So we met with our onc on Wednesday. The mystery symptoms, specifically, those bumps reemerged on Hans' skull, and a vision problem of seeing double or a little bit crossed eye, persisted. The onc took a look at him and ordered a STAT CT of the head. Wednesday evening we were relieved with the news that the head CT was "relatively preliminarily okay". However, yesterday's MRI proved the CT very wrong. The bumps along the top of Hans' head are NB. What they suppose happened is that the skull lesion that has been under control on the Millennium for so long has grown up and out. There doesn't appear to be any brain involvement at all. There are a couple of other little spots indicated on the outside of the head as well. The lesion(s) that are there are outside the skull.
This is a really big, unfortunate deal. We are going to get started on radiating these spots as early as we can, today or Monday.
We are inpatient once again (our fourth inpatient stint in 5 weeks) to expedite some additional tests that need to happen including a neuro opthamology exam, possible biospy, radiation consult, possible lumbar puncture, CT of neck chest and abdomen, and another MIBG scan. We hope that all of these tests will be completed by Wednesday of next week. However, treatment can start as soon as possible since we are not enrolling on a study at this time. We will do radiation in combination with some chemotherapy such as Irinotecan/Temodor, (to which Hans has responded before). We'll find out shortly, but the radiation will likely be on an outpatient basis, approx 20 sessions, or four 5-day weeks here in LA.
This is awful, terrible news in comparison with our hopes to do something low dose and oral and from home for Hans now.
I am just hoping and praying that Hans will continue to be the great RESPONDER to therapy that he has really always been. We can get these lesions under control over the next 4 weeks, and eventually find that great, low dose therapy we can do from home... For now, we are glad to be here at our home hosptial, even if it is a 2 hour drive from home! My mom brought Elle back home early this week. They are here with us now - they are staying at the beautiful nearby Ronald McDonald house and Kevin is able to work and come and see us and be here for important meetings. We have our sweet friend Aimee who has proven to be at our disposal!
Thanks for your thoughts and prayers for our beautiful boy. We could really use them now.
- 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.