The Plan

So, we had the meeting with Dr. Pene today.  It went better than I had expected in my head, so that was good.  Basically he told us that they are not going to do surgery at this point.  The surgeons and Dr. Pene talked and the surgeons basically said that they could do surgery, but if there is any other options they would prefer to go with those first.  Where the tumor is located is in his pelvic area is where they had done the surgery before and Dr. Christman said he was pretty much up to bone on the one side, and at his rectum/muscles in that area on the other.  He feels that if they go in to do surgery, they will for sure damage that and he will be on a colostomy bag for the rest of his life.  There is also a high risk that they could damage his urethra, and other muscles/things in that area.

The next option, and the one that he would recommend as the next step, is the high dose chemo with stem cell transplant.  This is where they first go in and harvest his stem cells, and then do the high dose chemo which pretty much obliterates his blood/immune system.  They then transplant his own cells back into his body to help him recover more quickly.  They usually do 2 rounds of this with his type of cancer.  The biggest problem with this is that the Naval hospital isn't equipped to do this procedure, so we will have to go to a different hospital that is able to do it.  Right now we are hoping that Rady's, the children's hospital in San Diego, will accept him and we can do it there.

So the plan of action is for Dr. Pene to do a referral for us to speak to the doctor we would be working with at Rady's, this is where we will receive all the specific information about the procedure and be able to ask our questions of someone who has done this type of thing before.  If that doctor agrees to do the procedure and accept Shad as a patient, then he will put the request into Tricare to be approved.  At the point Tricare will approve or deny the procedure, and we will begin the process of transferring Shad to that doctor's care for the procedure.  It looks like it could be a long process having to work through the insurance, and the other hospital, but we are pretty hopeful that every thing will work out and we will be able to give Shad this chance at being cancer free.

The high dose chemo is pretty much our last option from a chemo standpoint.  Once he has that if the cancer doesn't go away, or if it were to come back, they wouldn't be able to give him any more chemo.  They could do surgery at that point if there was something that could be surgically removed.  The last option would be radiation, but if the cancer is in the same area it is now that would be a huge deal.  The type of cancer Shad has only responds to high dose radiation, and so it would be pretty intense.  Although it could kill the cancer, it would also damage anything around it.  Since Shad's cancer is right up against his pelvic bone it would damage that.  As he grows, the area of his pelvis that was exposed to the radiation would not grow.  This would obviously cause a lot of problems, especially as he gets into his teenage years where he is doing a lot of major growing.

Dr. Pene ended the conversation with a simple I know this isn't what any of us wanted, but there are still promising options we can pursue.  I like that he is still optimistic, it is reassuring, but he is also realistic.  He doesn't tell us, oh this is going to be easy and wonderful, he is definitely straight forward and to the point, but he still offers hope where there is some to be found, if that makes sense.