So - sorry, I haven't posted much. We've mostly had a mellow week! My mom went back to SEA, Elle is off camping at Morrow Bay with our neighbors. (Thanks, Mars!) Holly and Kathy are on their way to come see us:) Kevin is busy working away. Hans is getting blood right here in Bakersfield. It's nice to be able to take a 15 min drive for a change.
Hans has been a little mellow low energy. He has had no counts. Last week he was: Plts 33 (after transfusion), ANC 0.00 and HGB 8.5. On Monday we had good and bad news. The ANC made an appearance of 500 (thank you stem cells!), but the platelets dropped back down to 3, and the HGB is down to 8.1 The platelets and red blood cells take longer to engraft than the white blood cells. Our concern right now is the lymph node in the neck:( They didn't radiate that spot and it seems to be growing a little bit and bothering Hans some all of a sudden:( We have to wait til platelets come up before he is eligible for more treatment. That's what the stem cells were for last week. This is a slightly scary situation. We must wait for counts to come up, while at the same time, hope the NB behaves itself. My prayer is that the good blood cells will flourish, the bad NB cells will halt, and that the very best treatment for Hans will reveal itself. We are looking at a couple lower dose from-home options such as Fenretinide, Vorinostat, or DFMO. Scans are scheduled for next week, but they may actually get pushed back if counts dont' come up some. Since you can't treat until you have some counts, you don't want to do scans too early... It's tricky.
In the meantime, Hans is ready to celebrate his birthday on Sunday! He'll be nine. He has some funny little rules for us once he turns nine. No more calling him "sweetheart" and "Baby Bear"! We'll try;)...
- 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.