A few good things happened today, but I’ll start with the results of Caleb’s MetPet scan. The MetPet scan came back positive for cancerous cells, however the good news is the only area that lit up in the scan was around the tumor site. The rest of his body was clean. This is what they expect because even with full removal of the tumor it’s typical for some cells to be left behind at a microscopic level. This is the reason radiation and chemo are needed. Specifically with an aggressive cancer like AT/RT, it is very important that all of those cells are eradicated to prevent tumor re-growth. As his doctor says “our first chance is our best chance” so we are moving forward with the treatment plan that has been laid out for us since the beginning. All of these tests, although hard, have given us a lot of hope. It’s strange to say we received “good news” about cancer being in his body, but he is not the worst case scenario by any means. In fact he is in a good position to beat this. But now as we begin radiation next week, we pray the treatments are stronger than those cells. We pray that the cells are not strong enough to keep rapidly replicating and that the treatment will put him into remission so he can go on to live his life and do great things!


But, one step at a time, and on Wednesday he will begin radiation treatments. Here are a few of the main things that will happen when radiation begins:

-Nausea is a common side effect, so he will probably experience that. We have medication to help.

-Hair loss will begin within 2-3 weeks of treatment.

-Caleb’s immune system will begin to weaken. Anyone who is going to be in contact with him needs a flu shot, and anyone who is sick can NOT be around him. This is critical, as his body will not be able to fight off any infections, and any fever he gets will result in an emergency room visit for him.

-He may lose his appetite, and if that happens they have medication that can help with that.

Not all kids experience all of these side effects, but we are prepared for whatever might happen. The doctors here focus on keeping the kids comfortable and out of pain, so I know they will prescribe whatever he needs to feel the best he possibly can.

Caleb also had a blood draw and for the first time they were able to use his port. I was scared of the idea of the port at first, but now that it’s in it’s pretty cool and Caleb didn’t feel a thing. When they were done with the blood draw today they took the “access” out of his port (When it is accessed there is a needle going in, and a tube kind of like an IV that hangs out). But for the weekend he doesn’t need it accessed so they took the needle out and tonight it just looks like a small bump in his chest.  You would hardly notice it if you weren’t looking for it. It’s pretty amazing. Once the stitches from the incision heal he’ll hardly know it’s there.  I’m so proud of Caleb for not being afraid of things and always looking at himself in the mirror. Tonight we named his port “Hulk”, so that is what we will call it from now on!

While all of this was going on at St. Jude, I was actually on a field trip with Tyler. This was his first field trip ever and he was beyond excited!! We went to a place called “The Pink Palace” which is a museum. They have a lot of different exhibits but Tyler’s favorite were the dinosaurs, followed by the animals, fossils, and bugs. He was not at all interested in the history/civil war part of the museum, and we quickly skipped over that to walk back to the dinosaurs! After the kids roamed the exhibits they did an activity to learn about their 5 senses. I’m so glad that Tyler is having a great experience at his new school, and glad I was able to be a part of his memories today.

Caleb was so worn out from his busy week he actually napped today!!! We couldn’t believe it, but he’s been a busy little guy so I guess I’m not surprised that it has finally all caught up to him.

We ended our day at “The Chicken Store” and had to say bye to Nana (James’ mom).  We will miss having her here to help us SO much!  James and I are on our own for a few days, until my mom arrives at the end of the week. We have one more weekend to explore and enjoy Memphis before we head into the unknown world of Radiation Treatments, so we will definitely be soaking up every minute!

4 thoughts on “A BUSY DAY

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  1. Christina, you are a beautiful writer.
    Enjoy your weekend! Lots of awesome stuff to see in Memphis. 😊

  2. I read your blogs and keep up with your Mom on Facebook. Our hearts are with you everyday and we pray for all of you each day. Hugs for all.🙏🏻❤️

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