We are looking forward to tomorrow because Hans will finally start on a therapy to treat this new NB! Tomorrow Hans will have a simulation for XRT (radiation), and he will begin both Radiation Therapy and Irinotecan/Temozolomide (chemotherapies). They are scheduled together because Irino/Temodor is a radiosensitizer and they work better in conjunction with radiation. It seems like so very many days have somehow passed us by since we first got news of progression back on July 14th. We can only charge full speed ahead and move forward from tomorrow.
What has been happening? Hans had an opthamology exam on Friday. They believe that the pressure from the mass on the skull is causing the double vision. They also believe that as soon as the mass is treated the pressure will be relieved and the symptoms should go away with no long term effects! We also had a consult with radiaiton. The Radiation Oncologist believes the mass should respond well to this therapy as "neurobalstoma usually does" to radiation.
Our oncologist consulted with Neurology and Neuro-opthamology and determined a lumbar puncture shouldn't be necessary at this time. A lumbar puncture would detect NB in the Cerebral Spinal Fluid (if I understand this correctly). At this point, that is not indicated, this does not appear to be a CNS (central Nervous System) replase. If it did, our path would likely take us to a well known treatment in NYC, but at this time we do not have to go down that road. Our oncologist also ultimately decided against an biopsy of the skull lesion. She felt that it is pretty clear that this is NB, and that he could face the risk of infection or complications as he is about to go into radiation of this area.
Yesterday he had a CT of the neck chest abdomen and pelvis. We do not yet have those results back. They are doing a full work up of Hans this week. Today he is doing a urine study to test his kidney function. Tomorrow he will do another Bone Marrow Biopsy and Aspiration. Tuesday/Wednedsay he will do another MIBG. We will be inpatient until at least Friday so that Hans can be monitored for his first five days of Radiation and Irinotecan/Temodor. I am not sure how many days total we will be here for radiaiton, but it could be anywhere for 10, to 12, to 20 on an out-patient basis after the first five days.
Hans has been having some back pain in the last 36 hours:( He is getting IV morphine to control this pain. There is a bump on his neck that is bothering him. We are hopeful that the CT, bone marrows, and MIBG won't bring us more bad news.
Hoping and praying for a complete response to these therapies for our beautiful boy!
- 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.