Showing posts from January, 2012


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.  To
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

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 do

Twinkle Twinkle Little Star

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 lat


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&#

Happy to be home

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

Improvement and Mommy's weekend off

Ty   has shown improvement since his shunt was reset on Wednesday afternoon, but we have to be patient.   We had a long conversation with his doctor on Thursday because some new symptoms developed, but the plan is to give him more time to recover and drain the build-up of CSF fluid in his ventricles.    Over the weekend he was feeling much better.   I love/hate this shunt so much!   His eyes are still glassy and bloodshot in the corners.   At times I caught him shutting them tight, but I think it was because the light was bothering him.   I asked him if he had pain but he said no.   Then he vomited on Thursday afternoon when he tried to eat some noodles at lunchtime.   This was a first in a couple of weeks or so.   I was so disappointed, too, because Ty was actually willing to eat the noodles, which was a very big step in our attempts to expand on the list of foods he will eat.   At the time it seemed as though it was triggered by his very sensitive gag reflex.   Later in the day,

Wine in hand - everything's gonna be alright

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

Another unexpected bend in the road

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

NED - Keep the good news coming

Ty had a follow-up MRI this morning, which confirmed that there is n o e vidence of d isease 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

Take lots of pictures

Gavin’s first day of school was great.   He wore his new skater shirt that he picked out (because of the red – his favorite color) and he was so handsome.   When I was talking with his teachers 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 I lost so much of that precious baby time with him.   In fact, whenever I snuggle him and call him my 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 was walking 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 crying almost as hard as I’ve cried over Ty’s cancer!   I’m actually embarrassed to ad

School days

 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.

What angry meds? These are happy meds!

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's Baaaaack

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

So happy

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 appe

The tortoise wins the race

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 abiliti

Welcoming future worries

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 si

Resolving to travel light and pick more daisies

Goodbye 2011.   I didn’t like you one bit.   It was a painful year, but we are still beyond grateful for the miraculous year it was despite all of our pain and suffering.   There were several months where we were living on borrowed time with our son.    Then there were the triumphant moments of sheer rejoice.   I can’t even begin to tell you what it feels like to welcome a new year while holding our special boy in our arms.    So with that, I am excited about the new year ahead of us.   A fresh new 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 my shoulders for well over a year.   A great friend of mine (also a cancer survivor) often reminds me to live in each day.   Not to get so caught up in the past or the future.   I am resolving to try my best, but I can’t make any promises.   I’m so plagued with worry all the time and I’m just not sure how capable I am of freeing myself from the heaviness of i