Wow, for the first time that I can remember (excluding the time we had a high liver panel when we were trying to start ABT751) Hans didn't make counts. This means that Hans' counts haven't recovered enough from the last round of Millennium to start the next round, which should begin on Thursday. There are parameters that are very specifically outlined for kids on a clinical trial, if those numbers aren't met or exceeded, the meds aren't distributed. (On this trial, we get the med directly from CHOP.) But, anyway - Hans' HGB was fine at 10.4, his platelets were 97, just 3 points lower than the 100 lower limit, and his ANC took a major nosedive to 200, down from 1000 on Friday. It has to be 1000 to start the med. Ouch. Yikes. It's weird and confusing, but I'm really not too freaked out about it. Dr. Russell suggested that he's probably fighting off a little virus. I have heard of many many kiddos who repeatedly didn't make counts and they are enjoying long healthy remissions. So, I'm not too freaked out about delayed chemo. I guess the best and only truly 'acceptable' reason for his chemo to be delayed is if his little body isn't ready to handle it. The hope is that it will come up and we can start soon. We have counts re-checks scheduled for Friday and Monday.
The good news is that he is doing just fine. We have to limit his germ exposure right now, but other than that he is doing great. Good appetite, lots of spunk! He was a solid 16.0 kilos today - that's about the highest I've ever seen his weight. He is looking just a touch chubby for Hans, ha!
In sad news, little Layla Grace lost her fight today. Sweet baby girl. www.laylagrace.org
My heart goes out to their family, and the whole staff as well. You know these kids work their way into so many hearts. I wonder how they sustain themselves through such loss.
- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.