Before

I always feel a little strung out Thursday mornings. We never know what the numbers are going to be. I don't look forward to seeing all those other sick children. I do look forward to Riley being in the safety of the hospital for a day. I don't have to worry about what I will do in the event of a bleed, because we are already in good hands.

I still dress up as if I am going to the club for lunch. It makes me feel in control. I make Riley wear something appropriate also. I think of it as a sign of respect, like going to the theater. I also want it to feel like an uplifting event, not something to be dreaded. We will be doing this for a while to come and we might as well make it into something special, since its about the only special thing we do do these days. Riley even likes the change of venue. He also likes the attention when the surgical nurses take the bandages off his picc line and clean and air the skin out. the really nice nurses let the skin sit for a minute exposed before recovering it with new bandages.

This morning I made Riley bath before we go so he would be fresh and clean all over. I trimmed his side burns the other day to make him look less scruffy. His mustache is becoming prominent but we are all afraid to shave it in case he cuts himself. I was going to talk to the doctor about that today. I was thinking they could shave or trim it for us at the hospital. Show Riley how to do it safely. It is not thick just dark and fuzzy and getting longer. His hair on his body is getting longer and darker also. Its one of the side effects of the cyclosporan.

My sister sent a great article on the cases of 67 patients with Aplastic Anemia. It followed their medical history from 1996 to 2008. Whether they relapsed and retreated or did the Bone Marrow or died or are still recovered. We keep going back to the Bone marrow. It is the cure. There is no relapse or re treatment. Tom still thinks we will end up there eventually. Some of these cases took 6 months to a year for recovery and several years later still relapsed. None of the recovered patients were as severe as Riley. We are just leaving the critical acute stage and moving to the severe acute stage.

Once Riley reaches 50% of normal than we will be plain old Acute Aplastic Anemia. I look forward to Mild then Normal. We will see what our numbers are today. Tom made us all guess last night where we thought they would be today. Riley thought they would be lower. Tom bet on the same. I, with my optimism, picked improved numbers across the board. I liked a 5% gain week over week. That should put us in a safe zone by end of May.

Tom is making arrangements with a friend to get Riley up in a biplane. I am to ask the doctor if Riley can handle G forces at all, if they decide to do a loop or trick flying. Memorial weekend is the idea. I have to remember to let the friends know that Aurora Airport is just down the road. Tom says these little planes wont go high enough to effect oxygen levels, but I will ask anyway.


Taxes are due today. I was a little disappointed Tom didn't get them done earlier, but I should have known better. He always waits. It stresses me out and makes me crabby not knowing how much exactly and just getting it over with. But he likes the last minute. It drives me crazy. I pay our bills weeks in advance on autopay so I can be traveling or forget and they just get done. Tom hates that I pay them early, but if I don't then there might be late fees. It feels good to get bills showing we are ahead in payments. Its totally psycological.

The alarm just went off. Time for us to leave for the hospital. The alarm is to remind Riley to take his pills in the morning, but on Thursdays he doesn't take them until after blood draw. So when the alarm goes off on Thursdays its the signal to head out the door.