I feel like we could get whiplash with the news we get some days. We went in for a post-therapy check up on Monday. We got good news and potentially bad news. AMAZINGLY, Hans' pain is still GONE. Amazingly, Hans' bone marrow biopsies all came back NEGATIVE for disease! They were triple stained for NB by the one and only Dr. Shimada. Earlier, we had learned that the aspirate was slightly positive. I feel I should give you a little more detail. When they draw Hans' bone marrows they draw on the right and left sides of either the front or the back of the hip. They get two samples with each draw. The aspirate is the gushy/fluffy stuff that comes out. The biopsy is the hard bony stuff. The good news is that Hans' marrow is clearly in good shape. I was concerned for these results with all the pain he was having. But, who knows. That pain is gone now. It's just one more mystery of Hans.
The bad news is we are now on a lymph node watch. Hans has some swelling at the lymph nodes in the right neck. It feels like two hard peas. Dr. Araz says they are suspicious for NB! :( :( :( I think they popped up in the middle of our ch14.18 week. The bummer is that Hans may have to change up therapies if they grow. We will go back in next Wednesday for another exam. Dr. Araz says that if it is NB that is not controlled by this therapy, it will reveal itself. Now we now what we need the 18th miracle of Hans to look like. Oh I hate that we have to be so greedy for miracles!
Hans was cleared to start Accutane! We started Monday night. Boy - we are a little nervous about this. Hans was on Accutane alone back in the 2007. It caused him problems of insane headaches that landed us in the ER for a CT of the brain - looking for tumor or pseudotumor! We just remind ourselves that Hans is a bigger boy now. Hans will be on the Accutane for 14 days between each inpatient cycle. While on Accutane you have to watch your sun exposure... good thing our pool is pretty well shaded by palms.
Nutrition is our other problem right now. Usually Hans' taste buds evolve slightly with each therapy he starts. Right now he is weighing in at his teensiest, a mere 16.2 kgs. He seems to be trying, but not devouring his old standby's... We'll have to stumble on some new delicious discoveries for him.
- 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.