10/18

Today was a pretty good day; a little oasis of respite from T cell induced graft v host disease and chemotherapy.  John took a couple of walks up and down the hall, sat up in a chair, ate a little, worked on his computer, and showered.  He had fun with the staff teasing the North Carolinian nurse about country music and her southern accent by giving her his best "thank you; thank you very much" Elvis routine.  There were also some John Wayne "Pilgrim" impersonations which the attending nurse was too young to understand.  Before discharge, I am sure there will be some occasion to whip out Dr. Evil...

For those of you who are not familiar with John's treatment, John is receiving a half match (haplo) transplant because no unrelated donor match was ever found.  In a half match, one of your children or a parent can donate because they received (children) or passed along (parent) half of your chromosomes, making them an exact half match, including the ones containing the immune system genes (HLA).  If this trial has good results that lead to standard treatment, about 90% of people who need a BMT will be able to find a donor.  John is also in the first clinical trial in humans of a bone marrow transplant with stem cells and T cells from 2 adult donors.  It is called "2 step": donor T cell administration followed by chemo to kill the activated T cells is step 1.  Administration of stem cells is step 2.  It is thought that the gvh disease from the T cells may decrease the odds of relapse later and that a double donor might give two immune systems the chance to identify and destroy cancer cells.  One of the donated immune systems may in time eliminate the other donated immune system; or, they may both engraft and live somewhat peaceably with each other inside John.  In that case, one will probably be more dominant and be represented in greater numbers than the other.  Bone marrow biopsies down the road will determine how much of each them there are.   There are some encouraging results of the half match procedure; not a lot is known about the double donor with T cells since that procedure is in its first human clinical trial.  There is some symmetry in trying a treatment very little is known about against John's really uncommon hematodermic cancer that not a lot is known about either. 


At 6:00 tonight, Day 0 began with the administration of stem cells.  This will re-initiate the graft v host disease as well as some graft v graft reaction with the accompanying severe GI distress, fevers and mucositis.  The good news is the symptoms may be a little less severe than the initial gvh; the bad news is the symptoms will continue until the stem cells engraft - a process that can take weeks.  So, please continue to send good wishes, prayers, positive energy John's way; this is a war that he will get through but it will be debilitating while it is being waged.

Under the banner of learning something new every day, here are some medical facts that have come our way in the last 48 hours:
1) Hospitals can serve neutropenic patients fresh fruit and vegetables because the hospital dieticians and food service staff know they have been correctly prepared.  At home neutropenic diets are still pretty much boiled fare to minimize the chance of food borne infection in immunocompromised patients. 
2) T cells can live 50 years; unfortunately, the donated T cells do not confer immunity.  Once his immune system can tolerate it (1-2 years post discharge), John will be re-vaccinated for all of the childhood diseases .
3) Even after he is discharged, John can't be around babies who have been recently vaccinated.  The live vaccines can shed up to a month post-vaccination.  We are going to have to figure out a visitation schedule in between our grand daughters' vaccination schedules; we are desperate to see them.
4) Post discharge, John can spend time with healthy children and babies.  This befuddles us since they may be contagious before they are symptomatic; I am sure more medical tidbits will come our way to help us figure out when we can safely spend time with the girls.
5) You can tell the stem cells are engrafting when the white blood cell count begins to improve.  John's current wbc count is 0.0
6) Michael and Zacc each donated a full portion of stem cells so John will receive 2 times the normal dose.  Evidence so far indicates that double donor BMTs engraft a little faster than  single donor BMTs (maybe because the patient is getting twice as many cells??  a little like the Doublemint gum advertisements for those of you old enough to remember...)


We cannot thank you enough for the expressions of encouragement and assistance.  We truly could not do this without the help and support of our families and friends.