We have been very anxious for the phone call we received today. The hour leading up to the time our doctor was supposed to call was torture. I could hardly concentrate on anything. And then the phone finally rang, and our doctor gave us some promising news!
He said he had just finished discussing Caleb’s case with the Tumor Board and after reviewing the pathology reports there is no evidence of AT/RT in any of their samples. They tested 6 slices of the tumor, and after reviewing all the cells in each slide nothing came back as AT/RT, or any type of cancer for that matter. I will not pretend to know exactly how samples of tissue are tested, but from what I gathered they take test slices to see what they can find. They didn’t find anything so they want to continue to test every sample of the tissue they have to be sure nothing shows up. This will take until mid-week next week, and then we will know 100% for sure that the growth isn’t cancer. There was very little tissue in the growth to begin with, as we were told by the surgeon, so I am grateful they are being so thorough as to test every last bit.
So, we are thankful to finally receive some promising news. Whether that growth was AT/RT or not was a huge deal. If AT/RT cells were present they would consider his case a relapse, or “recurrence” as they call it in the medical world. This would alter the course of his treatment, including not doing the oral chemo at home. The oral chemo is still in it’s trial phase, but the statistics so far look very promising. Although it’s hard to go through more chemo at home, long term survival results are what we are after.
And then there is the issue of going home. If the final Pathology reports come back next week and don’t show any AT/RT we will do some final lab work and come home for 12 weeks. In 12 weeks we will return to St. Jude for labs and scans, as well as some of his other routine assessments. If they find any AT/RT cells in any of the samples then we will discuss additional targeted radiation treatments (he has already had radiation back in October/November of last year). We really do not want to go through radiation again, so hopefully we won’t have to!
In other news, Grandma has been a huge help to James and I this week. She has been making us home cooked dinners, helping get Tyler to and from Summer Camp, and taking Caleb out on “adventures.” It’s been a while since Caleb’s counts stayed strong long enough for him to go out and really do things. But his energy is finally back and he feels good enough to go out and have fun, and so that’s what they did. They saw Toy Story 4 (again! Caleb just can’t get enough!) They went to the putt putt golf place, went through a car wash, dug for some “treasures”, learned some letter sounds, and many more fun things! I am grateful for her too, because when they were out having their “adventures” I got a little bit of a break and some quiet time to myself, which is rare these days! It was wonderful!
So, that is our wonderful news for today! We told the kids and they were very excited!!! They understand that Caleb has no more “boo boo spots” and we will be going back to Tampa soon. In fact, we decided that since we have no reason to stick around Memphis just to wait for the pathology report, we are going to Tampa for a few days… Friday through Tuesday or Wednesday next week. We will wait at home for our doctor to call with the final report. Hopefully it will be good news and we will fly back for final lab work and to pick up the oral chemo. If we receive bad news we’ll be flying back to talk about radiation.
Before the doctor called today James and I had ourselves convinced that the results of the pathology report were going to show AT/RT and that additional radiation treatments would be needed. We were already trying to figure out where Tyler would start kindergarten and how we would make all of that happen if Caleb had to be in Memphis longer. In some ways it’s easier for me to prepare myself to hear the worst, and then anything better than that is great. It’s better than getting your hopes up and being let down. BUT, now that we have gotten some good news about the preliminary results I do have my hopes up for being home permanently very soon. I am SO excited to go home this weekend! I can almost feel my comfy bed now… and we get to swim in our pool for the first time!!! Last time we were home it was too cold and we only used the hot tub, but FINALLY we will get to jump in that pool that we’ve been looking forward to enjoying. I can’t wait!!!
We may not know anything more about results until next week, but we will let everyone know as soon as we know something! We appreciate everyone’s prayers and support so much. I can’t tell you how wonderful it is to read everyone’s comments on both the blog and Facebook and feel that everyone is just as excited as we are. Team Caleb The Superhero is the best, and we know that you all feel the ups and downs with us, and that makes this whole ride more bearable. Also, if you are local to Tampa we are going to try to see as many people as possible, but we also need some time as a family. So if we miss you this time around, we will see everyone very soon!!! We love you, and more updates to come as soon as we have them!!!