crib, then climbed into bed next to Ty. He woke up about an hour later and when he noticed me next to him he didn't say a word. Instead, he wrapped his arms around my neck, pulled me in right up against his face and fell back to sleep. I swear he was smiling, and of course, so was I. He slept so late, and for that I was grateful. At that moment, I knew how much he missed me and it was a beautiful feeling.

It was a wonderful weekend getaway. I needed to catch up with my girlfriends so badly, and they can make me laugh like no one else. I also needed to get away from the every day stress of being home with Ty and Gavin for a couple of days. I was happy to hear the boys were having fun while I was gone, and I got to speak to Ty a couple of times while I was away which really set my mind at ease. That's me on the phone with Ty :)

A number of my friends on Facebook shared a "parenting" post from HuffingtonPost.com today. Here is an excerpt that I especially enjoyed. I wish I wrote it. The author of this article, Glennon Melton, has three small children and she is expressing how difficult day-to-day parenting can be. Although I have experienced an entirely different level of stress being a cancer-mom and all that Lou and I have endured relating to those horrors can't be compared in this context, I have also experienced the normal but treacherous toddler behavior while waiting on line in Target or CVS and I appreciate this analogy.

"I think parenting young children (and old ones, I've heard) is a little like climbing Mount Everest. Brave, adventurous souls try it because they've heard there's magic in the climb. They try because they believe that finishing, or even attempting the climb are impressive accomplishments. They try because during the climb, if they allow themselves to pause and lift their eyes and minds from the pain and drudgery, the views are breathtaking. They try because even though it hurts and it's hard, there are moments that make it worth the hard. These moments are so intense and unique that many people who reach the top start planning, almost immediately, to climb again. Even though any climber will tell you that most of the climb is treacherous, exhausting, killer. That they literally cried most of the way up."

"Pain and drudgery" is a bit strong and a too negative in my opinion, but still I understand. It isn't easy, but I certainly wouldn't trade it for the world. I love my kids more than anything. Worth every step of the climb.

Ty is doing better, but not terrific. As you can see above, he is showing off how he can pull his left arm up with his stronger, right hand. He is trying so hard. I am still so angry for him because he was clapping and holding books and cutting paper - all of those two-handed tasks - with ease just over a month ago. I am impatient, I know, but I can't help it. He finished his seventh cycle of metronomic chemotherapy on Friday and he started his Temodar over the weekend. It has been giving him very bad indigestion, but luckily he still has a fairly decent appetite. In fact, we reincorporated another food into his diet: turkey roll-ups! The downside to the indigestion is that I haven't been able to get him out of the diapers since his incontinence last week (which is 100% better). I just don't want him to get used to that, but I can't afford to put him back in underwear until his diarrhea subsides or he will ruin his clothes. Hopefully this won't last the entire 21-day cycle like it did the last time.

Here's a funny side note. Gavin has been taking a toy to bed each night, but it is almost always a small Toy Story figurine or two. Tonight, he absolutely insisted on sleeping with his reindeer. This is a bouncy toy shaped like a reindeer that our friends Rudy and Lynda bought him for Christmas. He bounces on it around the house saying "Giddee-Yup!" Another funny thing... when I asked him what a horse says, he answered the same, "Giddee-up!" He's so cute. We spent the last two hours before bedtime wrestling today. It was so fun. We were both sweating. No wonder he passed out so easily even though his reindeer didn't leave much room in his crib. He was wiped out. I hope I can sleep just as soundly tonight. Goodnight everyone. XOXO.

Improvement and Mommy's weekend off

2012-01-22T08:33:00.000-08:00

Ty has shown improvement since his shuntwas reset on Wednesday afternoon, but we have to be patient. We had a long conversation with his doctoron Thursday because some new symptoms developed, but the plan is to give himmore time to recover and drain the build-up of CSF fluid in hisventricles. Over the weekend he was feeling muchbetter. I love/hatethis shunt so much!

His eyes are still glassyand bloodshot in the corners. At timesI caught him shutting them tight, but I think it was because thelight was bothering him. I asked him ifhe had pain but he said no. Then hevomited on Thursday afternoon when he tried to eat some noodles at lunchtime. This was a first in a couple of weeks orso. I was so disappointed, too, becauseTy was actually willing to eat the noodles, which was a very big step in ourattempts to expand on the list of foods he will eat. At the time it seemed as though it wastriggered by his very sensitive gag reflex. Later in the day, however, we were in a supermarket and he got sickagain. This time it seemed to betriggered by the fact that he ate ½ of a banana while we were shopping. He got sick soon after he finished. Again, I was crushed because he was eating ahealthy snack for the first time in ages and now he probably won’t want totouch another banana for months. Always a guessing game - I am thinking the vomiting may be unrelated to the shunt and hoping it was just a minor stomach bug. We'll never know, but as long as it doesn't happen again (and it hasn't) I'm sticking to that theory.

So, as always, there aresetbacks. And, as always, Ty is takingthem in stride. He remains happy through all of this, andthat makes Lou and I happy. We just haveto remember that he has been through hell and his recovery is going to be avery long one. But we remain confidentthat he will get there, and that all of this toxic treatment we are putting himthrough now will allow him to beat the cancer once and for all. He will be a bad-ass cancer survivor one daywho wears a tee-shirt “cancer fears me!”

I took the weekend off tospend time with some of my best girlfriends since high school. We all left the kiddies behind for amuch needed get together in San Diego! I was really sad to leaveTy and Gavin – but I got over it quickly :) Drinks in hand, delicious foods, lots ofdinner and endless laughs into the wee hours of the night was exactly what I needed. It's been way too long. Two of my best friends live on the West Coast and one is expecting her first baby so we all wanted to see her for her baby shower and show her how much we love and miss her. It has been wonderful. I fly back tonight, it was a very short trip - but well worth it. Today we want to take advantage of the sunshine and head to the ocean for the afternoon before heading to the airport. I am eager to see the boys tonight, but sad to leave my friends. Why couldn't we all live in the same town - on the same block - like we planned to do when we were younger?

I spoke to Ty every day, he is having so much fun with Daddy and his reinforcements (Nana and Poppa). Gavin hasn't gotten on the phone with me so I am especially anxious to talk to him and give him big hugs. This is the first time I left them both like this. It was very good for me. Friends are the greatest therapy.

Wine in hand - everything's gonna be alright

2012-01-18T18:32:00.000-08:00

I walked in the door late tonight - almost 8PM - and said "I'm gonna pour myself the biggest glass of wine right now." Imagine watching your child become paralyzed on one side of his or her body overnight.... or cross-eyed... or incontinent... or unsteady when walking... I know that Ty is not a perfectly healthy child but every time I am faced with this stuff, it is still equally stressful. For Lou, too. He was cursing his head off this morning when I had to go to the hospital today because he couldn't come with us.

I am over-the-moon happy to report that Ty should be fine. It turns out that his shunt needed to be reprogrammed. When we left the hospital after his MRI and chemo on Monday, the team didn't reset the valve. The shunt has a valve that is magnetically activated, so when he is getting magnetic imaging (i.e. an MRI), the settings can be compromised. That was exactly what had happened on Monday. When they checked it today, the shunt setting was 1.5. The maximum setting is 2.5 (which means it's virtually off) and the lowest setting is .5 (which means it is virtually open). Ty is always at .5, so to be set at 1.5 for more than 24 hours triggered NPH - normal pressure hydrocephalus.

"NPH can occur without a known cause, or it may be caused by any condition that blocks the flow of cerebrospinal fluid (CSF). The fluid-filled chambers (ventricles) of the brain enlarge to fit the increased volume of CSF. They press down on and damage or destroy brain tissue." (I pulled this desription from a website, http://www.nlm.nih.gov/medlineplus/ency/article/000752.htm).

So, bottom line, Gramps should be just fine. It may take 24-48 hours, but as long as the shunt was, indeed, the source of the complications... then he should be back to his normal self soon. I am jokingly calling Ty "Gramps" because NPH is something that typically occurs in older people. When we were discussing his symptoms; incontinence, lack of balance, glassy eyes and lack of mental focus, I felt like I was describing a Grandpa. His doctor agreed and said it was probably normal pressure hydrocephalus which is much more common among the elderly. God willing, he is right. The shunt adjustment should fix everything. I will keep you all posted. In the meantime, thank you so much for being so concerned for our special boy. We are beyond grateful for having each and every one of you in our lives... Your support means everything.

For a change, I think the good news and the wine will help me to sleep well tonight. XOXO from Ty and the rest of the Campbell family. Back to preschool with Ty tomorrow, Gavin on Friday.

Another unexpected bend in the road

2012-01-18T05:59:00.000-08:00

I'm getting a little sick and tired of riding down this terribly long, bumpy, windy and dangerous road, but we aren't even close to our final destination. That destination being Ty's return to his optimal health. This morning, I will be taking him back to the hospital to seek out answers for yet another issue that arose out of the blue yesterday.

Ty and Gavin were on their very first playdate in Pawling yesterday when - out of no where - Ty wet his pants. Ty never has accidents, but I tried to brush it off. This is normal, it happens to all kids once in a while. After we got home, he went on the potty several times, but then he also proceeded to wet his pants twice over the next four hours. I asked him why and he said it was because he couldn't feel it. On top of that, the corners of his eyes were becoming increasingly bloodshot. I was thinking he may have a UTI and imagined his eyes were just red from being tired.

This morning he woke with a wet diaper and his eyes are still red. He doesn't have any pain, thank God. His doctor at Sloan Kettering wants to see him because the symptoms could mean elevated pressure in his Central Nervous System, or something that may be interrupting his nerves in the spinal cord. So much for having the rest of the week off! He has PT this morning and we will be heading into the city afterward. I will be sure to update you when we return home tonight. Love to you all. Thank you for keeping Ty in your thoughts and prayers.

NED - Keep the good news coming

2012-01-16T20:16:00.000-08:00

Ty had a follow-up MRI this morning, which confirmed that there is no evidence of disease in Ty's brain (NED). Amazing news! We were 100% confident that this would be the finding today, which is why we didn't make a big deal about the unexpected imaging that was scheduled for this morning. Ty has been improving day by day so we were sure everything would be okay. Nonetheless, I am going on two hours of sleep last night because no matter how confident I feel, I can't control the anxiety that comes with every scan.

The MRI was ordered to see whether or not the bleed near his brainstem was dissipating, and whether or not the swelling had gone down. We needed to have this done in order to decide whether or not it was safe to start up Ty's Avastin infusions again. Ty's MRI showed some improvement and his bloodwork was extremely strong - like that of a perfectly healthy kid - so we went forward with the infusion. He is doing great. Our biggest concern now is his left arm. While his left leg has improved significantly (his walking is much stronger) his arm is at a standstill. He is able to lift it a couple of inches away from his body, but he has very little control of his hand/fingers and it is still extremely weak overall. Because he is so young and the bleed was an isolated incidence, Dr. Kevin is confident that Ty has the ability to fully recover over a long period of time but is could take months, even up to a year, before we know his full potential. The waiting is certainly the hardest part. We just have to be patient (what else is new).

Ty isn't phased nearly as much as we are. Of course, he gave us hell over getting his "tubies" put in, and then again when we had to remove them later in the day, but he was otherwise a happy boy all day and he was able to "hold still like Yo Gabba Gabba" for his MRI without anesthesia. So proud of him, as always. Here's the happy boy on is way home today. I don't know how his hat became so totally crooked :) LOVE THAT FACE and everything about him.... Love you all, too.

Oh... and we hope you like the new photo on the website. After all of these months, it was time to update his photo. Let us know what you think!

Take lots of pictures

2012-01-15T20:54:00.000-08:00

Gavin’s first day of school wasgreat. He wore his new skater shirt thathe picked out (because of the red – his favorite color) and he was sohandsome. When I was talking with histeachers before leaving, he made himself right at home among the toys. He actually called across the room“good-bye!” I was shocked and sad. He is growing up so fast, and I feel like Ilost so much of that precious baby time with him. In fact, whenever I snuggle him and call himmy baby he corrects me. Like the other night…he had a stuffy nose and I was holding him saying “my poor baby” and he said“No! Your poor big boy!”

When I waswalking back to my car the tears startled me. I didn’t expect that at all, but it was uncontrollable. I got in my car and sat there sobbing,loudly, before I was able to start the car and drive away. I cried a good, heavy cry. I felt so ridiculous because I was cryingalmost as hard as I’ve cried over Ty’s cancer! I’m actually embarrassed to admit this, but it’s true. I drove off having no idea what to do with myfree time. Ty was at home with thebabysitter and I didn’t have to pick up Gavin for over an hour. I tried to go to the store for a present becausewe had a birthday party this weekend (happy first birthday Baby Jake) but I gotlost! I swear, I was just swimming insad/happy thoughts over my boys growing up too fast that I went the wrong wayfor miles! Again, so embarrassing. I ended up spending the majority of my freetime driving through windy roads, wasting gas and getting lost in my crazyhead. In the end, I got a quick manicure– blue with sparkles for Ty. Next time Iwill have to get red for Gavin, but that felt too normal, and I was feeling anything but normal.

Gavin really is becoming a big boy. Now if I could only get him out of his diapers. We had no problem getting Ty out of diapers when he turned Gavin's age (2 years, 9 months) but Gavin is another story. The only way I can get him to even sit on it is if he is fully clothed, but I guess that's a start. Trying to get him used to the idea, anyway.

We had a nice weekend. Ty enjoyed himself at baby Jake's first birthday party, where he had fun making arts and crafts and reviewing the assortment of candy that was given in his goodie bag. Here he is eating his famous square pretzels.

Gavin had fun, too, in his own crazy way.

I spent tonight watching a bunch of old videos on my computer. I guess I am still being a sap over how big they are getting and wanted to hear their voices and giggles when they were younger. I decided that I didn't take enough videos, at all. There's never enough - I kept wanting more and more clips of them before Ty got sick. Of course I enjoyed watching them, but I also ended up torturing myself with each one as Ty got closer to the age of his diagnosis. The usual... I look for signs of cancer. I wonder if we missed something earlier. Thoughts swim around in my crazy head, like... "did he have a brain tumor when we were at the beach that day?" As if any of that would have made a difference.

One night, after a visit with our pediatrician, I videotaped him trying to sleep so that I could better explain his behavior. He was crying so much in the video. He told me he just wanted to sleep. He wanted me to hug him. I had NO IDEA that he was in so much pain. I couldn't figure out what was wrong with him, but I thought maybe he was tired, cranky and extremely restless. I never imagined that he had a f-ing brain tumor pressing against his brainstem. That when he laid down to go to sleep, the pressure became unbearable which was why he only had issues at night. I took those videos to show to the therapists at a sleep clinic. I'm so glad we decided to just take him into the emergency room. Funny enough, Ty slept perfectly fine at the hospital. Everyone must have thought Lou and I were nuts. When I think back to those first few days in the hospital it seems like it was a lifetime ago. A whole different world that we lived in before we learned about Ty's cancer.
We were scheduled to go to the hospital to start up his Avastin infusion this Wednesday, but we bumped it up to tomorrow since Lou has off. His doctor also wants to do a quick MRI of the brain to make sure everything looks good in the brainstem area and Lou, of course, wants to be there for the results. This is just a follow-up MRI to see how the bleed is healing, but each and every MRI is scary nonetheless. Please keep him in your prayers and we will be sure to post an update after our day at the clinic tomorrow.

XOXO. with all of our love.

School days

2012-01-12T21:09:00.000-08:00

Thanks to Aunt "T" and Uncle Harry for the awesome house!

It's hard to believe that Gavin is two years and nine months. We have enrolled him in his own "early three's" preschool class that begins tomorrow. It's at the same school that Ty attends (it couldn't be a more warm and loving environment) and the class is made up of five girls, plus Gavin. Oh Boy, this should be interesting :)

Ty was diagnosed when he was two years + ten months. I remember every second of checking him into the hospital, and it's very hard to imagine Gavin going through the same thing now that he is almost the same age. It makes me sick. I could vomit at any given time whenever I allow myself to think about it. Gavin weighs ten pounds more than Ty ever did (he's enormous for his age - 97th percentile) yet I still can't imagine my little baby having to be poked and prodded and put through the machines that Ty was during his very first hospital stay. Lou and I sat in the room while he was under anesthesia for his very first MRI thinking this was the scariest, worst thing we would ever put him through. We held hands for the entire hour, unable to talk to each other because it was so loud in the room, dying for it to be over. How little we knew about the life that was waiting for us. The horrors that we would face over the past year and a half. I pray with every ounce of my soul that those days are behind us forever because I would rather saw off my arms with a dull, rusty blade than watch Ty go through another serious surgery, or another round of high-dose chemotherapy, or another infection of the central nervous system. Have you ever had meningitis? I haven't, but the few people I know who have tell me that it is by far the worst head pain they ever experienced in their entire lives... and these are adults who remember what it felt like decades later. Ty had meningitis THREE TIMES in the past year and a half.

Anyway, my point is... I pray the only side effect that Gavin ever has to experience when it comes to cancer is his frequent bandaid envy. Sometimes when Ty comes home after getting his bloodwork, Gavin needs a bandaid, too. I believe this one here is a Captain America bandaid.

I can't wait to report back on Gavin's first day of school - ever! I had his backpack ready to go since this afternoon and I am very nervous for him! I know he will do fine, but I can't help but worry about leaving him alone with strangers for the first time. I'll probably just get a cup of coffee in town and drive around the block a bunch of times until I can pick him up.

In the meantime, Ty is doing AMAZING. His physical strength is phenomenal. When his PT came to see him Wednesday morning, she brought tape and bandages to make a splint for his foot after being so discouraged at how weak he was on Monday. She might as well have thrown them out the window! She was as excited as we were to see what a drastic improvement the steroids have made. Ty is doing really well. His foot is still weak (it drags and drops when he's trying to walk) and he has almost zero dexterity in his left hand, but the core muscles in his arm and leg have improved SO MUCH. He is a new kid, once again. The comeback kid.... I am not kidding.... this kid just keeps on going in the face of every challenge. God bless him always and forever.

As you know, Ty loves him some candy. We had to decorate a Campbell Family Snowman for his school and here is what he came up with all on his own. Of course, since he has so much trouble with his hands I did all of the gluing so it looks a lot better than if he did it on his own, but Ty directed every type of candy he wanted to use, and where he wanted it placed on his snowman. I am so proud! That is a pink starburst hat (with smarties for the rim), Gummy lifesavers for the ears, square pretzels for the feet and his favorite chocolate truffles for some of the buttons, among other things.

Good night everyone and God bless. XOXO love Ty and the rest of the Campbell Family.

What angry meds? These are happy meds!

2012-01-10T19:03:00.000-08:00

During our last day of school - just before Christmas break - I was an emotional wreck. Ty wasn't able to walk at all. He was so weak. No matter how hard I tried, I couldn't snap out of it and focus on circle time or story time or whatever was taking place. I did my best to hold back the tears in front of Ty and his classmates, but they came pouring down every time I had minute to stare at the wall, or look down at the floor. I was just so sad for Ty, and so scared.
Since then, Ty has been slowly improving. My mental state has been slowly improving simultaneously. But by slowly, I mean s...l...o...w...l..y... All of this changed today.

TODAY (!) Ty showed SIGNIFICANT improvement. Lou and I are so thrilled. At preschool this morning, his teacher asked me how his left side was doing. I told her it was getting better very slowly, but that he has improved over the past few weeks. Then I started to question myself as he began moving across the room more swiftly, as he was sliding down from his little chair onto his feet, as he walked all the way across the room with my help and as he used his left hand to hold down the paper while gluing. Could this be right? Is he that much stronger today or am I just overly excited over every little thing? When the kids went out to the playground at the end of class, I was sure of it... Ty was so much stronger than even the day before! He was walking well with much less assistance, and he can hold his left forearm up about three to four inches away from his body. Just yesterday that arm rested limp at his side. Woo Hoo! Go SuperTy! This is exactly what we hoped the steroids would accomplish.

As today progressed, his steroids kicked into high gear for the first time since we started this course. I am happy to report, however, that he has not been overly grumpy at all today! Instead, he has been in an incredibly good mood. The kid won't stop talking (OMG!!!), he is in super hyper mode, but all is good. He just wants to play, eat, play, eat, play... and party all night. He has been eating pretzels, chocolate and apple juice all day, and we managed to reintroduce one new food... chicken. He ate about 12 small pieces without any complaints. I hope tomorrow follows suit! Hopefully this will remind him of how much he used to like a variety of foods and slowly get over his fear of the different tastes and textures. I keep trying to remind him about how much he loves bacon and yogurt and apple slices - but so far he is not convinced. Tomorrow is another day.

