From Ray Gould, Daniel’s father:
Every day for a week, I intended to sit down and post an update. One thing after another prevented that from happening. Sorry for the delay!
Wow. It has been an incredible journey since my last update on day +9. On day +10, they did the first blood test to check Daniel’s ANC (absolute neutrophil count). These are the WBCs (white blood cells) that protect our body from disease and infection, essentially the immune system. The normal range for ANC is between 4,000-8,000. Daniel hasn’t been over 400 since we were diagnosed in May. Due to the chemo and radiation, all of his WBCs/ANC were wiped out completely, down to zero. The test on day +10 and every day since is to track the growth of WBCs/ANC. Essentially, it checks if the bone marrow is producing cells. Day +10: 80, Day +11: 200, Day +12: 1,200, Day +13: 2,500, and today, he is over 5,000! (Numbers are expected to fluctuate daily now that he is off medication that was stimulating his bone marrow.)
Daniel’s symptoms from the treatment continue to be well tolerated and controlled with additional medication. We are so thankful that he did not develop some of the more significant side effects that are prevalent in over 95% of patients, such as bleeding mouth sores. A parent’s prayer for mercy answered. As of a week ago, he started losing his hair. We offered to shave it, but he wasn’t interested. He has just dealt with the itchy hair falling out. Of all the things he has had to endure, this one hurts his feelings the most.
Tomorrow, he will finish his second marathon around the transplant ward hallways since admission. That’s 52.4 miles (or 1,258 laps). Our home is 51 miles from Cook’s. He was happy to know that he could have walked home from the hospital. I think it’s safe to say he is the new record holder. The nurses are in disbelief and seldom remember many kids achieving one marathon, let alone two.
Our two primary physicians have told us that he is doing remarkably well. He went into the hospital strong and has remained strong despite being knocked down by the chemo and radiation.
On Friday, we were surprisingly hit with the news of the possibility of being discharged on Wednesday, 09-18. As of now, we are set to be discharged tomorrow. They call it the “breaking out” day for the kids. He will ring the bell loudly to his favorite song while being cheered on by family, friends, and staff.
From here, we will be in a room at the Ronald McDonald House for the foreseeable future (hopefully not too long). Since we live further than 30 minutes away, this will continue to be our second home until we can widen the radius. Daniel will have multiple clinic appointments per week to closely monitor him. On day +28, they will do full engraftment labs to see if the bone marrow transplant was successful. That’s the next 50-meter target.
A huge thanks for your continued support, prayers, and love. This journey would have been much harder without the support we have and continue to receive.
