The visit with the Doctor

It has been a year now, since we started this path. Riley's numbers were about the same as in November, three months ago. The Doctor agreed to start weening him off the cyclosporine. Riley will go from 400 milligrams a day in two doses of 200 morning and night, to 350 with the evening dose being the one with only 150 milligrams and two hundred in the morning still. We start tonight. Riley will have his blood checked each month, next time is March 10. The doctor will give us the results by phone. We wont be meeting with him. If Riley's numbers hold, we will take away another 50 milligrams or 1 pill a day on the morning dose. Check in another month and see. It will take until June before he is completely off. The tests will be at Dornbechers. The doctor wants to keep consistant with the use of the same lab each time.

We re- assess with the doctor in June. If Platelets are at 60,000 we discuss options, upping the cyclosporine, retreating with ATG, which we don't want to do, or BMT. If the platelets have fallen below to thresholds of 20,000 to 30,000, we activate donors and see who is available. It is good to have spare donors, when the doctor started ticking off the reasons why someone might be disqualified when they were an option before, we realized how good it is to have spare choices. Like if a donor has grown old or had heart surgery or had children or come down with some disease or STD that disqualifies them. They may have severe allergies that are not known until a full medical screen occurs when they are activated. Or they just can't be located anymore.

I asked, if after BMT, Riley would still have to take meds. For the first few months only. BMT is the only transplant that doesn't need immune suppressants for life since you get a whole new immune system. "Whoa" said Riley. He picked right up on the fact that he would have to get re immunized with shots for everything, all over again. Even the whooping cough. The doctor also said that if the donor has any allergies Riley would have those allergies also. Stem cells that are transferred are so young they don't hold the immunities of the donor but they will have the allergies. Pretty cool.

The doctor also said that it is only a 5 to 10% chance that Riley would need to go to BMT. He said a few even start getting better once off the drugs, 1 in 5. Most just hang in mediocrity with their numbers around where Riley is now. 1 in 5 get worse.

So again it is a waiting game. Riley will slowly, and the doctor emphasized slowly, ween off the cyclosporine. 10% at a time, with at least a month between dosage changes. Nothing to trigger the body.

He did tell Riley to drink more fluids and keep the magnesium dose the same. It was a good conversation.

We also asked if our new favorite hospital show, Gray's Anatomy, was anything like the hospital. That got a good chuckle. He watches it at home occasionally with his family. He said what he found funny was that in the show there is only one attending per specialty. In a real hospital you call for a cardiac surgeon and 50 surgeons might show up. Its not even a skeleton crew on the show. He also said dating a subordinate would get you fired faster than blinking. No compromises. We all got a good laugh out of the conversation.

The doctor asked how Riley is doing in school. Riley told him about his classes. We described the trimester system with 5 classes a trimester, only 2 trimesters needed for a year's credit, the rest can be electives. He pointed out that students could graduate in two and a half years. That is correct, with the right schedule. Senior year can be all college classes. That can be very helpful to offset college expenses. Since Riley isn't an athlete, he can really take advantage of this kind of accelerated program. If he stays with core classes and few electives.

Riley asked if he could do loops in an airplane at these levels. The doctor said if the plane crashed, even 300,000 platelets wouldn't help, so to go ahead and fly. Bleeding gums shouldn't be a problem either so I can start nagging the boy to floss again. Without the CBC panels each month I doubt we will be able to tell if there are changes. I think Tom and I are going to be quite happy being able to get our numbers again every month.

Trevor was in a foul mood though when we got home. He had to walk home from school after homework club. A friend had come with him, but their play time was cut short when the boy's mom came early to pick him up. I even brought home KFC but it wasn't enough. Trevor is all boy, and being female, I am around just to harass him in his mind. I did try to give him space but the good computer is in my office off my bed room, so I couldn't even hide out from his bad mood as he invaded the office to use the good computer, while I was on it. I am trying to be patient and give him space. I think the PB and J's are beginning to wear thin. But my wallet is shut, until I see some grade improvement. And I am not going to fight about it.