6 Days and Counting !!!!!!

Hey Everybody,

Hope this finds all of you enjoying vacations and keeping cool. We are doing well just running around like crazy. I find if I keep really busy I don't have time to think about whats coming ahead and thats my strategy for keeping "perky". Unfortunately, last weekend I was not too perky. jessie's son Christian got a GI bug and high fever on Fri. nite so they couldn't come. It was going to be a killer trip for them. All that way for 24 hrs. But then the weather was terrible anyway so the boys decided not to come. Joe and I drove down at 6:30 am sat. and didn't find out the kids weren't coming till we got to the shore. I was very dissappointed to say the least. after moping around for the day we decided to go homeSat. afternoon so i could spend time with the boys. I felt better when we got home. We had plans this weekend that just changed so now we are all going to the shore this weekend. PLEASE keep your fingers crossed that everone stays healthy so we can all be together. Other then that not much else is new.I am trying to spend time with family and friends because it will be quite a while before i can socialize. But not to worry, as soon as i am able we ARE GOING TO HAVE A COSMO PARTY TO CELEBRATE Bob and my new health. So please keep up the prayers and thank you for all the cards and blogs that keep coming. I am the luckiest gal in the world to have fods like you..

All my love Debbie

Donor Change of Heart

Hello Everyone,

Well here we are again with more news in the ever changing saga of this stem cell transplant. I got a call on Tues. late afternoon from Dr. Porters office that "the donor (the original 36 yr. old woman) called and changed her mind and will donate stem cells after all". Well honestly, I was speechless, which doesn't happen often to me. Heather (Dr. Porters nurse) asked if i could check in on thursday. Well i hesitated before asking can we put it off till next week? I was planning on having a weekend at the shore with the kids and grandkids. She said sure. We will do it Aug. 2nd. Well tues. was joes bd and we were having dinner with joey at his fav restaurant. Then we had that bad storm and lost our electric for 24 hrs. In the meantime i couldn't sleep cause i was thinking how silly it must have sounded to Heather that i didn't just agree to come in when they wanted me on Thurs. (which would have been today). Anyway in the meantime I've had this little rash on my back that i thought was poison ivy that started becoming painful on Tues. and by wed. looked and felt worse. I started thinking " i wonder if this rash is shingles?" Well i went to my new family Dr. who confirmed that indeed it was shingles and to let Penn know right away. So when after 3 phone calls i finally told Heather she said i needed to wait 2 weeks anyway, so i could stop feeling guilty . So Aug. 2nd it is. and i am ok with that. Hopefully will get together with all the kids this weekend, although i am not sure that i should be near Emma as i could give her chicken pox because of my shingles. They are the same virus. Everything is upin the air. Are you all following this storyline? It seems a little disjointed. Where is Joe when i need his preciseness? Well thankyou all for thinking of me and the continued cards and blogs. I really appreciate it. Will keep you all informed about any new developments..

Lots of Love debbie

A

Donor Update: July 13, 2006

Dear Fods,

Thank you for all of you supportive blogs, cards and words of understanding of our donor back-out. I agree that things happen for a reason and someone greater than us is in charge. We have been informed that there is a potential new donor, 9 out of 10, but a different blood type and they are checking her out now for the next step in the procedure. So I will await patiently while they check this new donor out and enjoy the extra time with family and friends.

We had our transplant information class today at HUP. I was surprised and happy to see that there were 3 other families going through the same ordeal over the next 2 weeks. The class covered a lot of information that we had not thought about, from the chemo reactions (YUK!!) to nuitritonal concerns, a.k.a. I won't eat their food!, to exercise -- I get my own bike -- so someone come and use it!! and seriously, the Dreaded graft v. host disease. This is seriously dangerous stuff. It is expected after a transplant, but scary none the less. We do want some graft v host to kill the leukemia, but too much is not a good thing! Of course they have drugs to counteract this, but they have their own dangerous side-effects.

I will probably have 5-6 weeks in the hospital -- 3-4 weeks in my room in isolation!! Yikes!! I am allowed movies, cards, books, etc. that will have to be wiped down with bleach before I can handle them.

Once home, the major restrictions are nuitritional. No foods from a restuarants, deli's or take out of any kind. No baked goods, and in particular no "pond cakes" will be allowed. Maybe, I will take off this extra weight that I have added in anticipation of this ordeal.

After Penn, we went straight to Sails in OC and had a nice Bloody Mary on the Bay. After our late lunch, we came home and I slept for 2 hours on the couch and I feel great.

