Beth’s donor has signed, and we now have a transplant schedule

I got a call yesterday afternoon from Renee, the transplant coordinator at West Penn. Beth’s donor has signed all the necessary paperwork, and a date of December 14 has been set for the transplant. That means, working backward from that date, the following schedule has been established:

December 5-7: Outpatient treatment at West Penn’s Medical Short Stay unit. Beth will be treated with a drug called Kepivance, the purpose of which is to prevent “mucositis” – mouth sores – one of the more severe side effects of the chemotherapy drugs that Beth will receive. This is an intravenous treatment.

December 8: Beth will be admitted to West Penn’s “T-7” floor – the Hematology/Oncology (or “hem/onc”) unit.

December 8-12: She’ll receive the “intensive” chemotherapy, also called “conditioning”. She’ll receive two or three intravenous drugs spread out over these five days:

Fludarabine: “It has been unofficially and casually referred to as “AIDS in a bottle” amongst healthcare professionals due to its significant immunosuppresive activity”.

Busulfan: “Currently, its main uses are in bone marrow transplantation, … where it is used as a conditioning drug. Busulfan can control tumor burden but cannot prevent transformation or correct cytogenic abnormalities”. To put this into perspective, the Vidaza that Beth was receiving had two functions: it had a cytotoxic effect – it killed things – but it was also supposed to enable her to make her own blood cells (a thing it never did).

Thymoglobulin: I don’t know if Beth is getting this one; it’s on the transplant sheet that Dr Rossetti gave to us, but Renee yesterday said Beth was getting two chemo drugs. Thymoglobulin “very substantially reduces immune competence in patients with normal immune systems”.

December 13-14: Total Body Irradiation (200 cGy).

The donor will undergo five or six days of Neupogen injections “to move stem cells from bone marrow to peripheral blood”. She will then undergo one or two days worth of “collection” – a four- to six-hour process by which blood will be withdrawn from one arm, will flow through a filtering device (similar to a dialysis machine) that will collect only stem cells, and the remaining blood will be re-infused into the other arm.

The stem cells will then be flown into Pittsburgh, where a (we hope) properly-“conditioned” Beth will be awaiting their arrival. The donor is a young female, and she is not from the United States. That’s all we may know about her at this time. I may have mentioned earlier, that we found three “10/10” matches. This is out of 10 million US-based donors, and an international database of seven million donors. For more information on this, see http://www.marrow.org.

It’s interesting to me that they call this procedure a “transplant” – but really, it’s like a slow motion transplant – a damaged organ (in this case, the bone marrow) is removed, slowly, and a new organ, in the form of stem cells, is “transplanted”, albeit slowly.

Home at last

… After a 12 hour day. We left 7:45, to arrive 8:30, to check in at 9:00. The blood draws — all those 21 vials of blood, actually went very quickly. The bone marrow biopsy, scheduled for 10:00 am, got started around noon.  Beth was back in the room, then we had to wait for the three units (a unit of platelets and two units of A+). All in all, a very long and uneventful day.

I counted 21

Beth does not yet have a “central line”, and she hasn’t wanted to get one, because when they do the transplant, they’ll have to put a new one in anyway.

So when Beth has blood taken, they have to use a vein in her arm. As a result of the twice-weekly blood draws, plus all the transfusions, not to mention the Vidaza shots and IVs, she is pretty bruised up.

So the nurse is now looking for an IV specialist, to find a good vein.

Bone Marrow Biopsy Today

Watch this space for details, although I suspect that, given that this is now Beth’s 4th one of these, there will not be very much exciting happening. We’re headed down to West Penn’s Medical Short Stay unit, which is essentially a floor full of outpatient single-day hospital rooms. She’ll have a blood test and we’ll get some lab results; the biopsy is at 10:00 am, and again, Beth will go under “conscious sedation” or what’s otherwise known as a “twilight” sedative. She slept through the last one – it became painful a day later as all the sedatives wore off. While she experienced a tremendous amount of pain at some of her earlier bone marrow biopsies, she came back from the last one with no complaints at all.

See also The Papacy’s Missing Link

One particular public school

The public school systems of this country are not thought well of in some circles. However, this Thanksgiving and Christmas, my daughter’s public school is going to play a major role in our lives.

Tomorrow, around 10:00 am, we’ve been told to expect a fully-cooked Thanksgiving dinner (enough to serve eight or more!) will be delivered to our home by my daughter’s teacher and her helpers.

And for Christmas, we received the following note:

We are very grateful for the love and attention that many, many people are pouring out on our family as we face these difficult times.

A few more things we learned yesterday

Now that a donor has been recruited, Dr. Rossetti thinks that we will be able to “have stem cells by mid December”. No dates are firm yet, but we should be able to have a firm schedule in place by the end of next week.

Beth’s blood counts continue to be critically low – her white blood cells yesterday fell below 1.0 (“.94”) for the first time since I’ve been watching the numbers. And as I noted, her hemoglobin was 7.2, and her platelets were only 18 (again, lowest I’ve seen them). So today, Tuesday, she’ll go to Jefferson Hospital for her (7th of 7) injections of Vidaza, for two or more units of blood, and also, for platelets.

Beth’s bone marrow is defective, and every stem cell she produces is defective, and so the goal over the next few weeks (including the “intensive chemotherapy” and radiation) will be to bring her “as close to zero bone marrow” as she can get. The Vidaza, while not enabling her to produce good blood cells as promised, has at least gotten her most of the way there already. And that’s a good thing. [Also a “God” thing, as I had written at first.] The reason you want all of it gone is to reduce the chances of relapse down the road. And in addition to the “intensive chemotherapy”, the full body irradiation “cuts relapse rates 20%”, according to Dr. Rossetti. Every little bit helps.

