Now that we received the good news, it’s time to hear about Caleb’s custom treatment plan. Our first big meeting of the morning was with the Radiology Oncology Team. Yes, our little Caleb has whole teams of people in each department working to make him better! The teams usually consist of a nurse, a resident, and the doctor. I am still learning all the lingo but that seems to be the norm.
We received even more good news at the start of this meeting. His Spinal Fluid came back negative for any cancerous cells. Once again, a mini celebration happened in the room. Caleb’s overall treatment plan will begin with radiation, and then he will have chemo treatments. Since we are starting with no more tumor growth, and the cancer didn’t metastasize (spread to other parts of his body) we are able to treat him with a little bit lower amount of radiation than we originally thought. This is wonderful news because the long term effects of radiation are harsh and unforgiving. They are going to radiate his full brain and spine, with extra concentration on the tumor cavity. They call that the “boost site”. Caleb’s best chance at survival is making sure this tumor growth does not come back. They had warned us on the phone before we chose St. Jude that their aggressive treatment plan is the reason for increased survival rates based on their research. So we came prepared to fight this battle hard, and worry about the consequences later. If Caleb isn’t with us, the long term effects won’t matter. So saving his life is priority number 1!
For anyone familiar with radiation treatments, they measure the amount in “grays”. Caleb will receive 23.4 grays over the 6 weeks of radiation. They hit him with a very low dose every day, and that low dose will be, as I said before, full brain and spine. The boost site will receive double this amount, which will include the tumor cavity plus a small margin. This will be 5 days a week, and he will need to be sedated each time so that he is completely still. This will be hard on our whole family, as Caleb won’t be able to eat or drink a certain time prior to sedation, and then he is very sleepy, usually a bit cranky, and unsteady on his feet after. So this will be our lives… helping Caleb cope with that while also trying to keep a somewhat normal life for Tyler.
And speaking of Tyler, he started his new school today. It upsets me so much that we had to uproot him from his friends and a place he loved so much. But I can’t live without seeing him every day, and so it is important for our family to stay together here. It seemed like he had a very good day. He talked about one friend he met, and told me they are learning about dinosaurs. He makes friends to quickly so I know he will adjust, but I do worry about him. It’s all very confusing to him as to why we are here and aren’t going home. Luckily there is a team at the hospital called “Child Life” that helps the patients and siblings understand their treatments and why they have to be there every day. They are going to meet with both boys next week to simulate a radiation treatment on a doll and show them how Caleb with get his “medicine” every day. The Child Life Team is amazing and I am so grateful St. Jude has this to offer.
That is all for today friends… tomorrow’s schedule includes a Neuro-Oncology appointment with Caleb’s doctor to hear more about the chemo schedule, side effects, and all of those details… and then he will have to be sedated again to undergo a CT simulation. This is where they do a CT scan and map out the exact areas the radiation will hit. They also make him a mask that will go over his face and help to keep him in the exact same position for every radiation treatment. The mask kind of looks like a fencing mask. I will have to get a picture of it! But as I mentioned Caleb will be sedated every day so none of this will be scary to him. He won’t really even know it happened, which I guess in this case is a blessing.