Asha has been blessed with the ability to thrive despite this disease, taking trips, hanging out with friends and simply being a teenager. 

On May 23rd she celebrated her Sweet Sixteen with her close friends and had a blast!  She's been enjoying riding her three wheeled electric bike and taking care of her pets Tizzy, Bowie, Marshall and TWO guinea pigs, Kiki & Koko. 

Asha is continuing to take the trial drug ONC-201 which seemed to have been controlling any tumor growth up until most recently. Unfortunately, the most recent MRI revealed that the tumor has begun growing again. This is beginning to present in further motor deterioration on her right side. This is, of course, devastating news. 

Asha's amazing care team run by Dr. Korones and Dr.Constine have conferred with colleagues on the tumor board at Golisano Children's/ Wilmot Cancer as well as a national network of physicians and specialists. The consensus is that time is of the essence with this kind of aggressive tumor, and a second shorter round of radiation should begin immediately.  This will mean daily appointments Monday-Friday for a two week period beginning July 7. 

Dr. Korones has been exploring options for CAR-T Immunotherapy trial treatment all around the country and we are hoping for a spot in one of these in-demand trials. The treatment process would start around late summer/early fall. There are possibilities in Texas, Seattle and possibly Memphis.

We ask for your prayers that the 2nd round of radiation in combination with the ONC-201 will stop the growth of the tumor, this being the least invasive treatment. We ask for your continued prayers as we navigate the impossible selection of the next right treatment for such a hard to treat cancer. We ask for your prayers and loving energies to support Asha and her immediate family. 

If you are able to contribute financially, we are in need of support so that Amy can take leave from work during this critical time- so she can spend as much time as possible with Asha.