Once the new stem cells are transplanted, then Beth’s numbers should begin to go in the right direction. Her white cells should begin to recover within 2-3 weeks. Engraftment should occur on or before day 30. Hemoglobin production should start in about three months. Anti-rejection drugs will be administered between days 35 and 90 – more or less to either to control or enable some “graft-vs-host” (GVH) effect. To some degree, the GVH has a “mopping up” effect – the immunity of the new stem cells will target and destroy any remaining defective bone marrow, or any remaining defective stem cells.

Too much, to be sure, can cause problems. But this is what the donor search has been all about: matching on precisely the right DNA characteristics, to give just enough, but not too much, GVH.

Yesterday: The VA and Vidaza

Yesterday Beth and I spent much of the day down at the VA office in Oakland, before heading out to Dr. Jalil’s for a consultation and to begin her sixth cycle of Vidaza. We honestly didn’t know what to expect – it was her first “doctor’s visit” there. Her primary care physician is a young female doctor who has a great deal of respect for veterans, and she did a pretty thorough “history” on Beth. I appreciated her concern.

We also filed a claim for disability benefits through the VA. We heard from another individual who was standing in line that it can take up to a year simply to process the application. The actual VA benefits counselor we spoke with told us it would be six or seven months – within two months, we should receive acknowledgement that they have received it.

Beth also began her 6th Vidaza cycle. Dr. Jalil was generally encouraged by how she was doing. Note that her white blood cells were at their lowest point that I’ve seen them (1.1) – but also that her hemoglobin, which was raised into the nine-point-something range with four transfusions, actually increased a bit last week (to 9.5). That was a very rare “increase” in her hemoglobin level.

  11/1 11/3 11/10 11/14
White Cells (4.4)  1.48 1.51 1.31 1.1
Hemoglobin (12.5)  9.2 9.1 9.5 9.1
Platelets (145)  59 86 116 88

(Numbers in parentheses represent the minimum “normal” figure. For previous blood counts, see this chart.)

Finally, I’ve put up a new theological blog post, which I’ve entitled “The Roman Catholic Hermeneutic”.  When Catholics and Protestants approach a given topic in Scripture or in history, they approach it in different ways. And it’s this difference, often unspoken, that often renders the subsequent discussions so difficult, if not maddening. You’ll hear things like “You have your interpretation, I have mine”. But what are these “interpretations” based upon? I briefly cite a Protestant scholar and a number of Roman Catholic scholars, and some popes, on how Roman Catholics use the Scriptures. It’s eye opening.

A donor has been selected

We got a call today from the Transplant Coordinator, telling us that the donor has been selected. They actually select the third of the three donors we had been undergoing testing — the last one to come in. This is good news — when we saw Dr. Rossetti, he had liked that second one a lot. And he likes this one better.  This first choice is a young female, not from the U.S., same blood type as Bethany. She will be contacted with the news, and if she agrees to do it, she will be scheduled for a complete physical exam. She will also be given a list of tentative dates for the procedure; the earliest of these will be about three weeks after the physical exam.

The donor goes through a five-day regimen of injections to (a) increase her production of stem cells and (b) force the stem cells out of the marrow and into the bloodstream. On the day of the transplant, the donor will be hooked up to a machine like a dialysis machine: blood will flow out of one arm, through the machine, which will “harvest” the stem cells, and the remaining blood will be put back into the other arm. This is about a 6-8 hour process for the donor. The stem cells will be stored in a bag very much like a regular unit of blood. Since the donor is outside of the US, they will be put on an international flight to Pittsburgh, and transported to the hospital.

By that time, Beth, also, will have undergone an 8-day regimen of intensive chemotherapy and full body radiation. The intention, again, is to destroy all of her damaged bone marrow. The hope is that the new stem cells will “engraft”, or set up shop, within 30 days, and begin to form new bone marrow within Beth’s bones. About that point, Beth will begin to face “rejection” issues — “graft vs host”. Some of this effect is good — the immunity effect of the new “graft” will, it is hoped, destroy any remaining damaged bone marrow and leukemia cells. This is vital, in fact, in preventing relapse. The unfortunate side is that the “graft vs host” also can have side effects that can be very serious, and can even lead to death (i.e., pneumonia and other infections become a very real danger.). And this danger lasts about a year.

Needless to say, Beth is very apprehensive about this. But at least we are moving forward now.

We should be close now

I spoke with the Transplant Coordinator at West Penn yesterday, and the testing from all three donors is in now. All three of these match on 10 of 10 HLA (DNA) categories. All are three are female; two are younger, one is older (described as “under 50” still); two are international, one is domestic. Their blood type and age will be considered in the decision. Doctors should decide soon now. And it could be 3-6 weeks till Beth starts her conditioning regimen.

Another uneventful weekend

We had an uneventful weekend. Of course, my Facebook friends who pay attention here know that I fixed the toilet over the weekend. Those kinds of small household chores scare the daylights out of me.

Speaking of “fear”, I fully expect that we’ll hear from the doctor this week to say that they’ve selected a donor (from among the three 10/10 matches we’ve found) and there is a schedule for the transplant. Almost any way you put it, it looks now like we’ll be tied up with hospitals for Christmas. (Unless they decide to hold off the transplant until after Christmas, but I can’t see them doing that.) If they do select a donor this week, our 3-6 week “window” falls right in December.

Beth had a restful weekend. Going to church has become her big event for the week. Getting up and showering, then going to Sunday School and the worship service is a major effort. But she loves the church, she loves the people there, and she’s even made some good friends. But then she has to come home and take a long nap.

And, as far as my theological writings are concerned, this one is sure to be a winner: The theologia crucis and Luther’s critique of the analogical nature of theological language. At least the title is an exciting one 🙂