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.
I’ll get supersize fries too! Thank you for sharing your family’s story and I wish for your beautiful niece’s full health and recovery.
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Hi Steve,
What a nice post! Thank you for writing it and I’m glad John shared the link.
My son, Taylor, is a friend and classmate of Kat’s. Their circle of friends misses her terribly, especially at school where reminders of her are constant. They wouldn’t have it any other way, though. She is close to their heart every minute. Kat even helped arrange for a surprise 14th Bday party for Taylor back in September. She is dear to our family, as are Carol and John.
We are sending prayers and love and warm, healing energy out to all of you.
Like you, I may need to visit a Mcdonalds. Fries once in a while can’t hurt, right? Everything in moderation. 🙂
Warmly,
Jean-Marie
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Thanks, Jean-Marie! I know the support of the community has been a wonderful blessing to Kathryn, Carol and John.
Thanks, Harumi, too!
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Thanks for the helpful background filling in some of the gaps of my understanding. Thx as well for the new pic of Kat. Cute. Prayers have been lifted and will continue daily and beyond. Let me know if we can do anything from KC. Glad to have your blog page now too!
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Thanks, Doug! But I should note that it’s not a new photo of Kat. I shot that when I was visiting the weekend before Patrick died, when I was showing Kat some photo apps on my iPhone. So it’s about 16 months old. Which is a long time in adolescent years.
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I’ll make sure to order the supersize fries. I am praying
for Kathryn, as well as her parents. God Bless!
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Thanks for such a beautifully written summary, Steve. And
thanks for making it available today as we hover the web looking
for updates between prayers. I’m also a VT friend of the Devlin’s
and I’m so glad we have these caring bridge/Facebook/blog
technologies to get us connected. But I too can also find some time
to celebrate the generosity of the Ronald McDonald House with some
fries this week! Good suggestion! Erin
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Dear Family and Friends I have heard of this most important
day in your lives for from Rev. Sharon Buttry. I will be praying
through out the day that the God that heals will minister his full
measure of Mercy to his honor and Glory to you all. That the love
He has for all of you, according to the spirit and scriptures will
overflow into your lives with comfort, grace and peace. May his
promises and faithfulness be remembered and believed. For he will
send you words of hope, people of strength and courage to lift you
up and carry you. Even from places least excepted. So look up our
Lord is looking after you and may your testimony bring honor and
Glory to His name PJ
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Thanks for sharing this, Steve. I will continue to pray and share the story with others.
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Dear Devlin Family, Thinking of you all and sending
blessings for strength, hope, and renewed health. Barbara
Pawluk
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Big cheers to your niece! My sister got stem cells from a
non family member in 2004 and is back in action. This is a
miraculous medical advance and I’ll keep her and you in my thoughts
and prayers. It is a very worthwhile thing mcdonalds does with
Ronald McDonald houses … Imagine having to pull all your kids out
of school and move to a new city to save the life of one of your
kids while juggling your mortgage and rental costs in the new town
… Talking thousands of bucks. There’s an egg mcmuffin with my
name on it!
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Steve: Thank you for posting your story on what John, Carol and Kat are experiencing. My husband Jim and I and our older daughter Jennifer lived in Deerfield, Mass. above the Devlins when John was about 5 years old. I also went through a stem cell transplant 4 years ago and am doing extremely well. Our prayers are with all of you. My family knows well what it means to go through the transplant and the many many weeks of isolation after. However, I am 68 and am so grateful the technology offers such a lifesaving cure for myself and Kat. Sandy
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thank you for the update.
Praise to the Lord and greatly to be praised. He is faithful and his ways are perfect. Yet I will continue to pray and praise His on your behalf. May His healing work be complete
PJ
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Dear Steve,
A colleague brought this entry to my attention. You are so right that getting sick drives health information seeking. I have done research re: such information searches on the Internet. I’m an RN w PhD in mass comm. If you would like some help finding/evaluating/understanding health info re: your niece’s health situation, I would be happy to help you.
Martha Gaie, PhD, RN
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Thanks, Martha. My sister and her family are getting excellent information from their doctors, nurses and other specialists in Vermont and Boston. But we appreciate your thoughtful offer.
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Thanks Steve,
I’m a friend of Kathryn’s. Unfortunately I don’t go to the same school as her, and have been asking and waiting to hear some news about her.
Ceilidh
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[…] stray from my topic of journalism (or write a personal reflection on journalism). I wrote about my niece Kat, who was undergoing a stem cell transplant. I’m pleased to update that I visited Kat and her family in October. She’s doing great […]
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[…] to some people who really use social media, you will find that they are intensely social. When my niece was hospitalized for three months last year, and quarantined at home after her release, Facebook was a genuine and […]
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[…] group of blood disorders, so I don’t know that her disease is identical to the MDS my niece, Kat Devlin, was treated for last year, but in both cases, it was described as a possible precursor to […]
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[…] I have also written about Patrick’s sister, Kat, I am also pleased to share this update, from the same CaringBridge post: We had a wellness check […]
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[…] about him, except for an obituary written by the funeral home. They didn’t write when his sister, Kat, had a stem-cell transplant for a related blood disorder. And they didn’t write this Christmas, when Make-A-Wish sent Kat and […]
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[…] Mandy, Luke and Missy. I also have blogged about the two children of my sister, Carol, Patrick and Kat Devlin. I have written about my brother Dan here, but not about his children. But Mimi and I were […]
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[…] journal posted by my brother-in-law, John Devlin, during the illnesses of his children, Patrick and Kat. I posted twice in 2009 about John’s use of CaringBridge, and knew I needed to share my story […]
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