Wednesday, February 29, 2012

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.  :)

Tuesday, February 28, 2012

Wednesday can't come fast enough

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.

Sunday, February 26, 2012

Winter Fun

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.   

Thursday, February 23, 2012


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 :)

Sunday, February 19, 2012

Fun and fear

I'm sorry that it's taken me so long to share updates. The last few days have had their fair share of ups and downs... fun and fear... but mostly fun (thank God). The few nights that I was online attempting to post an update turned out to be pretty rough. Ty has been more restless than usual, and just as I would get comfortable 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 ahead and get the "fear" part out of the way because it is weighing on my mind and it always feels better to talk about it. Three nights this week, Ty woke up in the middle of the night whining. He was only half awake and he wouldn't talk to me when I asked what was wrong. His behavior reminded me so much of how he used to be as a toddler just before his diagnosis. He was whimpering while holding his head and there has been a lump in my throat ever since. Lou and I are both carrying some extra weight on our shoulders every day as a result, and we are very much looking forward to his next scheduled MRI so we can get the good news and breathe better.

Ty's next MRI is scheduled for Wednesday, February 29th. Leap year luck, right? There are several reasons why I know it will be fine, but that doesn't stop us from feeling on edge. First, because Ty had an MRI in late-January and it was perfectly fine. Not much time has passed since then so it isn't likely there is anything 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 two nights ago to talk about why he was whimpering. He was reluctant to answer, and when he did his story was hard to decipher. He said he had head pain (oh my God, it was like the string that holds my heart in place just snapped), but then he said he just missed me and wanted me to sleep with him. In the morning when he woke, he told Lou that he didn't have a headache the night before, but when I asked him later that morning he said he did.

Did you have head pain last night?
Really? Did it hurt a lot or a little?
Not really.
It didn't really hurt, or it didn't really hurt a lot?
It didn't really hurt a lot.
Wait, so did you have head pain? I need you to answer me carefully because this is important.
Do you remember when you used to have head pain? Was it the same as that?
No. It wasn't the same.
Oh, well that's good. Ty? Do you remember when you used to have head pain and it would hurt really, really bad?
No, I don't remember.
Good. I don't ever 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 all over the place and he changes his story on us, so I am trying not to worry about it. Last night he was tossing and turning all night, and whining on and off, but he insisted he did not have any head pain. He also has a bit of a stuffy 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 that matters. 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 song to:  Valentine.  Valentine.  Would you be my Valentine?  (Instead of “Spiderman. Spiderman.  Does whatever a spider can…”).  He’s been singing it over and over and over and over again.  I am so proud that he came up with something like that all by himself.  It really reassures me that he is doing perfectly fine and doing things that any perfectly normal four year old kid would do.  Ty also received some very special Valentine’s Day packages in the mail throughout the week, and it always brightens 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 sends to Ty, because I know he will cherish them just as much as time goes by and find strength in them as he gets older.  Thank you to all of the thoughtful families who put these together for Ty this Valentine’s Day. 

On Wednesday, Lou, Ty and I spent the day at the hospital for his bi-weekly infusion.  He was such a good boy at the clinic, so we let him visit the vending machines and the candy store downstairs at the hospital (always a very big deal for 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 at Nana and Papa’s house to cash in on some big hugs and kisses and Ty was so sweet.  He loves being with his grandparents so much.

Thursday Ty went to preschool and he returned the class pet, Spot.  He was SO PROUD when the teacher read his journal entry to the rest of the class.  It’s moments like that when I am so thrilled to be there with him, sharing in his everyday preschool experiences.  They held an adorable Winter Olympics upstairs 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 more exciting events that takes place at preschool.  When everything slowed down toward the end, I showed Ty that the make-shift obstacle course was empty and I asked if he wanted to give it a try.  Just as I thought, he had a big smile on his face when I put him down and helped him to jump over the hula hoops and climb the bridge.  He wanted to do it after all, he just needed some space. 

Gavin went to his preschool class on Friday and he had a lot of fun, too.  He is getting so big!  Not to mention, so handsome.  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 two new twin brothers and we were delighted to celebrate their christening in Long Beach on Saturday.  The babies are so incredibly cute I could just eat them.  I miss that a lot.  Time just goes too fast sometimes.  The party for the twins was so great.  They had a DJ for the kids that kept Ty and Gavin entertained with games and dancing.  They were having a lot of fun which allowed Lou and I to make up for a lot of lost time with our old neighborhood friends from Long Beach.  All of the kids are getting so big!  It was so exciting to see everyone, and to see how the more things change the more they stay the same.  They are all such great people, and so loving.  I look forward to seeing everyone again at the Robert Manzoni Memorial Fund Gala this March.  This is a very special organization and we would love for anyone and everyone in the NY area to join us there!! 

After the christening, we had dinner with more great friends in Long Beach and we enjoyed the most delicious sushi!!  God, how I miss good sushi.  I don’t think it exists upstate.  We spent the night at my mom’s house and all day Sunday was a blur.  We completed our daily ritual of going to the supermarket and candy store.  We visited with Aunt Dawn and her new baby girls.  We played with Grandma, Pop-pop and Great Granny for hours on end.  We went down the block to visit with one of my great high school friends and her family (she lives right around the corner from my mom) and we got to see my cousins Debbie and Laura who I miss so much.  I was so happy they stopped by my mom’s house, it has been way too long since we've gotten together.  They gave Ty a gift 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 in a 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 share this 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 would be 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. 

Tuesday, February 14, 2012

Love to you all

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. 

Monday, February 13, 2012

Cancer is evil

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!

Thursday, February 9, 2012

Two steps forward

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! 

Tuesday, February 7, 2012

Next MRI

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!

Monday, February 6, 2012

Cute story

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.   

Wednesday, February 1, 2012

Finding Peace

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.