My 2 year old daughter has stage 3 high risk Neuroblastoma and is currently being treated using the COG protocol. She’s been through 5 rounds of chemo, surgery, and has just started her final round of chemo before we are on to the stem cell transplant.
My first question is whether or not we go through with the transplant. We know MSKCC’s protocol doesn’t do the transplant and instead offers 3F8. What is everyone’s opinions on the advantages or disadvantages of this? My daughter’s tumor has responded well to chemotherapy so far. The surgeon was able to remove the entire tumor which had shrunk considerably from the chemo and all of the tumor that was removed was dead cancer cells. I wonder whether we are on the correct protocol with COG or if we should be going to MSK to follow their protocol for our daughter.
Another complication our little one has is her tumor had wrapped around and compressed her spine, paralyzing her from the chest down. Where we are currently being treated there is neurosurgery - they performed her laminectomy to decompress her spine, but there is no spinal surgeons, PMNR, or inpatient rehab for spinal injuries. So right now we are treating her cancer and her spinal injury/rehab is being pushed back. I don’t believe Memorial Sloan could manage her spinal injury either so I am curious if anyone has any experience with a Neuroblastoma treatment center that can also manage a spinal injury.
If you can’t shed some light on the above, please share your experience with where your child was or is being treated. Your insight is greatly appreciated to help make sure our daughter is getting the best treatment we are aware of for condition she is in - thank you!