A lot has happened since I last blogged, so here is what has been going on. We thought we would be starting his 4th chemo cycle tomorrow evening (Friday) but Caleb’s counts took another dip after coming home from Memphis, so the 4th cycle will be delayed. His doctor told us this could happen, so I don’t think it’s so much concerning as it is disappointing that we aren’t moving forward. I am ready to get these last 3 cycles finished.
The day we left Memphis James and I signed paperwork to be part of a research study related to AT/RT. They are testing Caleb’s tumor material and blood compared to a blood sample from James and I. We had to register with St. Jude and we each got our own patient arm bands. Caleb was amused by all of this, and by us having to get poked. He held our hands so we wouldn’t be afraid during the blood draw. Then when that was finished it was time to head to the airport and fly home.
We spent the weekend having fun. We went swimming and went to the movies 2 times. We were confident that Caleb’s counts were up because they were fine at St. Jude. This should be his recovery week where he feels good before we start chemo again, and we had no reason to think otherwise. I even sent him to school on Monday! But as we would soon find out, his counts were dropping.
Something very exciting happened on Monday night! We have been wanting to get a play set for the backyard for a while. Tyler loves to climb and needs an appropriate place to get his energy out (so he’s not climbing my furniture ha ha!) and Caleb’s counts are often not high enough for us to go to a public place to play. So, our own play set would be a good thing for so many reasons!! Last month we went to a big warehouse in Tampa that has play sets and we watched the kids play on them to see what they would like best. They had to order the one they liked and we surprised them with it Monday after school. They have already had so much fun on it! I know it will make for some good memories! I hope they know how lucky they are because this is their birthday, Christmas, Easter, Valentine’s day, etc. present for the next year ha ha! It was all worth it to see the excitement on their faces.
Our confidence in Caleb’s counts changed when we had a count check on Tuesday morning. His counts came back surprisingly low! His Hgb was 6.9, his platelets were 37, and his ANC was only 200. I was definitely surprised, although our doctor at St. Jude mentioned that his counts might dip again. But we were hoping that he would meet the criteria for his next round of chemo and be cleared to begin. However we were asked to come back Thursday and see how things were going. If his counts didn’t start to turn around then we would need some transfusions. So, it is now Thursday and sadly his counts dropped even lower! His Hgb was 6.7, platelets 27, and ANC 220. Caleb’s doctor decided to transfuse blood to make sure he’ll be ok over the weekend. After speaking with Caleb’s doctor at St Jude he feels we should give Caleb a full week to recover and then check counts again. This is a real bummer for so many reasons. We have so many events over the next few weeks we want to be a part of and it’s impossible to know how Caleb is going to be. And ultimately a delay in this cycle also delays the end of treatment. So, just a big bummer!
We’ve been keeping a close eye on Caleb’s leg. He sometimes complains of pain, and has been limping a little when he walks. But he only limps sometimes and the pain is only there sometimes, not all the time, so we have just been monitoring it. But the fact that this has been going on for weeks is concerning and today his doctors decided to do an x-ray just to rule out any issues. I haven’t gotten the results back yet so we’ll see if the X-ray shows anything.
But Caleb and I have been making the best of our unexpected time together (I thought he’d be at school this week). We went swimming and of course he now has his new play set so that has been awesome. He was a little bummed about not going to school, but going home to the play set definitely helped make up for that. Since he was a baby he loved to swing. He would swing for hours if he could, So we have been doing a lot of that!
That’s all for now. We will check Caleb’s counts again in one week and hopefully they will be up enough to start chemo next Friday or Saturday! But look at this goof ball… he was hunting aliens today in our bathroom. I love his imagination so how could I not love spending time with him?!
