koan reminded me via email today that i haven't checked in here in quite awhile. so i thought i'd take a few minutes to explain where i've been hiding.
my sister was diagnosed as having common variable immune deficiency disorder
, or cvidd
, about 10 years ago and has maintained her health with gamma globulin transfusions monthly ever since.
about a year ago, her health started deteriorating. she was constantly exhausted, and her body was covered in bruises. she exhibited all the symptoms of lymphoma; however, there are NO
cancer cells in her body...and they've biopsied everything. her bone marrow is only barely producing blood products: whereas we have a platelet level of about 120,000...she needs platelet transfusions 3x a week to maintain 6,000. her hematocrit is around 15. it should be in the high 50's or low 60's. she has no b cells whatsoever. however, (and here's the stumper)...she's massively producing t cells. and those are attacking everything else. there is no "diagnosis" because they have no clue what she has. she has managed to stump the mayo clinic doctors...and that's tough to do! (this seems to be a major talent in my family...not exactly a claim to fame you want!) the dr who is treating her at mayo attended an international transplant conference about 2 weeks ago...and presented her case. it stumped everyone. the only thing they all agree on is that she needs a stem cell transplant. they can't agree on what treatment should take place before this occurs, tho.
so the siblings got together and had a blood-letting party...to see if one of us matched her well enough to be a donor. against all the odds (there's that family thing again!), i won the lottery. as i am 12 years older than she is, and have "been exposed" to foreign dna (because i have children... learn something new everyday!), i was the least likely match. we should have known.
anyway. my sister and i have taken up temporary residence in scottsdale, az. we have been very blessed in that a friend of the family has given us complete use of a very nice condo (with no less than 4 heated pools and 2 hot tubs!) free of charge until mar 1 (we HOPE she's home by then). she had her first chemo treatment on nov 30th, and depending on her blood levels and the results of another bone marrow biopsy in 3 weeks, we will either be prepped for the transplant, or go thru another round of chemo first. they're trying to kill off those t cells so that they don't interfere with my
stem cells. it's been an amazing learning experience...one i would wish on no one.
the people at mayo are just incredible. for a world class cancer center, there is an amazing lack of arrogance there. i thought we would be dealing with monster egos, however, mayo doesn't put up with that. if an employee is seeking only to further their own career, they're asked to do it elsewhere. their number one priority is patient care, period; and every employee there is necessary and important to achieve that goal. consequently, every employee is treated with courtesy and respect (imagine THAT!),
producing happy, fulfilled employees. each of them feels they've contributed to the welfare of the patient. the rest of the medical profession could...and should...take lessons.
when the time comes, i will undergo a thorough physical; i have already been told that, being married and monogomous for 30 years, as well as never having used needles in my life, makes for a good donor. when they questioned my history, i told them i was boring...and was told boring is GOOD!
then i will undergo a series of injections for 5 to 7 days, forcing my bone marrow to mass produce stem cells, which will then spill over into my blood stream. they will then extricate them by aspheresis (very similar to dialysis...they run my blood out of one arm, through a machine that will scoop out the stem cells, and back into the other arm!) twice, and infuse them into my sister. the interesting thing about this procedure is the posibility of rejection...it seems my
stem cells will try to reject her
body...the opposite of every other transplant. i'm already having a talk with them. however, the better the match, the less chance of rejection, and we were a perfect 12/12 match.
meanwhile, our families do their best in nm without us, as life goes on. our husbands must work, and while my kids are grown, hers are only 13 and 11..and still in school. our husbands, her kids, and our mom will be here for christmas, i will hopefully see my kids and granddaughters sometime in january. it looks like the transplant will actually take place sometime between dec 27th and jan 10th. when i am done, i will then go back to nm to her house to take up residence and care for her home (her husband owns and operates a business and works long hours). mom has been doing it for several months already, with our other sis and i spelling her about once a month. however, she wants to be here in az with my sis during and after the transplant.
it will be a long road to recovery: 45 to 60 days in the hospital immediately after, in a specially ventillated/filtrated room; she will have absolutely NO
immunities during this time and will therefore be vulnerable to everything
. visitors will be required to wear gowns, masks, etc, she will be on a special diet, and no plants will be allowed. then she must stay here near mayo for 100 days after the transplant. she can then hopefully go home with follow up care by her local oncologist with monthly trips to mayo for up to a year. she will assume my blood type when this is over; IF her hair falls out from the chemo and radiation, it is entirely possible she could inherit my hair color and texture as well (she asked if she could have my dna for big boobs, too...they said unlikely. party poopers)!!
in the midst of all this, we have moved. my poor husband and son did practically everything w/o me...i found the new house, signed the papers, and left. we moved from the santa fe area to the albuquerque area, about 90 miles...(and back to cable internet!...although i'm not home to enjoy it). it will remain a house and not a home until i get back to it full time, but that's ok. we know where our priorities are.
hope you and yours are ALL
doing well, and i wish each and every one of you a blessed holiday season. don't take your families for granted...enjoy them. remember to give thanx for the gifts that truly count.
and here's to a happy, prosperous, and above all, a HEALTHY new year to us all!