One year ago today, Beth had her stem cell transplant

On December 14, 2011, my wife, half-dead from a fight with leukemia, “intensive chemotherapy” and full-body radiation, received a new infusion of adult stem cells from a young female donor in Europe. She became radically sick – somehow she got hold of a MRSA infection in her blood; later she had other viral infections that nearly cost her life. She spent the better part of three months in the hospital. You can read more about this struggle in the pages below.

She is still weak, and doesn’t have the energy to do much at all. Her immune system perceives her body as “foreign”, and so she is still taking some anti-rejection medications, which keep the immune system suppressed. So she’s still susceptible to pneumonia and other infections. She is looking forward with great anticipation to celebrating Christmas with her family. In another few months, they’ll start to give her the full cycle of baby vaccinations.

In a series of “Chimerism” tests which measure the level of the donor’s DNA vs her own DNA in her blood cells, she has consistently been “100% donor in all three cell lines”. That indicates no sign that the leukemia is coming back. The longer she shows such results, the closer she comes to being declared “cured” (a happy event which happens after two years).

The best news of all is that, over the last year, she has come to a new understanding of how the Lord Jesus Christ saves us in spite of anything else we might do to help or hurt that process, and is becoming deeply engaged in the life of our church.

Again, I’d like to thank all of you who helped us through this very demanding time with your prayers and your support.

An Open Letter to Robin Roberts on her MDS diagnosis

A Guest Post by Bethany Bugay

People are sending me emails about Robin Roberts from ABC’s Good Morning America Show. And I wanted to respond directly.

 

Dear Robin:

I read about your diagnosis of MDS. “MDS” (“myelodysplastic syndromes”) is a very broad category, and it’s probably a preliminary diagnosis. Thanks to genetic studies over the last 10 years, doctors can define which type of pre-leukemia you have, very precisely. They can and will come up with a more precise diagnosis.

Along with the precise definition of the disease, there are a number of new drugs which can very precisely address the specific genetic malady that you are dealing with. These drugs are better than plain old chemotherapy, but they’ll also continue to break down your body. Because this affects your blood, you may feel fatigued and lethargic. You may not be able to control your own body. Your immune system will become compromised, and you’ll become susceptible to infections, of the skin, intestines, and other things.

All of this is before they begin the “conditioning” phase, of radiation and chemotherapy.

You have a very good chance of beating this disease. There is a “cure,” in a procedure they call a bone marrow transplant, or a stem cell transplant. But it won’t be an easier path than the one you tracked with your breast cancer treatment, I’m sure.

You are already ahead of the game, because your sister is already able to be a donor. For me, the donor selection process was very long and complicated, because the doctors had to search for a “matched unrelated donor” (“MUD”).

It is all very scary even if you know that the doctors are prepared, (very prepared) for anything that comes along.

You are a very brave and strong woman. For you, this is round two of a battle with a type of cancer. You are more aware than most others what you’ll have to go through again because of your battle with breast cancer.

You said you plan to continue working. Fear of dying can be horrific. In some ways, it’s true, that work can distract you from your troubles. But the old saying is also true: nobody fighting cancer wishes that they had spent more time at the office.

You also said, “I will miss a chunk of time.” I expect that you might also lose a piece of your identity. You are a go getter, but you may not ultimately have total control of her body. No matter that you have had cancer before. To replay a hardship will maybe be harder because the expectations will differ. It may be depressing, and more emotional.

The “transplant” itself is uneventful. But when your new stem cells drain into your system, that’s when the true war to survive begins. Your body can feel completely debilitated. The process to build up body systems feels like coming back from the dead.  But you are going to do it again.

We pray for your strength to exceed what you had before, and for you to never, ever give up. Once the main battle is over, life is sweet again. You will come out of the dark, and you will even enjoy things that bothered you before, like standing in long lines at Wal-Mart, or even driving in heavy traffic again.

We pray for peace for you, and help for one going into a long darkness.

Bethany Bugay

Today is the day

Today is the day we’ve been waiting for. It’s the day of our “bone marrow transplant” (or “stem cell transplant”). It’s “day zero”.

We talked with the transplant coordinator yesterday. The donor gave “plenty” of stem cells in one day, and everything else went fine. The donor “made lots of cells” – It’s “just what we wanted”. So as I write this, they should be on an international flight – the “bag” that the cells come in is a very small one.

If you think of a one-pint transfusion, which might take a couple of hours, the new stem cells should take about five minutes to transfuse into her. The entire thing is anticlimactic, compared with all the other things that have been going on. The “transplant” should occur some time after 7:00 pm tonight.

What’s the greatest danger? (Part 2)

“Transplant is the only cure”
Once the decision has been made to go with the bone marrow transplant or stem cell transplant, an entirely different set of dangers arises from those faced because of the leukemia. In principle, the existing bone marrow is destroyed, and so the leukemia is destroyed. There is a significant possibility that it will return, but that danger is down the road.

The goal of this transplant is to completely eradicate her old, damaged bone marrow, and to replace it with new healthy and growing marrow that is capable of producing untainted blood cells. There is a great deal of danger in this process. Sometimes it seems to me that this is a case of “the cure is worse than the disease,” except the disease, CMML leukemia, is very bad indeed.

To eliminate the old bone marrow, Mom is going to be put through a regimen of “intense chemotherapy” (and note that the regular old kind of chemotherapy is bad enough for most people), with chemotherapy drugs with names like Fludarabine, Busulfan, and Thymoglobulin. These are still so far down the road that I haven’t yet looked them up. Then there are two day’s exposure to “total body irradiation”.

All of this will occur over a period of 6-8 days prior to the actual “transplant” (which in Mom’s case is then an infusion or a “graft” of stem cells from a non-related donor). In this process, not only is her bone marrow destroyed, but her immune system is destroyed.

For the first 30 days or so after the transplant, there is a danger that the graft will not “engraft”, that is, it will completely reject her system, but that risk is controlled with drugs, and it’s minimal. The larger possibility is that, with her depleted immune system, she will suffer from an infection. It can be bacterial, or viral, or fungal; she will likely develop “mouth sores”, she won’t be able to eat, and she’ll experience nausea, vomiting, and diarrhea. There are dangers of liver and kidney damage, and also pneumonia, which can be a killer.

There are drugs and antibiotics to deal with these. But still, the first 30 days is only the beginning.

When the “graft” becomes “engrafted,” there is a whole new set of dangers. Mom will have no immune system, and in essence, the “graft” will be in charge. The “graft” will have its own immunities, and they will have their way with her. There is a danger that they will reject her, in large and small ways. This is called graft vs host disease (GVH).

True, some of this GVH effect will do a clean-up job on any leftover bone marrow or leukemia from the old regime. In fact, “graft vs host” is what provides some of the magic of this transplant process. It’s often the final nail in the coffin of the leukemia.

Unfortunately, it’s also a killer in its own right. There are two phases: “acute”, while the actual “graft” is still moving around in there, and also “chronic”, beginning at approximately 100 days after the transplant, when the “son of graft” cells are taking over.

In all, the GVH period can last up to a full year or more. Symptoms may be as mild as a skin rash, but GVH can also affect major organs, and I have a friend whose wife died from GVH complications some two years down the road.

The good news is that, if Mom makes it down the road that far, there is an excellent, excellent chance that she will have beaten the leukemia and can look forward to a normal life span. There may be some lingering GVH symptoms – we’ve encountered a couple of people who can’t make tears.

But that’s a relatively minor thing to live with, compared to leukemia.