I'm sorry to have kept you waiting.
There is good news and bad news.
The good news:
Hans' bone marrows were negative for Neuroblastoma!
Hans' kidney function is normal!
Hans' CT scan was "unrembarkable" (Yay - no bulky disease!)
Hans has now had three days of radiation and chemotherapy (thank God we are giving this kid some treatment!!)
They are radiating two spots on his head and they are giving him IV Irinotecan and oral Temodor. His Radiation therapy is scheduled for 12 sessions m - f, which he can do on an inpatient or outpatient basis. His Irino/Temodor is on a 21 day cycle, he gets chemo the first 5 days and has 16 days off. At this point we haven't planned any farther out than the first cycle. We will make our additional plans shortly.
The bad news:
THe MIBG looked worse than the one we did in Philly on July 14th.
There are more spots on the head (consistent with MRI and what we anticipated to see).
The spot is still there on the hip - this is the new one that showed up in Philly on July 14th.
There are a couple of question mark spots on the spine.
We will do another MRI to confirm these or rule them out.
In all honesty, with Hans' pain, and with the rapid growth of what we can actually see on the skull, I was bracing for worse news on the MIBG.
Hans is having a rough week! He is just wiiiped out. The pain team actually switched him out to IV Methadone for the pain in his back:( With the combination of all three (methadone, radiation, and chemo) he is just sooo sleepy and has no appetite. He has had nothing to eat since Sunday night. He is being very closely monitored by the endocrine and pain teams. The good news: we are weaning him back to a lower dose of methadone and a lower dose of his super high dose steroid, decadron. We are all hopeful that we will have home/oral dosing in place for a possible weekend discharge.
Our Outlook: We are treating all of the NB with the combination of Radiation and the Chemotherapy.
We are optimistic that Hans will respond. In fact, I am putting all of my eggs in that basket. I don't have another basket.
Emotionally we are pretty fragile. This has all happened so fast and it's terrifying. I am sure I take out my emotions on the staff here. When something goes wrong, and for some crazy reason we have had at least a half dozen communication errors, I freak! I actually sat our attending and fellow down and gave them a little presentation on those errors. Since then, I have been treated like the Duchess of York! Oh, I also fired one resident from coming into contact with Hans. We are sort of fragile, in a war zone. A little PTSD going down. I'm trying to chill out!
But, I have to say that we have found in Dr. Marachelian everything we could need or want from a local oncologist. I am satisfied beyond my wildest expections. We are in communication with Dr. Maris and Mosse, and the two teams continue to communicate about their decisions for Hans.
Thank you for checking up on Hans and thanks for your thoughts and prayers! Please put all your eggs in one basket along with us.
- 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.