He had so much energy today, I was wiped out around 5PM. I needed a short break from all of the noise and the constant Max and Ruby episodes in the background, and I came across the 1970s version of Dr. Seuss' "The Lorax" on DVR (I recorded it a while back). I put it on for Ty, and was so happy when he agreed to sit quietly and watch it. To my surprise and delight, that little four-year old boy really took it in. He is amazing. He couldn't understand why the villain kept cutting down the trees! He was horrified, in fact, which makes me so proud. He is such a sensitive, loving, perfect little boy. I hope he never loses his passion for what is good and right.

Sometimes I feel like the Lorax. Rambling on about childhood cancer awareness and the need to fund new clinical trials. I will forever be passionate about the cause, obviously, so I hope you don't mind my constant preaching. Tomorrow, Lou and I hope to meet with our pediatric neurosurgeon at Weill Cornell to discuss a campaign for the institution that would leverage Ty's story. We are very excited about this possibility and I will be sure to keep you all posted. Together, we can find a cure for cancer.

Goodnight everyone.

He's Baaaaack

2012-01-08T19:28:00.000-08:00

The Steroid Monster has made his appearance. It's only happened on a handful of occasions over the past two days, but when he feels his "angry med" kick in, our hands are tied. I have been walking on pins and needles around him, spoiling him rotten in an effort to avoid any fits because they can be so brutal. The littlest thing can set him off - like yesterday when I merely suggested we change him out of his dirty shirt - and then he screams and cries big, wet tears for what feels like hours on end. It's so hard to console him once he gets going. I am relieved he won't be on this for long. The daily dose is much higher than what it was in the past (twice as much), but luckily it will only be for a few more days. Not long enough to make his face puffy or to have the opposite effect on his muscle development like in the past.

On the plus side, I was hoping the new meds would affect his appetite, but so far the only new food he has incorporated into his highly minimal diet of pretzels (only the square ones), lollipops and gummies (only the red ones) is Lindor milk chocolate truffles. I can't really blame him, they are delicious.

Anyway, imagine a four-year old after six cups of coffee. That is kind-of what this is like. He is anxious, he is high-strung and he can't sleep. In an effort to get him out of the house and burn some energy, we joined our friends at their house in Vermont over the weekend. They have four boys under seven years old and Ty was very excited at the idea of spending some time with his friends. Lou and I were excited to let Gavin play in the snow for the first time, too. Last winter the poor guy was stuck inside our germ-free bubble and he barely left the house.

We took Ty to Vermont a couple of years ago, and he played on mountain of snow at the base of Okemo Mountain. When we returned there this year, I was totally shocked when he asked me about it. I can't believe he remembered that. Here he is back in 2009... He was such a beautiful baby.

So, naturally, we had to take him back there. He has been slowly getting stronger and he holds himself up well enough in a sitting position, so we thought he could have some fun in the snow. Unfortunately, it's been a warm winter here in the Northeast so there wasn't a "mountain" to play on, but Ty did try to make a snowman and Gavin had a blast flying into snowpiles and throwing snowballs at us.

I couldn't love these two more. They are my everything. We had a terrific weekend (thank you Charlie and Rachel) and I am so glad we went. Bloodwork tomorrow and again on Wednesday just to make sure his platelets are above 100. I don't think he will need a transfusion this soon, but we need to be very conservative with that just in case another bleed occurs. Poor Ty has been fighting me like crazy whenever he needs to go to the hospital or to the lab to draw blood. He kicks and screams and tries so hard to get away - it's impressive and embarrassing at the same time. It actually becomes a really big deal at the hospital because he tries to rip the needles out of his mediport. I need help from the nurses to physically restrain him and everything. I can only imagine what I am in for when they meet the steroid monster. Oh boy!

Goodnight everyone, and God bless.

So happy

2012-01-05T21:07:00.000-08:00

Lou had an awesome dream where Ty was walking on his own. I told him he is so lucky. I want to have that dream, too! But, I can wait. I will wait until it happens for real. I am so excited for him to have the freedom again. Some day he will be doing this again (Summer 2010). :)

He is doing well, improving slightly. We spent the day at the hospital today and his doctor thought he was improving a bit faster than expected, which is always good news (especially when I thought the opposite - it's hard to imagine that it takes so long to bounce back). I guess sometimes the brain compensates extremely well, and other times it is highly susceptible to even the most minute changes.

Ty's doctor prescribed a short, high-dose course of steroids. Decadron. This stuff has saved Ty's life on several occasions, but it also messes him up something awful. It causes extreme mood swings, he won't sleep for more than two hours at a time, and he will have a ravenous appetite that nothing can satiate. Of course, I am excited about the appetite only because I pray it will help him begin eating again. Everything else.. not so excited about.

The reason for the steroids is two-fold. Since we are holding off on his Avastin (bi-weekly chemo), the steroids are a substitution to help with any swelling in the brain that the Avastin was previously responsible for. In addition, it may be able to speed up the healing process in the brain stem area so he recovers movement on the left side more quickly. I hope so, not because I am impatient but because he worked so hard to build the little bit of muscle in his arms and legs so far, I hate for him to have to start all over again depending on how long this paralysis lasts.

If you are confused because steroids caused muscle myopathy in the past, you are right. Ty was that extremely rare case where the steroids caused his core muscles to completely break down and left him unable to even hold his head up. However, that was when Ty had been on them for months and months on end. This will only be for a week, so it will not have time to do that kind of damage. His doctor has reassured me of this over and over again.

We are also being very conservative with his bloodwork, giving a platelet transfusion for any counts below 100 as a safety measure in case there are any future bleeds. His platelets have been tracking rather low, however his white and red blood cell counts are strong so he will remain on the daily Cytoxin (the oral chemo he is still on).

Sorry for the boring, rather technical update. In other news, Gavin is doing great and he will even begin his own little preschool class on Fridays starting next week. I am so excited for him, my wild little crazy boy! I hope he makes some friends, because Buzz, Woody and Jessie aren't cutting it anymore. He needs to get out more :)

The tortoise wins the race

2012-01-04T18:52:00.000-08:00

Baby steps. That's all I ask for, and today I think Ty took several. His left arm is visibly stronger (he can lift it about an inch or two) and his leg is not so limp when he tries to scoot across the floor. There is some movement there, and better balance. I am thrilled. He had a lot more energy today, too. It probably helped that my mom and dad were here to visit, because he was so excited and wanted to show them everything he got for Christmas. They played non-stop all day.

Every physical challenge that Ty is forced to face, also rewards us with the kind of immense joy and pride that you feel only when you hear your child speak his first word or take his first steps. We get to watch Ty regain physical abilities that he has lost along this journey, and with each baby step Lou and I are overcome with peace, love and gratitude. There were times when he couldn't eat, speak, roll over or hold his head up. We are so lucky to have watched him slowly regain these abilities - beyond blessed - and we know that slow and steady wins the race so we are trying to be patient.

I believe he will continue to progress each day forward and I was relieved when I noticed a small sign of such improvement today. The rest of the pediatric team at MSKCC believes so, too :) The discussion at tumor board today, at least what was relayed to me, sounded very promising. The entire team of specialists agreed that there was no evidence of disease on his scan, that it was an unfortunate isolated vascular incident, and they suggested a few tweaks to his therapy in order to help prevent future occurrences. I know I already received this information from the official MRI report, but it's nice to have such validation from a wide range of top-notch specialists.

Tumor board is a weekly strategy meeting attended by a large variety of pediatric cancer specialists who meet to discuss patients and provide second and third opinions with regard to treatment options. This was the first week in a very long time where Ty was on the agenda. There was a time where his case was discussed every week for several months straight. As you all know, he likes to keep them guessing and we used to joke about how the board members probably roll their eyes when his name comes up every week. I wonder how many eyebrows were raised THIS week, when they saw the image of Ty's third consecutive clean MRI and heard how well he was doing despite his recent setback. I like to imagine several of the doctors gasping - maybe even falling off their chairs. Especially some of those who were involved in Ty's care when he was inpatient (but otherwise didn't care for him regularly) and didn't show any faith that he would ever come this far. I have to admit... little victories like these feel damn good. They wouldn't even recognize him today.

So, we will be holding off on one of his chemo drugs for about a month. Avastin is given to Ty every two weeks because it is a drug that seeks out and destroys abnormal vascular growth. This means, if a tumor were forming and trying to create a blood source to allow further development, the Avastin would prevent these blood sources from forming and therefore prevent new tumor growth. However, when the brain heals from radiation, the body creates new capillaries in the brain tissue in order to aid the healing process. The Avastin might be attacking these new vascular formations as well, and therefore causing minor intracranial bleeds. So we are taking a break and adjusting his dosing to make sure he is safe from any future occurrence. I still do, however, need to take him to the hospital tomorrow for a platelet transfusion (he is running low from all the other chemo in his system) and we need to pick up a five-day course of Dexamethazone (steroids). I'm a little scared of the steroid monster that Ty will become, but it's only for a very short time and maybe he will begin eating again as a result (at least the steroids tend to give him a raging appetite). We are trying the Dexa to see if it can reduce some of the swelling around Ty's brain stem and speed up the healing process before he loses more muscle mass and coordination skills.

I am actually very tired tonight and I think I'm going to fall asleep easily. I don't know why I would jinx myself like that, but I already did it so now I'm just keeping my fingers crossed. Goodnight everyone. Thank you so much for keeping Ty in your prayers.

Welcoming future worries

2012-01-02T21:52:00.000-08:00

Sometimes I talk tough. I try to be strong. I curse cancer and I pretend that cancer fears me. But in reality, I think you all know that I am plagued with worry. I am up all night. I bite my fingertips until they are raw and bleeding. Constantly. But it's okay, because my fear keeps me alert.  It keeps me capable of seeing all possibilities, evaluating them, analysing them and coming to terms with them. Today, I started coming to terms with a fear that I never really considered before.  And, I am trying to remember how lucky I am to even be burdened with a wealth of new fears. Fears about Ty's future and what it might bring.

HAHAHA. I know. I am supposed to be living day by day. I try! I do! But like I said yesterday, it isn't going to be an easy resolution for me to keep. In trying to keep with this mantra, I will share with you my short-term perspective on a potentially long-term fear.

As you know, Ty recently suffered from what is considered a late side effect of radiation to the brain.  There was an isolated incident - a "cerebrovascular accident" - that has left him almost paralysed on the left side of his body. Being the worrisome mother that I am, I began googling and reading up on a million studies that have been published about side effects of radiation.  Wow. There are a lot of things that can happen. Bad things, especially considering how young he is. And any one of these detrimental things can happen years and years after treatment is completed (vision and hearing loss, mental impairment, delayed cognitive development, stroke, seizure, intra-cranial swelling, neuropathy, etc.). These are all things that Lou and I didn't really have a chance to absorb at the time of treatment because we were so consumed with doing anything and everything we could to keep our son alive.

Despite all of this, I am grateful for radiation.  I am so glad that we were able to incorporate this into Ty's treatment because it saved his life and it killed his cancer once and for all. I know this to be true with all of my heart.  I will not sleep well for a very long time, and neither will Lou, but we are happy that we are worrying about Ty's future. Thrilled. There is not an ounce of sarcasm in that statement, we welcome the new worries with open arms and clenched fists. Don't even think about it. Leave him alone!

Lou and I have been emailing our doctors about Ty because we want a better understanding of what we can expect as far as his physical progression is concerned. We know that his recovery from the vascular anomaly will be a slow one, but how slow? And, how much will he recover? We can't be sure just yet, but we pray for a full recovery and we approach this latest setback with confidence. We are so proud of Ty. He tries so hard, and he makes us light up every time he says he wants to try walking again. He is one determined little guy. Our little fighter.

Thank you for all of your continued prayers and support.  Ty will be going back to pre-school tomorrow morning and he is looking forward to it.  I will be sure to report back on the fabulous arts and crafts he brings home :) His case will be discussed at tumor board on Wednesday and I will be sure to report back on any potential changes to his therapy as a result. I am anxious to hear the collective opinions of the radio-oncologists, neuro-oncologists and neuro-surgeons that participate. I know they all have as much faith in Ty as we do, but I still look forward to their reassurance.

Goodnight everyone. XOXOXO from all of us.

Resolving to travel light and pick more daisies

2012-01-01T18:12:00.000-08:00

Goodbye 2011. Ididn’t like you one bit. It was apainful year, but we are still beyond grateful for the miraculous year it wasdespite all of our pain and suffering. Therewere several months where we were living on borrowed time with our son. Then there were the triumphant moments ofsheer rejoice. I can’t even begin totell you what it feels like to welcome a new year while holding our special boyin our arms. So with that, I am excitedabout the new year ahead of us. A freshnew chapter in our lives that is filled with promise, hope and healing.

I feel like I’ve been carrying the weight of the world on myshoulders for well over a year. A greatfriend of mine (also a cancer survivor) often reminds me to live in eachday. Not to get so caught up in the pastor the future. I am resolving to try mybest, but I can’t make any promises. I’mso plagued with worry all the time and I’m just not sure how capable I am offreeing myself from the heaviness of it all. If I’m not thinking about Ty, I’m thinking about other children who arefighting cancer, and that is something I don’t ever want to stop doing.

I don’t want to put cancer behind me. Not ever. I want Ty to be cured forever, that’s for sure, but his innocent littlesoul was forced to endure pain that no person should and I want to makesure that we never stop fighting to find better treatments and prevent suchpain and suffering among our children (and our mothers, fathers, sisters andbrothers) in the future. I mentioned howhappy I am about the visibility St. Jude’s has had this holiday season and Ihope that we see gold ribbons on cereal boxes, yogurt tops, toys and apparel inSeptember 2012 and every year hereafter.

So, in rereading the above paragraph it sounds like I amcontradicting my resolution to travel lighter and pick more daisies. I guess I just need to find the balance. I hope I can find a way to remain passionateabout the cause while regaining some of my mental health slowly but surely. I need to salvage some of the fun, carefreeand kooky girl I used to be. I missher.

What I want for Ty this year: I want him to be able to color more than ascribble on a sheet of paper. I want himto be able to manipulate his toys without getting sad and frustrated. I want to see him proudly participate incircle time at school. I want him tohave a play date with a friend. I wanthim to grow taller than his baby brother. I want him to gain at least ten pounds and to enjoy food again. I want him to walk. Hell, I want him to RUN. We have all year to make these thingshappen. I pray that he doesn’t sufferany additional setbacks so all of these wishes can become reality for him.

Of course, more than anything I want him off treatment. I don’t want to check into the hospital if heruns a fever. I wish we didn’t have toworry about his platelets every time he gets a bloody nose (like the nasty onehe had this morning). I want to be ableto tell him that he doesn’t need giant needles stuck into hischest each week. But all of those thingsaren’t likely in 2012. He will be intreatment for cancer this entire year. But that doesn’t mean he can’t continue to improve. His red and white blood cell counts haveremained very strong over the past two months. Hopefully the daily medication is at the right dosing for Ty that willallow him to recover even while he remains in treatment. Hopefully this weakness due to intra-cranial bleeding will be the only major hurdle impeding on his recovery this year!

Ty’s weakness on his left side is still very severe. I am so sad for him when I watch him struggleto hold himself up in a sitting position, or when I see him use his right armto pull his left arm in a new position. When we ask him about his arms, he shows us that he can raise his rightarm “wheelie good!” but then he pulls on his left arm and says, “this one justnot work. It’s too weak.” It’sno surprise, though, that it gets me down way more than it gets him down. He struggles, but he still scoots across thefloor as best he can, and laughs out loud playing with his toys. He continues to enjoy life. Every minute of it. Let’s all learn from Ty. It’s not too late, the daisies arewaiting.

MRI Details

2011-12-29T20:38:00.000-08:00

Okay. Exhale. But don't get too comfortable, because there is always an ounce of uncertainty in the doctor's eyes. I hate that. Nothing can ever be 100% (I'll explain), but obviously no visible cancer on Ty's MRI is absolutely amazing news. We are so grateful and so relieved. Thank you all SO MUCH for your prayers and support. As always, it helped us through the anxiety and helped Ty remain cancer free. Six months! May he remain cancer-free forever. Thanks be to God.

We were told that what appears on the scan was most likely the result of an isolated incident where Ty had a small hemorrhage near the brainstem, causing stroke-like symptoms. The hemorrhage is believed to be a delayed, but not uncommon side effect from radiation. Although he completed his radiation more than six months ago, Ty's brain is still healing from the trauma and as it heals there is evidence of several small, sporadic bleeds within the brain. This is normal and expected. Unfortunately, when something like this happens in the brainstem area where Ty has already undergone so much... the effect can be more noticeable and it will take a long time for him to recover physically. Possibly two to three months before we see any improvement on his left side. So sad! Especially considering how far he has come, he was oh so close to walking again. This is a major setback with regard to his physical recovery, but we'll take it. As long as it isn't cancer, it isn't deadly, and it isn't permanent - we are thrilled.

Now for the tiny, invisible gnat that remains hovering in front of my face. Flying back and forth, too close to my eyes and in and out of my ears. The results from the MRI weren't delivered without a shadow of a doubt. There is still a possibility that what we're seeing is the early stages of tumor activity near Ty's brainstem, but our neuro-oncologist and neuro-radio oncologist were very confident that it was treatment effect - not cancer. They both agree that the slightly highlighted areas in the brainstem area represent swelling, not tumor, and that Ty will be able to recover from the side effects over time. However, when we ask "how do you know for sure that it isn't tumor?" the answer is simply, "we don't." That one comment in the context of an otherwise joyous and jubilant conversation stabbed me in the gut where it remains as a reminder that we aren't out of the woods yet. But... we are doing great navigating our way through the forest. Beyond great.

Several people have asked me what Ty's prognosis is now that he has had several clean scans. I'm not sure how to answer that question, and I don't think his doctors would have a definitive answer either. I am confident that he is going to beat this... that he has beat this... that he will never, ever, ever have cancer again. There are no documented cases like Ty's, so our doctors can't really be sure how his cancer will react to treatment. We follow protocols for similar tumor types, but there is always the question of whether Ty's tumor behaves more like a sarcoma (a type of tumor that develops from bone or muscle) or an AT/RT (a tumor that develops from brain tissue). His official pathology is a malignant rhabdoid tumor that originated from bone and later metastasized into the brain.

I read somewhere that an AT/RT patient isn't considered cured until they show clean scans for FIVE YEARS without any evidence of disease because recurrence is so common. That scares me to death, but what else can I do but hope and pray with every ounce of my soul that Ty has beaten this once and for all. That's it. Be happy with today and enjoy every minute I have with my special boys. And, in five years - four and a half, actually - I will finally shout from the rooftops that Ty is cured! I hope you are all still following us at that time and not bored :) That sounds so far from now, but when I think that it has been six months already I realize how incredibly fast time is flying now that Ty is feeling "bedda". Time stood still when he was sick. It feels like yesterday and I remember every excruciating moment. Now that he is better, the days are filled with fun and laughter and they are zipping by all too fast!! I need to take more pictures :) I am so blessed.

Thank you all, as always, for everything. I am the luckiest person on the planet. Today was indeed a good day.

Scared to death

2011-12-28T19:30:00.000-08:00

We got the call to confirm this afternoon. Ty's MRI is scheduled for 8:30AM tomorrow, which means we will leave the house around 6:00 so we can get there an hour early for anesthesia clearance. I feel so, so sick. I can't wait for tomorrow to be over, and I don't want it to ever come.

In the meantime, we have been passing time by playing with our new treasures. It isn't Christmas without a new Hess Truck (this one has a jet plane attached!), and Gavin loves this crazy bouncy reindeer toy that Aunt Lynda and Uncle Rudy found for him. He's obsessed, it's really cute. In fact, tonight he tried to pull him up onto his high chair so they could eat fish sticks together.

This picture was taken before Ty's weakness set in on his left side

Gavin, his crazy hair, and his Reindeer

We had a really nice day today doing ordinary things under the most extraordinary circumstances. Cleaning the house, playing games, opening new toys, building race tracks for our new Hot Wheels... but I can't help my mind from wandering into a whirlwind of worry and darkness. When I see how limp Ty's left arm is. When I watch him scoot over to his toys with less than half the strength and stability he had two weeks ago. Aargh! My skin is just crawling!!! I am scared to death. LEAVE HIM ALONE! Please don't let this be cancer. Anything but cancer. My poor baby boy. He should be walking by now. He should be building up his strength so he can play on a playground this Spring. He should be getting stronger every day, not weaker. It's just so f*#&ing unfair. Why is this happening to him? But, you would all be so proud if you could see him. He has an unbreakable spirit and he remains happy and giggly despite this setback. I aspire to show even a small percentage of the same strength, confidence and courage that he has. He is my superhero and he won't let this get him down.

Two of our friends drove up from the city to spend the evening with us and that was a tremendous help. It forced us to stay positive and to try and allow our minds to forget about tomorrow for a while. We stepped out for a quick dinner and I was relieved to talk about things other than pediatric cancer and MRIs over a delicious meal. Unfortunately, I want to throw up every last bite right now. Every time I stand up I feel disgustingly nauseous. I have a headache from involuntarily clenching my teeth all day. My stomach is cramping. I am such a wreck, I can't stand it, but I am staying strong for Ty. I share only smiles and laughter with Ty and Gavin because that is what they need to be surrounded by. Not my fears and my worries. I hold onto all of that until I have a chance to spill my guts here.

