Since I last updated everyone we have gone through our second cycle of chemo at home, and are now in the recovery phase. I am happy to report that Caleb seems to be recovering much faster this time! We had one goal for this cycle, and that was to stay out of the hospital!!!
The 2nd cycle of chemo was rough this time around. Caleb was loopy and crankier than ever. When he doesn’t feel right he doesn’t know how to express it, so he gets angry. For anyone that knows Caleb this is not like him at all, and his personality is completely different when he’s on the chemo. The effects do seem to wear off later in the day, but not before being demanding of everything (my attention, food, etc) and running to his room and slamming the door shut if I tell him no. These are some Looooong days for us, but we get through it. I am also afraid to send him to school during this time because I know he isn’t 100% himself and we also aren’t sure how fast his counts are dropping during this time. So I decided to keep him home for the entire week of chemo, and last week while he was recovering. He misses Tyler so much during the day and can’t wait for him to get home and play!
However, we received good news today. His counts are already up. This is much faster than last cycle! He only had to have one blood transfusion for support, but it seems that his bone marrow is starting to recover because he usually has to have several transfusions each cycle. We think since his body was fighting a virus, and he had that spot open up on the side of his head, etc, his body just had a lot to combat last cycle. But, this cycle we have been very protective! We try not to keep him in a bubble but we also try not to expose him to places with a lot of germs. For a few days when he was at his lowest point I didn’t even take him to the grocery store or to school to pick up Tyler. Anywhere that we had to go I made him wear his mask. I wasn’t playing around this time. We are so sick and tired of making ER visits. It’s not easy though… The neighborhood kids knock on the door and ask if our kids can come out and play. We try to quietly turn them away when Caleb is at his lowest. It’s not fair to Tyler, or Caleb, and it breaks our hearts but we don’t know what to do sometimes. We say no to social engagements or making any plans within a day or 2 ahead because we never know what’s going to happen. If we do go somewhere we weigh the pros against the cons, we evaluate the risks, and decide if mask wearing and hand washing will be enough to keep him safe. Life is a series of complicated decisions when things like running errands and going to friends houses really should be an easy decision. BUT… it looks like it may have paid off this time around. His counts today were Hgb 9.4, Platelets 38, and ANC 1210! We were thrilled! An ANC over 1,000 is strong enough for me to feel comfortable with him going back to school.
Caleb has only been able to attend school 3.5 days so far this school year. When I told him his counts were high enough to go back to school tomorrow he was excited, and we celebrated with popsicles and swimming! Our favorite things to do at home are swim, read books on the front porch swing, watch the construction at the house a few doors down, and nap! Well, I think I like napping more than Caleb but he usually goes along with it!
But times like this are bittersweet because I will miss him tomorrow, but I will also be happy to get a million things done around the house that I have been needing to do. I am excited for him to go get to know his classmates better, but I am also sad that he’ll only be able to go to school for 2 weeks until he has to stay home again for the next round of chemo. I wish he didn’t have to take those giant breaks. It really breaks the rhythm of our lives to switch back and forth. And tonight Caleb had definitely started to think about school again tomorrow… he said his tummy hurt and I could tell he was nervous. He kept asking questions about his friends, and how will he know what to do? I know he’ll feel comfortable once he gets to school, and he’ll fit right in, but I hate that he has to go through the “first day jitters” over and over again.
And then came the real surprising question that James and I weren’t expecting… right before bed… he looked at us and said “but what if I have to move back to St. Jude?” Ummmm…. silence, from both James and I, as we choked back tears and told him “no… we won’t have to do that. We are just going to visit for checkups from now on…” But we don’t really know that. Tomorrow is not promised. Relapse is our biggest fear. But, we have to put on a brave face for our Superhero. We have no reason to worry right now. No evidence that anything is wrong. So, we will take one day at a time and worry more as scans get closer, which is in about a month.
As we fell asleep tonight, with him nervous about school and a big thunderstorm going on outside, he leaned over and hugged me. I gave him a big squeeze and as I pulled my arm away he said “mommy, can you leave your arm there?” He’s so sweet! These are the moments I want to last forever!!! I hope I eased his fears about school tomorrow. I know Tyler will walk him to his class and make sure he’s ok. I know his teacher will take every step to keep him healthy and safe.
As I mentioned, if all goes well he’ll be able to attend school the next 2 weeks before we start the next chemo cycle. We have 2 big events before then… our big St. Jude run/walk in Tampa this Saturday and Tyler’s 6th birthday next week. I am SO thankful that these events are falling in the part of his cycle where he is strong enough to attend. I’m praying he stays healthy and strong so we can have a fun 2 weeks before we start the cycle all over again.
So grateful he is doing so well with this last round. You two are wonderful parents. Will pray for your continued strength and wellness.
Continued prayers for Caleb the SuperHero & his amazing family!! Each of you truly exemplifies the meaning of “superhero” & are an inspiration to the rest of us!
Continued prayers for Caleb and family. He is such an inspiration of how St. Jude works their magic.