Well, Day One was a doozy. Poor Hans - he had to get an IV placed and that is something he just doesn't do anymore. He has had his Port au Cath for 4 years now and normally doesn't have to deal with an IV. Hans has excellent coping strategies for all the procedures he does on a regular basis, but he has a lot of anxiety about procedures he isn't used to handling. It didn't help that it took THREE tries to get the IV in:(
The Antibody (Ch 14.18) is incompatible with the morphine, so he needs two separate lines. He actually has an additional device placed, an insuflon. We can inject the GMCSF shots right into the insuflon and save him a poke for each dose he is to get for two our of every 4 weeks. There's a lot going on! Hans is hooked up to a continuous IV morphine drip with self-control button and he is being monitored by pulse ox, HR monitors and BP cuff. He's all weighed down.
100 ml of the CH 14.18 goes in per day for four days. They tweak the rate according to what each kid can tolerate. They start at 5 ml/hr or a 20-hr transfusion, and try to bump it up to 10 ml/hr or a ten hour transfusion. Hans did well with the 5 ml/hr and started to have some trouble when it bumped up to 10ml/hr. All day they were tweaking the antibody rate and the morphine dose. Antibody is painful because it is a foreign substance. I think they got him to a semi-comfortable spot. The afternoon was the worst. I've also heard Day Three is the worst overall. We'll see how it goes. It is nice to have my mom here! Sort of a two-person job the first time around, at least.
Hans' IV is in his right hand. And, he's pretty much knocked out cold since all the meds started! All that adds up to not so much Lego building. That's too bad because we went in on the Death Star with my mom! He'll get to it one day. I think it was honestly a little bit much for Antibody Therapy.
- 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.