Colleen has upped the ante from 500,000 to one million angels. That's how many she tells me will fill the room tomorrow. One million plus one... two... three... That is what I envision as we leave our sleeping baby in the "cold room". That more and more angels are squeezing in as the door closes. That they fill every bit of air in the room and lay over my baby in a blanket of light. It gives me so much comfort, that vision. As Father Jordan said last Wednesday, "he is going to be okay."

We have received a few new gifts in advance of this MRI that I will be bringing with me tomorrow (along with the dozens of other items I bring to the hospital when I am most worried). A "miracle" star, a lucky ladybug from a little girl that has a great story behind it, and the most beautiful bracelet I have ever owned. My neighbor made it just for me and it is so special. It's a charm bracelet filled with saint medals and spiritual charms - some old, some new. It makes a lot of jingly noise, which I love, and I will add some of my own charms to it soon (including the "keep fighting" charm that I wear every day and the Saint Peregrine medal that I pin to Ty's clothing sometimes). All of these things help to bring me peace while we sit and wait for the results.

Ty and Gavin are so lucky and so loved. They have gotten some very, very special care packages this holiday season, and I want to take a second to thank everyone. I can't tell you how special it is to see Ty's face light up when a package arrives. He is always so excited and so grateful. One fun thing that was included in a great big package from friends in Texas - because everything is big in Texas ;) - was a package of wish paper. We had never seen this before. In the note, our friend suggested we use the wish paper on New Year's Eve, but I felt tonight was even more appropriate. We wrote several wishes down for a clean MRI tomorrow and always, we wished for a cure for cancer, Ty wished for "no more cancer" and, of course, candy. Then we rolled up the paper, lit it on fire, and "POOF" watched it float into the sky and disappear. Our wishes went up to heaven :) I truly believe they did!! Here's Ty participating in the fun. You can see a floating, burning wish up in the corner on the last photo. Ty was watching it float away in awe. It was really a lot of fun.

Isn't he looking like such a big boy!?! I am amazed at these pictures and I see him every second of every day! Before I sign off for the night, I want to leave you with these positive truths. I believe that Ty remains cancer free and that the MRI will prove just that. I believe that he is suffering because the daily chemotherapy is making him weak and that's all.

I believe in our love, and the power behind it. I believe that we can move mountains together. I believe that our souls are intertwined. I believe that he is a miracle and I am so happy he is mine.

I am off to go snuggle up to my sleeping boy, hold his warm hand in mine, run my fingers across his head and stare at his soft, peaceful face for the next five hours until we leave for the hospital. Love him so much. Thank you for all of your love and support.

Blessed

2011-12-26T19:05:00.000-08:00

We are so blessed and lucky. This Christmas was perfect. Ty and Gavin had the time of their lives and we had so much fun watching them. We went to Lou's parent's house for Christmas eve, then drove to my parent's house on Christmas morning. We were surrounded by family both days and we all shared a lot of much needed laughs.

The first two pictures are my handsome boys all dressed up for the holidays.

Despite his weakness on the left side, Ty has been in amazing spirits. Must be all the joy and celebrating that Christmas brings :) He has been so happy, and he looks sooo good. It's not just me, everyone agrees. The fact that he is happy and without pain or nausea helps me to feel confident that the MRI on Thursday will remain clean. It simply has to. I don't know what could be causing his setbacks, but I have to think that all of the heavy duty medicine we are pumping our poor little guy with on a daily basis can't help. On Wednesday his fifth cycle of oral chemo will be complete and we will begin the sixth cycle which includes Cytoxin and Celebrex in place of the Etoposide/Accutane he is on right now. Hopefully the switch in medication will help his strength to improve. Maybe we can even take a week or two off before the next cycle to help him recover.

BTW - Ty picked out the most perfect Christmas tree this year. Here it is on Christmas Eve, after Santa came for a visit. So exciting!!

There were some great presents under the tree this Christmas, but you all know that the greatest gift of all was hearing Ty's voice and laughter fill the room. We put out cookies and chocolate milk (because Ty thinks Max and Ruby were right - Santa probably prefers chocolate). In the morning Ty was so excited to see the footprints from the fireplace, the crumbs left on the cookie plate, the stockings filled to the brim and, of course, the presents!! He calls Christmas "chrismy" and he calls presents "pennies". Ty, you are my best Chrismy Penny ever. You, your daddy and your brother are my whole world. Below are the boys with their favorites. Ty got an old fashioned robot just like Max, and Gavin got a bunch of Toy Story toys, including Jessie.

It's always a little sad when Christmas is officially over. We saw my brother and family for brunch this morning before heading back home from Long Island and now we are watching Love Actually before deleting all of the Christmas specials and Christmas movies from our DVR.

Before signing off, I will leave you all with one of my favorite Christmas songs. It tells the greatest story ever told in a beautiful way. Fills me up with love :) Goodnight and God Bless.

We'll be okay

2011-12-22T22:36:00.000-08:00

Everyone is worried about Lou and I (and of course, Ty) after yesterday's post. I just wanted to send a quick update to let you all know that we are doing just fine. In fact, Ty had a better day today and that is a relief. He is still weak, but he woke up stronger than yesterday so we hope for a slow and steady return to normal. And, of course, a clean MRI next week.

Lou and I remind each other throughout the day that the CT scan showed no evidence of disease. We remind each other that Christmas is in two days and we are so happy to have Ty with us. We remind each other that no matter what happens, we have a plan and we will never lose hope. We are okay and we are happy. I promise :)

Tonight I am really excited about Christmas. I have a pile of toys all wrapped up and tucked away and I realized that we have just a couple of days until we will let Gavin and Ty loose under the Christmas tree. It is going to be so magical.

Come on Christmas Miracle!

2011-12-21T22:43:00.000-08:00

Come on, Christmas Miracle!!! Please don't lose momentum now!!! While I knowwhat an amazing and joyous miracle it is to have Ty here with us this Christmas(and that alone is truly a miracle), I am asking everyone to please keep Ty inyour prayers and ask God to allow his healing miracle to continue for many,many, many more Christmases to come. May his cancer never, ever, ever, evercome back.

We went to the hospital today for Ty's bi-weekly check-up and infusion. Wewoke up early so we could participate in a Christmas party that was being heldon the pediatric floor. When I took Ty to the bathroom before getting in thecar, he was unable to hold himself up on his own two feet. This is a drasticchange from yesterday, which is always alarming. I laid him down to change hispants and I saw him reaching over with his right hand to pull up his left arm,which was otherwise limp. He gave me a look like, "huh, that's weird"and I gave a calm but urgent call out to Lou to come and see what was going on.Ty was so incredibly weak on his left side this morning that the two of uscould barely focus the entire rush-hour ride into the city. It doesn't makesense. "What could this possibly be other than cancer?" is the onlynatural thought that was running through our heads over and over and overagain.

His doctor simply couldn't explain it. Once again, Ty has stumped everyone.Of course, they ordered an immediate CT scan to check for any tumor activity.Lou and I were sick all morning in anticipation of the scan. Time was standingstill. We put on our best smiles for Ty, and for the sake of Christmas and allof the hard work everyone was putting into the party, but I made eye contactwith countless people throughout the day who were wondering why my eyes keptfilling up with tears. I am still not over it. Ty, on the other hand, seems to have no idea. He was happy as could be today!! He had so much fun and was smiling from ear to ear all day. He has such an incredible spirit, I am so in love with that little boy.

The good news is, the scan didn't show any tumor. Partial exhale, thank you, God. There is one questionablearea on the brainstem, but we need an MRI in order to draw any conclusionswhatsoever about what's going on there. So, instead of January 4th, Ty's nextMRI has been bumped up to Thursday, December 29th. Christmas and all of the funwe have planned over the next week should help Lou and I hold it together untilthen. Not knowing for sure is better than hearing those words we are most fearfulof. I hate the uncertainty, but I hate bad news much, much, more. I am okaywith this for now and I am trying to remain confident that the scan on Thursdaywill remain clean.

I am so tired of playing this guessing game. I don't want to try and laughit off while saying things like, "Ty has broken the rules again, and noone knows what all of this means! His doctors just can't keep up with him<insert smiley face>." In reality, there's nothing amusing aboutthis. There is no smiley face to insert. Watching every symptom... tracking hisevery movement with scrutiny... banging my head against a wall hoping for anepiphany that explains it all (other than a relapse)... feeling so sorry forhim when I see him lose some of the independence he's been working so hard forbecause he can't get around again.... it's literally eating me up inside. Or,rather, it's more like I'm suffering from a very slow and deadly bleed thatkeeps me teetering on the brink of consciousness. I am losing it a little overhere.

When we were waiting for our CT appointment, we had about 1/2 hour to kill.I told Lou I wanted to take Ty across the street to Saint Catherine's church.I'm so glad we did. It was surprisingly warm outside and while I was sitting inthe pew I saw the priest who helped me back in May when I stammered through thechurch doors in hysterics. He recognized us immediately and was so happy to seeTy looking so well. I told Father Jordan about the upcoming CT and he blessedTy and told me "he's gonna be okay." I believe him. I do, with all ofmy heart. I know you all believe, too. Thank you for that.

Goodnight, everyone. Hoping to report that Ty is stronger tomorrow, or at least the same.
XOXOXOXOXOXO,

Anything but cancer

2011-12-19T20:22:00.001-08:00

Cancer is not welcome here. It can never, ever, ever, ever, ever come back. As I mentioned yesterday, Ty has been showing some physical symptoms that we haven't seen in a long time. Please, God, don't let it be cancer again. Anything but cancer.

I spoke to Ty's doctor first thing this morning and he believes the increased weakness we are seeing on Ty's left side is not related to new cancer growth - but that doesn't rule out the possibility. He feels that Ty is suffering from spasticity, which is becoming more visible now only because Ty is getting stronger. As Ty's muscles begin to regain mass and tone, the neurological weakness on his left side is becoming more noticeable. This spasticity is likely permanent, but also treatable with continued therapy. When I spoke to his physical therapist later today, she agreed that it would explain what she is seeing, and then she reassured me that walking again is still a highly attainable goal for Ty. And "he will get there, he will walk on his own again," she said.

Unlike an older person who suffers a stroke, when spasticity like this appears on someone so young it is hard to say where he will net out because there is still so much growing and brain development taking place. In fact, my doctor warned me that there will likely be additional neurological issues that present themselves as Ty gets older. I am sad and mad! But I'm also okay with that. Just the fact that we use the words "getting older" in conversations about Ty makes me rejoice in the miraculous fact that he is here. I have no doubt that Ty will continue to roll with the punches and amaze us with his strength.

Ty's doctor referenced two reasons why he felt confident that these issues aren't related to new tumor activity. First, because if there was enough tumor burden on Ty's brainstem to be causing weakness, he felt we would be seeing other symptoms at the same time (headache, vomiting, heartrate fluctuation or vision issues). Second, because I told him that Ty's hand was cramped closed all day, but semi-open and loose when he was sleeping at night. He explained to me how that would indicate spasticity because spasticity occurs when the brain is consciously trying to move certain muscles, but the muscles don't/can't respond properly. When I crawled into bed next to Ty tonight, I saw that his left hand was shut tight. Can you even imagine how scared that made me? I tried to open it and it snapped back closed. Again, I forced his fingers around my hand and I just prayed. I found myself repeating the phrase... "please don't let this be cancer, please don't let this be cancer, please don't let this be cancer," over and over and over for who knows how long. Eventually I let go of his hand and it fell limp, fingers open, no cramping whatsoever. A sign? I certainly think so.

Thank you all for your continued prayers and support. I'm going to try this sleeping thing again now.

Restless night

2011-12-19T01:25:00.000-08:00

I was exhausted last night so I went to bed early, without even picking up the house. Of course, that backfired on me because I've been up since two in the morning tossing and turning. Now I'm sitting in my living room surrounded by the mess that awaits me and wishing I was sleeping soundly.

I am worried, but not terribly. Ty's left side seems weaker than usual. His hand was cramped closed the majority of the day and he can't lift his arm as high as usual. I've been told he is going to have good days and bad days so I just keep reminding myself that it was a bad day as far as his physical progress goes. Praying that tomorrow will bring improvement. I was obsessing over him while he was sleeping and happy to see that when he is relaxed his fingers in his left hand are loosely open (there were times when his tumor was acting up that his hand would remain severely cramped closed at all times).

He is such a sport about it. It doesn't even seem to bother him when something like this happens. He just finds ways to accommodate and I am always so impressed by that. For example, when he was playing with his toys I noticed him lifting his left arm with his right hand to move things along and he did so with a smile. If he's not worried, it helps me to worry a bit less. Don't get me wrong... I will be calling his doctor in about five hours and I've already sent him an email for reassurance.

We have been so busy preparing for Christmas, I wasn't able to share any updates for days! Below is one of the Christmas photos we took of the boys. I just love the way Gavin is holding Ty's hand. These two melt my heart.

I went out to dinner in the city with a friend on Saturday night and had a great time. It was so nice to catch up and know that Ty is perfectly fine at home with his Nana for a few hours. How my life is finally turning around! It's wonderful. I am happy to step out from the crazytown that I live in most of the time and make pretend that I remember what it is like to be normal.

I am really looking forward to Christmas. It is going to be so magical this year. Even though I should be panicking because I have so much left to do, I could care less. Our tree is gorgeous and I just love this time of year. Everything will get done and I imagine this will be the best Christmas we've ever had.

At dinner I learned that a mutual acquaintance lost her daughter to cancer a few months ago. My friends had kindly conspired to keep this information from me (I was aware that the little girl was in treatment) but it came up in conversation last night. I ended up crying during my drive home, for her and for another little girl I know of who lost her life to neuroblastoma this week. There simply isn't enough being done to support new initiatives in pediatric cancer and it's disgusting. It makes me sick that there haven't been any major advances in thirty years! That children are following adult treatment protocols that are highly toxic and met with much less success. Lou and I will never stop doing what we can to help change this. In fact, we are talking with our neurosurgeon on Wednesday to discuss ways in which we can leverage social media and under served research to gain momentum for a few niche pediatric brain tumors (i.e. rhabdoid tumors). Some day things will be different.

Speaking of which... have you noticed all of the green posters? All of the amazing visibility Saint Jude's has this Christmas season? Every time I see a poster I smile from ear to ear. A photo of a beautiful baldy that reads "help to save her life". Finally. I have always been discouraged by how little is out there from a marketing perspective to support pediatric cancer research. I never understood it. These children are our future and the statistics are crushing! Pink is everywhere for breast cancer. When will there be similar marketing campaigns to supports the children? I think it will happen, and soon. Pottery barn was selling beautiful candles where all proceeds go to Saint Jude's and they were sold out before I could even get my hands on them! Well, that's not true, I got a hold of a store in Pittsburgh that had a handful left and I cleaned them out - had them shipped out to me. If you are asked if you would like to make a donation to Saint Jude's during your next checkout at the supermarket, CVS, Target, etc.... please do so. Please. I know things are so difficult right now, but as Mary Pallota says... you can always give a half a sandwich. Mary and The Guardian Brain Foundation has been there for us from day one and we simply adore her :) She has such powerful love for the cause and a perfect perspective.

Click here to see how one of my favs, Jennifer Aniston, is involved. The picture below isn't an actual link to make a donation, but I wanted to share an image of the types of posters to keep an eye out for this year. They are everywhere and I couldn't be happier about it.

Just one last update before I go. This afternoon I was researching AT/RT long term survivors (5 years or more) in order to see what their treatment protocols were and how long they continued with oral chemotherapy. I only found three so far... so unfair... but their stories only strengthen my hope. Ty will be among them, I just know it. In fact, there was one girl who shares his miraculous story almost exactly. She had MRSA meningitis, she had multiple shunt complications, she had metastases and she had lepto-meningial disease that was cured with radiation. Unbelievable. She is five years cancer free. That is just amazing. I hope I can find her parents to share stories and get some advice.

I am going to try and catch a few more hours of sleep before the household is buzzing again. Goodnight everyone, and thank you for your continued prayers and support.

milk and honey

2011-12-14T17:25:00.000-08:00

Today has been an extra mushy day. I have given Ty about 200 hugs and 1,000 kisses already, and the night is still young. I'm smothering Gavin with mush, too, but I have to chase him down and tackle him for it. He likes to put up a fight just for fun. Ty, on the other hand, has always been a love. He was born to cuddle and I swear to you his skin tastes like milk and honey. Strawberries and cream. Marshmallow fluff. Now do you see why I can't get enough?

I got word recently that Ty's next MRI will be on Wednesday, January 4th. When I looked at the calendar my jaw dropped when I realized that is just three weeks from today! I'm good with this. Three weeks is enough time between now and Christmas to allow me to enjoy the holidays without having too much anxiety over it... and it is close enough to New Year's that if I am starting to break down I have a worldwide excuse to let loose and blow off some steam on New Year's Eve before I begin picking my cuticles into a bloody mess and involuntarily tightening my shoulders until they scream for mercy.

Ty is doing well. The Etoposide isn't dragging him down too much - but he fights me TOOTH AND NAIL twice a day when I need him to swallow his Accutane (random, I know, but the high volume of Vitamin A/Retinol has been found to seek out and destroy new cell mutations - it's experimental but also proven to have some success).

Accutane is an extremely goopy, sticky oil that is only available in a capsule because it won't mix with liquid. Each dose for Ty is also such a small amount, that every bit of it it sticks to any type of syringe (which means I can't use Ty's belly tube because it sticks to the tubing and won't even wash off). So, what I started doing is carving a hole in Ty's favorite flavored fruit snacks, poking a hole in the medicine capsule and squeezing the oil into the hole. It worked well the last cycle (2 months ago) but this time he is over fruit snacks and ONLY eats pretzels. I mean, that's it. And... they have to be square shaped. The Rold Gold "Snaps" to be exact. Next week he will probably switch over to only yogurt drinks or string cheese, then only blue lollipops for a week and so on, but that's just to give you an idea of just how incredibly off his eating is. Damn chemo. It is a terrible toxin and I just can't wait until we can stop doing this -- or can I? I am terrified to stop treatment just as much as I am dying inside every time I give it to him.

My point is that he cries and fights and screams when I approach him with what we call his "vitamins" (technically, we aren't lying :) The only plus side to the fight is that he really gets a good workout kicking and screaming and carrying on. His left side is still so weak, but I do see slow and steady overall improvement. You all know that i expected Ty to be walking by now, but the new reality is that we are looking at several months. Maybe even another year before he is independently stable again. But he tries, he improves every week, and he is so happy about any little progress that it makes the rest of us realize how his perspective on life is better than anyone else we know.

To give you an idea of the progress he IS making... yesterday, in preschool, Ty sat at the table and he strung beads onto a pipe cleaner. This was the first time I have ever seen him do this in his entire life. You may remember he went through a couple of phases where he loved to make beaded jewelry when he was confined to his bed... but I always had to put the string through the hole for him. He picked the bead, I helped him string it, then he would pick the next bead. Yesterday, he did it 100% on his own. It was a triumph and he has no idea. I was so happy for him.

Here are a couple of funny pictures I took on our way out today. Ty is loving his hat, and Gavin looks like a gangsta.

I love these guys. Goodnight everyone, and thank you for all of your continued prayers and support. XOXOX - The Campbell Family

Remembering

2011-12-11T20:11:00.001-08:00

Today is a national day of remembrance. There is a worldwide candle lighting on the second Sunday of December every year to remember children who have died at any age of any cause. Tonight, Lou, Ty, Gavin and I went to the NYU hospital to light a candle for Remy. My dear baby cousin who lived for 95 days to teach us all how important it is not to take life and beauty for granted. As Pete and Mary would say... to Relish Every Moment You have.

So many friends were there to support Pete and Mary today. I am so amazed at how wonderful people are. I was especially happy to see an old classmate and soccer teammate, Kerrie. She lost her sister ten years ago and she came with her parents and her husband to light a candle in honor of Remy and her sister. Love was all around them and everyone.

To quote from my amazing cousin Pete (www.ourlittleremy.com)

We are lesser because:
We have a permanent hole in our souls that will never be replaced.
We are greater because:
We became parents.
We are greater because:
We have grown closer together as husband and wife than I could have ever imagined.
We are greater because:
We learned what real love really is.
We are greater because:
We learned the true meaning of life.

I borrowed this photo from Mary's sister. I lit a candle for Remy at NYU tonight, and right now I also have candles lit for Tanner Eichele, Ronan Sean Thompson and Angela Anna Leva (Fran, I didn't know, I'm so sorry). Below is a quote that I borrowed from Tanner's mom.

