Tyler's Story

Tyler's Story

Shared by his mom

Today, Tyler is a healthy, thriving 7 year old. He has a few lingering issues related to his tumour, but otherwise is doing very well.

Tyler is believed to have been born with his brain stem tumour. Unfortunately, despite MANY non-textbook symptoms (ie chronic cough, sensitive gag reflex…etc), it took Tyler’s doctors nearly 3.5 years to diagnose Tyler’s tumour. As his parents, we knew something was wrong very early on, but we were new parents and his pediatrician tended to write off every symptom he developed as being nothing significant, i.e. his bent pinkie was simply clinodactyly, but we now know it is due to nerve issues at the level of the brain stem.

By eight months old Tyler went from thriving, though a very needy and high demand baby, to failure to thrive. At eight months old Tyler STOPPED gaining weight all together. He was 19.5 pounds at eight months. By the time of his diagnosis at age three and a half, he was only 21.5 pounds and was so far off the bottom of the weight charts that he wasn’t even on the page anymore i.e. negative 25 percentile. He’d only gained two pounds in the course of nearly three years. He had no appetite and barely ate anything and he proceeded to waste away before our eyes.

His pediatrician ran the common tests for failure to thrive and everything came back normal twice – first at age 11 months then again at age two and three-quarters when we demanded he figure out what was wrong with our son. He concluded “Tyler is just meant to be small”, yet he had essentially gained no weight since he was an infant. We went to the failure to thrive clinic at Sick Kids and saw social workers who thought maybe we didn’t know how to feed our child.

I googled symptoms constantly, searched internet blogs and sites and was convinced Tyler had a brain tumour, yet no one would take me seriously because he could walk and talk just fine – in fact, Tyler was very bright and advanced for his age in both his verbal and thought skills which is atypical for brain tumour children. And he was a real charmer and charmed everyone he came in contact with.

Finally when Tyler was three and a half, he started developing headaches which caused him to scream out in pain. His pediatrician very reluctantly ordered an MRI at Sick Kids, but warned us it would be a 6-12 month wait for a sedated MRI appointment. I asked for the requisition and took matters into my own hands fearing Tyler would never survive another 6 months (he was quite literally all bones by this point with no fat and very little muscle).

Through connections I have I got Tyler his MRI just six days later at Sick Kids. On Aug 7, 2008, Tyler was diagnosed with an inoperable grade 1 glioma of the brainstem (Juvenile Pilocytic Astrocytoma). Surgery six days later removed 60% of the tumour, the rest couldn’t be touched due to it’s location in the brainstem and extending down the spinal canal.

It took Tyler one month to recover from the surgery and just as he was back on his feet and able to walk again he underwent a second surgery to get his port-a-cath inserted in his chest wall and started chemo that night when he woke up from the surgery. Why chemo with a grade 1 Glioma?? Because we couldn’t risk even a millimeter more of growth which could mean life altering disabilities or even death (given the proximity to the respiratory center). Tyler underwent 70 chemo injections every Monday for 16 months. His tumour shrunk dramatically and he is now left with just a 1.3 cm mass in his brain stem.

Tyler lost the majority of his hair during chemo treatments. He had a favorite hat he wore everywhere (though no good pictures I could find of him wearing it). It was green plaid with a dinosaur on it. It did well to protect his ultra fair skin on his bald little head from the sun. Just before his chemo ended his hair started growing back in. Tyler earned so many bravery beads at Sick Kids for all his chemos, check ups, MRIs…etc. 381 beads in total!

We had a big open house to celebrate the end of chemo and we had all the guests sign a bristol board with a message for him on it. It still hangs on the inside of his closet as a reminder of how brave he is and how much he is loved.

Tyler undergoes MRIs every six months (soon switching to once a year) to monitor the tumour and ensure it isn’t growing. Every strange sign or twinge has us panicking, but so far so good.

Today Tyler is nearly three years post treatment and doing really well. He is in grade two and loves school. He remains very bright and very outgoing. He has some behavioral issues related to being so sick for so long during such a critical time in his development, but on the whole he is a sweetheart. He undergoes occupational therapy to try to strengthen his fine motor control in his hands. Other than that he is a normal seven year old who has come a long way, but he’s a fighter! We are so very proud of our little man for everything he went through and survived. His strength and smile kept us all going.
 

 

 


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