Joe’s Story

Site created on August 25, 2018


August 23, 2018
Dear Friends and Family:You may have heard from Karen or me, during the chemo phase of this journey through MDS, that the
Dacogen will work “until it quits working.” After 7 complete rounds of the medicine, and after my blood counts
plateaued in May, the trends have been slowly, but steadily marching downward, which is an indication that the
therapy is no longer as effective. From the start, we were aware that a stem cell transplant (SCT) was a
probability…some day…and that day is arriving sooner than later. After considering all the options, and on the
advice of Dr. V. (transplant specialist,) we began a 2 week period of various tests which would be a major
determining factor of being a candidate for the Allogeneic Stem Cell Transplantation treatment. It started with
another bone marrow biopsy, my seventh, which I barely remember thanks to that wonderful “feel good"
medicine, proceeded to 24 separate blood samples, a chest x-ray, a heart echo cardiogram, a lung function
test, and a kidney test.
Tuesday, we went to Dallas for more consultations. Dr. V patiently and professionally explained the
results of my work-up tests, all of which I passed, with exception of the kidney function, which was just out of
the range of normal, but was not a deal killer. Oops…poor word choice…how about…it was not of major
concern to Dr. V. (yes, I like that wording better). Other than this pesky problem of my bone marrow not
making enough blood cells, I’m a picture of health. At the end of the consult, the transplant coordinator went
over the timeline calendar and produced the official version of the “Disclosure and Consent for High-Dose
Chemotherapy with Allogeneic Stem Cell Transplantation” form, which with other necessary forms , was written
on enough paper to decimate a small forest. The very first page began with this sentence in italics: “This
disclosure is not meant to scare or alarm you…”, and then, while reading on, I noticed that all the parts that
supposedly were not “meant to scare or alarm,” coincidentally were written Bold face type. Just imagine a
script written for any medicine advertised on the evening news, and you’ll get the picture. However, I signed
and dated each place indicated, and by doing so I became a qualified UTSW stem cell transplant recipient…
fully entitled to all rights and privileges thereof!
A modern day SCT of this type is a highly choreographed procedure, involving many skilled persons,
but the key link is between me and my donor. Ironically, I signed up to
be a donor at the Wild West 100 Bike Ride in 2014. Little did I know
then, that I would be a recipient, and not a donor. Here’s the link, if
you’d like to have more information: Be The Match Foundation.
Thanks to BTM searching a database of around 22 million potentials,
we found a perfect donor for me. We know these things about him:
he is a 28 year old Canadian male with my blood type, he weighs
about 155 pounds, he is a perfect 10 out of 10 genetic match, he has
an intact immune system, and has previous exposure to similar viruses
as I have. In addition, we have a bonus marker, which is considered a
“permissive mis-match.” That means something good to a really smart
genetics scientist, but to me, it just means that he probably rides a
Harley, and I ride a bicycle. Genetics for dummies. Karen and I have nick-named him “Dudley Do-right,” since
he’s a Royal Canadian Mountie, and always appears just in time, shouting his familiar line to someone in
distress—“Don’t worry….I’ll save you!”

Here’s a very simplified scenario of how my SCT will work. We will check into the hospital next Tuesday,
August 28th. During the first week, while I am being given 2 different types of high-dose chemotherapy that
will completely kill my bone marrow stem cells (and hopefully not me), Dudley in Canada will be given 3 daily
injections to (hopefully) boost his immune system. The day before transplant, they will hook him to a machine
that extracts his stem cells, and then those cells are given to a courier, who personally flies to Dallas from
Canada and hand-delivers them to the blood bank for further processing. The next day, they will infuse me
with Dudley’s stem cells. That day is designated “Day Zero” which will be my “third” birthday—the first when I
was born, the second when I was born again, and the third will be when I’m born born again. Three and four
days after the transplant are 2 more rounds of chemo, and is a critical time when I’m both most vulnerable,
because I will have no natural protection from various infections, and it will feel like having an amped up case
of the flu which could last to day +15. Part of that sickness is from the effects of the chemo and part is due to
the fact that Dudley’s stem cells are making a new immune system that doesn’t particularly like a body with a
Texas accent; they are trying to “reject” me, so I will be taking anti-rejection medicines for a while. Best case is
we are discharged from the hospital 20 days after the transplant, and then Karen and I will live in an apartment
close to the clinic for another 2 months, so the recovery can be closely monitored. Whew…..well, it’s actually
way more complicated than that, but I left out the BOLD type parts of the Consent Form, because the world
doesn’t need any more scared or alarmed people.
Just thinking about the Journey up until now, and the complexities going forward, there are so many
things completely out of our control. We are learning to stretch our faith and trust muscles to garner greater
portions of strength and peace from the Lord. As we know that many of you who know us best, are praying for
a miracle, I sit in true awe and reverence of God’s sovereignty, provision, timing and purposes. I think about
how in God’s plan…28 years ago, somewhere else in the world, a baby boy was born who was so perfectly
formed and matched to another person, even down to 11 incredibly complex specific molecules. I think about
how God gave “scary smart” men and women the talents and abilities to use modern science and technology
to bring those specific two people together at just the right time. I think about one day one of them made the
choice to give the life and vitality in his very blood—to save the life of another person he’d never met. To me, all
these things and more, are miracles.
The parallel between the sacrifice of Jesus on the cross, whose blood gives life to those who are
spiritually dead, and Dudley giving his blood to me to save my physical life, has not gone un-noticed. Karen
and I are living in a real-life-flesh-and-blood (literally) exhibition of the three things I believe God gave us at the
beginning of this walk of building faith and trust. Karen and I have truly been “given a privilege”—by navigating
through the maze of MDS to “watch Him work,” and have been, and (hopefully) will continually be given
“opportunities” to tell others of the joy of daily living an abundant life in the midst of hardship. Someday we
might have the opportunity to tell “Dudley” in person how grateful we are for his gift, but in the meantime,
thanks to you all, for your continued prayers and encouragements, since we will likely be facing some serious
headwinds over the next few months. Each of you, for many various reasons, have made a difference to Karen
and me, and we want you to know that truly you are loved and appreciated.
Remember….Greater love has no man than this: to lay down one’s life for his friends,
Joe & Karen