"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they passed away--you're not reminding them. They didn't forget they passed away. What you're reminding them of is that you remembered that they lived, and that, is a great gift." ~Elizabeth Edwards

This weekend I took Gavin with me to visit a WONDERFUL family who have done so much for us over the past year. While I was there they asked me how old Gavin was. He is two years and seven months but I automatically answered, "two and ten months." I know I did this on accident because Ty was diagnosed at two and ten months. I have been so preoccupied about that lately because Gavin is approaching that age. I am sick over the idea that a baby so innocent and sweet as my little Gavin would have cancer. I forget that Ty was so young when all of this started. And even so much smaller (Gavin is WAAAY bigger than Ty ever was). Why isn't there a cure yet? It's just sick.

I should have gone to bed a couple of hours ago but I can't. I'm in mourning tonight and it's a good thing. Otherwise my house is quiet. Ty has been absolutely amazing these days. Even despite the recent switch to Etoposide in place of the Temodar he has been on. In fact, the only side effect I notice right now is that he is sleeping very late - he wakes up after 9AM some days!! (can't complain there!). The other afternoon I watched him, secretly, as he played by himself for almost 30 minutes. He scoots across the floor on his butt (not walking yet), opens his toybox, and talks to his toys. Just like I remember doing in my earliest childhood memories. Oh..., how life is changing for me. All is good. So... very... good. And I have each and every one of you to thank for that. XOXO! Good night.

Christmas memories

2011-12-07T20:07:00.001-08:00

We decorated our Christmas tree tonight. It was so nice! I wish I was able to get some better photos - these are terrible - but better than nothing. Ty and Gavin hanging their first ornaments. Ty chose a spiderman ornament (although I think he is growing out of his obsession over superheroes just a little) and I gave Gavin an extra sparkley one that he was eyeing. Of course, it was broken just seconds after this picture was broken. I saw it coming which is why it's so blurry; I was jumping up to grab it right as the photo snapped. Ha!

I swear, almost half of the things I unpacked were gifts that we received last year, during our most difficult times. There were so many beautiful things that I was so happy to unwrap under these much happier circumstances. To all of you who were here for us last year - friends and strangers - I know I was unable to properly thank so many of you and I just want you all to know how grateful we are.

I came across a card in one of the boxes that was written by one of my closest friends. It was a simple, beautifully written note that was sent to console me. I cried like crazy after reading that. I don't know if they were happy tears or sad tears, I honestly don't, I just know that I am relieved and sometimes it takes reminders like that to help me exhale and relieve myself of some grief that was building when I didn't even know it.

Last year, everything at Christmas was a "last". I can't even begin to put into words what that feels like. Ornaments that Ty picked out were purchased so they would be a reminder of the child we were going to lose. I took endless videos. I saved everything he drew on. We met with our at-home hospice nurse and I stared at her with confusion. I thought, "What will she be doing when he is dying? Will she be rubbing my back, whispering kind words? I don't want her to! I don't want her here!! I wish she would get the hell out of here!!!" There was a piece of me that hated that nurse. I know that sounds so unfair and unrealistic, but I can't control the fact that I felt that way. It was what she represented, I guess.

This year, I am hanging angels everywhere because that's where I feel them... they are everywhere. I find more magic in the word "believe" because it has new meaning for me. My eyes are open. My son has beaten all odds and it is a miracle. The tumors that existed in his spine last Christmas disappeared and there is no real medical explanation as to why. The doctors simply don't know (but I do, thank you God). I don't know what tomorrow will bring, but I am certainly rejoicing over today.

XOXO

Those beautiful eyelashes

2011-12-05T18:13:00.001-08:00

Ty has the most beautiful eyelashes. It is something that people have commented on since he was two years old. So long and pretty, I wish they were mine! Well, they are mine, in a weird way, but I mean mine as in "on my face." They are just stunning. I am so happy they are still the same long eyelashes that he had before chemo took them away, before steroids made them freakishly long and curly, before chemo took them away again. Today, they are just normal. I was staring at them today and I realized that he has his real, true eyelashes back - and that they are so beautiful. His hair is softer again, too. He is looking really good. Really healthy.

So, I am happy. I am excited for Christmas. Ty is amazing. Gavin is amazing. I am the luckiest person alive. The only thing that's concerning is how tiny Ty is for his age, but who cares. As long as he is cancer-free for the rest of his life, we can always make up for all of this growing that he is missing out on due to treatment.

All of the kids Ty has known since he was born tower over him. Including Gavin, who is almost 2 inches taller. But I talked to his doctors about it and this is simply to be expected. Kids don't grow on treatment or after radiation, and we will just meet with an endocrinologist when he is six or seven years old to discuss options. It doesn't bother me right now. I am just so happy he is here and he is not in pain. I just can't wait for the day that he can get off the chemo. That we can remove his mediport. That he no longer needs to have GIANT FRIGGIN NEEDLES jammed into his chest every week or so. It's just so beyond what any four year old should have to endure. That's why he's SuperTy. Preschool tomorrow. Infusion on Wednesday. Love you all, and good night.

PS - I am LOVING the holiday season. Is it always this magical? I can't remember because I have been living in a fog. The clouds are clearing and it is indeed the most... wonderful time... of the year!

Climbing down from the bridge

2011-12-02T06:33:00.001-08:00

Thank you, Catherine. You are right, I need to pull away from the caring bridge before I want to jump off again :) I had a hard time sleeping this week, which was probably evident in my last post. I've been consumed with thoughts of some kids who I've known who lost their lives to cancer. I stare at Ty sleeping and I feel so incredibly lucky, and so guilty, and so scared of the possible reality that his cancer may come back. I don't believe it will, I promise. I do believe he is cured forever, and his amazing progress only helps me to know this is true; but it's only natural for my mind to race like it does. In fact, the thoughts and visions I have of all the other children is spiritual for me. As if I am somehow connected to these innocent beauties and I am lucky to know them.

Yesterday someone posted a long comment about her own struggles with infertility, and I appreciate how she shared her innermost feelings, I understand and can relate. There is a post traumatic stress syndrome that is associated with such painful life experiences. I am healing, but I won't ever fully recover. So thank you, for staying with me through all the ups and downs and always praying for my family. I don't know what I would do without all of my friends and family, old and new, who have shared this journey with us.

Ty is doing SO WELL lately, I sometimes second guess whether or not I remembered to give him his daily doses of chemo. This entire week he has been especially strong. His bloodwork is good this week, and he is scheduled for his next infusion on Wednesday. At that time, we will also switch his current chemo (Temodar) to start his next cycle of Etoposide.

He is becoming more and more physically active, and he is just increasingly HAPPY! Less whining, less resistance, less anxiety and fewer questions about his next "pointy" (appointment). He is sleeping very well with little or no medicine. And, a lot of his hair on the back of his head started sprouting this week. I thought it would never return because it has been so long since his last radiation treatment (4 months) but it finally looks promising. I think the areas where there is permanent damage to the hair follicles will be relatively covered by his other hair if it continues to grow in. I am so happy for him! He doesn't care, but someday he might.

Ty went to preschool Tuesday and Thursday and he was so happy to be back after all this time. In fact, he didn't want to leave! He cried so much on the way home Tuesday I had to pull the car over. He is participating more in class, and he is making friends. The girls, especially, are so cute. They have this natural instinct to nurture, even at three years old. When I get up to help Ty walk, they run over to hold his hands, too. They want to help. They want to sit next to him and help him reach for the paint or the crayons. It is just so stinkin' cute.

I feel with all my heart that Ty is going to grow up to be an amazing man someday. He is so special, I am already so proud of the little boy he has become. May he continue to make me beam with pride, so much so that I annoy my family and friends with my bragging :) He will do great things. I believe he is still here for reasons bigger than I am meant to understand.

Making Magic

2011-11-29T19:21:00.001-08:00

This is for you, Colleen. You never let me stop believing, even when we were given the worst news imagineable. You made all sorts of magic for me and for Ty, and you still do. Thank you for your pep talk yesterday. Some day I will take your advice and let go of the fear, but I just can't do it yet. I try! Keep sending me your magic and it will happen :)

Most of my sleepless nights revolve around the lingering fear. In addition to fear, I have a heavy guilt for being happy over the past four months. At night, I pore over stories on facebook and caring bridge. I know I promised I wouldn't do this anymore, but I keep doing it! I guess I am part of a world now that I can't escape and I don't want to escape. My eyes have been opened to just how many children are suffering with pediatric cancer and I need to know their stories so I can think about them and pray for them. I don't connect on a personal level because I am simply not strong enough to help, but at least I feel like I'm doing something simply by being aware.

When I hear about a child's recurrance after remission, I begin to drown in the greatest depths of my fear. It's my worst nightmare. When I hear about a family's devastating loss, I am hammered with tremendous guilt. And anger. I get so angry. Kids just shouldn't get cancer. There needs to be more research, more treatment options. When is a cure for cancer going to be found, this is ridiculous!?!?

These feelings I harbor are fierce and they are vicious. I am so blessed and so lucky. Sometimes I need to remind myself that these days are real, that Ty is getting better. I lived in a burning hell, but somehow I got out. My baby is still here with me and I believe with all of my heart that he will live a long, happy life. Reading about all of those who have lost their own beautiful and most special child makes me realize, "How dare I ever feel sorry for myself! For what I've been through!" Who cares! I'll always hate that Ty had to suffer, but who cares about my sorry self. I am a better person for all of this. If I were to lose him, I don't think I could ever be happy again and I would simply want to die. The constant worry or fear of recurrance sits in my stomach 24 hours a day.

First and foremost, I despise the thought of Ty having to suffer like he did ever again. I worry about that more than I worry about how I would survive without him. I have told God that he can take my arms and legs and abandon me in the woods to live out the rest of my life alone and helpless... I wanted it, I begged for it... as long as Ty could survive and be happy again. I guess it was easy for me to make that plea because if I lost him, that's what my life would be like anyway.

Tonight I am praying for all of these bereaved parents. How incredibly sorry I am.

Improved physical strength

2011-11-28T18:41:00.001-08:00

Since Ty has been on daily chemo - our new life over the past four months - I simply can't figure out the "rhythm" of it all. My instincts are always challenged because I don't know what causes Ty's bad days versus his good days. I can't figure out why one day might be so much better than the next. Today was a really, really good day. I hope tomorrow follows suit, but I wouldn't be surprised if it doesn't.

Today, Ty had an appetite. It was wonderful! Considering he ate nothing but rice puffs over the past three days (which are only 25 calories per serving) I was so excited when he announced that he wants an ice cream cone this morning. By 11:30 I decided it was close enough to lunch time to get ice cream. But first, I told him, he had to have some lunch. I never thought he actually would, but I was trying to plant a seed. We ventured off to The Red Rooster Drive-in (eat your heart out, Nancy) and I was completely shocked when he said he wanted to eat a hot dog first. He had two bites before he dived into the french fries dipped in ketchup. After one french fry (it takes him five minutes to eat just one), he moved on to one and a half chicken nuggets before saying.. "Hey! What about my ice cream?" One vanilla cone with rainbow sprinkles, please! He ate about 1/6 of it. I know this doesn't sound like much, but OMG - this is a HUGE meal for Ty. He never eats like this. I was so excited. This continued until he went to bed tonight. He ate more chicken nuggets for dinner (I ordered another one "to-go") and some corn on the cob. He snacked on sour patch kids and nerds. He had animal crackers for dessert. It was amazing.

His physical therapist came at 4PM for their regular session. I was upstairs at the time, but I was listening the whole time in case she needed me to join in during therapy. Instead of the usual resistance, Ty was in great spirits. He had a great day with his therapist because he didn't fight her on everything. He actually stood for almost 10 seconds without any support, and he took two baby steps toward the couch 100% independently. These are both very big "firsts" for Ty, and I was almost in tears. Lou and I are always so concerned at how slow he seems to be progressing, but today was the opposite. I was so impressed. Later tonight, I let go of him and had him standing on his own for a few seconds. He was scared, but afterward he said "Call Stephanie (our wonderful PT)! I want you to tell her I standing!"

Like I said, tomorrow may be the complete opposite. It happens all the time and I don't know why. He is scheduled to return to preschool tomorrow after several weeks away and I am really hoping for another day filled with energy. I want him to be excited to return to school - I know I am.

Goodnight, everyone. Thank you so much for your love and prayers.

JETS Jets Jets Jets

2011-11-27T18:47:00.001-08:00

Today, Ty went to his first NFL football game. The Jets, of course! What a way to end this incredible weekend. We have more and more to be grateful for with every passing day. Today was a day that will live in our memories forever. MetLife (as in, MetLife Stadium!!) awarded Ty complimentary tickets to the game. Little did we know what incredibly special arrangements the company had made for us. We had the time of our lives.

In fact, a great friend and past NYC roommate of mine recently joked that Ty is going to have to "get over himself... we get it... he's great..." Shep, you are right. I pray that some day I'll have a hard time explaining to Ty that this is not normal and should not be expected. :)

Here he is, once again, being a super little badass psuedo-celebrity.

First, MetLife provided us with passes to stand on the sidelines pre-game. When we picked up the tickets we didn't actually think our feet would be touching the same turf that the JETS play on... but indeed it was! Defensive players Marcus Dixon, Sione Puoja and David Harris came over to talk with Ty during their warm-ups. So did Defensive Assistant coach Jeff Weeks (what a nice guy) - he said "let's see if we can win one for this little guy." Which, by the way, they did! It was a nailbiter, but the Jets won!

Personally, I was eyeing Mark Sanchez the entire time (what can I say?) but he was too busy warming up for the big game.

Yes, that's Mark Sanchez

However, my sister-in-law's favorite Jets veteran, Wayne Chrebet also stopped by to talk with us. Wow, was he the most thoughtful man - and so cute. Before the Jets, he had played for Hofstra University on Long Island so of course I was smitten, too. He asked a lot of questions about Ty because he is an advocate for pediatric neuro-disorders. He was so thoughtful and kind. Here he is talking with Lou. He might be the ONLY football player we saw in person who didn't absolutely TOWER over us.

Once the game began, we were treated to amazing seats at the 50-yard line and full access to the coaches club. It was outrageous. There was tons of food, and there was even a candy bar that had everything Ty could ever ask for. It completely made his day. Here he is with a selection of the candy he was eating (smarties and gummy bears).

Since he is only four years old, I often worry about whether or not he is going to have a break down and start whining to "go home." To my surprise, he enjoyed every minute and watched the entire game. And it was a really, really good game. We all enjoyed it without any major issues. At one point I had to take him for a walk around the stadium, but I didn't care because I was happy to see the new stadium (I haven't been to a game in over five years). It is so nice. Very different from the old stadium I remember.

Ty has been through so much. I cherish moments like these when he gets to feel special. He is our most precious gift. I try to enjoy every single moment; every sound and every breath that comes out of his mouth. Oh, and could the weather have been more perfect? I don't think that was coincidence or luck, either.

Thank you to everyone who helped make this day so special for Ty (Catherine - I love you so much). Goodnight everyone. I hope you had a wonderful holiday weekend filled with blessings.

The dishes can wait

2011-11-26T18:16:00.001-08:00

My house has been turned upside-down since Wednesday. I am not usually comfortable with this. However, over the past few days I've tried to let time with all three of my boys take precedence over ignorance in the sink. We played with Play-doh in every room of the house, we finger painted, we did sticker art on the floor (and our faces), we went to the tree farm and "tagged" the tree we will cut down in a week or two, we reintroduced the Elf on the Shelf to Ty and Gavin, we ate late lunches, even later dinners and dessert for breakfast. Right now I'm surrounded by a sea of toys while Lou and I watch Two and Half Men. Who do we think we are? Just watching senseless TV and unwinding with a glass of wine? This is great!! These carefree crazies probably won't last past Monday, but I am loving it while it does.

It should always be fun like this. Given all we have been through, I should be living every day to its fullest, but the truth is... I still get totally stressed out and caught up in the small stuff. I don't want to. Tonight I was listening to Gavin singing in his crib while reading facebook updates from several cancer families. So unfair. It's why I remembered to focus this post on how lucky I was to spend Thanksgiving weekend at home having fun with the boys.

So, even though I forget to heed my own advice sometimes... think of this adorable picture of Gavin and try to remember that the dishes can wait.

PS: To Marilyn - who has done so much for me and my family. I hope you had a wonderful, fabulous birthday.

Thankful for so much...

2011-11-25T10:45:00.001-08:00

Handsome boy on Thanksgiving

We are all so thankful that we didn't have to spend this Thanksgiving in the hospital again. What a relief! Ty's latest cultures are still negative, too, so we resumed his chemotherapy this morning and he is doing well.

We spent the day at Aunt Debi's house yesterday, and during the ride home I asked Ty once again to tell me what he is thankful for. He said "presents". No surprise there. Then, he really surprised me. He said, "I'm thankful for my pointies". Ty calls an "appointment" a "pointy".

"You mean, you are thankful for your appointments?"
"Yeah!" he said with excitement.
"Your appointments with your doctors and nurses?"
"Yeah! I'm thankful for my pointies, too!"

I realized at that moment, that he gets it. He knows how serious cancer is, and he knows how important his visits with the doctors and nurses are. Even though he hates being there, and it hurts, he is still grateful. He is becoming so smart and so mature in his four short years. I am so proud. And, of course, eternally grateful.

This year, I am thankful for:
- Ty's miracle
- my family, always.
- 2 consecutive clean scans. Keep 'em coming!
- everyone who reads this blog or supports Ty otherwise
- your countless prayers, well wishes, thoughtful gifts and positive thoughts
- Amela, our beloved babysitter
- the influence Ty has had on others so his suffering holds more purpose
- Daniel, Tom, Sue, RaeAnn, Christine and Allie - Ty's loving nurses
- Dr. Kevin DeBraganca, Dr. Jeff Greenfield and Dr. Vijay Ramaswamy, also Mary, Maria, Cheryl, Vanessa and all of the pediatric neuro-oncology team at MSKCC
- countless meals from my friends and neighbors, I don't know how my family would have survived otherwise :)
- The Guardian Brain Foundation, Make a Wish, The Robert Manzoni Foundation, The Michelle O'Neill foundation, Friends of Karen, Cookies for Childhood Cancer, The Iron Riders of NY and so many others who have given so generously
- the support of our community, including "Ty's lollipops"from our friends at the bank, special care from our local pharmacist, Get Well cards from the students at Pawling elementary and the "pajama day" party for Ty at the Sunshine School
- all of the special gifts that have been sent to our home - both for Ty and for me. We will truly cherish them, always
- the words of encouragement posted to Ty's blog and his facebook page
- the Fordham football team, for adopting Ty through the Friends of Jaclyn foundation
- the most amazing, unique and memorable experiences that have been arranged for Ty over the past year (i.e. meeting Spiderman and Derek Jeter!! a fly-by of Manhattan during Ty's first flight!! an anonymous delivery of 365 balloons on his anniversary!!)
- reconnecting with old friends, and making so many new ones around the country
- spending this Thanksgiving home with family, and preparing for Christmas for a healthier, happier Ty who is NOT on hospice care

Wooo Hoooo. How Thankful we are! Lou and I spend a lot of time today reflecting. We read the blog entries from November and December last year - some of our darkest days - and we cried about the pain and suffering that we all experienced. Especially Ty. We cried for all of the other children we encountered since last August. We cherish every single day and we are grateful for every smile, every word, every mess our kids make.

Written below is Lou's beautiful Thanksgiving poem :)

Thankful - by Louis Campbell

I am thankful he is alive

I am thankful he can hold hishead up

I am thankful he can breathenormally

I am thankful he can see straight

I am thankful he doesn’t havehead pain

I am thankful he can wiggle histoes

I am thankful he can eat and drink

I am thankful he is home

I am thankful he is smiling

I will be thankful when he canwalk

I will be thankful when he can goto school by himself

I will be thankful when he andhis brother can wrestle

I will be thankful when hegraduates

I will be thankful when hebecomes a father

I was thankful yesterday

I am thankful today

I will be thankful tomorrow

A false positive. WHEW~!

2011-11-23T19:23:00.001-08:00

What a crazy week this has been, and it's only Wednesday. As I mentioned, Ty was running a fever on Monday. His white blood cell count was elevated, specifically his ANC which is usually more indicative of a bacterial "bug" rather than a virus that might be causing the fever. Given we were on a plane home from Mexico on Sunday, if there was something in the air it would certainly make sense that Ty would catch it given his poor, broken down immune system.

So, of course, I brought him into the city for cultures and an exam on Monday afternoon. He was given a broad anti-biotic that is geared toward a wide range of bacteria, and we went home. It was a long day spent in traffic and in between the busy hospital walls. Ty was a trooper.

The next day (Tuesday), we had to return for his chemo infusion (Avastin - which he gets every two weeks). He was 100% better. No fever for over 24 hours, he was feeling great except for a small bout of diarreah. I was warned the day before that he would probably have symptoms in his digestive system if he was fighting any sort of bacteria in his system. The cultures, which were drawn 24 hours before, had so far been clear (meaning, nothing grew back on the blood samples) so no one suspected that he might have an infection in his bloodstream. Another long day at the hospital -- the 3 - 4 hour drive round-trip was a bit more exhausting the second time around -- but we had some nice quiet time together, we shared a lot of smiles and jokes, we read books and played games while waiting in the hospital and it was a pretty good day regardless. We kept the needles in his mediport overnight so the only real torture for Ty was having them removed at the end of the day. The nurse was great, she did it super fast and careful, and after a few tears we were on our way.

