Our meeting with the Bone Marrow Specialist was anti-climatic. We had all done so much reading on the subject we knew the procedure and the risks and were given very little new information. The doctor did confirm that if Bill wants any quality of life, he needs to proceed with a transplant.
Answers to your questions.
Is Stem Cell Replacement and Bone Marrow Transplant the same thing?
Basicly, yes. A Knoxville friend, Shannon Eaker, who has his doctorate in stem cell research, may correct me. One is from the bone marrow, and the other is from the umbilical cord. But they both involve chromosomes and what Bill would be given. With the quanity of marrow needed, stem cells would not be enough.
Can anyone be tested?
Yes, but his best match to avoid Graft vs Host Disease (GVHD) is a sibling. Our insurance will pay for a sibling test only. This is a blood test and packets are being sent this week to Bill’s two sisters. Anyone can add their name to the Bone Marrow Bank list. One would go to their local blood bank to be tested and their type recorded. It is best if one is under 40 years old.
What is a “match”?
To make this as simple as possible (the only way I understand it), we all have a HLA type, or human leukocyte antigen. This tissue type consists of proteins on the surface of the cells and the better the match on antigens, the less chance for rejection. Our HLA results are a combination of our mother and father’s chromosomes. We want as close a match as possible so his body doesn’t reject the new bone marrow, or visa versa (GVHD). But, on the other hand. We want a little bit of a rejection so his new white cells recognize the mutated white cells as “foreign” and destroy them. (Something his white cells are not capable of doing right now.)
What if his sisters aren’t a match?
All three hospitals we are considering have access to the National Bone Marrow Bank and the International Bone Marrow Bank. Fortunately, Bill is of Western European heritage (German/Italian). It is the easiest group to find a match. This is because for centuries, these cultures have been intermarrying. The doctor said Bill picked his parents well.
Send me your questions and I will do my best to answer them. Or, I will ask the doctor.
About Bill. His blood count numbers are dropping today, as they should. He is tired, but feels pretty good. Home Health Care came this morning to draw blood for a CBC reading and will come back if he needs platelets or red cells. He received his Nulasta shot on Monday and it will take 2 weeks for his blood to return to normal.
Jon and Laura are still here. Jon and Laura finished the outside work to get us ready for the winter season. Everything is put away, and leaves have been raked again. Laura has been cooking dinner and helping around the house. It has been wonderful having them here.
Thanks for your prayers. We will stay in touch.
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13 comments:
Thanks for all the information. Shannon will see the blog tonight. You guys are going to be as much a scholar as Shannon is on stem cell replacement. We will give you your diploma next time we are together. Love the picture of Bill with Andrew. What a doll (both of them, of course). I know Jon and Laura were of great help. Yard work doesn't seem as important when you have your other stuff to consider. Hope your cold weather stays away for awhile. Mike is back in the hospital. More fluid retention, and now considering a pacemaker. I will call Brenda later today and keep you informed.
I am keeping Noah, so better go hug him again. Love you guys.
Becky
Mom -
With all your finely honed research skills, I think I have a job for you on our Investigative reporting team.
Everybody pray for healthy blood counts for Thanksgiving so Dad's well enough to see Maggie!
Love, Janine
Hi Hubers,
I pray for God to guide the doctors in making all the right decisions for Bill the next few days. Nancy, you are a trooper to be able to keep up with all the modern medical information. I know you have a lot on your plate right now and I continue to pray for good health and strong support for the rest of the family. Again, those grandchildren have a way of lifting our spirits when no one can. So glad Jon and Laura are able to be spending time with you.
Love to all,
Mary Jo
Hey Bill,
As one of your potential donors, and since I see it is better if I am 40 or under, I would be glad to accomodate! If you want me to be 40, who am I to dispute it?!? Keep your "much younger" sister, and your "older" one posted!
Love, prayers, and good health!
Gail
From the other potential donor, you know the "older" one. I have heard that 60 is the new 40.
By the way Bill on the phone you said Gail is 52 and by my calculations she is 54. But who is to quibble about age.
I am glad that Jon and Laura have been there to help you this week. God gives us these gifts for a reason even if they eat us out of house and home.
And for the teacher in me- Nancy thanks for doing your homework and keeping us informed.
Praying often.
Love,
Paula
Thank you for keeping us so well informed! You have gotten a really good understand of an overwhelming amount of information. Take care, enjoy your extra time with Jon and Laura! Once again, thank goodness for family!
- Janet and John
Your knowledge on the subject is amazing. If I ever need investigating you will be the first one I think of.
What are the blood counts? That is awesome home health can transfuse at home. PA and WV aren't so lucky to allow transfusions at home.
Our prayers will be said a little more this week and will pray that we will find the perfect donor. Keep your spirits high as well as the blood counts.
Much Love and Prayer,
E.B. & Brian
Hi, we have been out of town for a few days, up in east Tenn. I am so pleased that you had a good weekend with with Kari, seeing Andrew was a boost I know. How sweet of Jon and Laura to help so. Wow two trans plants seem overwhelming but if anyone can manage, its Bill. I guess his sisters will be tested soon. I hope this round of Chemo goes well.
As always you are in our prayers..I would love to help somehow, if you ever come up with anything. The Chalet is yours for the asking.
Love Pat
Bill - Carl Peterson here. You remain in my thoughts and prayers. I recently formulated a new inequality:
BH > RT + DD + JS + JB. Your wise counsel is sorely missed as we draw the synfuel business to a close. When is a good time to call to catch up with you? I've been reluctant to do so without your go ahead. Please e-mail me back with a convenient time: carl.peterson@aigfpc.com. In the meantime, please take care!
Bill, you are looking good with Andrew buddy. Andrew has more hair than you did before your illness. Keep up the good treatment work and stay with the program. Get well soon. BTW - Mike Fields is having a pace maker put in today. What the hell is happening to all of us. I know - we need some younger sisters and brothers which in turn would make us younger and we would not necessarily be having all of these problems.
David Eaker
Hi Hubers,
Bone Marrow transplant is the best we have right now. Umbilical cord blood (UCB) is just not there yet. If you need it, my Marrow Donor # is 0266-2940-2.
We are praying for you!!!
Shannon, Shawni and Noah
Good to read the comments, hope to contact Paula or Gail this week. I volunteer auromatically for BMarrow donor. I am old and cranky and still family!! Keep on keepin on
I'm Italian, I'd be happy to get tested to see if I am a good match for Bill. I'm 65 but in good health. I'd be honored to donate if it would benefit Bill.
God bless your family,
Vic Maroni
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