Monday, January 30, 2012

Abracadabra

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!

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. 

Sunday, January 29, 2012

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 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. 


Friday, January 27, 2012

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 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.

Wednesday, January 25, 2012

Kindergarten?

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

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. 

Sunday, January 22, 2012

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, however, we were in a supermarket and he got sick again.  This time it seemed to be triggered 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 a healthy snack for the first time in ages and now he probably won’t want to touch 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 are setbacks.  And, as always, Ty is taking them in stride.   He remains happy through all of this, and that makes Lou and I happy.  We just have to remember that he has been through hell and his recovery is going to be a very long one.  But we remain confident that he will get there, and that all of this toxic treatment we are putting him through now will allow him to beat the cancer once and for all.  He will be a bad-ass cancer survivor one day who wears a tee-shirt “cancer fears me!” 

I took the weekend off to spend time with some of my best girlfriends since high school.  We all left the kiddies behind for a much needed get together in San Diego!  I was really sad to leave Ty and Gavin – but I got over it quickly :)  Drinks in hand, delicious foods, lots of dinner 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. 

Wednesday, January 18, 2012

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 1.5.  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

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. 

Monday, January 16, 2012

NED - Keep the good news coming

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!

Sunday, January 15, 2012

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 admit this, but it’s true.  I drove off having no idea what to do with my free time.  Ty was at home with the babysitter and I didn’t have to pick up Gavin for over an hour.  I tried to go to the store for a present because we had a birthday party this weekend (happy first birthday Baby Jake) but I got lost!  I swear, I was just swimming in sad/happy thoughts over my boys growing up too fast that I went the wrong way for miles!  Again, so embarrassing.  I ended up spending the majority of my free time driving through windy roads, wasting gas and getting lost in my crazy head.  In the end, I got a quick manicure – blue with sparkles for Ty.  Next time I will 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.

Friday, January 13, 2012

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.  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.

Tuesday, January 10, 2012

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 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.  


Sunday, January 8, 2012

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 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. 


Friday, January 6, 2012

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 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 :) 

Wednesday, January 4, 2012

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 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.

Tuesday, January 3, 2012

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 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.   

Sunday, January 1, 2012

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 it all.  If I’m not thinking about Ty, I’m thinking about other children who are fighting 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 little soul was forced to endure pain that no person should and I want to make sure that we never stop fighting to find better treatments and prevent such pain and suffering among our children (and our mothers, fathers, sisters and brothers) in the future.  I mentioned how happy I am about the visibility St. Jude’s has had this holiday season and I hope that we see gold ribbons on cereal boxes, yogurt tops, toys and apparel in September 2012 and every year hereafter. 

So, in rereading the above paragraph it sounds like I am contradicting 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 passionate about the cause while regaining some of my mental health slowly but surely.  I need to salvage some of the fun, carefree and kooky girl I used to be.  I miss her. 

What I want for Ty this year:  I want him to be able to color more than a scribble on a sheet of paper.  I want him to be able to manipulate his toys without getting sad and frustrated.  I want to see him proudly participate in circle time at school.  I want him to have a play date with a friend.  I want him 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 things happen.  I pray that he doesn’t suffer any 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 he runs a fever.  I wish we didn’t have to worry about his platelets every time he gets a bloody nose (like the nasty one he had this morning).  I want to be able to tell him that he doesn’t need giant needles stuck into his chest each week.  But all of those things aren’t likely in 2012.  He will be in treatment for cancer this entire year.  But that doesn’t mean he can’t continue to improve.  His red and white blood cell counts have remained very strong over the past two months.  Hopefully the daily medication is at the right dosing for Ty that will allow 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 struggle to hold himself up in a sitting position, or when I see him use his right arm to pull his left arm in a new position.  When we ask him about his arms, he shows us that he can raise his right arm “wheelie good!” but then he pulls on his left arm and says, “this one just not work.  It’s too weak.”   It’s no surprise, though, that it gets me down way more than it gets him down.  He struggles, but he still scoots across the floor 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 are waiting.