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I made it through my BMT (bone marrow transplant), which took place on June 28th, 1996! I'm in COMPLETE REMISSION and recovering quite well according to my doctors, and I'm feeling stronger as each week goes by. The recovery process is slow (they said it would be, they were right), but I'm alive and so happy to be here! My BMT has been a success!!!
As part of my recovery process, I've been on Prednisone to fight GVHD (Graft vs. Host Disease). The drug has put me into a diabetic state (which is resolving itself as they wean me off of it), so I've had to do two & three blood draws a day, give myself two & three daily insulin shots, plus I'm on nighttime hydration & infusion antibiotics (not to mention a load of oral antibiotics & other various medications), all of which make for a sometimes stressful and limiting schedule. The Prednisone has also made my face very puffy, I really HATE that side-effect! I'm being tapered off the drug right now, though, as I no longer show any evidence of GVHD, so by the end of September I'll be off Prednisone for good and doing even better!
I got my nickname when I was in the hospital in March, 1995, after being diagnosed with AML (acute myelogenous leukemia), some really nasty stuff. My sister brought me a cute, stuffed gorilla with a heart-shaped nametag on it that read "Jilly Gorilly".
My initial treatment consisted of several rounds of chemotherapy, but then I relapsed after being in remission for almost a full year.
My donor is an unrelated 49-year-old male (and a physician) living somewhere in the United States. That's all I'm allowed to know about him for now. We correspond anonymously, but are anxious to meet someday when we can.
I'd like to publicly express my deepest gratitude to my donor for giving me the greatest gift anyone can have: the gift of life!
Many of my friends offered to be tested to see if they might have been potential matches for me. Although that likelihood was very slim (about one in 20,000), I always encouraged them to be tested anyway, because they may well save the life of another someday, perhaps even an infant or a young child.
All it takes to be on the registry is a simple blood draw, and there is a varying fee involved for the lab work. Minorities nationwide are paid for with a Federal grant. Caucasians can be tested for free at marrow donor drives sponsored by companies, recipients, or blood centers that sometimes get special grants/donations that pay for free marrow testing. If you are a potential Caucasian donor willing to wait for funding, you can get it by having your name put on a waiting list, if necessary, through your local blood bank. In some states, the Red Cross will test for free if you're a regular blood and/or platelet donor. You may also contact your local chapter of the Leukemia Society of America for information on free marrow drives they sponsor.
If you'd like to know exactly what it's like to be a bone marrow donor, read about Michael Hofschulte's experience as a "bone-a-fide" lifesaver.
Hear about Will Lawson's Bone Marrow Transplant (and while you're there, be sure to read about Vrushali Ranadive and 'Her Appeal').
Melinda Hathaway, who passed away on September 16, 1996, has a wonderful web page that's a must-see. This young lady was quite a fighter.
Visit GrannyBarb's page, she's a leukemia survivor, too!
I'm living proof that all things happen for a reason: had I not fallen ill, I would never have had the spare time to sit at the computer during my days of recovery and meet my husband through a local BBS. We met in person at their annual picnic, then married six weeks later! He's the most wonderful man a woman could hope to have. We have between us two wonderful girls, two cats, two computers, two toasters, etc. We will be celebrating our first wedding anniversary on September 16th. He's been a real blessing through this process, very supportive, very loving. What a guy!
Despite the setbacks, I am continuing my never-ending pursuit of having a singing & acting career, but I need some great connections, so if you are successful yourself and can point me in the right direction, please WRITE!! However, if you simply have comments or suggestions about me or my web page, by all means, you may also feel free!
This page isn't an exact work of art, but at least you can see what I looked like with a full head of hair.
Please visit my brother's web page.
Here's me, Jilly...
If we see you smoking, we will assume you are on fire
and take appropriate measures.
A very special thanks to Lindsay K. at Wolfenet for painstakingly (and successfully) re-writing my web page, correcting my mistakes. Additional thanks to all those who offered their assistance & suggestions.