Numbers September 2nd

Numbers



Platelets 95,000

red 11.2

white 2.6

reticulcites 27

creatinen up







Its Thursday. We saw the Doctor today. Lots of questions and lots of discussion. Its six months. This is when we discuss options and next game plan. Riley is considered mediocre success. The goal at 6 months was to have 100,000 platelets at a minimum, red is in the minimum zone, white cells are also close to the low goal. As Tom put it the results were "acceptable for government work".



Tom and I had gone in with a plan to ask the doctor to start weening Riley off the cyclosporine to force his hand on the bone marrow. Turns out the doctor has a similar game plan. He told us that best results are to keep this dose for another 3 months. Statistics show that weening off before nine months can cause the numbers to fall 25%. He also said that at a year if the numbers are not satisfactory, or sub normal still, because we have such a great bone marrow match he would recommend doing the BMT at that time. He said in our circumstances with Riley's age to consider he would not recommend another course of AGT, which is the alternative treatment. He would do the AGT for a 35 year old person with a poor match. But we are lucky with our options. We have a near sibling match. Not a sibling exactly, but so close as to be negligible.



Last month while I was at the funeral in Tucson, the pharmacy messed up on the prescription again. They go for the least expensive manufacturer and they don't keep it in stock. Riley was out so he had to take what they had available. They gave him modified cyclosporine rather than the unmodified he had been taking. The size of the pills were 25 ml instead of 50 ml. It was a $15 copay so I figured we would use it up and get the right stuff next time. Had I been home I probable would have driven down to the pharmacy in Woodburn to my girlfriend.



The Safeway there keeps it in stock as they have other clients that sadly take it also. If that pharmacy was closer I would have her do our meds. She was the one that alerted us to the difference initially. She warned us about needing a few days to fill a new prescription that was not normally stocked. I just hadn't realized it would be such a big deal. On the other hand if that mistake in the modified pills is what caused the leap in platelets, I look at the bright side of the mistake.



Riley asked the doctor about the difference. the doctor was not happy to hear Riley had been on the modified. It is more potent and effects people differently. Riley's creatinen levels were up which showed his kidneys were working harder, not dangerous levels, but showing that Riley was not drinking enough fluids to keep the stress on his organs down. But it now could also be related to the modified pills. It makes the number results fuzzy.



As a result, we will be doing another blood draw next week to check his cyclosporine levels before we need to reorder his pills. The doctor didn't want Riley bouncing back and forth on the meds from modified to unmodified. The platelets were up substantially, now we have to see if it was from the change from unmodified to modified and see if his body responds better to the modified. There are some serious side effects like solid tumors associated with the modified. But if it gets his platelets up more effectively, then maybe the benefits out way the risks. Especially for only a year or less. It will be a telephone conference with the results next week. I still have to go up to Dornbechers as they are the ones that test the cyclosporine levels. Every lab being slightly different, for consistency and it might be timing, as we are testing absorption levels, the doctor wants the levels tested at his lab.



Riley will hold off taking his morning pills until after the blood draw. They are looking at the lowest level. I want to call and find out how early the lab opens so we can try and avoid missing too much school. We will get stuck in rush hour either way.



tom and I tested the routes this morning during rush hour. I took the free way and he went across town on the streets. We arrived pretty much the same time. He had stopped for a coffee and I had gotten stuck at a construction sight leaving town. Though the traffic on the freeway slowed occasionally, it was steady forward progression. As I tell the boys, if we are going over 13 miles an hour we are traveling faster than the pioneers did in a day.



At nine months we, Tom and ,I want to reassess the dose. There could be room for adjustment. The doctor said that this dose is known to work. But with the createnin levels I would love to see Riley on a minimum dose or weened completely off eventually, sooner if possible. The doctor anticipated Riley being on the cyclosporine for a year. So February/March is our next really big visit. If Riley is not well by February then we do BMT. The doctor is in agreement.



School starts next week. I want to make sure Riley gets his fluids. My fear is he wont. It is crucial that he not have long term damage to his liver and kidneys. Often it is not the BMT that fails, but the stressed out organs from long term drug use.



We asked about the worry of fever and colds now that he is going back to school. Without the picc line that worry is decreased enormously. Treat the cold and fever as you normally would. Be careful and stay away from sick people. Wash hands regularly and be cautious but not paranoid. Call with really high fevers or questions, but don't freak out.



So here we are six months out, improved but not completely well. At nine months we meet with the doctor again, early December. Then March we see again where we are. I was hoping it wouldn't drag out, but that is the beast. It will be a year in February. Tom asked me to find out how much to set aside for flexible spending, if the doctor had any idea. It is so irritating that we know the illness, but not how much extra we may need to cover. I am guessing $3000. I will go ask the pharmacy the amounts on this years prescriptions copay. That will at least provide a minimum amount needed.



Today was what it was, good news mixed with the gray unknown. Another 6 months to go, minimum. Maybe BMT maybe not, have to wait another six months to find out. Problem is neither Tom nor I are patient people. We like our gratification and answers now. Tom looks like he has done a term as president of the united states. He has noticeably aged. Good thing men age gracefully and look more sexy with grey hair. Or maybe its just my failing eye sight. My doctor implied , no there was no implication it was straight up blunt, I was just around the corner from a stroke or heart attack. I have been dieing my gray hair for several years now. So neither one of us is escaping the stress unscathed.