The calm before the storm

I mentioned down below that we have a total of four potential donor matches, who connect with Bethany on 10 of 10 DNA markers.

This is an odd time for us. I guess because this “bone marrow transplant” is such an odd procedure. Lots of folks with cancers go into remission-and-out. They get treatment, get well, and are done with it. (Or they don’t. But that’s still part of the same type of process).

But for us, this is only “the calm before the storm”. I guess that’s the way to describe it. Even though it looks like things are getting better, and they are, it’s all part of the plan. Beth is being “built up” so that she’s in the best possible condition for the upcoming “conditioning” phase – the stronger she is going into the “intensive chemotherapy” and “full body irradiation”, the better she can be coming out of it.

For now, we just wait.

Bone Marrow Transplant

According to our doctor: “this is the only curative option”
In spite of all that has happened, we are still at the beginning of this process. What has happened up to this point is merely preparative. With this disease, all roads lead to the bone marrow transplant.

Standard chemotherapy won’t help her. Bethany’s bone marrow is damaged, so even if chemotherapies could be given that would put her into “complete remission,” that is, to eliminate all the cancerous effects from her blood, it wouldn’t last, because her bone marrow is damaged, and her damaged bone marrow would continue to replicate the leukemia process. My understanding is that these treatments work for a while, but they will eventually fail.

So, as Dr. Rossetti reminds us, “The only curative option remains allogeneic (non-related donor) transplantation.” And as a part of this process, there are still several milestones that we need to look forward to.

Finding a donor
Even though we have a number of potential donor matches, we still haven’t found that ideal person. They are looking for someone who can match on 10/10 DNA markers. So far, there are six potential “10/10” matches, but none of these is ideal. Most, for example, are older females, who have had children; antigens developed during pregnancies that can contribute to complications during the process that follows.

The dangers, as I understand it, are not that the cancer is less cured. The danger is that the graft vs. host complications will be more severe. So the donor search process is an attempt to minimize that part of it.

The “Bone Marrow Transplant” (BMT)
This is the biggie. The bone marrow transplant is a “transplant” in the same sense of a kidney or heart transplant. Something old is removed, and something totally new is put in. However, unlike a traditional transplant, which is usually a one-time surgical procedure, this one is a longer term process. Much longer.

To get out the old, they can’t just open her up and take out the bone marrow. They have to kill it, and they’ll do it with “intensive chemotherapy” and full body radiation. This process will last a little over a week, and if it sounds harsh, it is.

Simultaneously, the selected donor will be given Neupogen injections for 5-6 days, to prompt his or her stem cells to move from the bone marrow to the blood; on day five of the Neupogen injections, they’ll be hooked up to a dialysis-type of unit; blood will flow out one arm, the stem cells will be harvested by a machine, and then the blood will flow back into the other arm.

When enough stem cells are collected, the bag of stem cells will be flown into Pittsburgh, where Bethany will have already been prepared by the process described above. The implantation of the cells process itself is simple. Some of the blogs I’ve read have even described it as a bit of a let-down, just something like another blood transfusion. But the results are spectacularly different.

“Engraftment”: First 30 Days
Many things can go wrong during this first phase. If we were to go to UPMC, this would be an inpatient process, lasting four to six weeks. At West Penn, they say that patients respond better by being home. (Dani wouldn’t be permitted into the hospital; they’re pretty firm about that.) So Beth will be permitted to go home every evening, and then will need to return to the medical short stay unit, every day for 30 days.

(Note to Highmark: Our understanding is that we will be required to pay the $30.00 co-pay each and every day we show up there. Is there some way that you can streamline this clunky procedure? West Penn is already saving you oodles of cash by making this an outpatient procedure; the least you can do is streamline your paperwork to make it easier for a patient who’s near death.)

During this time, the chemo is still raging; Beth’s hair will fall out, she’ll experience nausea, vomiting and diarrhea, won’t be able to eat. Her immune system will have been wiped out. She’ll be ultra-sensitive to infections, and it’s very likely she’ll need to be admitted to treat infections anyway.

The expectation is that the new stem cells will go to where they’re needed most, that is, into the now-dead bone marrow, and set up shop. This is called engraftment. As part of the daily checking, is checking for signs that this is happening. There is about a 5% chance that engraftment will fail.

Acute “Graft vs. Host Disease” (GVHD): 30 days-100 Days
During this time, Beth’s immune system will be severely depleted, but the expectation is that the new stem cells will have their own immunity. To some degree, this is very desirable, because the new immune system can kill off any remaining cancer in the bone marrow.

But on the other hand, the new stem cells can, to one degree or another, begin to reject Beth’s own tissue. This is called Graft vs. Host Disease. Symptoms can range from simple skin rashes and mouth sores, to more complicated issues dealing with organs such as kidneys, liver, and lungs. Often, I am told, the symptoms from the anti-rejection drugs can be worse than the GvH symptoms themselves.

She will also be susceptible to infections during this time period, including pneumonia, which can be life-threatening.

Chronic GVHD: +100 days to One Year
After 100 days, the new stem cell engraftment will have begun producing its own new stem cells, and for some reason, a whole new round of “rejection” can occur. Too, some of them can be fatal. Marrow.org has prepared a brief presentation that walks through this phase of the process.

The ideal outcome
The ideal outcome, then is simply to get all through all of this. Most of the GvH symptoms will diminish over time. There is still some danger of relapse at this point. But from what Dr. Rossetti tells us, if you can get past the two-year mark, the chances of living out a normal life-span are excellent.

One survivor who I’ve been in contact with has told me about the “survivor dinners,” where “There are a lot of people who are many years past transplant and look great and do not have any ongoing issues”. That’s something we can look forward to.

Here, again, is the prognosis:

  • 30% cure;
  • 20% immediate complications;
  • 15% major longer-term complications;
  • 35% chance of relapse.

Please keep us in your prayers, and please, also, consider helping us out financially.