Theo’s doing alright. He’s tolerating the chemo well and handling the trips to the hospital like a pro. He has a perpetual case of the munchies owing to a particularly high dose of steroids. He got to spend the day with his Mom at the Zoo. And, he even got a bunny last weekend -- Punky Jr.
What he didn’t get was a great result on his first MRI after seven weeks of chemo.
Hearing the news -- that the tumor had grown -- broke our hearts. But, we’re refocused. And, we know that the new line of chemo -- a combination of three (Temozolomide, Irinotecan and Bevacizumab) -- will stop the tumor and destroy the cancer cells.
Although, this chemo has stronger side effects and takes longer to administer, the treatment protocol is biweekly, as opposed to his previous weekly schedule, which is why he was able to go to school today. And, that’s the silver lining here!
Thank you so very much, for your continued prayers and support.
Heroes Fight Big Battles - Theo’s Journey With Optic Glioma Begins
My son Theo is 6, and last Sunday, he told me he had a goal. He wanted to take the training wheels off his bike. He said he would practice everyday until they were off, so he could be a real biker.
That was interrupted on Thursday after an eye exam at Nemours turned into an inpatient MRI of the brain at Wolfson Children’s Hospital and a diagnosis of optic glioma - a brain tumor that grows along the optic nerve. We learned the damage caused by the tumor was too extensive for surgical removal. He had already lost vision in his left eye and surgical removal would not reverse this. Further, the risk was too great to the optic nerve on the right.
Theo will begin chemotherapy this week after surgery to implant a port. He will continue chemo once a week for the next year to stop the tumor in its tracks and then shrink it.
He is being tested for NF type 1, but we are confident he will test negative, this will be his first and last tumor, and we will be celebrating a full recovery and remission this time next year! We will keep you posted.
In the meantime, we are asking for your prayers and support for our sweet Theo.
Oh, and today when he got on his bike, he took off like Flash. He said he was in training - that’s how you become a real biker.