[Nfbf-l] most recent update on Jim

[Sherri]

Wow, keep those prayers going Jim's way! He's got a long but positive road 
ahead!

Written 59 minutes ago

Good afternoon, Yesterday, we attended a pre-transplant class for patients 
that were held in the BMT unit at Moffitt hospital. The transplant 
coordinator sent us a patient/caregiver guide the day before the class. I 
was very appreciative and impressed because the PDF was accessible; and, I 
had no problems reading it with my screen reader. The same can be said for 
the subsequent PDF and handouts that are formatted in Microsoft word. The 
coordinator, the BMT transition nurse and the education department have been 
very accommodating with providing us the materials in an accessible format. 
They setup a private class for us so that we would have more time to go over 
the details while running the slide presentation. Aside from this class, 
there is a class for caregivers that I am going to attend even though I am 
not going to be one of the caregivers during the transitional stage of the 
post-transplant. One of the requirements of the caregiver is that they must 
be able to drive. However, I want to continue to be as involved as much as I 
can and know what is going on. I've already read all of the material that 
was sent to us. Let's just say that we have a long road ahead of us. As I 
may have mentioned before, he will have testing performed of his vital 
organs in January. This takes about three days. The donor will also be going 
through their physical and testing at the same time. Then, in February, he 
will go into the hospital where he will undergo a very intensive 
chemotherapy; much more intensive than what he's undergone thus far. This is 
called induction therapy. During that time, the donor will be going through 
production and harvesting process of stem cells which will be from 
peripheral blood; not the bone marrow. Once enough stem cells have been 
collected, they will immediately fly the cells to the hospital and be 
delivered to his bedside. I found it interesting that they will not be 
frozen as this is an allogeneic stem cell transplant. He will then receive 
his stem cells. Then, it will take about two weeks for the cells to engraft. 
He will spend around six weeks in the hospital for the transplant. 
Afterwards, he will move into temporary housing near the hospital where he 
and the caregiver will reside for two months. He will then be able to come 
back home after the transplant doctor says it is okay. He will have to wear 
a mask whenever he goes out in public until his immune system is able to 
fight off germs. Of course, he will still be on a plethora of medications 
for some time after the transplant; and, there are very strict guidelines 
with regards to his diet after his transplant as he will be 
immunosuppressed. Much of those restrictions will be lifted when the primary 
transplant doctor gives the okay. We also found out that Jim will have to 
receive all of his childhood vaccines again after the transplant. They will 
be given to him over the course of a year. He will also have to wear 
sunscreen (SPF 30 or higher), especially on areas that will be exposed to 
the sun, for the rest of his life. One hundred days out post-transplant, he 
will have to be monitored for signs of acute graft versus host disease 
(GVHD). They are prepared with medications to handle this in the event this 
occurs. Beyond that, we will have to be aware of signs of chronic GVHD; 
which can come and go throughout the rest of his life. Again, there are meds 
that can help deal with the flare ups. A mild case of gVHD after the 
transplant is a good thing, according to the transplant doctor and 
transition nurse. It means that the donor cells are engrafting and working. 
While the next upcoming months will be arduous, stressful and perhaps 
sometimes scary, Jim is very positive about moving forward and getting this 
done. I told him that there are some who believe that getting the transplant 
as a time of rebirth. Therefore, each year, I think we should celebrate both 
of his birthdays; his biological birthday and his transplant day. The 
transition nurse told us that the day he receives his stem cells, it is 
marked as day 0. This transplant will have a profound impact on our lives; 
and I want to be there, if at all possible, when he receives his cells. I 
know that the process itself will be just like when he gets a blood 
transfusion; however, it will be an extra special time because of the gift 
he is receiving from an anonymous donor. A year after the transplant, I 
believe we will be allowed to know who the donor is if the donor is okay 
with it. On Monday, the 16TH, Jim will go back to the hospital for the last 
Hyper-CVAD treatment. As I always do, I am praying that it will go smoothly 
and he will not have to spend extra days there because it makes him so 
miserable. All-in-all, he has been sleeping a great deal this week. His 
weight is down to 118 even though he's ramped up his eating. I heard our 
medical insurance nurse talking to him on the phone today about drinking 
insure. He flat out told her that he hates the stuff and he will not drink 
it. We are going to try and find some protein powder that I can put in his 
milk shakes that I make for him almost every night. It consists of 
Neapolitan ice-cream, bananas and peanut butter. He loves, loves them. 
Anyway, this post has taken me an incredible length of time to write due to 
all of the interruptions. Thus, I shall bring this to a close because I keep 
getting phone calls which are interrupting my train of thought. Have a good 
evening all. Kim

Sherri

Character is the side of yourself you choose to show the world.
Integrity is what you do, what you say and how you act when you think no one 
is paying attention.
Sherri Brun
NFBF Newsline Chair
flmom2006 at gmail.com