This morning our phone rings at 7AM. Immediately, I know it must be his cultures. He has an infection, doesn't he? The familiar accent of the German fellow on the other end of the line didn't even have to continue to explain... I know the drill. I waited to talk to our trusted nurse practitioner to get an idea of what to expect before leaving so I could prepare.  No surprise to us, she said a 72-hour hospital stay was most likely in our future. No Thanksgiving again this year.

Lou and I spent the morning packing up for a hospital stay. We called our families and "cancelled" Thanksgiving. We figured out where Gavin would be staying and packed up all of his essentials. It was depressing, but still we were/are thankful. Thankful that Ty was feeling well despite the positive culture. Thankful that he hadn't had a fever for almost 48 hours (a very good sign when fighting infection). Obviously, most thankful that his hospital stay wasn't tumor-related. My boy is still cancer-free which is way better than his prognosis was last Thanksgiving. Not a single oncologist would have believed Ty would even be with us this Thankgiving. So yes, we are beyond Thankful.

I don't typically mind the drive into the city. After living there for almost a decade, I am very comfortable there and often have thoughts of what it would be like if we never left for the burbs. There is so much that I miss about it. What a great life I had there. Not as good as it is now, thanks to my amazing children, but still... it was great. Anyway, my point is that on the contrary, today I absolutely dreaded going into the city.  The Wednesday before Thanksgiving?!?! The absolute WORST day travel day of the year?!?! The good news is, I was lucky enough to make both a traffic-laden trip INTO the city, as well as a traffic-laden trip HOME today. Let me explain :)

It takes time for bacteria to grow on cultures. And even more time for the lab to figure out exactly what kind of bacteria is growing. At the time we were called, the team saw both "rods" and "cones" growing, which is likely indicative of a staph infection. As some of you might remember, Ty has a very, very complicated history of several very serious staph infections in both his bloodstream (MSSA) and his CSF (MSSA, MRSA, Candida - not a staph but still!, etc). So, we don't want to take any chances with this. However, by the time we arrived at the hospital the infectious disease team was able to better identify the type of staph that was growing, and it turns out that it was not nearly as serious as the bacteria we have dealt with before. In fact, they felt that it was most likely a contaminated sample because the type of bacteria they found usually sits on the skin and is very rarely found in the bloodstream.

Long story short, we were given a pass to go home. At least until tomorrow. They drew more cultures today and they will be monitored. If anything grows on the new cultures over the next 24, 48 or 72 hours, we will have to return... but Lou and I were happy to take our chances and we smiled in traffic the whole way home. NO! Thanksgiving will NOT be cancelled this year :) Tomorrow I will post a list of the things I am most thankful for. I will try not to bore you too much, but I think you know it will be a very long one. It's been a long day and I think I am actually going to fall fast asleep the second my heads hits the pillow. Which is right about now... the wine helps :)

XOXOXOXO. HAPPY, HAPPY, HAPPY THANKSGIVING!!
PS - topping my "thanks" list tomorrow will be all of you, and your neverending prayers. Love you all so much.

Uh oh. Fever.

2011-11-21T19:20:00.001-08:00

Ty was running a low grade fever this afternoon. For anyone else, it would have meant Tylenol and maybe the rest of the day in bed. For a cancer patient in treatment, it means a trip to the hospital. These are the days I wish we lived closer.

I was so worried about him for a while. He was just so lethargic which always raises concerns about hydrocephalus or shunt malfunction. I had tremendous guilt knowing he probably contracted a virus or something on the plane. I called his team before leaving and asked for permission to give him Tylenol before the ride in because he had been whining and moaning in his sleep non-stop for three hours already. Although they were reluctant because they wanted to see what he would peak at (at the time he was less than 101), they said it would be okay. I'm so glad they allowed it, too, because by the time we arrived he was returning to himself again. His eyes were still glassy and he told the nurse he still felt "yucky" but that he was definitely "feeling bedda". He hadn't eaten or drank anything all day so they immediately accessed his mediport and put him on fluids. This requires two huge needles through the skin in his chest - which he does NOT handle well - but all I could think about is how nice it is that he only has to suffer through this procedure an average of once a week now, instead of what he used to endure. They ran all sorts of cultures (results from which take at least 24 hours) and they checked out his blood counts.

His regular doctor isn't in clinic on Mondays and the one we saw today doesn't check on Ty frequently. I prefer to only see Ty's primary doctor because I love him and he is familiar with Ty's complicated history, but I still liked today's doctor a lot because he is very thorough. It can get overbearing, but at the same time I prefer when no stone is left unturned rather than being rushed out the door. I have had way too many bad experiences when assumptions are made. The doctor told me that Ty is truly an amazing kid... that he doesn't see many kids like him that can really communicate how they are feeling and converse with the medical team. Ha! I would have never thought that Ty gives that impression with the way he usually shuns everyone who tries to talk to him, but hey... I know he's amazing and I'm so glad he does, too. :)

His CBC was amazing. Like that of a perfectly healthy kid! The only thing that indicated a possible infection was the fact that his ANC (his neutrophils - which are the bacteria fighting white blood cells) were very high. That elevation shows his body was/is fighting something, but the team wasn't too concerned. They gave him a 24-hour IV antibiotic and we have to return tomorrow for another CBC, another dose of the antibiotic, and for his regularly scheduled infusion of Avastin anyway. In the meantime, they sent us home on a pump so he basically gets his IV fluids over night without any hassle. He was feeling so much better after getting those fluids, he even asked me to stop for a corn on the cob at the KFC drive through on the way home. It's the only thing he ate today, but I'm just so happy he ate. Whatever the King demands....

Tomorrow will be another long day of back and forth at the hospital. Due to the fever, I am going to skip YET ANOTHER day of preschool (so disappointed), but at least I can get in and out of there earlier which means I won't have to cancel his occupational therapy in the afternoon. Hopefully.

Ty is sleeping soundly now, and my fingers are crossed that he can maintain that throughout the night. I kind-of already know this is out of the question. When the Tylenol wears off, he will most likely be awake and uncomfortable. With my luck, those types of things usually occur around the time that I am finally dosing off because of my endless insomnia. So, perhaps you will hear from me again around 3AM - if he allows me time to go online during Max and Ruby or whatever other Nick Jr. program he chooses to watch. He probably won't because when he's sick like this he prefers I cradle him on my lap :) Lucky me, really. I love him so much, I don't mind our alone time in the middle of the night anyway. As long as he isn't suffering.

When we left for the hospital I brought my emergency overnight bag and expected I would need it 100%. In fact, I cried a bit because I was afraid we would be spending our second Thanksgiving there in a row. When I quickly searched through the essentials I was happy to see that it still had a few mini bottles of wine left in there, though ;) Of course, I was even more happy that I didn't end up needing to use it. I can't remember if that has ever happened before. If I was prepared to stay inpatient but then I didn't have to. Oh, how things are changing slowly but surely. Thank you, God. And thank you, everyone, for keeping tabs on our special boy. He is such a love.

Healing in Mexico

2011-11-20T17:49:00.001-08:00

Home sweet home. It was a short trip, but well worth it. Lou and I never expected Ty to have as much fun as he did. At home, he is very, very reluctant to get out of his comfort zone. He would hardly ever set foot in a pool unless he was forced to, he doesn't like to be outdoors (especially in the sun since his skin is so sensitive), and he doesn't like crowds of people he doesn't know. We came prepared with DVDs so he could watch them outside on a lounge chair. Books to keep him occupied. A few favorite toys. We thought we have to bend over backwards just to get him to sit outside with us for more than 10 minutes at any given time. Boy were we wrong! Instead, he was saying "More swimming! More sandcastles! More walking! More FOOD!?!?!" He had at least one filet mignon every day - my prince. I cried so many happy tears. He was like a new kid. It was another incredible turning point on his road to recovery.

Several things happened during our trip that could be considered coincidence, but I think otherwise. We arrived late the first night, and Ty's star was shining so bright down by the ocean. We were told there was a long streak of terrible weather before we arrived, but we had nothing but clear blue skies every day. One day, there was even a cloud in the sky in the shape of a T!! I have proof and I will post the photo soon :)  Another day we sat near a family that had children the same age and I noticed the woman was looking at Ty a lot (most people do, because they are curious. I don't mind at all). It turns out I sat next to them again at dinner and she began asking me about him. She happened to be a radiation therapist who knew his hair loss must have been a result of radiation, but it took her a while to ask me. She ended up reassuring me about some things that never quite returned to normal since Ty completed his last course of radiation therapy and she made me feel so much better. She doesn't work specifically in pediatrics, either, and I am pretty sure she and her husband left dinner that night with a new love in their hearts for Ty Campbell, and thanking God for the health of their own two beautiful babies.

All through this vacation, I couldn't help comparing it to our Make A Wish trip to Disney last year. How different it was!   Our Disney trip was the most memorable and forever will be, but that's probably because we were told his condition was terminal. At the time, his tumors were growing so fast we were told to prepare for his passing in 6 weeks or so (how any parent is supposed to do that is beyond me, but okay). Every moment of our trip to Disney was a first and a last. Ty's first time on a plane. Ty's first time meeting Mickey Mouse. Ty's first time seeing animals at a zoo. Ty's first time at an amusement park. We were on a mission to "do it all" and I would save every little thing I could get my hands on (you should see his "keepsake" BOXES - yes there are several of them filled to the brim). I would shove my face in his dirty laundry and relish in his smell. He was on so much morphine and such high steroids, none of us slept a wink for months and months and months. We just wanted to do, do, do and give Ty everything we could.

On the contrary, this trip to Mexico was a vacation focused on healing.  Ty was 100% free of all medication (we will start up his daily chemo again tomorrow, but couldn't risk it while being away). We didn't rush, we didn't plan, we just tried to enjoy Ty and Gavin and enjoy the beauty of where we were.  The only non-relaxing activity Lou and I indulged in was a jaunt on waverunners and all I can say is "YAAAA HOOOOO!!!!!" I drove that thing full throttle, jumping over wave after wave, for a half hour.  My hair whipping behind me, I yelled and laughed out loud the entire time. It was so liberating! I felt so happy, finally, and so aware of how beautiful life can be for the first time in a long time. I am so blessed. Every living thing on this beautiful earth is a miracle and God is indeed good.   Goodnight everyone. More tomorrow.

Oh... and I know that Gavin is confused about the "kitty" pool because when we were walking by it after dinner in the dark, I reminded him that it was the "kiddie" pool he had been swimming in earlier that day. He said "kitty pool?" "Yes, kiddie pool," I repeated. Then he started crawling and meowing like a cat over and over. He had that mixed up the rest of the trip - so cute!

Making memories in Mexico

2011-11-18T15:57:00.001-08:00

I have so much to write about, but my laptop has been taken over by Ty and Gavin. The hotel here in Riviera Maya doesn't have a DVD player, so they use my computer to watch their movies which makes it impossible for me to get online to post an update.

Our vacation has been wonderful. Better than we could have ever imagined. I will share a full update tomorrow - hopefully we will have internet during our flight home. In the meantime, here are some photos so you can see how much fun we've been having. This trip has been so long overdue.

Building sandcastles at the beach

Swimming in the kiddie pool (or, according to Gavin, the "kitty" pool)

Drinking strawberry smoothies at the kid's bar

This is my favorite so far!

Busy weekend

2011-11-13T19:48:00.001-08:00

We had such a wonderful weekend. On Friday, Aunt Theresa came over with Ty's cousins James and Ryan. The way all the boys played together made me wish so much that Ty and Gavin had a bunch of older siblings to keep them entertained and laughing all day long. I hardly had to do anything all day! It was amazing! And, Ty was more motivated to scoot across the floor and be active with his cousins which was great for his physical therapy. He even wanted to take a bath, a rarity, because his cousins were taking one with Gavin. He hopped in and really enjoyed it. My house was totally destroyed, but it was also filled with roaring laughter. It was great.

My sister slept over that night and after we put the kids down we stayed up late with a bottle of wine. We talked about family and friends and so many other silly things... but surprisingly, we didn't talk about cancer. At least, not too much. I am at the beginning of some very big changes in my life, and it is wonderful. Slowly but surely, we are all healing and we are all finding our way into "normal" life again (whatever that means). I will never be the same person, and I think I will have to learn to live with a new and permanent stress/anxiety that I never even knew before August 2010, but that's okay. I am better for it. I recently saw a necklace that was engraved with the word "remember" and then in flipped up to read, "breathe". It seemed so fitting considering how I feel all the time :) Just remember to breathe. Things will be okay.

Saturday afternoon we headed down to Fordham University to cheer on our favorite football team. Ty was the honorary "team captain" and he led the team out onto the field. He also flipped the coin to kick off the game. It was so great. We were originally scheduled to do this at the West Point game two weeks ago, but that game was played in the midst of the huge snowstorm and we couldn't get out there. We were going to give it a try, but in hindsight we are so lucky we didn't get on those mountain roads, we may have ended up stranded on Bear Mountain! I'm so glad it worked out the way it did, anyway, because Saturday was the most perfect day for football. The sun was shining, the leaves on the trees were falling lightly in the wind, and we didn't even need jackets.

All of the guys on the team seem so mature. They treat our little man with such respect, it's so adorable. I was hoping that Ty would bring them some better luck this season, but so far he hasn't helped them win many games. This will be a long-term relationship, though, and it's only our first season with the team. I'm sure we will see Fordham's record improve continuously as Ty gets more and more involved, because we all know that Ty is the luckiest kid in the world these days ;)

After the game yesterday, Lou's mom and dad threw him a belated birthday party and invited some of his best and oldest friends over for some late night snacks and cake. Ty and Gavin were such good boys that night, and it was so fun for me and especially for Lou to catch up with everyone. Especially following such great news about Ty. Everyone was just buzzing. The atmosphere is always very different when things aren't going well because we are filled with worry and sadness. Instead, we were celebrating and all was good. We laughed and laughed and laughed.

Today was a busy day preparing for our upcoming trip. I have to get back to packing tonight, so I am going to sign off for now. I will be posting again before we leave and then, of course, I will have my computer with me and can't wait to share photos with you all. Fingers crossed that Ty is willing to try out the pool! It has been so long, and he is so afraid, but I just know once he gets in there it will be so fun for him. We'll see! Hugs and kisses. Goodnight everyone.

Miracle MRI recap

2011-11-10T17:40:00.001-08:00

Tuesday was one of the most stressful days of my life. It already seems like it was sooo long ago. I have been walking on clouds ever since and life just doesn't feel real yet!

Following a sleepless night on Monday (of course) Lou and I hit the road at 5:30 in the morning to arrive in time for Ty's 7:30 MRI appointment. We arrived five minutes late, but because Ty's mediport wasn't accessed yet (which caused delays) they had to push his appointment back to 11AM. Can you imagine having to wait another three and a half hours on top of the endless waiting that preceded? I was falling apart. On top of the obvious anxiety, Ty was NPO so I wasn't going to eat or drink anything in front of him all morning. I went without my morning coffee and I was dying for it. Oddly enough, I crave caffeine the most when I feel the highest levels of stress.

Ty was under anesthesia for more than two hours, so Lou and I went to our usual place down the block to get something to eat. Imagine sitting at breakfast talking about day-to-day things with your husband while you wait to hear whether your son is going to live or die? That is exactly what we did - for what felt like the umpteenth time. No one should have to go through that. It is horrific.

Lou and I both had a bad feeling about the MRI. We tried so hard to stay positive, but I would be lying if I said that we didn't think otherwise. We were very concerned over how weak Ty has been. We returned to the hospital to be with Ty when he woke up, and it took another three hours in the waiting room on the pediatric floor before our doctor arrived to discuss the results with us. It felt like an eternity! A torturous, slow and painful death! Finally, I saw him walking toward me just seconds after Lou left to go to the bathroom. I could not get a read from his face what-so-ever as he walked toward me. "It's good," he said, before he was even close enough for me to hear. I was reading his lips but I couldn't be sure of what he was saying because I was so panicked. "What?? What??" I needed to hear it again and again.

"It's good! It's good!" he repeated, more excitedly this time. "I just wanted to get that out of the way before saying anything else." What happened after that is a blur. Lou found us. He was white as a ghost when he saw me with the doctor. I told him it was good and he needed me to repeat it for him, then he needed to hear it from the doctor. It is a miracle. A MIRACLE!!

So, the next questions are... When is his next scan? When can we stop the chemo? His next scan is in two months, and over time it will eventually be moved out to every six months. Some day he will only have to visit the hospital once a year to high-five his doctors and thank those nurses and other medical staff who remember him from when he was a toddler. I have visions of this and I believe in those visions. As for treatment, for now he will be on chemo indefinitely. His doctor does not think there is any microscopic disease, rather, he wants to maintain therapy to combat any future mutations that may occur. We can never know if or when this might happen, just like we don't know how his cancer started in the first place, but since Ty's original tumor metastasised there is a greater chance that such mutations may occur again.

How and when do you just take a chance by stopping therapy? Especially when the chance likely means life or death? If our prayers continue to be answered, this is a difficult decision we will face in the future, but right now I am just happy. I am thrilled. I am OVER THE MOON!

So, we are trying to resume with life. Ty returned to preschool today and he was really excited to go this morning! He didn't last the entire time, but he had a lot of fun while he was there.

When Gavin saw me taking this picture of Ty, he wanted me to take his picture, too. Here is adorable Mr. Bedhead in his pajamas. Cheese!

Before Ty was diagnosed, Lou and I booked a trip to Mexico to celebrate our fifth wedding anniversary. We were supposed to go in September, 2010. Of course, we had to cancel the trip, but Lou and I recently decided to reschedule for next week!!! We have changed the itinerary to include Ty and Gavin, and we are going to celebrate on the sunny beaches of Riviera Maya starting next Tuesday. Ahhhh. I can't even imagine what it might be like to feel relaxed, but I hope I can reintroduce myself to that foreign feeling.

Ty is on a different chemo as of yesterday. We finished the most recent cycle with Cytoxin and we are now starting our third round of Temodar. Last night, Ty got sick from his new medicine and he threw up his entire liquid dinner. I was more careful tonight, making sure he didn't eat as much before bed and giving Ty anti-nausea meds before he fell asleep. I have to sign off to administer the rest of his medicine now, and I am crossing my fingers that he handles it well. Goodnight everyone. As always, I can't thank you enough for all of your love and support.

Thanks be to God

2011-11-08T18:06:00.000-08:00

As many of you already know from Ty's facebook announcement, his MRI was clean!!!!!!!! There was no evidence of disease, which means Ty remains cancer free. May he remain cancer free forever.

This is truly a miracle. Ty was diagnosed with terminal cancer less than a year ago, and today he has no evidence of disease. Thanks be to God, to his doctors and nurses, and to all of you who are praying for him and sending words of encouragement. Please continue to do so. He is still in treatment and he is having a tough time with the chemo, but we will never stop fighting. Here he is at the marathon just two days ago. He looks great, doesn't he?

I have so much to share, but I am in too much shock to organize my thoughts. I was terrified today. Ty was showing so many signs that have meant "tumor" in the past. The drooling, the vomiting, the slurred speech (in hindsight, it was probably the chemo taking a toll on his tiny body). I still can't get a hold of my emotions. I am overwhelmed with the news today. It was the best news Lou and I have ever received in our entire lives. More tomorrow. As for now, I am just waiting for the word from SuperTy so we can go snuggle together in bed and sleep, sleep, sleep. I can't stop kissing him all day today (and everyday) and I don't think I'll be able to let go of him all through the night. :)

Grace, a very special girl, also has her MRI tomorrow. She had a clean scan the day after Ty just two months ago. I am praying for her and her parent's tonight. I can't wait to hear her good news tomorrow. God Bless Ty. God Bless Grace. God Bless all of you! XOXOXOXO.

2011-11-07T18:40:00.000-08:00

Just opened this Fortune Cookie. How perfect.

Amazing

2011-11-07T13:50:00.000-08:00

26.2 miles. That is a long way to run. Yesterday was very emotional, very inspiring, and very exhausting. Lou, I meant it when I said that I have never been more proud of anyone in my life. Aunt Debi, you are amazing. We love you.

Ty and I went out for breakfast yesterday morning before we set off to cheer on Fred's Team outside of the hospital (as usual, Ty wan't interested and I ended up eating breakfast for two). There are 775 men and women running to raise funds for Memorial Sloan Kettering cancer research. We saw someone running for Fred's Team pass by every minute! It was awesome. Thank you, thank you, thank you. We shared the sidewalk with so many of the nurses who care for Ty, and some of the boys and girls staying in the hospital were allowed to come down to cheer on Fred's Team, too! One runner stopped to give his medal to a little one in a wheelchair. He said, "I'm running for you" and he didn't even know this child. I was wiping away my happy tears all day.

