Posted: November 5, 2014
4 Years Old at Diagnosis
In the Fall of 2008, my son, Sam, started getting terrible headaches that had him screaming and crying. These headaches woke him up around 15 times a night. We took him to his neurologist at the Cleveland Clinic, and b/c of Sam’s neurofibromatosis history, the doctor ordered an MRI of the brain. On December 30, 2008, we heard the horrible news any parent would dread hearing, “Your child has cancer.” Yes, they found a brain stem tumor/astrocytoma/glioma on my young, 4 year old son’s brain.
We cried on the way home that afternoon, and each time we told a family member and friends. So many questions ran through my head…will he survive this?…will he have to endure chemotherapy for a long time?…will he be hospitalized for a long time?…and many, many more.
The tumor review board at the clinic met and found that it was a slow growing tumor, so we would take the “wait and see” approach. They scheduled MRIs for Sam every three months to track his tumor. He was fortunate that his tumor remained stable until July 2009…the month before Sam’s Make-a-Wish trip to Disney World. At that time, the tumor had grown and was decided, by the tumor review board, that Sam needed to start chemo.
After our Disney trip, Sam had a port placed on August 13th 2008, and started chemotherapy the same day. He received Carboplatin and Vincristine. As long as Sam’s counts were high enough, he received these drugs weekly at the clinic in outpatient. Sam’s ANC counts were low and sometimes too low to receive his treatment. We would still have to make the 1 hour 45 min drive to Cleveland, regardless if he got his treatment b/c that is where they did the blood draw. He got nauseated after each treatment and also had bowel issues, along with sore/blistered gums, hair loss and fatigue.
After ten weeks of treatment, they did another scan. Here, they found that his tumor had grown again!! So, they took it to the tumor review board again. His chemo drugs got changed to Carboplatin and Vinblastine and would receive higher doses, but every other week. Sam only was able to receive a couple of these b/c his counts were always so low with the higher dosage. Then, he developed some type of allergic reaction and would did and dig at his left ear while crying. My little baby was in such pain and misery!!! Around December, they decided not to put him through this anymore and changed his drugs, once again.
Sam started taking Avastin and Irinotecan in January of 2010. He received these every other week, along with medications for itching and nausea. He also had MRI scans every other month. The first scan after taking these new meds showed a 33% decrease in tumor size!!! We were so happy and excited. Sam continued on these regimen through November 26, 2010. His tumor shrunk once more, then tapered off and remained stable.
Sam has not had treatment since then, and has had his port removed (August 2011). He endured so much as a child and is a true warrior!!! I am so happy that his tumor remains stable and that he is such a happy child, despite all that he has been through.
He has never asked “Why me?”, but just continues fighting. Even when he received the Avastin/Irinotecan, he would vomit 2-4 times on the way home from Cleveland and once he got home. But, he would just get sick then start smiling again!!! He was and still is, such a trooper!!!
He does continue to have late side effects of the chemo – some learning delays, some gross and fine motor delays, sensitivity to heat and cold, and fatigue. He also has difficulty walking any distances, and has to use a stroller when going to zoos/amusement parks, etc. However, he remains happy and does not complain.
He helps me with fundraising projects for childhood cancer research. We want to be able to help with childhood cancer awareness and help raise money for research, so that someday there WILL be a cure for this horrible disease!!
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