Gearing Up

Hey everyone,

Well, I've finally got a free day to catch you up. Last week was crazy busy. We started w/ a trip to HUP on Monday to see Dr. L, where Bob signed the consents for the sct, and had 17 tubes of blood drawn.......yes, that's right, 17!!! We talked w/ her a bit about the transplant, and she's "cautiously optimistic" it will be successful. She would like to see a lower blast count on the bone marrow, but doesn't feel she can get it any lower than it is, which is 15-16%. I can't remember if I told you that already or not. It was reported as 12% originally, but after Dr. L checked the slides herself she corrected it to 15-16%. But as she says we do it now or we don't do it, and Bob said "we're doing it!!!!!" So full steam ahead.

On Thursday we went to the sct class,(which I have to tell you Bob tried to get out of on the basis of being an MD. He doesn't play that card very often, but neither of us really wanted to hear about all the possible side effects. Well, it didn't work anyway...no class=no transplant). So we trekked downtown again and as expected had the bejeezus scared out of us...or at least I did. I mean, I remember about a lot of the possible adverse occurrences from when Debbie was going in, but having it all refreshed 1 week before Bob goes thru it just isn't kind. Aside from the side effects from the chemo, the biggest danger is from GRAFT VERSUS HOST DISEASE or GVHD. This occurs when the graft or donated marrow doesn't recognize Bobs own healthy tissue, but senses it as foreign and starts attacking it. Well, I don't want to get more technical, and I'm certainly not going to describe the symptoms, but it could make Bob really ill. A little GVHD is actually a good thing though, b/c it lets us know that the new marrow is also attacking the leukemia.Anyway a lot of the class was about that, and like a bad song you can't get out of your brain, this is stuck in mine.

We also had a very informative session with the nutritionist. Yikes, EEK! and ai, yi,yi! Immediately after the sct and for at least 100 days after he comes home, Bob can only eat food that is prepared at home and within one hour of being cooked! Absolutely no take-out, no restaurant food, no bakery-made food. In other words nothing that was handled by anyone but us. Not even a pizza or a cheesesteak. No leftovers unless they're frozen right after they're made...and only in small, shallow containers, b/c big or tall containers take too long to freeze. Sheesh!! And of course no raw fruit or veggies. Thick skinned fruit like melons are okay if we scrub the rinds before cutting them. The coffee-maker has to be cleaned with vinegar after each use. No multi-serving containers of any foods like cottage cheese or yogurt...only individual serving sizes. No jars of mayo or mustard or jelly that you stick a knife in---only squeezy containers. Bottled water only. I mean there are 4 pages of restrictions. Geez, I'm getting tired just thinking of it. This is really gonna make my brain work overtime. I imagine we'll get used to it though and it'll become second nature.

I hope all this grousing doesn't make me seem like an ungrateful brat, b/c I'm anything but. I thank God this procedure is available and for all the HUP staff who will implement it. Not to mention the donor, whom we are told is a 31 yr. old man. That's all the info we're allowed at this point. If after 1 year he and Bob both agree, they can exchange personal info. In the meantime we have written to him thru the transplant coordinator at Penn, to thank him for his generous and thoughtful spirit.

Gosh, I am rattling on today...guess it's my "nerves" as my Mother would say. And a belated Happy Mothers Day to all the Moms out there. We spent the day w/ Bobs Aunt Millie and cousin Candy who whipped up a feast of brie, lamb, pasta, roasted veggies and ricotta cheesecake. I haven't seen Bob eat so much in a very long time. His pants were actually tight and he complained(in a good way) about overeating all night. It was a lovely afternoon and I'm glad Bob was feeling up to it, and I thank them both for all their hard work, although I know they would do anything for Bob.

So, we're just tying up loose ends all week. We report to admissions at HUP on Friday at 9am. From there Bob goes to have another Hickman catheter placed, since the line he has in now won't be enough for all the drugs he'll be getting. Than after the line is in he'll go to his room. He'll be on Rhoads 7 again. I'll let you know what room.The chemo will start on Saturday...2 different drugs for 4 days, than 2 days of rest and than the actual infusion of donor stem cells will take place on Friday the 25th(my brothers birthday, and also Bobs new birthday in a way). Than the timeline is discharge on day 30, or zero + 30 as HUP refers to it(like D-Day) with the day of the transplant being day zero. Of course, this is if everything goes according to Hoyle. The big thing everyone will be focused on is "engraftment", which is the new stem cells actually taking hold and growing in Bobs marrow. We'll know that's happening when his blood counts start coming back to normal. That's expected to occur sometime between days 14 and 21. In the meantime Bob will be in strict isolation. He'll be kicked out of his room the day before the transplant so it can be cleaned....walls, curtains, bed, chairs...the works. Every morning after that, he'll have to take an anti-bacterial shower and have his sheets changed. And of course anyone going into his room will need to gown, glove and mask. For now we're going to limit visitors to family, and of course nobody with even a hint of a cold etc. will be allowed. But 30 days in the same room is going to get tiresome to say the least, so I'm hoping that Bob will feel well enough to have more company. And I'm hoping too that you guys and gals are going to blog to him when he's in. I understand the reluctance to write now, but it is nice to get feedback and know these posts are being read. And he really enjoyed your blogs the last time around. I'm not sure about sending cards. I know everything that comes into the room has to be wiped down w/ bleach wipes, so I'll ask about that and let you know.

Well, I've gone on too long and probably have broken the "too much information" meter, but again, I think that's my anxiety, and it seems to help for some reason, to put this into words. I read this and think...we'll be okay, Bob can do this. He is one strong-minded(politically correct term) individual, as most, if not all of you know. I know he's in a positive frame of mind and will do his best. And w/ your prayers and Gods' help I will have him home by the end of June.

So, wish us luck, and please keep Bob and I in your prayers. I'll be in touch.

All our love and thanks,
Bob and Mo

And a P.S. to ask for renewed prayers for our girl Deb who's going thru a rough spell right now w/ fevers and such. She has been so strong for so long and I wish she could catch a break. Please keep her in your prayers as well.