#2 8 doses of Total body Radiation over 4 days. Travel to University of Washington Hospital
#3 Receive two unmatched, unrelated units of Cord Blood. Both have 4 of 6 HLA markers but they are mismatched on different markers.
Wait, receive many many transfusions, receive antibiotics, develop mouth sores, use a morphine pump to manage the pain, receive liquid nutrition.
Wait, wait and see which unit wins the battle to be your bone marrow. Wait and see how many cells realize they have been re-homed and don't want to stay so they start to attack the new strange body. Wait and see if they learn to be happy in their new home (Graft vs. Host Disease). See if they learn to be helpful and start to play nice and help the new host to be healthy.
Transplant by the numbers:
10% of cord blood refuses to work at all
60 to 70 double cord blood transplants have been done at the Hutch over the last 7 years.
75% of Hosts are attacked by their Graft
30 days from Transplant to En-Graftment
0 % chance to survive without transplant
40% chance to survive with it.
Since she always seems to have the rare side effects, I am going to grasp on to the fact that survival is rare.
2 comments:
You must be incredibly afraid, just numb with fear, I cannot imagine what you are enduring emotionally. At some point I hope you can turn it over to your higher power, that spirit-on-your-shoulder who watches over you and MEB, and ask for the best possible outcome. When Amy was a child and had just lost her father to drugs and divorce, her new golden lab puppy was struck with that awful gastrointestinal disease that dogs get and spent a week at the vet's. He declined steadily despite vigorous efforts to save him, and finally I was told he would be gone by morning. I dreaded sharing this additional loss with Amy, the dog was a gift from her now absent father, and I knew it would put another hole in her heart. At bedtime I gave her the bad news. Like any child, she expected me to be able to do something to fix the situation. She wanted a miracle. To me the miracle was going to involve coming up with the money to pay for this little critter's treatment so I could bring him home and bury him in the back yard. My emotional battery was pretty drained. But when we look into our child's eyes and see the love and need and the trust they have in us (and your child is trusting you with her life, not the life of some little puppy she has only known for a few weeks), we somehow find the strength to summon an answer, a response to meet that need. On this occasion, I remembered Grandma Lanham calling the Mormon church ladies to pray over Uncle Logan when he was around two and very ill. in the hospital at Salt Lake City. Grandma was raised Mormon but had not attended church for many years (probably since marrying Grandpa). The church ladies came to Logan's room, formed a prayer circle around his little bed, and spent the night intoning their mantras of health and well-being. Logan survived, obviously, and with this vague family anecdote in mind, I suggested to Amy that we perform a similar ritual for the health of her puppy. I'm sure I explained to her the no-guarantees part, but we spent the next 30 minutes or so silently mouthing some mutually agreed words over a picture of Champ and Amy when he was newly arrived and not ill. Amy knew we were not religious people, but I shared my belief that two people thinking (or saying) the same thought, making a common request of the universe, increase the power of that request exponentially. Please understand that I am not equating MEB's illness to parvo, nor the value of her life to that of a golden lab puppy. It is just that I do not have much experience with asking for divine intervention, let alone with miracles, but I am sharing what little I have. I am alone here, but my heart is asking for MEB's life to be spared and for the return of her good health. I am confident she will do good things with her life if she is given the chance to do so, and I cannot think of a single thing more important for the universe to be attending to RIGHT NOW. Please remember that my heart is with you, and my thoughts are with Mary Elizabeth through the return of her good health.
I, too, don't like to compare what you and MEB are going through to a personal experience with a pet. But when I was a kid growing up in Scottsdale, my cat Mittens was diagnosed with a type of feline cancer. I remember the vet showing us her XRays, and the way her internal organs had sort of been pushed to the perimeter of her belly by the tumor. The vet told us the bad news - that she didn't have but months to live - but offered a sliver of hope, something to the effect of "As long as she eats, she'll live." Didn't look like there was much room in there for eating, however. I was devastated - my first cat, and she was only five or so years old at the time of diagnosis. Anyway, I'll be damned if Mitty didn't live for years after that. We're not even sure how she passed - she got out one night in a rural area north of Phoenix and didn't come back the next morning. For all we know, another family took her in and she lived out her natural life span. Anyway, the point is, doctors don't always have all the answers. And it's in their interest to temper your expectations with heart-stopping statistics and worst-case scenarios. You know this. Don't let it get to you. Hold positive thoughts for Mary Elizabeth, focus on the things you can control and tackle them one at a time. Meanwhile, we're all concentrating on MEB's recovery and good health and keeping you in our thoughts.
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