Ok - Whew!! The technology is smarter than me....no surprise......
Here is the post from yesterday:
A busy few days - more info, less progress.
The girls have been taking advantage of my distraction by not doing their piano, flute, etc, without me hassling them to death, and with outright disobedience in increasing brazeness. So today they pushed a little farther, and we are now in boot camp mode. I understand that they are also upset with what is happening, but I've got to draw the line on sass and defiance. Mommie Dearest made an appearance today.......... Trying to find the right balance between understanding and discipline.
So...........Ryan and I drove to Boston on Thursday. Stopped at the Norman Rockwell Museum on the way, and still got to Dana Farber an hour and a half early. Or so we thought. It turns out I read the e-mail wrong and we had missed our appointment on TUESDAY at 4 pm. Oops. I was surprised nobody called, but I'm beginning to realize that plans are made to be changed in this game. I suspect that lots of out-patients who have appointments end up missing them for transfusions (in our case - we would have missed Tuesday for a transfusion even if I'd had the date right), admissions, or changes in chemo.
They graciously re-scheduled us for Friday morning at 8:30. We looked at our options of driving home through Boston rush hour traffic only to get up in the wee hours for a return trip, and decided to spend the night. After a relaxing supper in a wonderful Indian resaurant in Boston, we bought some tooth brushes & deoderant and checked in for an evening of reading and a good night's sleep in comfortable beds.
The Stem Cell Transplant physician was very informative. Ryan is "pretty common" in his HLA typing (we still think he's special, tho). If a sibling match is not available, they should have no trouglbe finding a match through a registry. A family match is always better than a non-family match that looks the same on paper. And a sibling of the same gender is a better match. Each sibling has a 1 in 4 chance of being a match. With 4 siblings, Ryan has a 63% chance of finding a sibling match. (He did a computer calculation - one of the probability calculations that Jeff Yeager can probably do in his sleep, but I could never reason out!!).
So the order of preference (if they match) would be:
1) Sean - his stem cells won't reject Ryan's cells because of the Y (male) chromosome
2) either Meghan or Shannon - they are less desirable than Sean because their stem cells only have X ( female) chromosomes and could recognize Ryan's cells with Y chromosomes are "foreign" and attack them
3) Missy - because she has 2 male sons, there is a small possibility that some of their blood cells may have leaked into her circulation during pregnancies, sensitizing her immune system to the Y chormosome, with a higher risk of her stem cells attacking Ryan's cells with their Y chromosomes. But she's still better than a non-genetic match.
In young adults with ALL, the benefits of a stem cell transplant significantly outweight the risks. The biggest risks of the transplant are infection - obvious - and graft versus host (GVH) reaction.
If someone receives a kdney or heart transplant, there is a risk that their immune system will reject the organ - a "host versus graft" reaction. In the case of stem cell transplantation, all of the immunity comes from the donor - or the "graft". And what it rejects is any or all parts of the "host" - Ryan. The good part is that GVH will help to rid his body of malignant lymphocytes. The bad part is that it could also reject Ryan.
Ideally, the recipient should be in remission and have had a prolonged course of chemo including CNS (central nervous system) chemo. Therein lies our current challenge. The chemo has knocked down much of the blood cell production. The platelets and total WBCs were WAY down. But of the WBCs that are still present, most are lymphocytes - the cancer cells - a reverse of the normal balace where PMNs or neutrophils outnumber the lymphocytes. The question is whether they will be able to get Ryan into remission.
I asked the transplant doctor that question point blank - what happens if we can't get him into remission? The answer is that we proceed with chemo - especially the CNS chemo - as recommended by the leukemia specialists, and they will consult with the transplant physicians and determine when we've reached maximum benefit with chemo and it is time to proceed with transplant.
I can't shake the feeling I've had from the start of this (not scientifically based - just feeling it in my bones - call it inspiration or maternal intuition), that we would be facing transplant in late summer/early fall. Ryan's bone marrow biopsy will be on Tuesday, July 3rd, and we follow up with Dr. Zackon on Friday, July 6th. Then we'll know what the next step is.
The siblings are doing their HLA testing cheek swabs and sending them in. I looked into have Sean's sent FedEx from Albanina.........but it turns out that it has to be labeled a biological specimen, and after it clears customs, it has to be cleared by the FDA which can take up to a week sometimes - and will cost $86.00. Come on - there's more "biological specimen" on every toothbrush in every suitcase that comes into the country!!!!
Luckily, Shauna will be flying back in 2 weeks to spend a month with her family in the US. So she can put it in her suitcase and bring it back to the States then FedEx it to Boston. (coincidence?)
We also met with a nurse from the transplant team who gave us a packet to read - a 3 ring binder with TONS of information. I've barely started it. Both she and the transplant physician said they weren't interested in getting a "remission" in their patients. They are going for CURE. Sounds good to me.
The tough part will be about 3-4 weeks of hospitalization in Boston for the transplant itself, then at least a month living in Boston after the transplant where we are only minutes away from the experts so they can jump on anything that comes up.
Ryan was exhausted both physically and emotionally by the time we hit the road. And he still had to get his blood work done and see Dr. Dunn in his Latham office on Friday afternoon. Long drive home.
After we got back from Boston, I took the girls to Great Escape. We had purchased tickets at a school fund-raiser months ago that expire on June 30th. I figured that the 30th would be swarming with people starting their 4th of July vacations, so I bit the bullet and went. 95 degrees. Insane, right? I kept hoping that one of the girls would do something that would require me as a responsible parent to turn around and head home. No such luck.
It turned out to be a wonderful afternoon. No crowds. A nice breeze. Getting soaked on a water ride and cooled by evaporation as I dried off. We had a wonderful time. So much so that I decided to upgrade to a season pass - hoping we can find a few occasions to sneak away and do it again before the summer ends.
Tender mercies.......
Tomorrow is the first Sunday of the month. In our church, we fast on the first Sunday of each month - focusing on praying for things we might need and for others in need (we fast for 24 hours starting after supper on Saturday and donate the equivalent of the cost of 2 meals or more to a fund used to help those in need). We invite all who are so inclined to join us in a fast and to include Ryan's need for the best possible stem cell donor and a successful transplant to your fast prayers. I know that there is only one power who can save Ryan - and all of us. I know that our Saviour Jesus Christ and our Heavenly Father do love us all, do hear and answer our prayers, and that God is still a God of miracles.
---Barb
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