My alarm went off first thing this morning. The time was 6:30am. I rolled over to snooze my alarm and saw the outside temperature was 23 degrees. 23 DEGREES!!! I did not want to get out of bed but I had to get Tyler off to school. So we bundled up and went out to my van to get it warmed up. Tyler was very amused by everything being covered in ice. He wanted to touch everything. I on the other hand was just ready to get in the van and get warm. I was a bit more prepared for the cold today with a windshield cover that my dad put on my van for me. At least I did not have an icy windshield, but I still had to clear the side and back windows so I could see. I also cleared a little spot for Tyler to look out his window. Now that I know the process that needs to be done, I need to allow at least 10 minutes extra for this when it is icy outside. Drop-off at Tyler’s school goes until 7:55am, and I dropped Tyler off this morning at 7:55 on the dot!
Caleb had a clinic appointment at 1pm and we were pretty sure his doctor would have the results from his MRI and Lumbar Puncture. It was hard to keep busy all morning and not think about getting results, but we kept busy with organizing the apartment and James did some work.
As we drove to St. Jude all the possibilities of what might happen went through my mind. We didn’t have any reason to believe anything was wrong, but I think that with every scan I will always be nervous about hearing the results. We signed in to his clinic and tried to busy ourselves playing games with Caleb.
A little after 1pm Caleb’s doctor walked in the room and told us his scans looked great! We let out a huge sigh of relief. Caleb, who of course had no idea the magnitude of what the doctor just said, continued to sing Frosty The Snowman as his doctor showed us his scans. He pulled up a side by side image of his last scan this past September, and the one from yesterday. You can see the tumor bed actually shrinking. The whole tumor was removed at the end of August, which left an empty space in his brain. That space is now getting smaller as he grows and his brain fills in around that area. There may always be some sort of empty space there, but other parts of the brain will re-wire to compensate. Pretty amazing stuff!!! There is scar tissue on the outside of the tumor bed site. This is normal and expected. After the surgery was first performed it was hard to tell if all of the tumor was removed because of that tissue. But now 3 and a half months later it all looks the same and they don’t notice any new growth or any abnormal changes.
In addition to examining the tumor bed site, the MRI also took images of his spine. They did not see anything growing on his spine last September, and they do not see anything there now. They also took a sample of spinal fluid and found no cancerous cells in that either. Cells can travel either through the spinal fluid or the blood vessels, and plant themselves other places. That is why it is important to do the MRI as well as test the spinal fluid. Both look completely clear so we have no reason to believe any of those cells have spread. We will do another MRI and Lumbar Puncture in 3 months.
So the number one question we received today after sharing this good news is why do we still have to do chemo if everything looks clear? Cells are microscopic and sometimes impossible to detect. Caleb’s form of Cancer, AT/RT, is very aggressive. If we don’t make sure all cells are gone it could grow back, and possibly not in the same spot on his brain meaning it may or may not be operable if it were to come back. Our doctor’s outlook is that your first chance is your best chance, so we are going to be relentless on those cells to make sure they are killed. He is an expert in AT/RT and has seen hundreds of cases. Following St. Jude’s protocol to the full extent will give Caleb the best chance at long term survival. So, we had our moment to celebrate today, and now we will forge ahead with chemo.
Tomorrow morning at 8am Caleb will have his first Chemo treatment. We are most definitely nervous about how he will handle each chemo drug. The first 7 days are a trial chemo drug called Alisertib. Most kids handle it pretty well with the most common side effects being drowsiness and sleepiness. I don’t want to see my vibrant and funny little boy be sleepy all day. But I know I will take care of him, carry him around, and lay with him as much as I need to.
This first chemo drug, Alisertib, does not require us to stay in the hospital as some others will. He will get his first couple doses at St. Jude so they can draw his blood and monitor him closely. But by the weekend we will be administering the chemo to him at home. It is a liquid that he will drink. The downside is he has to take it on an empty stomach, and can’t eat for 1 hour after he takes it. But that beats all the fasting he has had to do the last few months! This drug makes up the first 7 days of each chemo cycle, and he actually only takes it 6 out of those 7 days.
Each chemo cycle is 35 days and each part of the cycle has different chemo drugs, with different side effect possibilities. I will explain all of those as we get there, but for right now we are concentrating on how he handles the Alisertib, and getting through the first 7 days. I will update everyone tomorrow with how he handled his first day on Chemo!