Today our morning started with a meeting with Caleb’s Neuro-Oncologist. He is the main doctor overseeing Caleb’s treatment plan. He is the reason we chose St. Jude. He made James feel comfortable on the phone with him from the very first thought of coming to St. Jude, and today was no exception. We spent an hour of his time answering EVERY question we had about chemo, Caleb’s chances of survival, chance of tumor recurrence, side effects, genetics, and on and on… you name it, we asked it, he answered it. He is the most down to Earth and amazingly smart person I have ever met. I wanted to cry after our meeting because I am so grateful that God led us to St. Jude. It is no accident that we are here, and we met him, and I truly believe no matter what the outcome we are in the best hands we could be in with him guiding the way.
So, we covered MANY things in this meeting but the most important being all about what will happen during the chemotherapy part of Caleb’s treatments. I am going to post his proposed treatment plan on the “Treatment Plan” page of this blog, but here are the highlights:
- Caleb had a total resection and it’s non-metastatic, so there is a 70-80% chance it will not grow back.
- We will have another MRI and Lumbar puncture in between radiation and chemo.
- We should be able to go home to Florida for Thanksgiving (YAY!) but not for Christmas (BOO!)
- Any fever he gets during Chemo will be treated as an emergency because of risk of infection (this is why we can not travel home at all during chemo treatments)
- His Maximum risk of recurrence is within the first 2 years, and we will have to travel here for an MRI and Lumbar Puncture every 3 months for the first 2 years.
- …and a lot of other details that I can’t think about or aren’t important right now. We will take one day at a time…
After this appointment we had a few small other things, and then our last big appointment was a simulation of Caleb’s radiation treatments. So for this they put him in the CT machine, and created the mask that will help them target the proper spot for radiation treatment. He once again had to be sedated, which meant he wasn’t allowed to eat all morning, and no clear liquids starting 2 hours before. These “NPO” instructions are something we are coming very familiar with, and it’s hard to explain to Caleb why he can’t have a snack or any breakfast 🙁 It’s one of the hardest parts. But I know we will all adjust over time. That completed our day of appointments.
We came back to our room for a short time and then it was time to pick up Tyler from school. I am so happy Tyler is staying in a normal routine surrounded by learning and new friends. He came home happy because he got to pick a toy from the treasure chest for good listening. I am happy we are all adjusting to our new lives.
St. Jude doesn’t schedule weekend appointments so we finally have the weekend off. I am participating in the St. Jude Run/Walk 5k tomorrow morning, and as part of that there is a huge event for families to take part in. Then the rest of the weekend we will try to explore some more of Memphis before Caleb starts feeling too tired to go out and about much. I am looking forward to a “normal” weekend.