One of Ty's supporters spotted him right as we were leaving the Fred's Team section and he wanted to talk to Ty and take his picture. Ty was soooo tired and cranky at that moment he refused a picture. Then we had to leave rather abruptly because I was nervous about making it to the finish line in time to see Lou. I hope that sweet man is reading this post, because I would love to mail him a photo of SuperTy. Please email us at tylouiscampbell@gmail.com with your address :) We are so thankful for your love and support and we didn't mean to rush off like that.

After we got a big hug from Daddy and Aunt Debi in front of the hospital, we raced to Central Park on foot to catch them at the finish line. Thank God I had several friends meet up with me early in the day because they were so helpful. If it wasn't for them, I don't think this amazing, happy ending at the finish line would have been possible... check this out!

That is Lou carrying Ty across the finish line!!!! It was so amazing. Thanks to all of the people who were willing to bend the rules for Ty so that Lou and Aunt Debi could see his smiling face at the end of the race. It was simply the best. Later that night we went out to dinner to celebrate Lou's 40th birthday. I don't have any pictures of the birthday boy to share just yet, but here is the photo montage I posted for him back on Father's Day. I also pulled this picture down from Debi's facebook. Can you believe this? She is so beautiful, you would never know how much pain she was in that night. She is a superstar, too. XOXO.

MRI TOMORROW. As I'm winding down from all of our weekend excitement, I am feeling more and more like a train wreck. I am so anxious about Ty's MRI tomorrow. Please pray, pray, pray for it to remain unchanged. No evidence of disease forever. Ty is still getting sick at random and drooling a bit more than usual so I am especially concerned. I am beyond worried but I am trying to stay cool and confident. After we got home today I went into town for a cup of coffee and I took a walk to clear my head. I went to church, I lit a candle, I brushed my hands over the brick that is engraved for SuperTy and I stood by the statue of another little boy who lost his battle with this terrible disease. I will forever be consumed by just how unfair all of this is.

I truly believe with all my heart that Ty remains cancer free, but there's nothing I can do to otherwise control my fear of "what-if." He will be going under anesthesia at 7:30 in the morning, and the scan takes about 2 hours. We will wait for the results in the late morning and we will post the good news as soon as the official report comes in later tomorrow afternoon. In the meantime, we can't thank you enough for thinking of him and keeping him in your prayers. Another sleepless night awaits.

Marathon tomorrow!

2011-11-05T19:06:00.000-07:00

Ty and I traveled down to Manhattan to be with Lou and Debi tonight as they prepare for the Marathon. The midtown hotel is buzzing with anticipation for tomorrow's race. I am so happy to be part of all of this excitement.

Ty had a terrific day today. No vomiting whatsoever and he had a decent appetite so I feel a bit more at ease tonight. I don't know how any of us are going to sleep a wink regardless, but still - at least I can exhale just a bit.

We took Ty to Dylan's candy shop this evening and then to one of my favorite sushi restaurants on the Upper East Side. He was such a good boy the entire time! I think he likes the city very much when he is here for reasons other than going to the hospital. He especially enjoyed hailing the cabs. He was adorable. I'm SO glad that the G-shots kicked in and he is no longer neutropenic. Otherwise none of this would have been possible.

Tomorrow we will be waiting for Lou and Debi in front of Memorial Sloan Kettering Cancer Center. All of the nurses and doctors come down to the street throughout the day, and they even bring the kids down from inpatient who are able to go outside. It is going to be so emotional for all of us, I am so excited about this and so incredibly proud of Lou and Debi. Then we will walk over to Central Park so Ty can be there for Lou as he crosses the finish line. We have a "Happy Birthday" banner for him that my niece and nephew made. He is going to love it so much.

I only wish Gavin could be here, too! We left him home with my mom and dad because he is just too young. The city is so crowded and he gets out of hand sometimes, but we will be thinking about him all day. I believe watching the marathon and cheering on Fred's Team will become a Campbell family tradition so he will be there next year :)

Panic Attack

2011-11-05T12:02:00.000-07:00

There is blood all over my beautiful new sheets. I was picking my cuticles in a nervous state of stress last night and five of my fingers are raw and bleeding. It hurts, but I still continue to do it over and over again. Until cancer entered my life, I had never known what a full-blown panic attack feels like. I experienced high stress - mostly work related - where I swear I could feel wiry gray hairs sprouting from my scalp. But this level of panic and anxiety was foreign to me. I wish it still was.

Lou had the day off yesterday so he got up extra early with Ty and I slept until Gavin woke up. When I came downstairs, I noticed Ty was in different pajamas. I asked him, "Hey, what happened to your Sponge Bob PJ's?"   He didn't answer. Lou game me an exaggerated frown. "What? What happened?" Lou made a gesture that showed me Ty threw up. Since I am incapable of subtlety under these circumstances, I immediately started to panic and shouted a slew of questions out loud. "What do you mean he threw up? Why? Does he have head pain? Did he say he doesn't feel well?..." and so on.

"Don't worry," Lou said. "He was drinking his apple juice so fast this morning he started to cough. I think it just went down the wrong way and it caused him to gag." Ahhhhh. Thank God. I can totally believe that answer, it happens. Ty has a very, very sensitive gag reflex and I was relieved.

Then, not even 20 minutes later, he threw up again. We both had to change our clothes. Some juice must have been leftover, upsetting his stomach - or so I tell myself. Another 20 minutes later I have to give him his morning medicine. Again, he throws up. We travel down to the hospital for our weekly appointment and I share this with his nurse. While we waited to be seen, Ty ate a bunch of grapes and he seemed totally fine, he kept them down and was in a great mood. His nurse felt this probably meant that the vomiting in the morning was isolated and nothing to worry about. After we met with the nurse we spent a couple of hours in the day hospital waiting for Ty's infusion to finish. He ate 1/4 of a banana. He threw it up within minutes. On the outside I kept it together, but I started completely losing it on the inside.

I had to walk away. I went to the bathroom that was furthest away from where we were sitting that day, and I felt like I couldn't see or hear anything around me. I was floating in a bubble that didn't have enough oxygen. I don't know how I got to the bathroom, how long I was in there sobbing, or if I was quiet enough so I couldn't be heard outside. I splashed water on my face, and I just stood there, bent over in a panic. I calmed myself down by trying to think of other things. I decided to leave and take the elevator downstairs for a cup of coffee (I don't know why, when I am most anxious, I always crave caffeine - not exactly what my body needs). Again, I don't know how I got down there. I was unaware of my surroundings.  Sounds were muffled.  All I could do was concentrate of breathing and not crying.

Luckily, I recovered after a while. When I returned to Ty, I was in pretty good shape. Lou could tell I was a mess, but Ty didn't know.   I am an expert at altering my voice so he won't know I was crying.

I don't know what this means, but I just have to hope and pray that it isn't cancer-related. I believe Ty is healing. I believe his scan on Tuesday will prove this to be true. But right now, we have to just wait with painstaking scanticipation.

The next 3 days are going to be brutal, but also filled with so much excitement as Lou prepares to run his first marathon on Sunday. Ty and I will be waiting for him at mile 17 - right outside of the hospital - and then we will walk over to greet him at the finish line. It's going to be amazing. Thanks to all of you who are supporting his fundraising efforts, and those of his sister, Debi. Lou is in the Top Ten among all 775 runners from Fred's Team. All of their fundraising will be going directly toward pediatric cancer research at Memorial Sloan Kettering. I can't wait to update you all on the marathon - we are heading to the city in just a few minutes.

Three things

2011-11-02T19:45:00.000-07:00

I have three things that I want to report on tonight before I get back to the mounds of dishes and piles of garbage leftover after cleaning out my refrigerator. There is a plus side to the power outage... I had some very old c*ap in my fridge and freezer that must have been buried in there since the ice ages. It was actually liberating to throw away the freezer-burned, family pack of pork chops that was dated 2009 (how it even made it here in my move from Long Beach is beyond me).   Clearly, I'm not exactly big on cooking ;)

FIRST - I have several "Happy Birthday shout-outs.  Colleen, what can I say? You make me laugh constantly. You lift my spirits. You have been my friend since Kindergarten and even with 3,000 miles between us I feel as close as ever. I love you. Hope you had a happy birthday.

Catherine is friend who I've known for 12+ years, and we've only gotten closer as time goes by. She is a wonderful cook and she used to have me over for dinner often, especially when I was still living in Manhattan. I miss those nights with my girlfriends... indulging in delicious food and talking about silly stuff. She refers to last month as "Sulltober" - or a similar mash-up of her last name and the month of October - and I couldn't believe it was November 2nd when I looked at the calendar today. Sulltober came and went and I missed her bday completely. Happy birthday Catherine, I hope you are having a fabulous weekend in England (you fancy b#@$!).

My friend Christina, who is one of my nearest and dearest, got engaged last week on her birthday.  We celebrated over champagne at my house last weekend and I am just over-the-moon happy for her and her fiance.  Christina and I have been friends since we were 16 years old, and she is a very, very close friend of mine. I love her with all of my heart and can't wait to talk "wedding" with her so I can focus on something that is so much more fun than chemotherapy, bloodwork and anti-anemics.

Today is also our love Yasmine's birthday. Yaz, you are so special to us. You, Anthony, Eva and Theo bring so much happiness to our entire family whenever we are all together. I hope you know how much Ty and Gavin love you. Sending GIANT hugs and kisses from me, Lou, Ty and Gavin tonight. We love you.

SECOND - G-Love. I just want to share something adorable that Gavin did tonight. Since Ty became neutropenic, I wasn't able to take them to a studio to get their pictures taken for Lou. Instead, I tried to have a "photo shoot" at my Mom's house this morning, and it was a ridiculous failure. I bribed Ty and Gavin with a trip to the candy store and these were the best shots I could get. Not exactly frame worthy :)

I am sharing this because our trip to the candy store resulted in Gavin choosing two Pez dispensers - I couldn't get him Buzz Lightyear without also getting Woody. He absolutely insisted on having both. The funny thing is that he played with those two Pez dispensers like they were his best friends for the rest of the day. He had me put on the movie, and he showed his new friends how they were on TV. He had them watch the movie with him until bedtime and then he took them to bed with him. It was the cutest thing. He tucked his Pez dispensers under his blanket as he went to sleep and I felt so happy. It was just adorable.

THIRD - SuperTy update. Ty is still doing well, but I started his GCSF shot today which will cause him bone pain over the next few days :( When we got home today, we caught him scooting around the den and hiding some of his toys. When I asked him why he was hiding them, he said "cuz I be sill-wee". He is silly. I love him so much. He is such a good boy. Here he is with his first science kit that was gift from cousins James and Ryan for his birthday. I believe he is reading the ingredients on his fruit snacks.

Goodnight everyone. Thank you for keeping tabs on our special boy.

Healing rainbows for all of us.

2011-11-01T20:02:00.000-07:00

Ty's bloodwork showed that his counts were still dropping as of Friday. We cut his daily chemo dose by another 25% (this is the second week in a row we lowered his chemo) and he was so happy I thought he must be bouncing back. Unfortunately, his bloodwork today showed his white blood cell count to be dangerously low. We are down to an ANC of 0.2 from 0.6 (for those who are familiar with the term) and we are going to have to stop the chemotherapy altogether for a while. I will also have to begin giving Ty his "G" shot every day starting tomorrow. This was definitely unexpected, but for me it only verifies that we made the right choice by beginning this metronomic chemotherapy regimen instead of traditional chemo because Ty's bone marrow just isn't strong enough for all of these toxins.

His spirits are so great, you would never know that he is neutropenic. He has always been that way. I remember the first time I brought him to the emergency room for a fever after his first course of chemo... the doctor was completely shocked when his bloodwork showed he was neutropenic because in the middle of the night he was up playing games and charming the socks off of everyone with his smile. He is very good at that :)

So, we have been buried in snow and without power since Saturday afternoon. After three freezing nights in a row, our freezer was defrosted as of this morning and we were told by the electric company that our power lines weren't expected to be fixed until Wednesday at 11:30PM!! So, I packed up Ty and Gavin and drove to my mom's house with bags full of laundry and a cooler full of my best perishables. Of course, I got a text message just two hours after we finally got here to tell me that our power was restored. We are going to stay the night, anyway, because Ty was having so much fun with Grandma and Pop-pop. Besides, with Ty being neutropenic there isn't much more we can do, anyway.

Halloween in our new neighborhood was totally cool. Despite the snow, we had tons of trick-or-treaters, and I think Ty had more fun giving out treats than he did getting them for himself! He waited by the window when the sun went down, and told us to "run" to the door with our flashlights so he could see all of the great costumes and hand out candy. Gavin was just as excited. It was adorable. Ty went as Iron Man (because Iron Man has a "mediport" in his chest just like Ty does) and Gavin was Wolverine. Is it terrible that I convinced Gavin that Wolverine would be cooler than Buzz Lightyear because I wanted him to match his brother? I wanted them to have the same "Super Hero Squad" theme :) I don't think he was upset about it, just look at him showing off his claws.

As promised, Ty stood on his own two feet for a photo this Halloween! He was supported by the couch, but still!!! How amazing!!!! The real superhero.

What a year, what a year. Our Ty is one amazing little boy. He has been through so much and we are finally coming full circle. I am just so anxious for the day that we can declare him cancer free. His MRI on November 8th is right around the corner and I just can't stop thinking about it. With every bone in my body and every ounce of my soul I truly believe that this scan will remain clear, but it is only natural that I am still sick with worry. Luckily we have the marathon and Lou's 40th birthday coming up on Sunday to keep us distracted.

I received an email from a college friend recently that helped me a lot. I couldn't figure out why I have been feeling so vulnerable lately. Why I feel like I could fall apart at any given moment, just as everything else is finally coming together. She reminded me that up until August, I have been living in pure survival mode. That I was in overdrive, with a daily stress level that human beings aren't really capable of enduring before it will eventually take its toll. Now that my day-to-day concerns are less critical, I am starting to feel the effects of all that pent up stress and emotion. She was totally right. I have been feigning confidence when in reality, I feel weak and broken. But, it's all good! It's very good. She was right when she said I am "detoxing" and it is necessary. That's exactly how I feel - like the pain that built up over the past year is working its way out my pores. I'm happy to be going through this phase because it's certainly better than the alternative.

My friend Colleen says that she pictures Ty wrapped in a real rainbow with the glowing spectrum of colors healing him completely. I like that very much. I like to think that I am wrapped in a healing rainbow, too. So warm and comfy. Goodnight everyone. All of our love.

NBC Segment!

2011-10-28T12:45:00.000-07:00

NBC New York ran a story about Lou and Fred's Team on the evening news yesterday! It will also be running throughout this weekend (watch it here http://www.nbcnewyork.com/video/#!/news/local/One-Fathers-Special-Reason-to-Run/132827623). There was some adorable footage of SuperTy at the doctor's office as well :) Lou is one of the top ten fundraisers for Fred's Team among more than 700 runners on the team - and we hope over the next few days he can be among the top 5! We are so proud of him. As you know, this is a cause that is so near and dear to us because Fred's Team funds go directly to research at Memorial Sloan Kettering Cancer Center (where Ty is being treated). This research saves lives. Thank you so much for supporting Lou in this accomplishment of a lifetime :)

CLICK HERE to make a donation on behalf of Lou.

F#@% the other shoe!

2011-10-27T01:34:00.000-07:00

My friends have been worried about me. I guess my posts lately have been a little weary and I sound fatigued. These peaks and valleys are to be expected after all we've been through. It can be hard to avoid living in limbo and waiting for the other shoe to drop. Well, to quote my friend Linda, "F--- the other shoe!"

She's right! There will be no other shoe dropping. I am totally inspired to turn my attitude around. Even at four in the morning I feel really good despite the fact that it's often these middle of the night ramblings that tend to bring out my worst fears. Of course, the fact that I am wide awake at four in the morning is another issue that I will have to conquer at some point, but for now I can be friends with my insomnia. I should try to use this time to accomplish some long overdue tasks, or just some mindless online shopping to clear my head ;) Ty had such a great day today, I am looking forward to tomorrow.

In fact, I just saw an email from another friend who stopped by the house today and she said that Ty looked better than she has ever seen him (and she has seen it all... the good, the bad and the ugly over the past year). Better than ever! She's totally right, too. He is a superstar.

He is still coughing a bit so I decided to put off his bloodwork until tomorrow. He also felt a little nauseous this evening after I gave him a shake through his G-tube to try and help his digestion (I guess I only made it worse). Otherwise, he is happy as can be and he even had a decent appetite today! He was eating chicken for the first time in weeks. That and Welch's fruit snacks. Better than nothing, I'll take it! He also had an amazing workout with his physical therapist this morning. He is really gaining confidence on his feet and she was so impressed.

I was looking at his bare legs tonight when he was changing into pajamas and I swear there is some meat sticking to those bones. Finally! The scale has been saying otherwise, but I can tell that he is gaining a lot of muscle. It allows me to worry less about whether or not he is eating enough when I see him gaining weight. You will all hear me singing from my rooftop when he finally reaches 13 kilos. That's how much he weighed the very first day that we checked into the emergency department at Cohen's Children's Hospital because our baby wasn't sleeping well. Right now Ty weighs 12.1 kilos (which is about 26.5 pounds). In May and June he weighed as little as 10 kilos (22 pounds). Now... I know I can easily gain five pounds in a week, let alone three months, but for Ty that is a really big deal :)

The other day I hung a growth chart in the boys' room. It was the same one we used in our Long Beach house, I just neglected to hang it ever since we moved. I was a little discouraged when I stood Ty against the chart because he hasn't grown at all since last September, but some of that can probably be attributed to his core muscle weakness and the fact that he doesn't stand as tall. Gavin, on the other hand, is impressive :) He is exactly 2 and a half years old, he is slightly taller than Ty and weighs a whopping 37 pounds. People ask me if Gavin is Ty's older brother. Ha! Lou and I both envision Gavin as a tough kid in school who will stand up for Ty if there are ever any problems. Ty is such a funny and charming little boy that I can't imagine him having a tough time, though. I guess you never know, kids can be cruel, but Ty always made fast friends and I think he has a fun-filled life ahead of him. He deserves it.

Goodnight all. Here's to a fun-filled life full of rainbows and sunshine!!!!

Pajama Day

2011-10-25T19:37:00.000-07:00

I had a lot of fun with Ty and Gavin today. Gavin was a little off the wall, but he makes up laugh. Ty is feeling so much better with the exception of a nagging cough. I give him a prophylactic antibiotic in order to avoid the development of pneumonia (should he become congested in his lungs), but I think this will subside in a few more days. He is tired from the new meds, but in such great spirits. I am so happy that he is happy and having fun, regardless. You should see him walking! I will have to post a video soon, he barely needs support anymore. He is doing great!! Today we started supporting him with only one arm to help his balance and he is otherwise doing so much of it on his own. I am beaming all over whenever he goes for a walk around the house. He gets around so much by scooting across the floor, too, that I actually lost him twice in the last week. Can you imagine how great it felt to have to peek around the corner in the kitchen to find out where he was? It was amazing. He finally has some mobility which allows him to play so much more independently.

There are two things weighing on my mind tonight, but not terribly. First, I wish Ty didn't have to stay home from preschool for such a long stretch because I worry that it will be difficult for me to get him back into the routine. I think I'll get his bloodwork done locally tomorrow to see where we are at. You should have heard the little actor when I told him we should stay home from school because he was a little congested last week. "Yeah... I have cough... I can't go school... maybe some gummy worms will make me peel bedda?" This was first thing in the morning, mind you.

Second, I wish he wasn't losing his hair again after all this time. It isn't falling out in clumps like it has in the past, but it is noticeably thinner and he's losing a little more each day. I thought since we lowered the dose of his daily chemo that maybe this would stop, but it hasn't so far. On the bright side, Lou and I did notice some very slight hair growth on his giant bald spot in the back! This is so reassuring. We are hoping that maybe the permanent hair loss from radiation to the back of his head won't always be as prominent as it is right now.

In re-reading the previous paragraph I realize how lucky I am that we continue looking so far into Ty's future and I apologize for any negativity otherwise. Take every hair on his head, that's the least of our concerns. We will do whatever it takes. We are so blessed and so grateful.

The past few days have been pajama days at our house. Those can be the best days of all :) Gavin and Ty are gearing up for Halloween by preparing their bellies. They have been indulging in candy like crazy and the trick or treating is still almost a week away! I just ordered a pound of Dr. John's Sugar Free lollipops to see if I can put a stop to their inevitable cavities!

Here's Ty enjoying an ice pop at Aunt Debi's and Gavin goofing around with some "vampire" teeth that we received from the Allen family.

Goodnight everyone. Sweet dreams.

