We do have decision that are going to be made. Even though I personally feel let down by God I am looking to him for strength and wisdom to help make these decisions that NO, I repeat NO parent should ever have to make. Even my worst enemy. Without going into too much detail I will sort of outline the decision we are presented with at this time.
- Full brain and spinal radiation-while this is the only option to help fully irradiate any and all tumor cells floating in the spinal fluid, thus sterilizing it, it will severely effect his IQ and drop it many many points. Is this ethical or moral, I am still trying to figure that out. Do I take a child how is already special needs and compound that by 100x's with full brain and spine radiation to try to save his life? I don't really know, we are at a loss here.
- Another option is Messocentric Chemotherapy. This is a combination of chemo drugs given orally and in the comfort of our own home that work at destroying cancer cells by cutting off the blood supply to these nasty little things. Supposedly side effects are minimal but this by no means is a cure.
- Third option, is 3F8 at Memorial Sloan Kettering Cancer Center in NYC . Dr. Kim Kramer is working with another doctor on this radioimmunotherapy. As quoted from her page:
"In my research, I am investigating novel treatments to eliminate microscopic tumor cells in the central nervous system. These novel treatments include monoclonal antibodies attached to radioactive substances (radioimmunotherapy) that are administered directly into the cerebrospinal fluid. We remain one of the few programs in the world committed to the cure of cancers of the leptomeninges. "
While this sounds risky I am feeling in my heart it is the first and maybe the best way to restart this fight. It will probably take some money but if anyone has any novel ideas for fundraisers I would be down.
I am asking for prayers for guidance and peace for Ry and myself along with our doctors and nurses and we come to decisions that no parent should ever have to make.
Thanks for listening, if you have anything to contribute I ask you to please leave a comment, if you have nothing nice to say though; like momma says don't say anything at all, this is a very trying time for our family and we don't need negative or unproductive words from the peanut gallery.
Thanks so much and with much love!!!!