Friday, May 29, 2009

Day +122 - Outlook not so good

So here's the deal. The docs think my graft may be failing. It supposedly occurs in only 5% of transplant recipicients, and they don't know why it's happening in my case. It's similar to a condition called aplastic anemia, in which the stem cells produce normal, healthy blood, but just not enough of it. This is unlike my previous condition where my stem cells were producing a slew of malfunctioning cancerous cells, which was crowding out the healthy cells and causing their counts to be low. But this aplastic anemia condition is just as bad as MDS, if not worse, since the stem cells are on the verge of essentially shutting down, meaning no new blood is being produced at all. At least before I was sort of just hovering at low counts. Right now my white blood cell count is at 0.0, my platelets are at 21 and dropping, and my red blood is trending down as well. SO, there are three options right now:

1) the new stem cells magically rebound and start producing blood on their own
2) growth hormones and steroids are used to help jump-start the stem cells to get them going again
3) re-transplant

Option 1 is the best-case scenario, since things would just return to normal with no intervention. Option 2 is a good-case scenario, but the risk is that it's possible the growth hormones might actually reactivate my old immune system. Even though my old immune system is insignificant and essentially killed off, there is a slight chance it could be enough to cause the old immune system to kill off the new cells and take over again. This would put me back at square 1, but still better than being stuck in my current state of limbo.

Option 3 is the last-ditch scenario, since I didn't have a lot of donors to start with and they prefer not to use the same donor in this case. It also means juggling around insurance companies since most insurance providers have a lifetime maximum for transplants and I've already exceeded mine. Plus it's a dangerous procedure and just a sucky experience all around since it means a month in the hospital and another 4 months of recovery and worry the whole time.

The docs aren't comfortable just waiting around for option 1 so the Hutch has already started looking for a new donor. They think the graft will fail and that a transplant is immiment. We've started with the growth hormones and steroids in option 2 to keep me going until the day of transplant. If things start recovering because of option 2, we would consider canceling the transplant. But they want to start down that road just in case. The growth hormones consist of a daily sub-cutaneous shot in the arm, and I'm back to 100mg of steroids a day which has actually reduced my recent flare-up of skin GVHD quite a bit. We've been reading that a flare-up of GVHD can be a cause for graft failure, so we're hoping the steroids might resolve both problems. Of course it's not a permanent solution, but at least the steroids give me a huge boost in energy, which has sort of helped me deal with all this stuff. :)

So the last couple of days have been pretty discouraging for us. Things went from super well to super dire in just a matter of days. Even the doctors at the Hutch were surprised. Luckily all the right people are involved and a lot of thought is going into these decisions, so I'm in the best hands I can be. Next Monday I'll have another PICC catheter put in my arm for my now-daily blood draws and we're just taking things day by day.

Keep your fingers crossed a lot.

Here are a couple of recent pictures from Mother's day, when we had a nice day of going to the Volunteer Park Cafe and then the Kubota Gardens in South Seattle. This is a nice, big sort of meandering garden that isn't as small and formal as some of the other japanese gardens.


SDATHFRHHC Nic said...

Fingers are super-duper crossed!

Option 1! Option 1!

I'm holding out for the best case scenario - let us know if you need to take your mind off things with some Castle Crashers...

Ali Partovi said...

as always, my fingers are crossed!!

Beth said...

Well fooey dern. You're not back to square one because you are so much smarter and have such a strong support team with you, though I can imagine it feels like square minus one right now. Facts are you'll pull through this also. Though I'm not an optimist by nature, I'm praying for option 1. Sounds like the Doc's are pretty sound and competent by kicking in options 2 and 3 are the same.
Lots of love and prayers
Jeff and Beth

Cassie Wallender said...

I'm sorry to hear this, Steve, you're in my thoughts! We miss you back at iLike.

sureshk said...

Rooting for option 1 as well.

farookh said...

methinks the stem cells felt a little neglected. blog more often and keep them happy. and see how they kick back into gear.

my mom's prayers are with you too. and if you want more gulab jamuns to cheer you up, let me know. :)

Anonymous said...

Well it looks like this may be tougher than we all hoped and prayed. Time to re-double our efforts at "Keepa smilin' and keepa rockin". No time for a pity party gotta buck up and press on. We're all still pulling for ya.
Uncle Leon & Aunt Sue

b said...

Steve -

It has been a long time and I just saw your fb status. Ended up here for a the past while reading up on the last year.

Words often fail me, so I'll just say I am thinking of you and impressed by your wonderful spirit. My warmest thoughts and positive mental energy are en route to Seattle right now.