We had a long day meeting with lots of people, and are still waiting some of the last pieces of the final pathology report.
With the pieces of the puzzle that we do have, we believe he has a rare and aggressive brain tumor called a Pineoblastoma. The exact varient (there are 4) is still TBD.
We anticipate starting chemo the week of May 18. Before then, he will need a g tube and a central line placed (surgerically). Until then, we are soaking up every second we have as a family of four at home, all together.
He will undergo 3, 28-day cycles of regular chemo, which includes collecting stem cells. Followed by 3, 42-day cycles of high dose chemo, which will include the stem cell transplant. That is a total of 210 days. Not counting any breaks his little body will need, possibly surgery or anything else that may arise.
Each cycle will begin with being admitted. Then, depending on how he is tolerating it, could potentially go home with outpatient treatment for the remainder of the cycle. We can hope.
Of course, no one knows how he will tolerate it or how quickly he will recoup. Pineoblastoma is also rare – about 5 in every 2 million children each year in the US. So combining that with his rare metabolic disease is truly unknown. There are no known cases of both of these in the same person, ever.
We know that his fight is going to be tough, but that Charlie is tougher. We know that we are going to spend more time in the hospital than at home. We know that the numbers are not in our favor, but he likes to be rare anyways, so it’s only fitting that he is going to be a success case here, too.🤞
Thank you for praying and loving us. 💙