Honored Kid

William K.

Age 11
William K. Kid Photo

Location

Summerville, SC, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

October 2019

Status

In treatment

Treated At

Children's of Alabama MUSC Children's Hospital

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My Story

When he was about 3, he was diagnosed with Neurofibromatosis 1 (NF1), which is a genetic condition that causes tumors to grow on nerves throughout the body. Initially it was just a condition to keep an eye on, as he had no symptoms of tumors. Fast forward about 6 years and William began to have leg pain on his left side. After a couple weeks of the pain beginning to increase, His pediatrician due to the NF, ordered X-ray and a referral to orthopedics. Everything comes back normal, so then he has a hip MRI which comes back normal. The pain got worse, so I have the pediatrician give us a referral to pediatric neurology and a couple months later see him and get a spinal & brain MRI. They found a neurofibroma (non-cancerous tumor) in his spine between the L1&L2, on the left side. After the neurosurgeon deems it inoperable, due to location of the nerves that the tumor is entangled with, we get a referral to Neuro-Oncology. After lots of pre-tests and exams to make sure he is healthy enough for chemo (& to get his “before” picture), the week of Thanksgiving 2019 he started a type of chemo called a MEK inhibitor (Trametinib), it is a pill he takes 1-2x a day. He has regular appointments with the Oconcology/Hematology Clinic with labs. He handles the medication fairly well with minimal side effects. He’s had eye exams every few months and imaging done on his heart & kidneys routinely to ensure they are staying healthy. We have met with a team at the University of Alabama in Birmingham including a highly recommended NF specialist. His insight and knowledge of NF is comforting and helpful. William's tumor has remained stable and his pain has mostly gone. He has developed other back problems, just from the weakness due to the medicine possibly, but he doesn't let it slow him down anymore. We are so incredibly grateful for the research with St Baldricks and with the Childrens Tumor Foundation. The research has enabled our doctors to have treatment options for William and kids like him to be free from pain. We have seen Gods miraculous healing in the past, and I am confident we will again.

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