The last 2 days have involved the same rotation of keeping Caleb home in a safe, clean environment, while also keeping him entertained. Tyler has still been spending a lot of time with grandma which has been so fun for him (and her!)
Yesterday Caleb stayed home with James and I, and we made popsicles, played games, and played a little bit outside. He had quite a bit more energy than we were expecting, which made us so happy. He hardly looks sick sometimes and it’s hard to believe he is going through all the harsh treatments that he’s been getting.
Tyler talked grandma into lunch and play time at “the chicken store” (Chick-fil-a) and he happened to run into a few of his friends from school. He was so happy that he had friends to play with!! Then he helped grandma go to the grocery store and buy the ingredients to make chicken noodle soup. Grandma’s chicken noodle soup is the best and it was so perfect on a rainy, cold, dreary day! Tyler helped shop, and Caleb helped her cook. It turned out so delicious!
Tyler and I got some outside time, and as we were playing I noticed a small Dandelion growing near our apartment. Everything in Memphis is dead right now so seeing anything growing is rare. I told Tyler to grab it and make a wish. When he was done I asked what he wished for. He said he wished for Caleb to get better so he could go on the airplane. I interpreted this as, he wants Caleb to get well enough to be able to fly home. Tyler is so sweet and is always thinking about Caleb.
At dinner I invented a special concoction I named “unicorn juice” just to entertain the boys (regular juice mixed with a splash of sparkling grape juice). I served it to them in a plastic champagne flute that we had left over from New Year’s Eve. They just thought it was the best thing ever, and that the unicorn juice made them really silly so they took some silly pictures with grandma!
Then grandma got some special time relaxing with Caleb before bed.
For some crazy reason I got inspired to bake after the boys went to bed. I made my “healthier” version of banana bread along with my husband’s favorite banana bread recipe. This is important enough to mention on the blog for two reasons… First, I used to bake a lot at home, and finally getting back to it is a another piece of the “feeling normal” puzzle that I have been missing. It’s only taken 4 months to get there Ha ha! But the best part of this story is that when I got going I realized we didn’t have any baking soda, or a mixer. It’s strange moving to a new place and literally buying duplicates of EVERYTHING you already own back at home. We have been doing a pretty good job at this, but last night in the middle of baking I discovered two things we didn’t have. So my wonderful husband left the apartment at like 10pm to go to Kroger and hunt down baking soda. They did not have any mixers so he went to Walgreens and found me a small hand mixer. Baking commenced when he returned home and I finally made my first baked goods in Memphis!
So… that leads us to today. Caleb was pretty sleepy all morning and actually went back to bed after first waking up (that never happens!)
We woke him up and took him to St. Jude for another blood draw to check his counts. He has to wear his mask when we are out in public now, because his body has no ability to fight off any sickness.
Based on how sleepy and lethargic he looked all morning, I had a feeling we might need a blood transfusion today. When his counts came back, we were told that we did indeed need a transfusion. Here is how his 3 main counts looked today:
-Hemoglobin (Hgb): 6.6
-Platelet Count: 37
The ANC did not change, as it was 0 the other day. The Platelet count has to be under 20 for a platelet transfusion so we were OK there. But his Hgb dropped below 8.0. It came in at only 6.6 so we were told to head to the Medicine Room where they had ordered blood for him. We went to the Cafe to have lunch and wait for them to call us and let us know a room was ready. Caleb fell asleep in his little wagon.
I was upset at first about the transfusion. I know this is a normal thing at St. Jude but for some reason it has been the one thing in my mind that sounds so scary. They told us that the most common side effects from the blood transfusion are fever and skin rash. If either of those were to occur, especially the fever, we would be admitted for another inpatient stay immediately. So, we had to wait about an hour and a half for them to get the blood ready for us. Then it took about 2 hours to do the transfusion. All in all the process wasn’t nearly as bad or as scary as I thought it would be. This all of course is because Caleb handles everything so well. He was very calm and we just hung out in the hospital bed while the blood went into his “buddy”. They have a TV in the room so we just rested and watched a movie. He is allowed to eat and drink so that is good. But he never once complained or asked to get up.
I am now writing this late in the evening and so far Caleb has had no adverse reactions to the transfusion. In fact, he was full of energy tonight. We played games and had dinner and he played with Tyler. He was so funny and full of life. We were shocked, and so grateful that he was feeling so much better tonight!
Tyler of course had another fabulous day with grandma! She took him bowling, they went to the movies, AND he even talked her into more play ground time at the Chicken Store! He’s a lucky little guy and we are so lucky that James and I have both been able to focus on Caleb’s health this week. Every time something new happens with Caleb’s treatment, James and I both like to be with him. Without grandma’s help this wouldn’t have been possible so we are so thankful she was here!
We will continue to monitor Caleb closely tomorrow and then return to St. Jude on Sunday for another blood draw/count check. I am praying his counts have recovered enough by then to need no more transfusions for this chemo cycle. No matter what I am so proud of both of my boys. Tyler adapts to any situation and cares so much about his brother. Caleb has been so brave and goes along with whatever the nurses ask him to do. He’s such a fighter and he’s so strong. I know he probably doesn’t feel well some days, but he’s always so happy and sweet. I am so blessed to have the best family ever. I will update everyone again on Sunday after we have more information on blood counts!