Newest Update

Journal entry by Joe Griffin

Dear Friends and Family:

We hear stories all the time of people—first responders, combat soldiers, next door neighbors— charging into situations, sometimes to their own peril, with the intention of saving someone who is in danger. Few of us have the opportunity to be on the receiving end; but I am one of the few.

You might remember that early on in Karen’s and my trip through diagnosis and treatment for bone marrow failure, I introduced you to my unknown stem cell donor, who Karen affectionately named “Dudley.” Dudley Do-Right was the famous cartoon Canadian Mountie who would charge into situations of danger with the intention of saving someone’s life. Due to the protocols of the BeTheMatch organization, which governs the donor registry process, both donors and recipients must remain anonymous to each other for at least the first year post-transplant. This is to guard against possible emotional injury to those involved, in case the recipient does not survive the transplant and recovery. On my 1st anniversary, I completed the needed paperwork with BTM to release my contact information to “Dudley.” Months went by, and we heard no response, and when we were told that he was no longer in the BTM registry, we were resigned to the possibility of never knowing our donor’s true identity. To us....he remained “Dudley.”

Recently, my coordinator at UTSW told me that she had received “Dudley’s” contact information, meaning that we could now contact him. Ready? ...Wait for it...drum roll please.. “Dudley” is really “Ryan,” and he lives in Ontario, and he’s 29 years old, and he’s married to Jasmine, and... he’s very special to me. Finally connecting a real name to a real person, I sat down to write my introduction....but I could only stare at the keyboard...and stare at the keyboard... and.....stare......at.......the............keyboard. Suddenly my brain connected with my fingers, and I wrote: “Dear Ryan. This is a letter that I hoped someday to be writing, though never sure it would come to pass. Now that I’m writing, I’m at a loss for words, just thinking about the enormity of the convergence of circumstances that enable us—anonymously—to share a bond that few people in the world have the privilege of having. My name is Joe Griffin, and I’m the one whose life you literally saved by your unselfish act of donating your stem cells...” Attached were family pictures, and samples from Faith and Robert’s wedding.

It took less than a day for Ryan to respond with a long, and detailed letter giving parts of his “back story.” To honor his privacy, I won’t share all that he wrote, but I feel that excerpted parts will help to describe what kind of character this young man has.

“Dear Joe and Karen,
It’s a great joy to finally be in touch. My wife, Jasmine, is included since she was also there throughout this journey and kept me strong when I was scared. I don’t need to tell you how much of a difference having somebody beside you can make, so to Karen and to Jasmine, I can only say thank you, with all the love in the world...It wasn’t until January 2019 that I was even allowed to ask after the status of your wellbeing. After asking, I then received an email in February that said ‘We received an update from the Transplant Centre. Your recipient is alive and doing well.’

I was in tears and in a heap on the floor. Some people choose not to reveal themselves, but knowing that you were well was such a gift and I couldn’t imagine not wanting to know how you were doing and who you were after that small update....Most importantly, however, the relief I feel for knowing you could be at your daughter’s wedding is beyond words, especially since the donation was only weeks after our own wedding.

But from you and from this experience, I’ve inherited a deep, visceral sense of humility and gratitude for life. This is because this experience enabled me to make good on a promise I made. I got swabbed to join the registry in 2010 one day while on campus, just thinking it might be a good thing to do. But when my best friend’s dad (a second father to me) was diagnosed with leukemia a few years ago, I remember walking through the woods at the park he hired me to work at, talking to the trees and wishing I could get a call saying I was the match that could save him, and keep him in my life for even just a little bit longer. I promised the trees he planted that I’d give anything to keep him around. My wish was not granted and he passed away. It felt like an unfulfilled promise... but then I got a call a couple years later on the day after we returned to Canada from England for a short time so that we could get married at home. The voice on the phone said I was a match for somebody that needed help.

I was allowed to keep my promise, at least in some way. Thank you for that, Joe. Thank you for giving me the chance to do and be good, and for the humility and gratitude I have learned from this experience.”

We have exchanged more letters since the initial greetings, and the feeling for me is akin to going out on a first date....(not that I’ve done that in many, many years.) We’re both filling in some blanks as we compare experiences in “real life.” Thinking about that, I relayed this to Ryan: “I’m more kin to you (by blood) than I am to our three daughters, or my only sibling (older sister, Penny). If I were to get my DNA checked by 23&Me, I’d be a “mutt.” The test results might mess up the 23&Me computer algorithms so much it might leave them all fried. In a weird “sci-fi” surreal juxtaposition, you are in the age range to be my son, but at the same time, you are more blood kin to me than my “natural” daughters, and you donated your blood DNA like a father would pass on his inheritance to an off-spring. Try to wrap your head around that one for a while.”

So here we are...finally on arrival with the Dudley/Ryan reveal, and just to know that all of you who have been with us, are part of this, too. It is a privilege that we get to share with you; Ryan’s and Jasmine’s and Karen’s and my joy!

Soul Vitamin for the Day: “Weeping may last for the night, but a shout of joy comes in the morning” Psalm 30:5b

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