Nuts and Bolts of the Past Week

I can't believe it has been almost a week since I have updated my blog! I need to be more diligent!



On Thursday, Simon had a routine appointment that was nothing but routine. His counts were all about the same. His granulcytes were high enough that he didn't need any neupegen, and his hemoglobin was still stable, so no transfusion.



I had a couple of opportunities to work last week, filling in for the office manager at the school. I had a great time and enjoyed feeling productive for a while.

After the doctor spoke to the transplant team, we were discouraged to learn that they do not even want to meet with us until we are 90 days out, or unless things take a turn for the worse. If we reach 90 days and there are no signs of improvement, we will meet with the transplant team in Denver for the first time.

Today, Simon had an appointment and they performed his second bone marrow aspiration. It sounds like a painful procedure, but other than the initial pokes with lidicain, it doesn't bother Simon. (He was even outside playing with Ezri and Beau for a bit tonight!) We do not have to go back to see Dr. Cook until next Monday, but he will call as soon as he has the bone marrow results. That could be as early as Wednesday.

We are still waiting on the results of the HLA testing on the other kids. Dr. Cook expects those early next week, but will call if he hears anything sooner. Those results may very well determine whether we stay in Colorado for the transplant or up root to Seattle.

That very question has been weighing heavy on my heart. I have so much support in both places, and want to do what is best for Simon, keeping in mind the 4 other children I love so dearly. With that in mind, I asked Dr. Cook where he would take his own kids or his grandkids.

Since he has grandkids in Seattle, he said they would go there, but if they lived here in Colorado, he would be comfortable with Denver, especially if they were receiving the marrow from a matched sibling. If, on the other hand, the donor is an unrelated donor, Seattle might look more promising. Transplant with an unmatched donor is far more risky, especially if it is from an adult donor rather than from a cord blood donor.

His suggestion is to meet with the team in Denver and ask them any questions I have, including number of transplants, experience with aplastic anemia, etc. He said that one of the most important aspects of the transplant will be a good connection with the doctors performing it. If we meet with the doctors in Denver and just are not comfortable, he will refer us to Seattle for a second consult.

One advantage to Denver is the fact that it is a smaller center, which would mean more personalized care, without sacrificing quality, in Dr. Cooks opinion.

So, until we have the HLA results on the other kids, I need to put the whole Seattle verses Denver issue aside and focus on here and now!

Besides checking the quality of Simon's marrow, they will perform some other tests on it. One is the PNH test. PNH is a whole different condition, which would move the transplant up. Transplant is the only cure for that one. The other test is chromosomal fragility. I have no idea just what that means, but I figure I will deal with it only if I have to. The prior tests for both of those were either inconclusive or unsuccessful.

With bone marrow aspiration, people imagine a procedure that is far worse than the actual event. Simon is given a local anesthesia and conscious sedation. He feels the needle poke for the local, but when it is over, he can't remember it. His hip will feel bruised for a couple of days, but even that is mild.

Simon's platelets were way up today, at 52! They haven't been that high since he had the platelet transfusion in the hospital before they installed his port! His granulcytes were at .8, which is acceptable. His hemoglobin, how ever, was way down, at 6.4. On Wednesday morning, Simon will go into the hospital for his second transfusion.

That is the nuts and bolts of the past week, as far as Simon's condition goes. Emotionally, I have been all over the place. I have thoughts and feelings that I want to write about, but those will have to wait for another day. It has been a long day, and I need to call it a night!