Hans woke up at about 4:30 am on Wednesday asking for a warm bath. His back pain was peaking at a "ten" on the pain scale. We tried everything, got packed, got Elle all set up for school and headed off towards LA. We were fortunate to get a slot in urgent care. We were also fortunate to be cared for by a kind and knowledgeable nurse, Alice! There are some days when your psyche just needs to be in gentle and competent hands and you are endlessly grateful for wonderful ladies like Alice. They checked Hans out and ordered another x-ray. We were bracing for a compression fracture. I was hearing phrases like "back brace for months", etc etc. I have sort of trained myself not to let that stuff sink in all the way until it is truly, absolutely necessary. Luckily, after hours of waiting for results, they told us they did not see a fracture. Hans got a couple of doses of IV morphine and we devised an around-the-clock oral home pain management plan. I voted to come home to get back to Elle with her sore mouth, and to let Kevin hit the road. The radiologist suggested an MRI to further explore what is going on with Hans' back. Since we've been home, taking a smallish dose of Oxycodone every 6 hours or so, his pain has remained at a "4" on a ten scale. Elle's mouth pain has also turned around! It is much better here on day 4, but she is still learning how to chew and I'm the queen of soft foods. We were fortunate that our neighbor took care of everything from a soft foods dinner menu for Elle Wednesday night, to a mocha delivery for me this morning. So sweet!
We are now playing the waiting game. I am sure our team is trying to hash everything out, and I also fear that this new pain has put a question mark over what is best next. We are waiting to hear if and when we can start Antibodies, waiting for an MRI, and waiting to see if we need another Bone marrow aspiration before antibodies or the next therapy, and waiting to get this wart taken care of next week. The waiting game is one thing, but then you don't want your head to mentally "go there" thinking that the Neuroblastoma isn't particularly adept at playing that game.
- 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.