We hope enjoy our quiet time on the beach and will keep you informed on the status of the new donor and the future progess of my treatment plan.

JT is typing this on my behalf. Sorry if this seems too precise.

Deb sends her love to all.

The Case of the Disappearing Donor

Dear Fod's,

Another monkey wrench to add to our ever growing collection! Deb received a call from Oz today and was informed that the donor had "bolted" and would not be participating in the procedure. Obviously, this was very disappointing for Debbie who has been building herself up for the next challenge. Getting ready for a 6-8 week hospital stay would make anyone's knees turn to jelly. Stepping down from this preparation is not easy. From my side, I prefer to see these things as "signs" which I cannot explain. We had multiple "failures to launch" at Jefferson and are now very glad to have missed that procedure. While we are both concerned that Deb may fall out of remission, I still have confidence in the curative effects of her five rounds of chemotherapy and a positive outcome in the end.

Oz said that there is a new very favorable potential donor in the bank, however, we still need to work through the preliminaries, answer more questions, and of course, get this donor over the finish line. We will attend the transplant class on Thursday, as scheduled, and then take a long weekend at the shore. When we know anything further, we will let you know.

Thanks to all for your continued support and prayers.

Deb sends her love to all.

14 Days and Counting !!!!!!

Hello Everyone,

I hope this post finds you all well and rested after the long holiday weekend. Beautiful weather at the shore and i think here as well. We were there with all the kids and grandbabies. We had a great time. Christian loves the water and sand. He had great playmates with Joey and Michael. Miss Emma was pleasent as can be sitting in her tent and smiling at everyone. They slept well and kept us laughing.
Joe and I headed home early (6AM) b/c we had an appt. at Penn at 8:00am. Well for the first time we were late ! It took us over 2hrs. to get to Philly. We were backed up from the AC expressway to the WW bridge. I knew from that point that this was going to be a horrible, bad no good day!!! We got to the lab around 8:20 and they drew 16 tubes of blood(HONESTLY!!!!). i wasn't paying attention but wheen they went to take my BP i had leaked blood all over my white linen blouse. Then into the treatment room for the BMB. I was still calm at this point but knew things were not going my way. Dr. Porter came in with the bome marrow transplant nurse practitioner (Jackie) and said "Jackie is going to do the bmb today and go over the schedule of chemo with you". I did protest and sais" But Dr. Porter, you know what a tough hinney i have and these sweet LITTLE nurses can't do the bmb as quickly as you do" Well needless to say i lost this argument and had yet another 20 min. torturous biopsy. I actually cried this time and said i was never coming back !!!! Jackie was thrilled because the sample she got was so large. A piece of bone the size of half a toothpick. I don't mean to scare anyone with details but why would anyoneperform this procedure without sedation? I am going to lobby for pts. rights when this is over. I got home after 1pm and had to go to the dentist to have 2 fillings replaced. YIKES !!!!! Drilling both ends in one day. My dentist was so kind and gentle. He knew i was scared to death and he used lots of novacaine and didn't hurt me even a tiny bit.
So anyway, back to Dr. Porter. He went over all the chemo tx. i will receive in prep for the transplant. I am being adm. to Penn on July 19th and will start chemo that day. Three different kinds of chem (Campath, Fludarabine and Busulfan) for 7 days and then i get the stem cells on Friday July 28th. Then i guess the scary part starts. But we are all going to pray that i won't have any scary parts. I will be isolated in my room for 16 to 21 days depending on how quickly my counts return to normal. They anticipate a 5 or 6 week hospital stay.
So this is really coming up a little more quickly then i thought. Dr. Porter put a "rush" on it as he is worried that i will come out of remission b/c of that nasty chromesone. He was very sweet today, even though I am annoyed with him that he didn't do the bmb. He had to review all the risks and side affects of the procedure so I would know what to expect. When he saw my eyes well up he said well thats enough of this and from now on we will only discuss good things. Amen to that !! He feels That I am very strong and will do fine and i feel that way too. There will probably be some rough days ahead but i am Determined to be better by this Christmas. It will take a full year to recover my strength and know how the transplant "grafted", meaning the donor stem cells.
So please keep up the prayers and good thoughts. I know you will and i thank you for that.I know i am being so redundant but you all mean the world to me and i feel like you've all been on this journey with me thru thick and thin. Lots and lots of love. I will keep you posted. I have a 3 hr. class next week to go over the nitty gritty details of the procedure and recovery. Didn't we just do that today? Enjoy the nice weather coming our way. Maybe we can turn off the air for a few days.

Love Debbie

14 Days and Counting !!!!!!