Why wheen

This is something of a refresher among us, but some one asked why take Riley off the drugs? The drug, cyclosporan is an immune suppressant. He takes high doses of Magnesium because the cyclosporan eats up all the magnesium in his body. If Riley doesn't stay constantly hydrated the cyclosporan ends up stressing his kidney's and liver to dangerous levels. On days Riley doesn't drink enough water or fluids, his pee looks like dark earl grey tea.Too often for my comfort, do I see that color in his bathroom toilet. The child doesn't know how to flush, but that has turned out to be a great way for me to check on him without being obvious. To give him credit, often his pee is a normal light color, or only slightly tea stained.

Long term stress to kidneys and liver leads to organ failure. The Doctor says he has patients on this drug for 10 years. That is just about the length of time they have been using this drug. It was discovered 10 years ago for this treatment. So there are no longer length statistics.

The people who take this drug long term are those that don't have the option of Bone Marrow. They probably don't have a good match. Riley has a huge advantage with at least 6 exceptional matches, almost as good as sibling. I can only guess at the number of good match is because Tom's and my ancestry are so similar, White European, mostly Great Britain.


That in itself is a story. I tried to give blood recently. The nurse wanted the dates I was in England in 1987. One of the questions on the exclusion is if you were over 3 months in Great Britain between 1981 and 1992, when mad cow decease was an issue. Mad cow comes from eating red meat and there is no check for it.

I went over to London around January 20Th to study, in 1987. I was in school and traveling Great Britain until school let out in May, closer to four months. I am now, 24 years later, still considered a risk. The true screen time is 14 years, but it hasn't been adjusted in the Red Cross computers. Arbitrarily, I can no longer give blood because I was in England two weeks too long. I even stayed with a vegetarian woman and her son. But I did have roast beef sandwiches at the deli for lunches. I have yet to see any manifestations of mad cow.

Statistics for Riley show that the most successful Bone Marrow transplants, with the least complications, occur within a year of diagnosis. We are now a year. Once we started the horse serum treatment initially, with the cyclosporan, it committed us to giving the treatment a year to see how Riley responded. We didn't know at the time we had matches on the donor list. They came up three days after treatment had begun. We were committed to the treatment. Riley's numbers were so bad we didn't have the luxury of waiting. Riley responded well to the treatment. It was much less invasive and painful than Bone marrow transplant will be. No full body radiation or chemotherapy to kill all what was left of his natural marrow needed.

Over the year his blood number have been increasing . His numbers are good, not normal, with platelet levels last time they were measured at 130,000, that allows him to do ordinary things that may cause bumps or bruises and survive. He has even recover from two colds this year without interference other than regular over the counter medications for the common cold. Yes, we did get him x-rayed and checked out when he was sick, because of the immune suppressant drug, cyclosporan, but when no complications such as pneumonia, we let the colds run their course.

Luckily Riley gets good grades and High School teachers accommodate for missing assignments. He has been proactive, and getting the make up work in. I told Riley $50 for Burgerville if he gets straight A's at mid term report card. He is in advanced classes and doing well.

The longer he stays on the drug, the harder it is for his body. There is even something called chemo brain, where there is memory loss. So far he hasn't shown symptoms. That may be after more intensive therapy.

There is a small percentage, maybe 10% that hold their numbers after being removed from the drugs. That is our hope and dream. We would watch Riley like a cancer survivor. For the next 3 to 5 years he would be regularly tested. CBC would be drawn to check his numbers. After 5 years he would would be considered cured, but relapse is not unknown. This time he would know what symptoms to look for early.

If his numbers do not hold then we do bone marrow. It will be awful, but the advantage is it is a cure, not a therapeutic treatment like he is taking now. He survives, and he is a rebooted computer, all fixed and ready to go. His age is to his advantage. His organs have not been over stressed yet by years of medicine abuse. We wait and he loses those advantages.

So here we are. Thursday, February 10, we go to the doctor and tell him it has been a year. We have given the therapeutic treatment its fair chance. Lets see if it worked. Then we wait, again. We wait to see what happens. We wait for signs of bone marrow failure, which I think are so subtle that we missed them completely for months the first time. The real good signs only show up in the end stages; peticcia on the skin, bruises when there shouldn't be, and excessive tiredness.

Now Riley is so hairy, one of the side effects of the cyclosporan, that I don't know if I can spot the peticcia on his legs if it did make a reappearance. A little humor. This time I will have to be careful not to hover. Knowing what may be coming, it will be hard not to want to check him constantly for signs.

When we walked into that hospital and found out he had only 9000 platelets that first day, when there should have been 400,000, I still choke up and sob. He is doing so well now. He is going to school. He is on track with his grades and making friends. So far this is only a blip in his very long life.

So we will wait, again. Will it be a short wait? Once off the drugs will his number hold? At this point I don't mind the waiting. I am not looking forward to BMT. Right now Riley is loving his classes at High School. He loves the learning and the fun teachers. He is happy and alive. But we can't lose the advantage of age and matches.