Day +4 - counts still going down and lots of challenges. There is a low dose chemotherapy that they give patients post transplant which help with graft vs host disease. Fortunately, the drug does help but has a miserable side effect called "mucositis". Well, Jen started taking the drug approx 2 days ago and the muco started right on schedule. Though they told us it would affect mainly her throat, she seems to have more trouble in her upper stomach/esophagus region. So, last night, when all else failed, they gave her a morphine pump. Not only does this help the pain immediately, but if you know Jen, she feels back in control since she's pushing the button to release the morphine. She's feeling much better now and trying to eat on her own. It will take about 6 more days before counts start back up so this will be a hard week for her. But, she's plugging along and coping as well as can be expected. Tomorrow is another day and next report may have totally different news for you.

PS - She still looks great, holding on to her hair, good color - she fools them all the time!

jo/mom/granny

I know you've been waiting. We're waiting too. Jen's counts, as expected, are hovering at 0. It's a waiting game. A crucial time in this whole process. The stem cells are getting in place. They want to do their job. She was given some red cells and platelets to get things started; part of the protocol. Food is not her friend so she'll get IV nourishment, part of the protocol. She's anxious and weak and waiting. We've received lots of info on what is going on in her body, what to expect and how long to wait - 10 to 14 days before engraftment. They told us to watch her counts. They go down to rock bottom and slowly start to build back up. They might fluctuate for awhile. Don't worry. When we see a trend of 3 days or more of slight increases with no decreases. engraftment is happening.

Ron A thank you so much for writing. Jen needed to hear from you. Actually, we've all been waiting to hear from you. Only you truly know what she is going through. You are her role model and she's trying to be brave like you.

I or someone else will write when we can. Sorry, things are a little busy here. Jen and her family appreciate your encouraging words. We worry about giving inaccurate information to you guys so please forgive the generalizing and being vague.

Thanks for your support.

jo/mom/granny

jo/mom/granny

DAY 0

Most of Tuesday 10/6, a day that will go down in infamy, was spent waiting to hear the whereabouts of those precious stem cells from that precious donor. Finally, about 2:00 PM, we got word that they arrived in the area and we were given 5:00 to 6:00 PM as "transplant time". Around 5:15 PM, the nurse brought in the precious bag containing the precious cells - long explanations followed and at 6:00 PM exactly, Jen was hooked up by that precious nurse to those precious cells. We were told that the transplant would take about 3-3 1/2 hrs with a slow drip but, if after the first 15 min there were no problems, they could increase the drip time. Well, Jen experienced no symptoms, all vital signs normal, no side effects, etc. so the drip was increased and the entire transplant was done by 8:30. I don't think she could have had a better experience. She's proving all the statistics wrong, so far: no mouth sores, limited vomiting, no hair loss. They tell us the next few days will be crucial and the above problems might show up but because she has "dodged the bullet" so well, they might be less severe.

All those prayers and good wishes from you all has so far paid off. We are feeling very confident that this transplant is going to be a success! We will definitely keep you informed when time allows as we try to spend as much time with Jen as possible. Just in case, please keep up the good work and we promise you Jen will also.

jo/mom/granny

Day -2

I believe there is a term chemo brain. I have it and if the is no such term than I have just created it! It is not comfortable in that brain and there are many distiburbances between the brain and these fingers batting away. Painful and stiff! Horribly Frustrating! Everything moves in slow motion and absolutely positivley must involve tears. I cry when my boys fight, when my sisters flight was delayed, when I felt I was going to throw up, when I pee into the little hats that they are collecting ALL my of bodily excrerement! YES ALL OF IT!! i CRY AND CRY YOU HAVE NO IDEA. I cannot stop and have given up trying which is quite a relief....
I also a considering becoming a pharmacyst because I now know various forms of anti-nauseous medications and actually have gone through oxy-codone withdrawl myself since checking in! Enough for now. I can barely keep my eyes open
I love you

Day -3

Everyday I feel a little sicker. Only pieces of my hair falling out here and there -no big clumps or anything. I am terribly neauseous all the time. It is horrible. Smells, tastes, smells & tastes-it's torturture. Everything is alot of work. I am very teary and just looking out the window makes me cry. How I long to be out with all of you. It is so hard. I am just patiently waiting for my sister & her babies to arrive. I hope that will help everyone. It's so hard not to cry. My poor husband-who doesn't know whether to come or go = I feel so bad for him....
I love you all so much-keep praying for me

Day Minus 4

It's 5:00 am and I have just begun another Bulsufan treatment. They gave me an extra shot of Adavan to help with the neausea. Which I really need. I just got off the phone with Meg who I CANNOT WAIT TO SEE!!!!!! Do any of you have any idea how desperate I am to see her? I can't wait!! I feel like it is Christmas! She will be here by Sunday afternoon. Praise God!

minus five and counting

Today is day 3 of chemotherapy for Jen. Day 1 she was admitted, had multiple hospital personnel visitors, etc. and then her first dose of chemotherapy began right around 12:30 PM our time and lasted exactly 1 hour. They have included anti-nauseous medication in the protocol and, though Jen did feel nauseous, the medication kept everything under control and actually she faired beautifully. Her biggest problem seems to be lack of sleep since nurses come to bother her all hours of the day and night.

Day 2 was much like Day 1 though Jen spent the day catching up on all that sleep she missed the night before. She actually fell asleep while talking to the chaplain(who did not take it personally). I must add that both day 1 and day 2 she managed to ride a stationay bike for2 miles so Jen is still being Jen and taking as good care of herself as she's able.

Day 3 (today) the protocol changed to the 2nd chemotherapy treatment which, for some reason, was started at 5:00 AM and lasted much longer than the first 2 days. She is tired but her side effects have really been minimal and I think she is doing great - still looks the same, eating some and playing by the rules.

I'm sure you guys all have a lot of questions which I may or may not be able to answer, but wanted you to know that SO FAR, SO GOOD. We'll keep in touch.

love to you all
jo/mom/granny