Friday, January 17th, 2025
Thoughts from Erica: Patients that stay in the children's hospital for an extended period of time have the option to paint a ceiling tile. The tiles are hung up throughout the hospital and add color and fun to the rooms and the hallways. Levi struggled to figure out how to bring his vision for his tile to life so he recruited the assistance of one of the art therapists here and it turned out great!
Levi loves to write sports stats, sports info, and songs in notebooks so he wanted to make it look like notebook paper on a desk with doodles of his favorite things. He made sure to include his Cyclones 💚🖤, music notes, theater masks, a bible verse, a basketball, a football and the Chiefs logo - all things he loves.
He will start his LAST chemo treatments this afternoon and will finish up Sunday morning. After that we will be waiting for his blood counts to recover and praying that he continues to do well and stays as healthy as possible 🧡.
Tuesday, January 14, 2025
Thoughts from Erica: Levi finished up day 1 and 2 of chemo on Sunday, will have a break for a few days and then will start again this coming Friday afternoon. He spiked a fever again shortly after starting this round, but so far blood cultures have come back negative for infection. Dr. Nelson figured it was the chemo causing the fevers, but started him on antibiotics right away as a precaution. This past weekend was tough for him - he felt very "blah" and was super tired. He even slept through some of the football games! One of the potential side effects of Cytarabine is fevers and about 24 hours after the last dose is when they expected his temperature would go down and that's exactly what happened. Once his fever went down he started to feel a bit better and perk up a bit. He also experienced some facial swelling, puffiness and redness from the chemo this time which has also started to calm down now as well.
We also received the bone marrow biopsy results and things are still on the right track. There is still a super, super small percentage of cancer cells present (.0001%), but Dr. Nelson and her teammates believe that after this final round it will be at or even closer to zero. He will then most likely have another bone marrow biopsy approximately 3 months after he's done with this round to confirm there aren't any cancer cells remaining. It's such a small percentage that some tests don't pick up on them. His MRD (minimal residual disease) is negative which means there are no detectable cancer cells remaining in his body. In the past technology hasn't allowed them to detect cancer cells at the current level so the ones that remain in his body are at such a small amount that previously they would have been undetected. His MRD being negative is a great indicator that he will have zero cancer cells remaining at the end of this round.
After this coming weekend he will then be waiting for his blood counts to recover again and will be trying to stay as healthy and boring as possible. Levi is strong and has been a fighter this whole time and we pray that this last round goes as well as possible for him 🧡.
