THE DELAY CONTINUES

It’s been a busy week, as always. Many exciting things are happening as Fall/Halloween events begin and there will be non-stop events until Christmas. This is always such a busy time of year, but also one of my favorite times of year. We have been living life in a controlled bubble as we try to protect Caleb from getting sick. His counts still haven’t come up enough to start Cycle 4 of our at home chemo. At the same time we try to live our lives somewhat normally and pick and choose things that are safe for Caleb to do. Having him out in public is risky at times, but we also want him to be a kid and have fun! It’s a tough balance sometimes and the potential consequences are always on our minds.

We waited anxiously for a whole week to have Caleb’s counts checked. We went in Thursday morning feeling confident that Caleb’s numbers would all be up high enough to meet the criteria for starting the next round of chemo. However, we aren’t quite there. His Hgb was good (10.1), his ANC was just OK (510) and his platelets were only 45 (they have to be above 50 to start chemo). So we talked with our doctor at St. Jude and he would like us to wait until Monday to check counts again. Hopefully his counts will all be up even higher, and St. Jude can ship the chemo for us to get started Tuesday night. We are concerned about how long this cycle is taking again. Caleb’s bone marrow has taken a hard hit. The doctors are watching him closely, but have assured me that it’s ok that it’s taking longer, and we have time to wait. I am glad our doctor at St. Jude is still so involved and on top of things. When he worries, I worry… when he isn’t worried then I try not to be worried either.

I am bummed that our overall treatment plan keeps getting dragged on even longer, but I try to tell myself I have no control over it, and what will be will be. James and I try to plan out our lives but it’s nearly impossible to plan more than a few days ahead of time for anything. We have a calendar with his chemo schedule that constantly gets updated based on projections of good weeks and bad weeks so we can see what things we might be able to do and what events in our lives we are not able to take part in. Many times this means James and I splitting up so Caleb can stay home, while one of us does things with Tyler to make sure he doesn’t miss out on anything. I am so sick and tired of doing that, but I just keep trying to tell myself we’ve come so far, and there are only 3 cycles left.

But in good news, the boy’s school has had 3 really fun events over the last week and there is even more coming up next week. As I get to know the other parents and kids I am so happy with our choice of school. I love the sense of community that is there, and the way they teach the kids to be kind to one another. I can already see a change happening in Tyler that is just a continuation of the values that were instilled in him at his school last year. Just in this past week I took part in “munchkins with mom”, a 50’s day celebration for the 50th day of Kindergarten, and the boys attended “Trunk or Treat” with Grandma (James and I had a St. Jude event, but more on that in a minute…)

As I mentioned I love this time of year! To celebrate Halloween the boys picked out their own pumpkins and painted them and turned them into “Monster Pumpkins”. The rest of the week Caleb was home with me and we did our norm around the house… played outside, built things inside, and went swimming! It’s still pretty hot here so we are enjoying all the pool time we can. I let him take his “letter robots” in the pool and it has turned out to be the best place for learning. He has letters that transform into robots, so he just thinks they are toys, and since we are in the pool he doesn’t even feel like he’s learning. It feels like a win to me! ha ha!

 

We also had a special visitor, a little boy named Austyn! My mom watches him a couple days during the week and we finally got the boys together to play! We had a blast! Austyn is energetic, sweet, loves cars, Spiderman, and smiles the biggest when he’s eating McDonald’s French Fries!! Since Caleb isn’t in school it’s very special for him to be able to see friends, and the boys loved having Austyn here!

We also baked corn bread muffins randomly this week which is a funny story. He walked in my bedroom this week with the box of corn muffins and asked to make them. It was like 11am one day so I said well, we usually have those with dinner so why don’t we just make them later tonight? And he said “No, you just need 1 egg, and some milk, and the package and that’s it. I am a chef so I know!” He pointed to the side of the box and said “see, those are the ingredients!” He was so passionate about it and so sure of himself I couldn’t say no.

Earlier I mentioned that James and I missed “Trunk or Treat” for a St. Jude event. We attended the wrap party for the Tampa St. Jude walk/run. It was a nice evening where they recognized the top individual fundraisers as well as top teams for this past year. James took home one of the top fundraiser awards and Team Caleb The Superhero took home an award for being one of the top 10 teams, as well as an award for “Rookie of the Year Fundraising Team” (Go Team Caleb The Superhero!!!!). James and I also spoke for a few minutes and shared our story about Caleb and how we ended up at St. Jude. It was a great night with wonderful people and I can’t wait to help the Tampa Chapter of St. Jude grow as we plan more exciting events leading up to the 2020 Tampa Walk/Run!

It has been a fun and fulfilling week! The only thing that could have gone better is Caleb’s counts! But, everyone keep your fingers crossed that counts will be up Monday and we can get started on the next cycle. Until then, we are hanging in there…