DAY+
28
May~9~2000
Hi from room739 bmt unit!Well with any luck this will be our last update from here!
We are going home at 10:00 tomorrow morning!Whoo hooo!Ok we are quite excited!
We have to give her all of her medicine orally just as we have been here,which took a lesson with the pharmacist today,it is quite the schedule but I think I have it down.They are sending us with a blood pressure machine and i'll do her blood draws twice a week.I have gotten pretty comfortable with it,so I am not too worried about it.We have to be back here at the clinic on Wednsday morning's,which actually makes me feel pretty good.Just knowing they will be seeing her once a week makes me feel better.
So alot of you are asking what 100% engrafted means.This comes from a dna study that tells them that all of the cells in the sample they sent are the donor's cells.Sometimes the child's cell's can be the one's to grow back all the way and sometimes part donor part the child grow back.So of course 100% is GREAT.I just love writing that 100%------=)
So she has done extremely well so far,they said today she is their poster child for this type of transplant.We are however in no way out of the wood's yet.She has a long way to go.Right now she has type 1 mild GVHD of the skin.They told us this can get worse at any time and affect any of her organ's.GVHD can be very serious.They say that there are no guarantees that she wouldn't show up with it even years out,but they did say that the farther out of transplant she is the better it look's for GVHD.Also she has no immune system so infection is a very big worry!But we will just take it one day at a time and be thankful for every good day we have!
Thank you Mom,Kellie and Lori Peter's,Dale and Jesse,Lindsay & Steffany for scrubbing the heck out of our house today. Also to Pam and Kellie for buying grocery's!I am actually looking forward to cooking!Weird!I bet you guy's are sooo tired!You are the BEST!
We are very thankful that we have such supportive wonderful friend's and family.We couldn't have both been up here with her without your help,especially my mom for taking care of Lindsay!We really think Jenna's spirit's have been so great because we were both here with her.It is so sad to see the kid's here without any family at all.It break's your heart!
Well that's about it !Next you hear from me hopefully will be from home!
Lot's of Love,
Randy,Kristi & Jenna