Wednesday, July 23, 2008

The Latest News on James

Hello Everyone,

It’s been awhile since we have written for the blog. Our close friend Bill has been nice enough to keep things going over the past two months. We realized today just how long it’s been and thought a note to you all was in order.

James was released from his second hospital stay on Thursday, July 10th, in time to go to our friends’ wedding the next day. He was in the hospital for 27 days this go-around. His official diagnosis for treatment while in the hospital was Graft vs. Host Disease (GVHD). This is when the new donor immune system doesn’t recognize parts of James’ body so assumes it is something bad and attacks it. In general, GVHD attacks the skin (a rash), the digestive system (think REALLY BAD stomach flu), the liver, and the eyes.

James’ GVHD manifested in a skin rash and problems with his digestive tract. Because he wasn’t absorbing any food, he needed to be put on IV supplements. He was without important proteins for awhile, which led to CRAZY water retention (James gained 40-50 lbs in water weight in 1 week, he blew up like the Michelin man, poor guy). They increased his steroids to treat the GVHD, which led to medication induced diabetes, for which he is still being treated. Meanwhile, several viral and bacterial infections began to rear their heads. It was all a bit overwhelming for the first two weeks he was in hospital, but slowly James began to make progress on all fronts. He is eating a very restricted diet to give his system a chance to heal and taking lots of meds, but he is home and doing well.

Although the GVHD is alarming, there is a potential good side to it: when the rest of his body is being attacked by the donor immune system, if there was any remaining marrow of James’ that was not destroyed by the chemo, it is likely also being attacked. This means that if there were any remaining marrow cells with MDS in James’ bones, the new donor immune system likely destroyed these at the same time they were attacking his stomach and skin. The doctors like to say that “a little GVHD is good” specifically for this reason.

We just found out great news! On his last day in hospital James underwent his first bone marrow biopsy post-transplant. This is the most important post-transplant test. From it we found out that none of James’ old marrow cells were present, only donor cells. This is wonderful news as it tells us that engraftment has occurred and the transplant was, at this point, successful. James’ marrow will be tested several more times over the coming year to make sure that the level of donor cells remains high, but this is a great first step. We are still awaiting some additional tests from the biopsy to see if James’ chromosomes are also healthy. We will let everyone know when we find out the results.

On the financial side of things, we did receive some bad news when James was in the hospital: we have officially exceeded the allotted transplant funds according to our insurance plan. This means that much of James’ second hospital stay and subsequent procedures will be paid out of pocket by us. We will be joining a new health plan soon, but we suspect that we will owe between $20-$75K, depending on what we can negotiate with the hospital.

We will be having some fundraising events in the next few months to help defray these costs and will keep you posted regarding when and where these will be occurring.

Thanks for all of your support and encouragement.

James and Stacey

Thursday, July 3, 2008

July, 2008: Two Months After the Transplant

Okay, here's the first James Shibley update in a while: When the medical people said this would take a year, many of us - including James - figured that would be front-loaded to the main event, the transplant itself. When James went home from the hospital afterwards, things were looking great. James was playing with the kid, and going for long walks. In short, for a few brief shining weeks this all seemed to be drifting into the past.

However, there is a reason doctors go to med school - it's to learn more about medicine than the rest of us, and it turns out they were right: This will take a year.

Several weeks ago, James went back into the hospital and it looks like his stay this time will be around a month. He mentioned possibly going home by the early middle of July. I don't think he is in any unexpected danger for this procedure - he just needs to be given medicine intravenously and he can't do that as an outpatient. Obviously, it's a huge challenge emotionally to do this all again - for all of us but especially for him and Stacey.

The way I see this is that we were surprised and shocked back in December, 2007, at the news and scope of the initial problem. For months, that never really had a chance to dissipate. I'm grateful for the weeks when James returned home and life seemed almost normal again. This stretch gave us a break to recover from the first go-around. Now that we're rested again, we should be less surprised at this setback and more used to the idea of this as part of life in 2008.

Yes, it sucks. I mean it really sucks. But it's supposed to suck so that's what it is doing. James has aced this procedure up until now. He was in the top of all possible responses. Hopefully, this is a temporary dip into a more typical reaction to an unbelievably complicated and invasive medical move.

So, onward. One other good thing is that the second month in the hospital is part of that year it is supposed to take for James to recover. So time is passing with the 3 most important words in all of life: To Be Continued. ---Bill McDonald