We had a small win today… The PET scan was clear. No spots lit up anywhere in Caleb’s body, not even the spot we are concerned about on the side of his head. You may be wondering why I said this feels like a small win, and not a big one. There is still a chance the spot could be cancer. It could be hiding in his bone and unable to show up on the PET scan. However, we received the most positive news we could get for the time being.
The way a PET scan works is that usually cancerous cells when clumped together are different than other cells. If there is enough tissue there as part of the tumor the dye they inject for the PET scan will cling to those cells and show up on the PET scan. Since Caleb’s spot didn’t light up on the scan, it either means it isn’t cancer, or there just aren’t enough of those cells for whatever reason for it to show up as cancer. We still can’t be 100% sure, but I am glad we are walking out of here today with some hope it is not cancer. We also know from a clean MRI, Lumbar Puncture, and now full PET scan of his body that even if it is cancer it has not metastasized. It seems if something did grow that it is localized to only that spot.
So that brings us to surgery. Tomorrow morning he will have the spot removed and hopefully the surgeon will give us some idea of what they saw. However we will have to wait a full week for the pathology report to come back, and for St. Jude’s tumor board to review his case. Our doctor didn’t want to go into specifics on further treatment options until he knows for sure what it is. One possibility is more targeted radiation in that area, but that will be up to the radiation team and how much more they think he can handle. The option that doesn’t seem to be on the table is more high dose chemo (he may still stay on his oral maintenance chemo, but that is on hold for now). They feel his body has had enough, and if this tumor didn’t respond to the treatment in the first place, more chemo won’t help. The last option would be that they remove this tumor and we just go home and wait 12 more weeks until we come back for scans.
I have mixed feelings about all the options of course. More treatment isn’t something I want to put Caleb through, and we would only put him through it if they really felt it would help. Of course I am hoping for best case scenario, which would be it is a benign growth of some kind. They remove it, we go home and continue maintenance chemo and come back in 12 weeks for scans. The truth is we just don’t know which way this is going to go right now, and I think the unknown is the hardest part. What I do know is something is growing that shouldn’t be there, and tomorrow it will get removed. I am nervous about the surgery but relieved that it will be gone tomorrow, whatever it is.
James and I were so nervous waiting for our appointment. I can’t explain the sinking feeling in the pit of my stomach that only results like this can bring. I was going crazy so I tried to distract myself by playing with Caleb and being silly! He also played for quite some time with one of the playroom volunteers. He served her food (pretend food) and built blocks with her. We also overheard him telling her he’s from Tampa, Florida but he lives here now because he got sick. It both melted and broke my heart. He is so darn sweet and it was so funny listening to him talk to someone else about our story.
We also got his counts back today and they are still pretty low. They wanted to bring up his platelets and give him a booster shot before tomorrow’s surgery so we are in the Med room getting a transfusion as we speak. Caleb had a busy morning so he is taking a nap. Of course he has no clue the stress we are going through. We would never let him know how worried we are. He is just so happy all the time and so it’s easy to be happy around him.
We will update everyone after surgery tomorrow. We are nervous but have full faith in the team at Le Bonheur. We are praying for the least invasive surgery possible, and that when they go in they don’t see anything that looks like cancer. Tomorrow will be a long day, and waiting a week for results will be even worse, but we are trying to hang in here and hope this is the end instead of another beginning.