We were able to have 2 days at home with no appointments before going in today to check his blood counts. We have been bracing ourselves for the downward turn after the chemo when his counts usually drop and he sleeps a lot. But, it hasn’t happened yet. He has been full of energy and we have had a lot of fun!
Over the time we had at home together we played games (especially our new favorite, Zingo) and he served me food from his “kitchen in a box”. He has also become very helpful with things around the house and he helped me put a shelf together and cook dinner one night. I let him chop the onions and hold the knife for the first time ever and he did such a good job! I told him he had to chop the onions and he would keep saying “ok, I’m chomping the onions!” HA HA
The bad news is it rained a lot the days we were home, but the good news is that meant there were lots of puddles in the parking lot of our apartment. He always wants to stomp in the puddles but I usually tell him no since we are often heading somewhere and I don’t want him to get wet. But since we weren’t doing anything the last few days I let him put on his rain boots and we went outside to do nothing but jump in the puddles. He had a blast and ended up falling asleep on the couch for about 3 hours that afternoon!
Today we had to get up early for our appointments at St. Jude. Caleb had to be there by 8am, and we still had to drop Tyler off at school before that so it was an early morning. All that rain brought in a cold front and it was in the 20’s when we left. Caleb was NOT happy and sat bundled up like a big marshmallow in his wagon for quite some time!
He got his blood drawn and then we waited for the results. His counts are actually higher than we expected them to be so we were happy. ANC is still very strong at 1700. His Hgb was a little low so we did do a blood transfusion today. His doctor told us his counts will probably continue to drop over the weekend though, so we aren’t out of the woods yet. He was also due for his last dose of chemo (for this cycle), which is a small dose of Vincristine that they call a boost.
When we hear that he has to get a transfusion we automatically know it’s going to be a long day. We had blood drawn at 8am, got results about 10am, and then we ate lunch. We were called into the med room about 12:30. The med room is where they give the blood transfusions and also where they give the dose of Vincristine. Transfusions take a couple of hours because the blood goes in very slowly. That part alone took about 2 hours, plus the chemo dose, so we didn’t leave St. Jude until about 4:30pm. It was immediately time to pick up Tyler from school, get dinner, do baths, read books, and go to bed. James and I are exhausted tonight!
All of this didn’t stop Caleb’s appetite today! I’m so thankful he is still eating really well. He has gotten very picky about what he eats, and sometimes he asks for things and then decides he doesn’t feel like it. But overall he does eat a lot throughout the day and I think this is why he still has so much energy. He can be seen below in his wagon eating a hot dog in the middle of his transfusion!
Another exciting thing happened today! My best friend is in town! Yes, Taylor is in town at a conference for St. Jude because she is volunteering to help raise money for the walk that will be in Tampa this September (Lots more details on that to come!) Even though she has been busy with the conference and we don’t really have time to hang out until this weekend, I was so glad she was there. Words can’t describe what it means to have her see the place we spend so much time in every week. I also can’t believe the way she dove in to volunteer her time to help make the Tampa walk successful so that families like us can receive the benefits. I can’t wait to hear what she learned and what she thought about St. Jude. It was very cool to know that even though she was busy today, and we were busy with appointments, that she was there and kind of getting a glimpse into our daily lives there. St. Jude is something you really can’t completely explain unless you see it. Anyways, I can’t wait to pick her brain about so many things, hopefully over Tacos and Margaritas this weekend HA HA!!!
As you can see James was also able to be with us today. It’s great to have company on long days and since we knew there was a good chance of a transfusion he came along. My favorite part of the day was the end of the day when we let Caleb play in one of the playrooms. James had to jump on the phone for a quick meeting with his boss. Caleb was playing “ice cream” and decided that daddy was also playing. So James is not only sitting in a miniature kids chair, he is also pretending to eat the sprinkle ice cream Caleb served him, all while trying to handle very important business matters. It was all too funny and I just had to take his picture!
For now we have to monitor Caleb very closely while his counts continue to bottom out. We go back Tuesday to re-check his counts, unless any fever or other serious symptoms develop before then. I am sure Tuesday will be a long day because they already mentioned that he will probably need a platelet transfusion Tuesday as well. In the mean time, we are trying to stay warm in this frigid weather. My car doors were literally frozen shut this morning, and I think the high only got to like 34! We are not made for this!!! Spring please hurry up!!! But we are looking forward to a great weekend with Aunt Taylor and I’ll post more updates soon!
Loving the puddle pictures: so normal, a commodity in short supply lately for all of you. Love and prayers continue.
Taco & margarita update INCOMING! ❤️ You.
This is such FABULOUS news! Look at Caleb teaching all of us how to “Dance In the Rain” (or “stomp in the puddles”). Thank you for the inspiration your family provides! Tasha