Doctor's visit

We arrive at Dornbechers 45 minutes early. Nothing like being prompt and on time. Tom has taken the day off. Uncharacteristically Tom has me drive and sits in the back seat. He has a spiral notebook and is making a list of questions for the doctor. I drive well enough and cautiously that everyone is pleased. I drop Tom and Riley at the front door of the building and go park.



There is a new movie on the screen in the waiting room we have not seen, "The Reef". Riley comments on how its a G movie, which is probably why we haven't watched it before. We get lucky, They call his name soon and we don't have to watch any more of the movie. They have a surgical nurse waiting to clean his Picc. She was up for another case and our nurse grabs her to get Riley done. Blood is drawn and results come back shortly.



The numbers are better or the same as Monday. A marginal improvement, enough to skip Platelets today. We will be back on Monday next week unless we see a big change and think he needs them sooner. This is also after Red cells on Saturday, so holding these levels is a good neutral signal of maybe.



The Doctor comes in. We let Riley listen to the blood work news. Then Tom would prefer to talk to the Doctor with out Riley. I excuse Riley to the playroom. He raises an inquiring brow that we would talk about him without his presence, but he goes. The questions range from what are good expected returns on the numbers. Where will we settle out that are considered acceptable success. How many donors say no. Is the bone marrow success being endangered by the delay. Do the number of transfusions interfere with success of transplant.



Tom wants to make sure that Riley lives a normal life, that he doesn't have to be protected or cossetted. Tom doesn't want Riley living in a bubble or having to be careful the rest of his life.

The doctor responds that this protocol is the standard initial treatment. We have not done anything to jeopardise the bone marrow. This is a lot less invasive and worth a try. He says the numbers considered acceptable are around 100,000 platelets from the 5000 to 20,000 that Riley has been running. That is still low, below the normal range. Some people do get back to normal, about 30% treated. 20% of donors say no, but Riley had a couple good matches so not to be concerned. Tom does not want to have mediocre results. It would make decisions much harder. Good failure or good success numbers are much easier decisions.



Then there are the questions that are causing family issues. How safe and paranoid do we really need to be. The Doctor says we do not have to get rid of plants, but no gardening. If some one is sick have them use a different bathroom from Riley. Riley can go out, but not while its crowded. The Prednizone is what is crushing his immune system right now, so in three weeks he will be slowly weaned off it and will not be so at risk.

Can we fly on a plane come July and go to NY/DC? Yes,by then Riley should be fine to fly and in crowds, if this is successful. We will know in three months. Today we skipped a transfusion. Sounds positive to me. Will it be good enough come May? I hope so.



Meanwhile I will sit down with Riley and pick high school classes with him. I need to find out from his teachers which levels they are recommending for my college bound student. With some success with some modern medicine this boy will be on track again. Maybe no sports for a while, but he had grown out playing much contact sports anyway. I think his father might be sorry about football, but Trevor can still play.

I am off to the pharmacy. They did not have the prescription in stock so I am driving elsewhere. They said they would correct their inventories for the next three months and apologized for the inconvenience. Its irritating because we thought we had this covered a week ago when we discussed it with them. They just didn't pick up on the fact we would be back so often and order enough. They will now.