I am here to report we are still (patiently) waiting for Caleb’s counts to fully recover. The recovery this cycle has been painfully slow, like watching paint dry, or watching grass grow. BUT we are hopeful that Friday will be the day. That is our next scheduled count check and hopefully that will be the day we get the thumbs up to start our 5th and final cycle of chemo here at St. Jude.
In the mean time we have accomplished a few things. The most important being the fitting of his hearing aids. On Monday afternoon we met with Caleb’s audiologist to make the mold of his ears from which they will make his hearing aids. We had talked to him and prepared him for this appointment and he did so well. He didn’t like the feeling of the “goo” going in his ears but he was so brave and sat very still. This “goo” is a putty that they squeeze in and it quickly dries to form a mold of his ear. Those molds will be sent to the company that makes the hearing aids. The audiologist let Caleb play with some of the “goo” so he could have fun while the molds were forming in his ears.
Of course the most important part of the appointment was picking his colors. He chose a blue and green color combination (on the bottom of the pic below). So the outside part of the hearing aid will be green and the top will be blue. That blue part is interchangeable so he will be able to change the look slightly. The inside molds will also be a blue/green swirl. I guess you can tell what Caleb’s favorite colors are! ha ha!!
Tuesday we had an appointment for a count check and here are the latest numbers… we are waiting for those platelets to get over 50. That is what is holding us back right now, and of course we need his other numbers to hold steady as well.
So as I mentioned they gave us a break until Friday. Our doctor felt like by then everything should be stable and up above the protocol requirements to start the next cycle. That means we got to stay home today and take a break from appointments. Sometimes this can be very boring, but today it was a welcomed break. Between his inpatient stay for the virus and the daily count checks they required of us when we left, we have been spending a lot of time at St. Jude. I was happy to stay home and just have fun today. Caleb’s energy and stamina is definitely low. We have to do short activities and then take breaks. But I am happy to announce his appetite is way up again and he is eating a lot. It felt like he ate non stop today but I was so happy to see that! He started the morning off with a poptart and cereal, then we had a morning snow cone party, and after that he ate everything from boiled eggs, to sweet potatoes, to cheez-its, to apples. He was all over the place. This has been happening more and more and I think it’s because his taste buds have changed and things don’t always taste good to him. Sometimes he asks for something and then doesn’t want it. Sometimes he loves a food one day and the next day can’t stand it. It’s very strange but I just roll with it and get him anything he will eat. During our last inpatient stay the nutritionist actually congratulated us on this because Caleb has kept his weight up very nicely and avoided a feeding tube! Unfortunately a lot of kids aren’t so lucky because if they won’t eat or can’t keep food down, a feeding tube is something they have to do. But not with Caleb! Every time he drops a little he manages to make up for it and recover and I am so thankful!!
So, tomorrow will be more of the same, just hanging around the apartment letting him rest and get his energy back. I am sure I’ll spend 50% of my day in the kitchen getting him snacks. And then I will report back Friday when we have new numbers and hopefully the oral chemo in hand to kick off Cycle 5!
I learned a lot from this; no experience with any of the hearing deficit new technology. Blue tongues are fun. Had a nice talk with your Mom Tuesday PM. We’re just both in awe of you and James. Home stretch, here we come!
Continued prayers for an easy time of the next cycle.
We appreciate so much you sharing all the updates and photos. We feel like we are able to be a small part of your journey and even though we are here not there… our hearts and prayers are with you daily. We wish so badly we could be there in person. We talk daily about how brave all of you are and we want you to know ..your church family is sending out prayers for all of you on a daily basis. Sending hugs and kisses to all of you. Nancy and Michael