Jim and Tracy from the church just delivered a freezer-full of pre-cooked meals. I tried the Pasta with Pesto Cream and Chicken, and “Ohmigoshthat’sreallygood” is pretty much the universal response I got from the kids. We honestly can’t thank you all enough for all your help as we go through this.
We’ve received a lot of help over the last months, but no one has stepped up to help us and to be a part of our lives so much as our church has, City Reformed Presbyterian Church.
Their love and shared sacrifices have led to Bethany saying things like this:
All my life I went to Mass, trying to honor Christ, thinking that I could do some good for him. But I never, ever got what I’m getting from this church. It warms me from my toes to the top of my head. I hope we get to go really, really far with it.
On top of everything else that they’re doing, [and they’re doing A LOT, and they have asked me not to blab about it], the church has a meals ministry, and during the time when Beth is in the hospital, and for that month afterward when we’ll be making daily trips to West Penn’s Short Stay Unit, they’ve promised to deliver meals to our home. The way they’ll do this is to prepare frozen meals that we can simply microwave as we need them. Since we only have the freezer that’s part of our refrigerator, and since they intend to send a lot of food our way, which we couldn’t store, they brought in this freezer, to give us some place to keep the food that they’ll deliver.
I just received a copy of the City Reformed Membership Letter for this month, and I saw that my family and this blog are mentioned, concerning my wife’s illness. So I thought I’d take a few minutes to give a brief overview of my wife’s condition and the needs that Pastor Matt was speaking about.
In June of this year, my wife Bethany was admitted to the hospital with an extremely low hemoglobin level – it was 5.7, when a normal level is about 12-15 g/dL. She underwent extensive testing and a bone marrow biopsy – there are many things that cause this type of severe anemia, but the biopsy came back positive. It took a while to come up with a definitive diagnosis, but what came back was “chronic myelomonocytic leukemia” (CMML), a very rare form of the disease that shares both “myelodysplastic” and “myeloproliferative” (MDS/MPD) characteristics.
CMML, as a disease, is primarily something that older people get (median age is something like 74), usually as a result of a treatment from a prior cancer. Probably as a function of that, the prognosis is not for a long life (12-24 months).There is more information about CMML here for anyone who is interested.
Beth has so far received four “cycles” of a drug called Vidaza, which is part chemotherapy, and part therapeutic. It has the ability to “interfere with the leukemia process” and actually enable her body to return to somewhat normal blood levels. This hasn’t happened in Beth’s case, and she’s had to have numerous blood transfusions to bring her hemoglobin level back to tolerable levels. I have tagged entries about this under the tag Vampire Bride.
According to the medical information that’s available, “Bone marrow or stem cell transplantation appears to be the only current treatment that alters the natural history of CMML.” Interestingly, the brother of Dave Faith, an elder at City Reformed, went through this procedure several years ago and is doing fine.
Currently, my understanding is that the process of finding a donor is fairly far along, and there are four potential donors who are undergoing a final type of screening. (For anyone interested in this process, please visit http://www.marrow.org for more information). Once a donor is selected, we should begin the transplant process within the next six weeks or so.
I mentioned above that this is something that older people get. Beth was diagnosed at age 50 – she served in the Iraq War and was “in country” from April through September of 2003. A number of Iraq War veterans have come down with leukemia, and we believe that she was exposed to benzene, a known carcinogen, or other cancer-causing agents during her service at that time. Beth was recently featured in an article about this in the Pittsburgh Tribune-Review.
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The City Reformed membership letter mentioned several of our needs. Our financial needs are summarized under the “Donate” button in the right hand column. As well, once Beth begins the transplant process, she will be a full-time inpatient at West Penn hospital for a week or two, and for the first 30 days after that, we will need to make daily trips to West Penn’s “Short Stay” (daily outpatient) unit.
Given the commute schedule (I’m going to try to get to work as often as is possible during this time, with an eye on our finances). During that time, we may need some help with the daily commutes, one way or another. But at this point, I don’t have any idea what that will involve.
We’ve also been approached about having meals prepared for us, and I believe that will be very helpful to us once we enter into the transplant schedule.
I want to say that we all are tremendously grateful to be a part of the City Reformed congregation. The response from Matt and the deacons, as well as other folks we know, has been overwhelming. We are most grateful for your prayers and concern and help during this very difficult time.
John and Bethany Bugay
Please note: the “Chicken” entry nearby was a spoof of an academic research paper and presentation, and is in no wise representative of the other materials at this blog. 🙂