[Nfbf-l] most recent update on Jim

[JamesPJ at aol.com]

Wonderful news about Jim.  GOD IS ABLE!
 
James
 
 
In a message dated 12/12/2013 6:39:26 P.M. Central Standard Time,  
flmom2006 at gmail.com writes:

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
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