Monday, September 3, 2012

Pre-Diagnosis: Who would have ever thought he had CANCER?

Ty was like any other child who is diagnosed with cancer.  At 2 years and 10 months, he was 100% normal.  Childhood cancer doesn’t discriminate.  There is no known cause.  It strikes innocent children across all races, demographics, geographies.   One day a child is on the swings, going to school, playing with friends.  The next day he is fighting for his life.   He was and is the sweetest most beautiful little boy.  Watch this ten second video to capture all that he was then, pre-cancer, when all was right with the world.  I can't believe how much he has suffered since those happy days.  It just doesn't make sense how a little boy like this can have something so evil happen to him.

LAUNCH THE VIDEO

I often reflect on the months leading up to Ty's diagnosis.  I have always talked about Ty's terrible sleeping habits since the day he was born.  Maybe the problem with his poor sleep habits originally rooted in the fact that Ty was my first baby.  I was so incredibly worried and protective.  Yes.... we let him cry it out (and I cried as much as he did) and yes.... we tried the whole "silent return" technique where we walked him back to bed if he would wake up in the night without saying a word.  I researched every theory and tried a number of techniques but Lou and I were most comfortable with following our instincts.  Bottom line... Ty was my first baby, I probably coddled him because of the indescribable love I felt for him that was so powerful it could take my breath away... and besides, nothing seemed to work other than cuddling with him and rocking him back to sleep.  We knew we were creating a monster by spoiling him (and to some degree, I'm sure we did).  He woke up every night, at least once or twice, from the very first day he was born until the day he was diagnosed. 

Lou and I were always exhausted.  We just wanted Ty to sleep through the night.  By the time he was two and half it seemed to be getting worse instead of better, so Lou came to the pediatrician with me and asked "what if he has some crazy brain tumor or something?"  I remember hitting him on his arm when those words crossed his lips.  "Don't say that!" I whispered in horror.  Not to make light of our concerns, our doctor instead suggested we try a sleep study before subjecting him to anesthesia for an MRI.  This was his recommendation for several reasons, mostly because anesthesia is dangerous and he didn't believe anything was going on in the brain to be causing the sleeplessness.  There were zero neurological symptoms, no nausea or obvious head pain, no developmental delays, Ty was perfectly healthy otherwise. 

Our visit to the pediatrician was around July 30, 2012.  A couple of days later, I was able to book an appointment at a sleep clinic for August 20th.  Then, over the course of the next week, Ty became more and more restless.  He was crying much more and much louder with each night, but he seemed perfectly happy and normal during the day.  We actually took a couple of videos because we thought it might help the sleep analysts.  We truly thought he was having nightmares.  Now that I know he was suffering from headaches, watching this makes me cry buckets.  You'll see how he cries in pain, then falls asleep again for a while before he's woken up again by his own discomfort.

SLEEP VIDEO
We know for a fact that Ty's original tumor was a high-grade, very fast growing tumor. I believe that during the last week pre-diagnosis, when things at home got really bad, that was when the tumor became big enough to cause enough pressure on the brain stem that triggered headaches whenever Ty was lying down. I don't think his sleepless nights prior to this time frame were related to the tumor at all.  I don't believe Ty had cancer for a long time before it was discovered.  On the contrary, I think the fact that he always had such poor sleeping habits made it harder to notice the abnormalities when they began.  So he was waking up a lot in the night.  Whining.  He always did that to some degree. 
As any mother in my shoes, I am plagued with guilt.  I constantly question if I might have done something in utero to damage Ty's perfectly developing body.  When he was a toddler I didn’t always buy organic fruits and vegetables because they weren't always available at our local supermarket, and because they can be ridiculously expensive.  That haunts me because of course I would pay any dollar amount for organic foods if that would have made the difference in whether or not his cells decided to mutate.  I would give my limbs to pay for them.  I also question, did my stress at work manifest into his disease (as in "The Secret" - I want to burn that book for making me feel even more responsible)? 

We'll never know what caused Ty's cancer.  This sad fact is true for almost all children with cancer, too.  There's very, very little research or understanding around why/how it develops.  Help us to spread awareness so we can someday find answers that will save our children. 

Ty Louis Campbell last summer.  July 2011
 

2 comments:

  1. Cindy,
    Watching that video of Ty in the kitchen makes me giggle and cry at the same time. He is so damn cute! Please know that Charlie and I are thinking of you guys and praying for you and Lou, and of course precious Ty. Love you guys!


    ReplyDelete
  2. Cindy you did not cause Ty's cancer,nothing did. He is adorable, always will be, please hold on to anything and everything that brings you comfort and always remember that no matter what happens you'll always be his loving Mom.

    ReplyDelete