Day 64 – May 21, 2022

11:00 pm: Harvey was up early today (4:30 am) and was active up until his 3-hour nap from 2 to 5 pm. His ANC level is thankfully starting to trend upward. It’s now .182, up from .120 yesterday. We will remain in the hospital until his immune system recovers a bit more. He’s feeling well, eating decent portions, and actively playing with toys and riding his favorite trike all around the hospital floor. This evening, I did notice a few areas of rash showing up on his back and chest. We’re not sure of the cause and will keep an eye on it tonight. We’re grateful he tested negative for COVID yesterday. His blood cultures also came back negative (no bacterial growth from his blood sample). He will continue receiving an antibiotic (cefepime) to lessen the risk of infection while he remains very immunocompromised. For now, all is quiet here at the hospital as we await higher ANC levels in the coming days.

1:30 am: Harvey remains hospitalized, but is doing well. He’ll remain in the hospital until his ANC begins trending upward to rise above .200. It fell to .120 Friday morning, down from .140 on Thursday. This is to say he has no immune system right now. He is scheduled to begin the next round of consolidation chemotherapy on Tuesday, May 24. However, his ANC will need to rise to .750 before then and, therefore, it’s unlikely he will begin on schedule. This tends to be fairly typical during the consolidation phase of treatment. Speaking of typical, I’ve read blog after blog of other kids Harvey’s age that have become gravely ill during this phase. A simple cold, normal body bacteria, and practically just about anything can cause major complications at this point. We remain cautiously optimistic, yet undeniably aware of reality as we continue moving forward through this consolidation phase. I’m happy to report he hasn’t had a fever since being admitted to the hospital Wednesday evening.

After receiving a blood transfusion on Thursday due to low hemoglobin, Harvey’s energy and color have returned. He’s cashed in that energy to play with trains, ride his favorite trike through the hospital halls, color, perform physical therapy exercises, create arts & crafts, and play live, call-in bingo (to name only a few things). The audio/video production for bingo on the in-house hospital channel, “Star Studio“, is top-notch. What a wonderful source of entertainment for kids during some of their toughest days. They even record their live shows so I can share with you both Harvey’s (not dad’s) joke and bingo!

Back at home, signs of difficult times continue to appear. Our non-verbal autistic son, Henry, has started to become aggressive and destructive, scratching his sister, Hattie, and smashing the screen of his iPad. He’s no doubt feeling the effect of the life-changing events ongoing, but he’s unable to tell us. There are some very challenging days with both Lindsey and I at home together, and it becomes only more difficult with only one of us at home. I truly want to emphasize how difficult a cancer diagnosis is on all the other siblings in a family who don’t have cancer. It’s something I was unknowingly ignorant to just months ago. This continues to be incredibly difficult even on the best of days. We struggle. We take it one day at a time. We are so grateful for all the good we’re able to share, much of it right here in our updates. But the reality remains: We have a lot of challenges we’re going to need to learn how to address and overcome.

Thank you all so much for checking in on us. Realize that we are not heavy social media people. Honestly, I despise it. But I also realize that it’s one of the most utilized tools for sharing and communicating information. In an effort to make it easier to find, get notifications about, and share our updates, we’ve created a facebook page for Harvey’s journey (https://www.facebook.com/groups/harveysjourney). Please don’t hesitate to share with anyone who might like to know about it. We don’t want to exclude any of our friends or family that exclusively use social media.