The Ordeal Continues - Day 10

Blasts were at 1% today. YAY!!!!

Throat still worse. Steven is reduced to pudding and ice cream for sustenance. Heart rate is running quite high. But kidney numbers are staying not too bad, which is very good. He's picked up some sort of respiratory infection. They took samples to do a culture.

I called the donor search coordinator to see if they had any word yet on availability of the chosen donor. Nothing definite yet, but from e-mails she received, she knows they are working on it. Slow as molasses that National BMT Donor Bank. But, they're the only game in town. Patience, patience, patience.

Donor News

A little bit of good news for a change. Steve got a call a few days ago from the donor search coordinator. He has TWO acceptable matches, unfortunately not perfect, but possible. Both are better than the one who backed out. The one from Europe is a woman, and is off on the C. The US donor, that we knew was off on the A to begin with, lined up on everything else and is a man, i.e. more stem cells. He is number one choice right now. He came in quickly when they requested a draw, which is nice. It took the European donor almost six weeks to schedule the draw. The identity and location of the donors are kept very secret, but I hope that one day we will be able to express our boundless gratitude in person.

After the first round of possible donors didn't turn up anything, the transplant center began requesting draws from donors that were already known to be one antigen off in hopes that the unknown factors would line up after that. They are supposed to have five more "one off" draws coming in this week for further testing, but needless to say we are much encouraged after weeks and weeks with nothing when we started off with nine possibles. Now, all the potential donors still have to pass extensive physicals, but at least there are more than one. I don't think we can find a better match, but will hopefully have some back-ups in case of problems as we had with the last ones.

Now we just have to build Steven up as much as possible, mentally and physically, until he goes in for the next round. He is getting platelets every other day now, and needing whole blood once or twice a week. He's dizzy and lies down most of the time, plenty of problems but no fever and not sick. Wish we could keep him in a bubble. The doctors are adjusting his multiple blood pressure meds to try to deal with the dizziness, but so far it hasn't worked. Driving him to the hospital on Sunday, I looked over at him and saw blood all over his teeth, very Nosferatu or Draculesque if you will. His gums were bleeding and he didn't have enough platelets to stop it.

Because of the time necessary to schedule the donor, they don't think the transplant can happen before mid-April at the earliest. Steve will go back in hospital a week to ten days beforehand to irradicate his system with chemo and radiation to await the transplant. Because of the mismatch in the bone marrow donor, Steven will have to be on immuno suppressants for a longer time, my understanding is six months to over a year. Which will make him very tired and susceptible to everything. He will have to really live in a bubble then. But they are necessary to try to deal with rejection problems. Unlike an organ transplant, where if the match is off only the organ dies, since they are replacing Steven's basic system, they need to keep the new system from rejecting him.

Steve will have a new blood type and new DNA, at least for blood tests. All the immunities he has built up over the years will be wiped out and he will have to take childhood vaccinations all over again.

Yesterday, they did another bone marrow biopsy to see the status of the blast cells. They should tell us the results tomorrow while tanking Steve up with the necessary blood products.

Please send jokes, make Steve laugh.

Home Sweet Home, sort of

Thought you might like to see a photo of Steve at the hospital with his Siamese Twin, connected at the neck!

After over three months in the hospital, last Saturday Steve's doctors surprised him (and us) by allowing him some time out of the hospital for a sanity break while waiting for a donor. It was quite a scramble to get ready for him on spur of the minute notice, but the troops were called in and we managed. Because Lisa and the children were sick, Steve went home to his mother's. Everything he might come in contact with had to be cleaned with antiseptics. Lots of restrictions on foods. Nothing from buffets, sliced meat and cheese from packages rather than the good stuff from the deli, juices bottled not fresh.

Basically, Steve's blood counts were starting to come back after the last round of chemo. Since no marrow donor is ready, the doctor decided he needed a break to build up his strength before whatever the next round of treatment brings. They put him on another "biologic" chemo which targets specific cells to try to keep the leukemia in check until they can hit him again hard pre-transplant. Evidently the leukemia becomes resistant to the chemo after multiple rounds so they want to save the big guns for when they need them most.

Steve has to report back to the Transplant Center every other day for blood checks and transfusions. His first visit back showed his platelets were extremely low, so they tanked him up a bit. Yesterday's visit showed they were a bit better although still low and since no matched platelets were available, they decided to wait until Friday for more platelets and probably whole blood, too. Depending on his Friday counts, they will decide if he needs to come back Sunday or can actually have the week-end "off". It is a day by day process.

His task right now is to recuperate as much as possible and gain strength for the next round. He needs to force down food even though it does not taste pleasant and push himself a bit more each day to gain back muscle tone. He was very, very tired and weak when he first arrived. Now he has put on a couple of pounds and has a bit more endurance each day. He wears a mask when he goes out in public, exciting places like the hospital and the pharmacy. We stopped by his home on the way back to Fort Worth from the hospital, surprising his daughter with a brief masked visit. The look of surprise and then joy on her face before she threw herself into his arms was good medicine for Steve.

Now to the serious stuff, the donor which the doctors had chosen (a mismatch on the C) was notified. After having given the initial blood draw, for some reason they decided to be unavailable until 2011. This was a tough blow. I wonder if this person did not realize before going in for that first blood sample that they didn't want to give now? It is hard to fathom a refusal to donate after being notified. There is one remaining international "possible" who sent in the first blood draw this week. We are waiting to hear the results of further tests on that one. In reserve, there is that one unit of cord blood which is a single factor mismatch. The problem of the smaller volumne would result in a much longer period to rebuild Steve's immune system, requiring regular blood and platelet transfusions over the recuperation period. Not perfect, but possible.

There is always a chance that a new donor will show up in the marrow data bases. We are trying to encourage everyone to sign up to be a marrow donor NOW. Time is not on our side. To organize marrow donor drives through work, church and schools. Information is on the website.

And finally, a huge and heartfelt thank you to everyone who has helped Steve and his family during this difficult time. Donations to help with the mounting bills, grocery cards, prepared meals, website building, visits, blood donations and moving furniture and help at the house for Lisa. It all means so much and Steve is touched by how many people care and want to help. His spirits are good.

Details on Steve's donor search

For those of you interested, this is how Steve's marrow donor search proceeded. In querying the national and international marrow data bases, the search team found:

US: 6 possibles...4 of those were unavailable, 2 gave, no perfect matches

International: 3 possibles...1 of those unavailable, 1 tested but was a mismatch, 1 who will give a sample next week, so this one we still don't know about.

Cord Blood: No matches

Once a potential match is made, the donor will be given a thorough physical, take growth hormone shots for five days, then give a blood draw similar to a platelet donation to harvest the maximum number of stem cells.

So the team is waiting to see the details on this last international donor who showed up after a month of hearing nothing. This will take another two weeks. And thinking that if necessary, they will conduct the transplant using one of the US donors who was a complete mismatch on the C antigen. This will mean Steven has to take immuno suppressants for a much longer period to counter rejection since the new system (new DNA, new blood type, new allergies or lack of same) rejects the host. Before destroying Steven's own system for the transplant, they need to have a donor ready, with a back-up choice just in case.

All of this would suggest, that if you ever need a marrow transplant, it is best if you come from a very large family living for centuries in a small village that is very inbred!

Steven is getting some color back in his face and is much improved from last week's bout with influenza when he was truly miserable. Still no energy, but much cheered by the idea that he might have a bit of sanity leave at home before the actual transplant. And bummed that he needs reading glasses.

Steve's Mother