Brain Tumors Suck

2011-10-24T18:42:00.000-07:00

I don't consider myself weak, nor am I all that strong... but I do still cry often despite how amazing Ty has been doing. I am sure that I will be so much better off, mentally, once Ty's scan on November 8th shows no evidence of disease. Until then, I will continue to worry about his drooling and his eyes. His eyes are just "off" ever so slightly. I'm not the only one who mentioned it... Lou has been worried about his eyes, too. His doctor says it can be from overall weakness as a result of the current chemo, and I have to believe he is right. The cyclophosphamide he is getting this month has taken a worse toll on him than the previous meds - his counts are low, his hair is thinning and he has mouth sores - but Ty seriously never complains. He is much more tired and cranky than his usual self, but other than that he laughs his way through the day.

Today I was holding him while we looked through some of his toys in storage downstairs. He saw a big basket with the parts to his trainset and asked me to bring it upstairs. I shifted his weight on my hip and hoisted the clumsy bin onto my other hip. As we were climbing the stairs, Ty was laughing like crazy. I asked him what's so funny and he said... "Mama! You Soupy Mom (super mom)!" Best compliment ever. If I were really Super Mom, I would be the one fighting the cancer and taking chemotherapy every day, not him.

The Circus
Yesterday we took the boys to the Big Apple Circus. The entire event was sponsored by the Children's Brain Tumor Foundation, and the performance that day was reserved only for brain tumor families. The fact that we could fill that tent had me so mad!! It's so unfair - these hundreds of victims are innocent children! There were 1,600 people in attendence.

Brain and spinal cord tumors are simply devastating. They can steal the ability to walk, talk, eat and see straight. They damage cranial nerves that are responsible for facial expression. They impair learning, memory, coordination and balance. They strip kids from being able to be themselves. Just when I was starting to tear up over the realization of how widespread this is (and the circus tickets were only distributed through a small number of NYC hospitals), a gentleman from the CBTF board of director's came out to welcome everyone and kick off the show. He had his young children with him. He is an 18 year brain tumor survivor and I would have never guessed it. Awesome! That's what I want Ty to do. To never forget, to talk about being a survivor, and to be active in helping to find a cure some day. I don't want to ever put all of this behind us. I want to carry it into our future.

We weren't allowed to take photos inside the tent, so I don't have anything to share at this time :)

The Guardian Brain Foundation
While we are on the topic of brain tumors, I need to talk about Mary Pallotta. She is the founder of the Guardian Brain Foundation. Although we still have yet to meet in person, she is like family to us. She created this foundation to honor her brother who passed away way too young from an aggressive brain tumor. She sends the most endearing notes, we have the most heartwarming and supportive conversations, and she has given countless gifts to Ty and me that will forever be cherished. She is so special and I admire everything she does. The Guardian Brain Foundation has done so much to support my family through all of this, and it is 100% a volunteer effort. If you live in Long Island, she will be hosting the annual Butterfly Ball on November 18th. Please consider attending, it is a wonderful event.

Fordham Football
Ty's big day at the football stadium is fast approaching. We hope to be able to attend the big game at West Point this Saturday. Ty and Gavin both have football jerseys and they have been throwing the ball around to get ready (the best they can, anyway). In the meantime, I wanted to share this article with you all that ran in the Fordham Newspaper right around Ty's birthday. A friend shared it with me just today, I was otherwise unaware. I think it's such a sweet article on Ty and his relationship with the team through Friends of Jaclyn. We can't wait to see them all again!

Marathon Training
Lou is still in the middle of his grueling training regimen for the upcoming NYC marathon. It has been so hard, but he is dedicated to completing this race in an effort to raise funds for pediatric cancer research that saves lives. Children are suffering every day, and Lou is determined to help the cause as much as he possibly can. He is ranked among the TOP TEN fundraising individuals for Fred's Team out of over 700 runners. I am so over-the-top proud of him. I can't wait to see him at the finish line with Ty in my arms. And, I can't wait to see him on NBC in upcoming weeks! I am over the moon knowing that a whole new audience will be introduced to Ty's story as a result. Thanks so much to all who have supported Lou's big run.

The brightest star in the sky

2011-10-22T21:40:00.000-07:00

On the night before Ty went to the hospital for his very first surgery, Lou and I took him down to the beach at dusk. The weather was a perfect, mid-August night with a beautiful breeze, an amazing sunset, and calm, rhythmic waves. It was one of the most depressing nights of my life. I've probably written about it before, but it has been on my mind alot lately so it bears repeating.

Ty was already showing signs of the tumor. His speech was slurred, he was drooling, and he suffered from headpain. All three of us were very quiet and there was a numb sadness around us. Ty seemed to be particularly heavy. It was as if he knew why we were on the beach that night, trying to enjoy one more beautiful night with our beautiful boy before officially entering the horrific world of life after cancer. When the sun set, we looked up in the sky and I asked Ty to pick out a star that we would designate "Ty's Star". Of course, he chose the north star - the brightest star in the sky - and it couldn't be more appropriate. He certainly is the brightest star in the sky, and I am sure to point it out to him whenever we are looking up in the sky together.

I can't tell you how many times I stare up at that star and wonder if that will be where his spirit lies in the future. If I will be talking to and praying to that star every night; or if it will instead symbolize his awe-inspiring life here with us instead of his unending life after death. I hope and I believe it will be the latter. I won't ever look at a starry sky again without thinking about Ty and his amazing fight.

I haven't written for several days, mostly because we have just been so busy, but also because I haven't had the energy at night. I have been doing really, really well - we all have - but there are still some nights when I can't shake the sadness. In the past I would turn to writing about the day to make me feel better, but lately I can't find the energy to write/talk/read... anything. Tonight I was thinking about how many people have reached out to Ty lately to show support, and I realized that I need to stop wallowing and share a detailed update, so here it is.

Ty's current health
Yesterday was a very exciting day at the hospital, but first I will share the less exciting details. Ty is borderline neutropenic. His white blood cell count has dropped to a dangerous level so I will be keeping him home from preschool (and just about anywhere) until his CBC shows improvement :( He has a slightly congested cough, but the team wasn't too worried about it for now. However, if Ty runs even a low-grade fever, we will have to be inpatient at the hospital for several days. Fingers crossed that doesn't happen. This has been the longest stretch we have ever gone without spending a night in the hospital (by a landslide, three months+) and as much as we miss our amazing nurses over there, we want to avoid going back there at all costs! The good news is, he gained .3 kilos (about 1/2 pound).

The advantage to daily chemo (every day, twice a day instead of one huge dose at the beginning of the month) is that the medication is only in his system for 24 hours or so, and the doses can be adjusted so he takes less when his counts are low to allow his blood/bone marrow to recover. Yesterday we lowered the dose of his daily chemo and his doctor expects his counts to jump right back up again within a couple of days. When he had high-dose chemotherapy infusions, that was much different. When his white blood cell counts started dropping there was nothing we could do to stop it. His ANC (absolute neutrophil count) became dangerously low every time. He has had GCSF shots, but those don't work immediately either, so poor Ty ended up with an infection every single time because his little body couldn't fight the germs. This time it will be different!

Big Apple Circus
Ty's neurosurgeon recently gave our family tickets to join him and several other patients' families at the Big Apple Circus tomorrow. We thought we were going to have to cancel and I was so bummed, but after talking to Ty's doctor I was told it would be okay to go. Given the fact that we will be in an area with a large group of children in the same condition as Ty, lots of precautions will be taken and Ty can wear a mask so he can still enjoy the show. I am so excited for him!

The show is tomorrow at noon. Gavin will be with us, and I know both boys are going to absolutely love it. They are so lucky! I will be sure to post pictures ASAP. Afterward we will be going straight to Aunt Debi's for one of Uncle Rich's amazing dinners and, of course, football.

NBC!!
I hate to put the cart before the horse, so I will only share a few details... A news crew from NBC was at Sloan Kettering yesterday to interview Lou about the upcoming marathon. Ty was on camera, too. We knew this was planned, so I brought a package with me to the hospital to bribe Ty. It was something that came in the mail and it was so beautifully wrapped (I had no idea what was inside) I decided it would be the perfect thing to get Ty excited about the cameras. It worked really well and he was SUCH a good boy. The incredible gift, it turns out, also had me in tears! (Lorraine and Kristin, we never met but I am amazed at how we are connected!!) Thank you.

After the interview, Ty became really tired. The hospital is always so crowded and we didn't have a bed assigned because his infusion was only suppose to take an hour or so. Instead, we had to sit on a couch in the waiting area while Ty received his Avastin - this is the usual. Also, since he had a cough Ty had to wear a mask and he wasn't allowed in the playroom to protect the other children.

This became a bit of an issue because the child-life specialist for the neuro-oncology patients had planned a belated birthday party for Ty that day. Instead of celebrating in the toy room, I was told his doctors and nurses would have to bring the party to us. Well, I am embarrassed to say that Ty was NOT a good sport about it. I mean, they came over with a huge poster for him, a pile of presents and a cake and all he did was yell and cry and send them away. Oh boy. What can I say, it happens. He had a long day and he just wasn't in the mood no matter what. I am posting pictures that his nurse took afterward, though, to prove that he just needed a little time and a little less attention in order to enjoy the gifts. Thank you so much to all of his doctors and nurses in neuro-oncology :) And to child-life who pulled together the surprise party for Ty, it was all really very thoughtful. I wish Ty had been more appreciative at the time, but here are the pictures to prove that the thrill of the birthday celebration wasn't completely lost ;)

By the way, before I end this post I want to point out that Ty is wearing jeans in the above picture. This is huge. This is the first time we've gotten him out of his sweatpants and into some more normal clothes in forever. And the trend continues! Today he wore corduroy pants. He is getting bedda! Goodnight everyone. Thank you so much for all of your prayers, positive thoughts and unending support.

Fun with Spot

2011-10-18T17:48:00.000-07:00

It was Ty's turn to take home the "class pet" this week. We had a lot of fun with Spot over the past few days. As long as Ty wakes up feeling well, we will be returning him tomorrow. Here is the cute note that we included in the class journal...

"I really enjoyed taking home theclass pet over the weekend. We had somebeautiful weather so Spot joined us on a nature hike. We hunted for bears the entire time and weeven came across a huge cave that me and my friends think used to be home tosome dragons!

We also took Spot to the playgroundwith us! He was scared to try the slide, so he stayed on the bench like me. After a while, though, we gave it a try and it was really fun! Mommy held our hands so we could climb all the way up to the top, but we slid down all by ourselves! All of that exercise made me really tired, too, so we took a nice nap together during the ride home."

Ty woke up a little bit congested today. I skipped his morning dose of chemo until I got a hold of his doctor. We moved forward with the evening dose at bedtime. He is sleeping right now, so I don't know how this is going to make him feel just yet. Hopefully he will tolerate it well. I am jealous that he is sleeping so soundly and I am going to try to do the same soon. Maybe some tea and a book, my new routine, will help to make that happen :) No more late night cancer research!

Lou reminded Ty that the last time he stood independently on his own two feet was Halloween 2010. He challenged Ty to keep up the good work and to try and do the same this year. I would love more than anything to get a photo of him all dressed up and standing by himself. I know he won't be able to walk without support, but I think we may be able to get him to stand for the camera donning his IronMan costume. He is so excited for Halloween, we are all looking forward to it.

Another New Chemo Cycle Begins

2011-10-16T19:35:00.000-07:00

Ty and Gavin went to see Max and Ruby at the Mid-Hudson Civic Center this weekend. For those of you who don't have small children, Max and Ruby is a cartoon on Nick Jr. that is very popular among preschoolers. It is Ty's absolute favorite, and we watch it over and over and over. I wasn't able to go, but Lou was there and he told me that it may have been the most excited he has EVER seen Ty - maybe even more than when he saw the Yankees; of course, that's just because he's so young and he doesn't know any better ;) In the meantime, I had the best time on Long Island with my favorite girls. I was there for my cousin's baby shower and stayed late to hang out with some of my oldest, bestest friends. I can't tell you how liberating it was to be out all by myself. It was the best thing I've done for myself since Ty got sick. My friends are my best therapists :)

Thanks to the amazing PR folks at Max and Ruby (they saw his story in the Poughkeepsie Journal that stated he was a big fan) and the President of the Civic Center who reached out to us this summer - SuperTy and Gavin were given front row tickets and got to meet Max and Ruby in person before the show. Lou tells me Ty was clapping, dancing and singing along like it was the best day of his life. I am so happy for him.

Today marked 21 days that Ty has been taking Etoposide (chemotherapy) orally twice a day - among many other meds. His red and white blood cell counts, and his platelets, decreased slowly over the past three weeks but he never became neutropenic which is terrific - he is borderline right now. The meds this time around have been pretty good to him! Other than increased fatigue and weakness combined with his ongoing lack of appetite, Ty has been a happy, playful little boy. I swear, he smiles more than anyone I know and he just loves to joke around. He never fails to amaze me.

Tomorrow begins another new cycle. We will be switching out the Etoposide for Cyclophosphamide (a different oral chemo) and we are adding Accutane. Anyone who knows this drug for its qualities to treat acne might be confused - and so am I to be honest. After talking to my doctor a dozen times and reading up on all of the biochemistry specifics, all I can tell you is that Retinol controls cell differentiation and cell death during embryonic development so it is believed to encourage cell death if a genetic/cancer mutation occurs. It is the accepted protocol for treatment among neuroblastoma patients when they are in remission (another terribly aggressive cancer in the central nervous system that is common among small children) and the results are promising. This is all quite experimental. There are no studies or examples of children that are the same as Ty, but so far we are so happy with how he is tolerating his therapy.

We are told that the Cyclophosphamide will knock Ty out more that the previous chemos he has taken orally. I hope it isn't too bad, because he is doing really well and I hate to see any of his miraculous upward progress put on hold. I still plan on taking him to preschool this week until he gets his bloodwork again later this week. Fingers crossed for some relatively smooth sailing. Just the thought or any additional suffering for Ty makes my heart hurt, so I pray Ty can tolerate this new regimen as well as he has the previous two.

Thank you all so much for praying for our superhero, following his story, spreading awareness, and for all of your thoughtful notes, emails, gifts and random acts of kindness toward my family. We are so blessed and forever grateful. All of our love to you all.

Fred's Team - NYC Marathon

2011-10-13T05:47:00.000-07:00

Many of you may already know that Lou will be running his first marathon in honor of Ty. The training has been rigorous, but Ty's strength inspires Lou to succeed. I am so proud of him! He is running as part of Fred's Team to raise money for cancer research. Named for Fred Lebow, legendary runner and founder of the NYC Marathon,Fred was diagnosed with cancer in 1990. He dedicated his 1992 NYC Marathon tocancer research for Memorial Sloan Kettering Cancer Center (MSKCC) and raisednearly a million dollars. Since itsinception in 1995, Fred’s Team has raised more than $42 million to fund pioneeringresearch that saves lives and brings hope. Fred’s Team has been a major source of pediatric cancer research. Please read Lou's story below. If you wish to support him, please vist http://mskcc.convio.net/site/TR/FredsTeamEvents/Freds_Team?px=1969708&pg=personal&fr_id=1460

Help me Make a Difference in the Race against Pediatric Cancer
My name is Louis Campbell, the proud father of Ty Louis Campbell. When Ty was just under 3 years old, over one year ago, he was diagnosed with cancer.

I have competed in many running races, and over the past couple years I"ve developed a passion for triathlons. So running is not new to me. However, 26.2 miles will be a first for my giant frame! The New York City Marathon has always been on my bucket list, but now I have a very special reason to run it.

In the past I have always made such a big deal about my birthday. Before Ty got sick, I always imagined my 40th birthday would involve some kind of exotic trip or extravagant party. However, not too long ago, my wife asked me what we should do for my birthday and I said that I just want to celebrate with Ty.

So this year, on my 40th birthday (November 6, 2011), my sister Debi and I will be running the NYC Marathon for Fred's Team to honor my son. Ty will be there to meet us at the finish line and wish me a happy birthday.

Ty has been receiving treatment at MSKCC for the past year and is still fighting strong. Ty's cancer is in the central nervous system. It is very rare, very aggressive, and to put it simply he has been to hell and back. Below represents some of the (new normal) that Ty has been subjected to over the past year.

· 365+ days of cancer
· 167 nights in a hospital bed
· 16 surgeries
· 44 rounds of radiation therapy
· More than 50 CT and MRI scans
On Sunday November 6th, I will dedicate this marathon to pediatric cancer research to help the children who were crying when I fell asleep and who were still crying when I awoke during the 167 of the 365 nights I spent with Ty and my wife on the 9th floor at MSKCC.

Please help me to exceed my fundraising goal toward pediatric cancer research. All donations are tax deductible and if you own a business your generosity will either go to cancer research or to the government who will tax you on it as of December 31st.

So many of my friends, family, neighbors and even complete strangers have already made very generous donations on my son's behalf. Please know that my family and I are so blessed and we thank you from the bottom of our hearts. I hope our story will inspire those who can to continue donating to the cause until there is a cure. We will never stop asking as long as there are families like mine and children like Ty who fight for their lives every day.

Thank you

Lou

Pumpkin patch

2011-10-11T19:52:00.000-07:00

This morning we went on a school field trip to the pumpkin patch. Gavin joined us and they were so cute picking out their pumpkins. Unfortunately, they weren't very willing to smile for the camera, so this is the best I could do... Gavin hunting for the perfect pumpkin... Ty holding up his tiny pumpkin during our hay ride (actually, a little girl in his class picked it just for him and he loves it)... and Gavin with a couple of farm fresh apples.

When we returned home, it was so beautiful outside I decided I should put some spring bulbs in the ground. Ty actually picked them out. He asked me to buy tulips and daffodils in the supermarket a few weeks ago and we ended up with several bags full of all different colors. This is not something I would have opted to do if it wasn't Ty who asked for the flowers :) I don't really know what I'm doing. Anyway, he wanted to help me so we went outside and he was such a trooper. I dug the holes and he threw in the bulbs. He also admired the worms we unearthed every so often. Then we played with his toys in the driveway for a little while before heading back inside. It was really nice and Ty was more physically active than usual which is always a plus. I think he was inspired by the weather to try harder.

Of course, thinking ahead to Spring is a scary thing to do. I wonder what our life will be like when these flowers are in bloom and if Ty will be running around - the picture of health - or not. I hope and pray that he will be returned to his optimal health by that time, and it's simply unacceptable to think otherwise. I just know that those tulips and daffodils are going to look beautiful next year. Ty is going to love them. He will be so proud (as will I)!

Happy Birthday Mrs. Sullivan - one day late. Love, Ty.

Wishing every day were Groundhog's Day

2011-10-10T19:31:00.000-07:00

Ty is doing great. We were at the hospital on Friday for a chemo infusion and his bloodwork came back good. His counts are declining as expected, but still strong enough that he can continue going to preschool and thank goodness because tomorrow he has a field trip to the pumpkin patch that we are all looking forward to. Gavin is invited, too, and I will try to get some good pictures if they will cooperate. Here is a recent photo of the two of them sharing a blanket on a chilly Fall morning. Ty is actually nibbling on a cheese stick - a rare moment :)

He is on his last week of this "cycle" so he is more tired than usual and he has no appetite (nothing new there) but otherwise we can't complain. He lost two pounds over the past week so I am stressed about calories, but with the help of additional supplements we should be able to get him back on track ASAP.

We are having such amazing weather here in New York so we made every effort to get outdoors over the weekend and enjoy some family time. While we were in the car at the end of a long, fun day on Sunday, Lou and I had a serious conversation about how we are both feeling now that Ty is improving. Ecstatic, obviously, but also scared as hell as you all know. Lou said that he has this impulsive dream of grabbing me and the kids and running off to live in a cave. I didn't understand. Then he explained that he feels like if we hide for the rest of our lives, that the cancer wouldn't find us again.

He said he is living each day wishing it were Groundhog's Day. Meaning, that he wishes time could stand still and we could keep living in today because we are so afraid of tomorrow. I couldn't agree with him more. For over a year, Lou and I were living in survival mode, and we both think it was easier in a number of ways because we lived in the moment and refused to look ahead. I can't wait for the days when Ty has been "bedda" for long enough that we can breath easier again. How long does that take? Because right now I'm not sure I'll ever breathe like a normal person again.

I don't mean to sound negative during these most amazing, happy times. It's just scary, and I have a hard time escaping that fear. Especially during my quiet time at night when I am sharing my innermost thoughts online. Please know that Lou and I are so happy and enjoying every minute with this amazing, miraculous, little fighter of ours. He is such an incredible boy and he amazes us every day. Look at the determination on that face as he scoots across the floor. He is getting so strong and really eager to get around on his own. I love it!

"Promiseme you'll always remember: You're braver than you believe, and stronger thanyou seem, and smarter than you think." Christopher Robin to Pooh

In case you didn't see Ty's Facebook recently, there was a great article in Huffington Post today. Please share it with your friends to help us share Ty's story of strength, perserverance and triumph. Thank you so much for your continued love and support. All of our love to you all.

