My 11 year old, Ethan, has Anaplastic Astrocytoma Grade 3. In 02/12, I took him for a simple eye exam & stumbled onto it. His phase I chemo/radiation protocol (he is now on his 3rd protocol) failed & his tumor grew from the size of a walnut to that of a small orange (approx. 198%). The neurosurgeon told us that it would be merely a few months & I should just take him home to be comfortable. I did; until the night his shunts failed for the 2nd time.
Ethan started his phase II protocol on 06/19/12. We had to find intense chemos because as his cancer gets more aggressive; so we have to be. He is on 3 therapies at once & it is taking its toll on his little body but it must be done. His most recent MRI shows that his tumor has reduced in size (remaining at approx. 45% larger than its original size) & his enhancement has become stable. Ethan also suffers from a 2.5 centimeter blood clot in his right jugular vein.
Ethan made medical history back in July when he became the first person ever to have his shunt eroded & wrapped itself around his heart. Surgery was performed to remove it. Another difficult battle for my son to face.
I work a full time job so that I can make ends meet. I have a wonderful boss that works around Ethan’s illness. After taxes, I barely cover my car payment, car insurance & the personal loans I had to take out in order to survive the periods I was unemployed. SSI pays merely enough to cover my rent & electric bill. There are still costs incurred while taking Ethan to & from ACH in St. Pete each 2 weeks or bills/meds that Medicaid doesn’t pay.
My friend has a grandson with the same type of malignant tumor & received a second opinion. She found that he is eligible to have his tumor resected (removed) reducing his risk of recurring cancer from 65% to a mere 10%. The doctors there have an MRI in the operating room which will allow for a more precise resection with a lower risk of brain damage or death.
The doctors here have told me that since Ethan’s tumor is located on his right thalamus that it is inoperable but the neurosurgeon in Boston has experience in “difficult cases” & I believe that there is HOPE in his case. I asked his doctor about these statistics & her personal experience. She indicated that she had treated nearly 80 patients with Ethan’s same disease & health at onset; of those, she can only count 5 surviving past 5 years.