About time for an update

So…, I guess we should provide some update.  All of you who come to visit this site, thank you.   Things have been hectic in many ways.  I guess, we’ve been busy with “simple life”.  Maya had her graduation from Sr. Kindergarten and also participated in a ballet recital.  It was nice to see Maya enjoying herself, all in large part due to Indira’s tireless involvement in Maya’s activities and her schooling.

We’ll post some video’s and pictures soon.

On the other hand, there has been some events relating to Maya’s therapy.  It’s… complicated.  (Big surprise!)  And subsequently, we have decided not to pursue Immunotherapy.  My last post details some of the riggors of immunotherapy.  The entrance criteria involves getting a neuroblastoma sample.  Since there were some doubts as to where the disease was active, PET scan was performed.  “PET scan results in intense radiolabeling of tissues with high glucose uptake, such as the brain, the liver, and most cancer”.

The good news is that PET scan presented only two areas where there were significant activity; One of her lower vertebrae and Maya’s right upper femur.  No remarkable soft tissue activity was noted. This result seems to contradict(?) MIBG scans that Maya had previously.  MIBG lights up where the I-123 is found.  If the neuroblastoma cells have matured, it will still light up.    Is that the case?  Don’t know.

The only way to find out is to go and get a fresh sample.  Now, going after the back bone is out of the question.  There is signficant risk that her spine may be damaged.  Then, the only potential source of fresh neuroblastoma sample would be her femur.  Getting the sample from the femur may cause a fracture and Maya would need to be in a cast for some period of time.  Furthermore, there is no guarentee that good sample would be obtained, in which case, we may have caused significant suffering for no net gain. The summer will have been wasted and both Indira and I felt that it was not worth the risk.

Then, what to do?  We turned to Dr. Sholler again.  Dr. Sholler is a lead researcher for a drug called DFMO. While not considered to be curative, in many cases, it does seem to stop the progression of disease.  And since it seems to have very low side effect with some children being on it for many years, we thought that DFMO would provide us with some “coverage” while we continue to look for some other solution.

We are still planning a North American tour.  But firstly, we are planning to visit Dr. Sholler in a couple of weeks or so for a checkup and have Maya start on the DFMO trial. What’s also nice is that DFMO is a oral medicine and we will not be bound in a hospital setting for the duration of the therapy.  More to come…