perfect 10

So before I say anything else Gus just informed me that my MUDs (matched unrelated donors) are 10 of 10 matches and the lab has confirmed a 99% match. Now I don't understand the specifics of this, but apparently this means not only do I have 2 perfect HLA matches, they're both greater than a 99% genetic match. My BMT coordinator said I have "the highest quality match there is." A perfect match. Two of them. So that's really good news! I knew that I had a match and it was good, but I didn't realize how good.

So back to the here and now. I went to IPOP this morning hoping that my neutrophils had recovered, my hematocrit was stable/increasing, and my platelets were holding. The idea being that I'd feel much more comfortable going home if these were the conditions. My neutrophils took another dive - I forget the number (I think I blocked it out), but they were below 250. Ridiculous. My nurse Heather kept reminding me that "they bounce around a lot", but I was still disappointed. However, they gave me some fluid, I felt better and my hematocrit had increased overnight and my platelets had decreased, but not an alarming amount; we felt comfortable with me going home. So I did - I'm home! It was a REALLY weird and emotional time packing up the family housing apartment - as odd as it sounds, it was my little safe haven for 25 days. Gus and mom sterilized the place - I felt 100% safe and comfortable there, and I was a 2 minute walk from the hospital and all of my doctors. So leaving it was...weird. It had really begun to feel like home, in a bizarre and twisted way.

The drive home was uneventful, and we still have some unpacking to do (and mass quantities of laundry), but I'm here with my babies and I feel pretty good. Weird, but good! I still have to sleep in the guest room (can't sleep with the babies), and I can't drive or be alone for a long time (Gus's work is so close and he'll come home for lunch), but life feels a little bit more normal now that I'm back in our condo. I feel like a china doll - like if someone even looks at me the wrong way I'll crack or break. But not one of those creepy china dolls - a cute china doll. China as in porcelain.

Okay, I just tried to find an image of a non-creepy porcelain doll and came up emptyhanded, so I guess I'm a creepy china doll, but whatevs. I just feel so fragile and I hate it!

I have my next IPOP appointment on Saturday, and we're hoping for a big neutrophil jump. Life won't resemble anything normal until my neutrophils are recovered, unfortunately.

Oh, other good news. So the entire time I've been at Hopkins (53 days) we haven't met any other AML patients. Which is really weird, considering that 60% of the 18-20 inpatient leukemia patients at Hopkins have AML (not to mention all of the outpatient people I see daily in IPOP or other facilities). Today when I got into the IPOP waiting room, I was chatting with someone's mom (you could just tell she was someone's mom) about something topical, and nurses came up, which led to the discussion of chemo, and I found out her 22 year old daughter had the same chemo induction regimen as me - for AML! She had a MUD (matched unrelated donor) transplant, the same I'm going to have - and she's doing really well. In fact, her mom told us that the transplant stint had been easier for her than induction - which is really a crazy thought. And then the woman across the room from us (another mom) piped up with, "My daughter has AML with a FLT 3 mutation (what I have), and she had her transplant and she's getting married this year." So within the span of 15 minutes I met the caregivers of 2 other young women (the second woman with AML is 38 years old) with AML who have already gone through what I will go through this May. It was definitely encouraging - their stories, along with the fact that I have such a great match are really giving me hope that this transplant will mean the END of this mess.

This post needs a picture:

And that's all I've got. Sorry today's post is kinda dry - I'm really really tired. I'm off to shower and get into bed - tonight is the 2nd night that I'll be able to sleep through the night (I don't have to wake myself up at midnight and 6am to give myself IV medicine anymore), so that's pretty exciting. Signing off.