Update, December 18: Kat started high school this fall and is doing well.
Update: We visited Kat in the hospital yesterday and today. Her recovery is going well. She will be in the hospital a few more weeks, then will be an outpatient staying at the Ronald McDonald House another week or two, then return home to Vermont. She still has months of outpatient treatment and isolation in Vermont after she gets home. But she’s on schedule and heading in the right direction.
Update: Kat’s transplant went well and she is having a good day and playing with Legos at the hospital.
I may have to eat at McDonald’s a time or two during this weekend’s trip to Boston.
I’m not a fan of fast-food, and the most ubiquitous fast-food restaurant chain is perhaps my least-favorite of that genre. Actually, I do like their fries and breakfast sandwiches, but the doctor did say I needed to lose some weight. But I’ve always admired that company’s most prominent charitable cause. The Ronald McDonald House has helped my sister’s family immeasurably. I wrote several blog posts in 2009 relating to the illness and death of my nephew Patrick Devlin. His eulogy still gets occasional traffic, which gives me a little comfort.
While Patrick was hospitalized in Boston for a bone-marrow transplant, his best chance to battle acute myeloid leukemia, his parents from Vermont spent several weeks at the Ronald McDonald House, which provides free accommodations for families of severely sick children. It was a huge convenience and comfort at a time of unspeakable burden and fear.
What’s also unspeakable, and that’s why I haven’t been able to write about this for weeks, is that my sister Carol and her husband John are back at the Ronald McDonald House again. Today their daughter Kathryn undergoes a stem-cell transplant.
Kathryn has myelodysplasia (MDS), a blood disorder that usually affects people my age. Her bone marrow is not producing enough normal blood cells and if left untreated she runs a very strong chance of developing leukemia. According to the page I linked above at St. Jude Children’s Research Hospital, fewer than 100 new cases of MDS are reported each year in children in the United States. In about 30 percent of cases, MDS develops into acute myeloid leukemia (AML).
Our family is now in a research project, because such a “cluster” of siblings having MDS and AML is rare. Pat and Kat are one of only 17 known clusters internationally, most of them in Europe, and researchers are looking for a reason. So is our family. For comparison, the National Weather Service reports 60 deaths by lightning in an average year in the United States. So you are way more likely to be killed by lightning than to have to endure this mystifying combination of diseases in two children.
But it happens. So Carol and John are at the Ronald McDonald House (actually, they spend far more time at Children’s Hospital Boston), enduring a second transplant. All parents think of our children as rare, but sometimes ordinary is better.
If you don’t know about bone-marrow and stem-cell transplants (and I knew next to nothing until Patrick’s; illness teaches you a whole lot about medicine), the preparation includes more than a week of chemotherapy and radiation. The transplant itself involves transfusion of bone marrow (in Patrick’s case) and umbilical-cord stem cells (in Kathryn’s) into the blood stream, to replace defective bone marrow that is creating abnormal blood cells. The doctors describe it as “the cells know where to get off in the system and start working.” With umbilical cord cells which are more “naive” than bone marrow cells, engraftment takes a few days longer. I got some of that explanation from Carol and John, who have had to endure more medical education than I have.
The preparation and transplant break down the body’s immune system, so the patient spends weeks in the hospital following the transplant, then months quarantined at home to protect from the mild threats a normal adolescent would sniffle through or bounce back from quickly. Since childhood immunizations are carried in the blood (which is essentially being totally replaced by the new marrow), all those shots need to be re-administered and given time to work in the body.
An optimist would say, and I’ve said it a hundred times or so, that Kathryn’s diagnosis is really a blessing. They caught her disease before it could develop into leukemia. She is in good health, feeling only a little fatigue, and her prognosis is good. She appears bound for the happy ending that Patrick was denied.
But still, it’s agonizing for my sister and her husband and their daughter to endure the gauntlet of chemo, radiation, transplant, recovery and anxiety less than two years after they did it with Patrick. I’m glad McDonald’s spends some if its wealth to provide some convenience and financial support for families enduring such heartache. I think I’ll get the supersize fries.