Looking ahead

2011-10-06T19:18:00.000-07:00

For some reason, I am drawn to this picture. I can relate. It's not the Mary Poppins likeness so much (I am by far the opposite of Mary Poppins) but I like the idea of letting go and trusting a whimsical umbrella. An umbrella can't really hold me up in a storm of bad news, it can't even protect me from the rain if the storm is bad enough, but still it is comforting to have one in the trunk of my car at all times. I like this picture because it makes me think of an uplifting sunshower instead of a dreaded downpour. The best kind of rain is when you can dance in the puddles while the sun is still shining. The kind that ends in rainbows (and you all know how I feel about rainbows, there isn't a more beautiful or fitting symbol of hope).

Ty continues to do well on his new chemotherapy regimen. I am starting to get anxious for his next scan, which is scheduled for November 8th. I feel it creeping up on me, breathing down my neck ever so slightly. I am confident that the results will show no signs of progression because Ty continues to improve in every way, but how can I not be scared? As you all know, we have been knocked down so many times over the past year (click here for Ty's year in review youtube video), even during the times when we were the most positive. Even when there was no doubt in my mind that everything was okay, things weren't okay. But this time, things are different because Ty's most recent scan showed "no evidence of disease" for the first time ever. That's why this is so different. Ty's tumor was so aggressive, that it broke through even the strongest chemotherapy in the past. It was always doing "something" on his scans. Now, it is gone. DEAD! At night, I envision any existing cancer cells left in his brain exploding. Like a video game where I can will them into complete oblivion. Die, cancer, die! Never, ever, ever, ever, ever come back you disgusting disease. LEAVE HIM ALONE!

I believe with all of my heart and soul that it is the love, the positive thoughts, the acts of kindness and the prayers that have been sent his way that have made this happen for Ty. And, of course, his individual strength and unwavering will to beat this.

Ty had his bloodwork done less than a week ago and it showed he is still strong enough to be out in public, so Ty continues to go to preschool. Today was his fourth time there, and he was cuter than ever. Sometimes I am overly paranoid because he gets so sidetracked and I worry that the long term effects of radiation to his brain are already beginning to show (like when the teacher is talking about the weather and Ty interrupts her, pratically yelling across the room, to tell her something nonsensical about his favorite TV show). It's silly, I know, all kids to this. I am happy he gets excited and wants to share with his classmates so I let it roll off my shoulders for the most part. But I can't ignore that gnawing worry that it could be more serious down the road.

You know, as I'm writing this I'm reminding myself that I sound ridiculous. He is here when he wasn't expected to survive his cancer more than six months. He is here and has no evidence of disease, which we were told wasn't possible. Who cares if he has a little trouble focusing at school, if he has permanant hair loss, if his scars don't heal well or if his grown up teeth don't develop properly (as his dentist warned me yesterday). Seriously. Who cares! As long as my baby stays here with us. As long as my SuperTy continues to beat the odds and beat up his cancer... then we can conquer anything else that lies ahead. Oh... what a life he will lead. I just know it!

Thank you for the birthday blessings

2011-10-05T20:46:00.000-07:00

Yesterday was the greatest day. It was a miraculous day on so many levels, and it was the best birthday ever even though we did nothing much at all. Lou took off from work, and we just enjoyed our day together as a family.

We went to preschool in the morning and Ty was such a sport about it. He was really very happy to be there and I think he is getting more used to the idea of going regularly. I wish I didn't have to accompany him (so that he could be just like all the other kids) but at the same time I am so lucky that I get to observe all of the edible cuteness in that room! Those preschoolers just melt my heart. They do the cutest things. I think the boys in Ty's class don't even notice that he has trouble walking or that I am his Mommy. They play cars with him and all the regular boy stuff. The girls are more observant and they watch him a little more closely. At the same time, they are also more forward. Yesterday one little girl came right over to sit next to Ty at circle time and she grabbed his hand. Another little girl saw this, and ran over to try and wiggle her way in between them so she could also get closer to Ty. It was so sweet. I was so happy to see them friending Ty so easily. Just proves that he really is a lovable little boy (and I'm not just saying that because I'm his mother).

In an effort to protect everyone's privacy, here is a glimpse of the circle time action without exposing the other children. Ty tried to sing along and do the little dances just like his classmates.

We brought in some mini brownies and muffins for Ty's classmates, and he blew out a candle. Ty refused to wear a birthday crown (he said "no, that's not cool"), but he did enjoy being the center of attention during the happy birthday song. Here he is afterward wondering where he can get some more brownies (I actually ate his because he doesn't eat anything like that these days, but he was confused and wondering where it went). Awww! I feel bad after seeing this :)

Later last night, we snuggled up together nice and early and called it a day. Ty was pretty restless by 4AM so it wasn't a very good night's sleep. I think it was probably all of the excitement from the day before! And, all of the exhaustion from opening up such awesome presents :)

This morning he was nauseous from his medication, but nothing too bad. Worse than that is the diarreah he has (sorry for sharing, but it's true). He has had this issue for weeks on end due to the oral chemo, and it's ruining his appetite. I actually had to take a stool sample into the local lab today and it was one of those mom moments where you find yourself doing completely disgusting things for the love of your life. I will spare you the details, but let's just say it involved taping a plastic bag under his potty seat with a large enough hole so we could aim his "pee" outside of the bag. It was a disaster. I didn't hear about the results yet, but fingers crossed that he doesn't have any bacterial or viral infections causing this. I really think it is just a side effect from the meds, but we have to be sure before we can properly treat the issue.

Other than that, which is no big deal, Ty is doing terrific. He has been so happy. He is so excited about getting physically stronger, too, that he is completely wearing me out. He wants to walk around the house constantly, he wants to practice crawling (which requires a lot of support because his arms are so weak), he has a method of rolling himself off the couch without too much assistance, he scoots on his butt all around the house and likes to race us everywhere. It is amazing, how determined he is. And his new and increasing independence makes him SO HAPPY!

The weather was so beautiful today. A perfect Fall day. Unfortunately, we spent the majority of the morning at the dentist for Ty. He has the beginning stages of cavities in several places. I was told this would happen a long time ago because of his treatment. He actually isn't allowed to brush his teeth with anything but a very soft toothbrush (raking up the bacteria in his mouth too aggressively can make him sick when his counts are low, and his gums can bleed too much if his platelets are low). Poor nutrion also contributes to weak teeth. And, the lollipop diet doesn't help, either. I have a new plan in place to try and prevent further damage, but it will mean more work for me (another daily supplement and some additional cleaning using a finger brush and a special order toothpaste). We stopped by Ty's Nana's house afterward as a reward for being such a good boy at his very first dentist appointment. He was so scared, but he really did well.

We made candy apples the other day (not the best transition after discussing the dentist, but it's true), and tomorrow I am going to take Ty and Gavin to the park or something fun outdoors so we can collect leaves (like Ruby on "Max and Ruby" - Ty's favorite TV show). I just love this weather. I want Ty to have the chance to experience so much of what he missed over the last year. I pray this is only the beginning. Please continue to believe in his miracle :)

With love from Ty and the rest of the Campbell's.

Remembering four years ago

2011-10-03T20:22:00.000-07:00

Ty's fourth birthday is tomorrow. On this night just four years ago, I had no idea the love I was about to experience. I mean, how do you explain colors to a person who has never been able to see? There is a scene in the movie "Mask" where the main character uses a handful of fragrant moss to describe green, something cold to describe blue, cotton balls to describe white, billowy clouds. I don't think I can come up with a way to describe the pure explosion of love that was bestowed upon me the minute Ty was born, but I imagine anyone with children knows what I mean. Never before had I felt something so powerful.

Then there was also the gnawing fear that results from being buried under a mountain of new responsibility. Why did God think I would be able to take care of this baby?? I can't even find my glasses or my car keys?

Of course, I love Gavin just as much... but he wasn't my first experience at becoming a mom. I knew what I was going to feel, so it wasn't the same inexpicable sense of pure amazement over the miracle of life. He came with his own slew of first experiences and life lessons, though - like how to go food shopping with two under two :).

My children are my greatest blessings. I am the luckiest woman alive and I pray for Ty's continued improvement. I would be absolutely lost without him, and I know with every ounce of my being that I would never ever recover.

After Ty fell asleep tonight, I laid next to him while I was giving him his nightly dose of chemo and I just stared and stared at those lips of his. I do this all the time, but tonight I was flooded with thoughts of how those lips have always been my favorite feature since the day he was born. I kiss him on that soft, heart shaped pucker all the time when he is sleeping and of course tonight was no exception. I probably overdid it, but I am just so grateful that he is here. We have had such an incredible August and September that I have to engage in these kinds of tangible acts to remind myself that it's real! That he is really sleeping and inhaling/exhaling in a light, healthy rhythm. That his face is no longer swollen from steroids. That his hair is all grown in on top. That he was able to pull his own little hand up to his own little cheek. My baby is a four year old boy!!! Where did the time go? We were robbed of one year of his life, but I am honestly grateful for all we have been through. I can't say that I wouldn't change a thing (of course my Mama Bear instincts would take away all the pain he has been through if I could) but since what happened has happened, I can only embrace all of the good, wonderful things that have come to fruition as a result including my own enlightenment. And, of course, beg and plead and pray that my precious gift continues to improve until he is returned to his optimal health.

Happy birthday baby boy. I love you infinity.

Last year we celebrated Ty's third birthday just three days before his first round of high-dose chemotherapy began. It was our first time at Memorial Sloan Kettering Cancer Center since we decided to switch care (Ty's original tumor resection and resulting stay in the PICU was at Cohen's Children's Hospital in Long Island). We were blissfully unaware of just how much time we would be spending at MSKCC. How soon it was to become our home away from home. A big huge thank you for all of his incredible doctors and nurses who have given him the best care imaginable - despite all of the curveballs.

Today, Ty's physical therapist dropped off a walker for him, and what a nice birthday surprise that turned out to be! It's very cumbersome and he still has to get used to it before we will use it much outside of the house, but it allows him to chase his brother around the house and mobilize independently for the first time in months. It's so great to hear him laugh while he "runs" around the house. I will be sure to post a video soon.

Thank you all for your continued love and support - and all of your wonderful birthday wishes! This journey would be a very sad and lonely one without all of you cheering us on. We love you so much and we are grateful for all of your thoughts and prayers. We will be sure to share pictures of the birthday king tomorrow! He will be bringing in some brownies to preschool to share with his classmates. I can't wait :)

A fitting quote to kick off the week

2011-10-03T05:14:00.000-07:00

Birthday Blessings

2011-10-01T20:32:00.000-07:00

Today is my birthday. When I was pregnant with Ty, my due date was supposed to be October 1st and I remember how much I hoped that he wouldn't be born on that day so I wouldn't have to "share" my big day (and my cake). He was born on October 4th, and I was pleased. Today, we celebrated Ty's birthday instead of mine because it is Saturday and it made the most sense to invite all of our family over for a weekend party. Naturally, I could care less! I had the best day ever celebrating Ty. I can't believe he is here with us and getting so strong. It is a dream come true and the best birthday gift ever. He can have my birthday every year, there is no better gift than him. Here he is with his cake, my beautiful, big, almost-four-year-old.

Knowing that I would be crazy with Ty's party this weekend, Lou surprised me on Thursday afternoon and took me to the mall for a looooooooong overdue shopping bonanza. I got some very necessary shoes and Fall sweaters and it felt so good to buy something pretty for me, me, me! The funny thing is, though, we couldn't resist stopping into a children's store for Ty and Gavin during our very small window of opportunity. I have never purchased anything from the American Eagle store "77 kids" before, so maybe this bag thing is nothing new... but me and Lou both teared up a bit when the clerk behind the counter wrote this out. I don't think this was a coincidence. She has no idea just how appropriate it is.

Thank you, Lou, for forcing me to get out and buy myself some new things. I also want to thank my Pawling peeps for taking me out to dinner last night. Ladies! It was a very nice way for me to celebrate my birthday. Thank you so much for such a nice night.

Today Ty had his cousins over for a fun-filled day and I enjoyed being surrounded by family. I love everyone so much, and watching Ty playing with his cousins was so cute. We had a lot of fun with his new toys like his "science kit" and "creepy crawlers" lab. We did loads of arts and crafts today. We had a pinata that was broken open by a swift whack from his blindfolded Grandma after all the kids had a turn (how funny is that?) and I let Ty spray the whole room with blue Silly String after all of the candy was retrieved. He laughed in hysterics when we did that. In fact, he laughed all day long. What a great day. He and Gavin had so much fun, they couldn't sleep tonight. They were just too wired, and I didn't care about keeping them up late. In fact, Ty is asleep in Lou's arms right now (11:30PM) because he refused to go up to bed while the Yankee game was on. He is a fan for life :)

As I post new photos, you may notice that Ty and Gavin are both sporting haircuts. Yesterday they both had a trim and they look so handsome. Unfortunately, I couldn't get any good pictures! In the meantime, here is a fun shot of Ty with Lou until I have something better to share of the boys together with their new 'do's.

Thank you for all of the amazing birthday wishes I received. I am the luckiest person in the world. I feel so blessed, thank you. Goodnight all! XOXO.

As Ty likes to say, "I getting stawnga and stawnga"

2011-09-28T19:18:00.000-07:00

Ty kicked off today with a rigorous session with his physical therapist. What an amazing thing it is to watch him toss a ball into a bin, or scoot across the floor on his butt, racing Gavin. He is a force to be reckoned with, but you all know that.

Throughout the entire month of February and March, Ty could only move one arm and he couldn't move his legs at all - not even wiggle his toes. In April, he began to lift his strong arm to his mouth to eat, wiggle his toes, and try to support his weak arm with his strong arm. That is how limited he was. I don't think many people realize just how bad he was just months ago. In fact, he only started supporting his head in July (being able to pull away from my shoulder), and he has only been able to sit independently in a shopping cart (i.e. at the supermarket) since August. All of our previous trips to the supermarket involved me carrying him or I would place a blanket in the cart to help support him as I held the trunk of his body straight and pushed the cart with my elbows. I will never forget the first time I stepped away from the cart to grab strawberries. It was just in late July and I was so nervous about leaving him to support himself, but he did fine! It was so refreshing; like we found a whole new sense of freedom for us both.

His physical therapist is amazing. He is only on his third week of treatment and he gets so excited to show off whenever she arrives. She has two boys of her own, and I just know she must be a great mom because she so "gets" Ty and Gavin. She says Ty has an advantage because he is relearning what he already knows. In most of her cases, the children with special needs have to learn a new way of doing things that they otherwise are unable to do... so they are more or less starting from scratch. For Ty, the ability is there, he just needs to build strength and coordination. He is getting there. It is taking a bit longer than I hoped, but I have no problem being patient with this. As he continues to improve, so does the quality of life for all of us.

Just last night I was lying in bed thinking about how much better he is sleeping now that he can roll over from side to side. For months on end, he used to have to wake up Lou and I in order to turn over or reposition himself so he could be more comfortable. Now he rolls over, scoots close and wraps his arms around me at any given moment throughout the night and it is the best feeling in the world.

Christina, your comment about Lea wishing at the well for Ty to feel better and for his legs to get stronger made me cry a river - in a good way. It was beautiful. So sweet that a child his age would look at him with such love and care enough to spend her wish on his continued strength. That she noticed his weak legs without being told just melts my heart. I hope all of his new classmates at preschool - and first grade, second grade, third grade... are as compassionate and understanding should he have additional delays. I think most of them will be. There is always so much sweetness all around us. I adore being able to stay in his classroom because I just want to devour all of those three-year olds. They are so cute and just so funny!

When Ty was a baby, I couldn't wait for him to roll over, to sit up, to crawl, to stand, to walk. I just need to remember how long it took for all of those milestones to be met, yet how quickly that time went by in hindsight and how much I miss those days. Days like this one. Ahhh, my baby! I just love those baby days. Now my boys are getting so big! Thank you God.

Shana Tova to all of our Jewish friends :) Wishing you all of God's blessings in the new year! Goodnight everyone. Love you all so much.

P.S. In case anyone is wondering if the chamomile and mindless novel worked, I fell asleep around 2AM last night and slept solid until Gavin woke up at 7. Not bad!! Hopefully tonight will be even better.

Blissful days, sleepless nights

2011-09-27T19:12:00.000-07:00

I am still so restless at night. These days, however, I am happy to say that it isn't Ty who is keeping me up all night. Just the buzzing in my head. I am going to keep this post very short, because I have a new plan of attack tonight that involves chamomile tea and a mindless novel (no more late night cancer research!!!).

WE HAD A GREAT DAY! Ty had his second day of preschool, and I can honestly say that he had fun! He was engaged the entire time, he only whined to me once or twice about going home, and being around the other children inspired him to be more physically active (i.e., he wanted to practice walking down the hall with his backpack on like the others, and he wanted to try the slide on the playground afterward). The kids made apple muffins in school today, and Ty brought his home for Gavin. He also ate a handful of goldfish at snacktime, just like his new friends! This is incredible because Ty hasn't put a single goldfish in his mouth in months. I was so excited.

Ty's appetite has been pretty good considering the new meds he is on, and that is a huge relief. So far, so good. He hasn't complained. Let's see how his bloodwork comes back at the end of the week. I think it will be a strong count.

XOXO. Goodnight... sleep tight...

"The bravest sight in all the world is someone fighting against the odds." - Franklin Lane

Turning the corner

2011-09-26T19:24:00.000-07:00

Today we started Ty's new metronomic chemotherapy regimen. Some of the medication stays the same, and we are rotating in some new medication as well. We have a daily schedule - printed with check boxes on an excel chart - for up to six months. His next MRI is scheduled for November 8th. I can't even explain to you how much it scares me to have a plan in place because as you all know, every time we had any sort of schedule or protocol it has blown up in our face. Regardless, I am excited and hopeful that we have turned a corner. That this time, Ty will not face any setbacks. That he is getting better with every day and that's never gonna stop :).

Ty will continue to get Avastin at the hospital via IV every two weeks. That drug is intended to prevent any new, abnormal vascular growth which feeds the growth of new tumor. Biggest side effect concern with this medication is bleeding (due to the decreased vascular growth/recovery).

Today he started taking small doses of Celebrex and Etoposide. Yes, Celebrex, better known for treating arthritis, in combination with other chemotherapies, has been proven to trigger some sort of "self-destruct" activity in cancer cells. The Etoposide is the daily chemotherapy/systemic toxin, that is part of this regimen and it has proven to work well with Celebrex in destroying existing microscopic disease. In fact, Ty's doctor has one patient on the same regimen who had amazing results fighting an existing brain tumor. He or she was too weak for traditional chemo and radiation wasn't an option. The tumor has shrunk significantly in that child, and that is very promising for Ty considering we are only dealing with microscopic disease at this point (or maybe no disease at all! it's impossible to know, but that's what I like to think to keep positive). The worst side effect on the high doses of Celebrex is constipation, drowsiness and loss of appetite. The Etoposide may be harder on him with the side effects being nausea/vomiting, diarreah and possible hair loss.

After 21 days of Celebrex, Etoposide and Avastin, Ty will take one week off and then start up another 21 days on the Temodar and Avastin routine that we just completed last week. As we've seen, the Temodar only gives Ty occasional nausea, drowsiness and loss of appetite - but his counts remain very strong throughout treatment. We will go back and forth on the two regimens over the next few months and I hopefully Ty will do well. Hope he doesn't lose his hair! Because he is looking so cute with it all grown in on top :)

So, that's where we are at on Ty's treatment. Day one went off without a hitch. In fact, it was an amazing day. Ty ate a total of five chicken nuggets today, three yogurt smoothies, one-half turkey roll up and a couple of lollipops. This is about ten times more than he has eaten in days. He was happy all day, and we had loads of fun. We went to the park today and brought his kites, airplanes, bubbles and snacks/sandwiches for a picnic. Ty watched Gavin running all around on the playground, which worried me a little, but instead of looking sad or envious because he wanted to do the same... he was excited and asked me to help him climb and swing and slide. It was awesome. He had physical therapy at home later today, and he was fully engaged the entire time. I built a racetrack for his Hot Wheels this morning and the PT thought it would be a good idea to let him play with it and chase the cars around the house, practicing his walking and bending down to pick up the cars. He did great! He was so pooped, he needed a nap.

Gavin did, too.

Now please excuse me while I curl up next to him to do the same thing. I can't wait to get some sleep tonight. I hope I can fight the insomnia without jumping at Ty's slightest movements throughout the night in fear that he is getting sick. I think it's going to take a few days before I know what to expect, and until then I am going to have a hard time sleeping when I am so unsure of how these new meds are making him feel. Fingers crossed for at least a few hours of rest and relaxation. And, for Gavin to sleep through the night. Boy did he fight us going to bed tonight, but so far so good. All is quiet and peaceful at the Campbell's :) Goodnight and thank you so much for your love and support.