Peter the Great

LA Kelley Communications: Origins

It sounds like a Marvel movie title, but it’s us! Our
This year, 2015, marks the 25th anniversary
of LA Kelley Communications. How did we get started; what made us do what we
do? How far have we come?
And more amazing, how did we do it without internet or
cell phones?
My son with hemophilia was born in 1987, and there was
no family history of hemophilia. I have six brothers and five maternal uncles;
diabetes runs rampant but not something as rare as hemophilia. A few weird coincidences
surrounded his birth:
It wasn’t planned! We were newlyweds, deep in grad school debt and wedding
debt, and wanted to wait a few years before having a baby. We took precautions. How we got pregnant will always be something of a mystery!
• My son’s father, a scientist, worked at Biogen, on
recombinant factor VIII development. Really.
• The day I went into labor, on Labor Day
appropriately, I knew it was going to be a long haul so I grabbed a big and
favorite book: Peter the Great, by
Robert K. Massie. My mom had given me this book at Christmas, nine months
before, when I didn’t even know I was pregnant, with the comment, “The author’s
son has hemophilia and that’s why he writes about Russian history.” The
delivery room nurses poked fun at me in-between contractions for reading this
epic story: “What do you have, a test in the morning?” they quipped.
Imagine what went through my mind when my son was born
and was circumcised 12 hours later, and the doctor came into my hospital room
scratching his head, saying they had to stitch the wound. “In 30 years I’ve
never seen a child bleed like that before.” Hemophilia,
I thought, just like the author’s son.
Laurie Kelley: big hair of the 80s

I won’t go into all that happened, but suffice to say
we felt utterly alone, powerless, afraid. At least I did. And I really dislike
feeling little control over my life. I had a hard-earned graduate degree, paid
for my own schooling and wedding, with only pennies left, and just landed
finally a good job at an economic forecasting firm. Everything was looking up
to get out of debt and improve our lives. Now this!

We met with the HTC staff in Boston, who were
wonderful. Yet none of them even had children. They couldn’t totally prepare
me for what was to come. They did know a lot about infusions, and that scared
me. Indeed, when our lovely nurse called me on a Friday afternoon to tell me my
son had hemophilia, over the phone (not recommended!), I was so overcome with
fear and sadness, I thought, I know how to handle this. I promptly hung up on
Well, we eventually had our first infusion, first bleed, and knew
to take him to the HTC for infusions. One day, while dressed in my high heels
and red silk dress (this was the 80s, you know) bringing my son to daycare, I
slipped on mulch in the driveway and the baby flew out of my arms. He hit his
head on the driveway and started crying. I started crying. The babysitter
started crying. Off to the HTC.
Hours later, when it was determined he was ok, I felt
drained and scared. When I shared this story at our parents’ support group
meeting, our nurse thought it would be good if I wrote my feelings down, as a
way to handle them. I did, and that started turning into a book, as I wrote
down everything I learned. When my son was 6 months and learning how to stand,
he bit the crib rail and started a frenulum bleed. It stopped! The HTC said to
just monitor overnight.
In the morning, when I went to get him, our son was
standing up in the crib, holding on to the crib rail, bottle in hand. He was
covered in blood. Now, we knew it was from the little frenulum tear, but it
looked so ghastly! All I could see were two little white eyes. Blood seemed
everywhere. We cleaned him up as best we could and wrapped him in a sheet to
sneak him to the car. (We lived in a neighborhood where houses were about two
feet apart). At the hospital, it stopped bleeding again! No factor was given
and we were sent home. But later, a mom of another child with hemophilia asked
if I had give him Amicar. “What’s that?” I asked. She shared that it
neutralized the saliva from breaking down a clot. Had we given it to him when
we first saw the bleed, we might have saved the clot (remember it did stop at
first) and prevented the hospital trip. Not even the doctors had told me that.
It was like a light bulb went off. Parents know so
much. Experienced parents. But no two families went through the same thing.
There were similarities and differences. If only I could capture all these! Other
parents must be going through what we’ve gone through as well. We need a book,
I thought.
A book was the only option. There was no internet, no
email, no Facebook, no way to read anything about hemophilia. I had contacted
the National Hemophilia Foundation and received a pamphlet. I was hungry for
information and wanted to sink my teeth into a book, like a Dr. Spock book on
child raising, only for hemophilia.
I had a background in child development. I knew I
could write. And I was desperate. A mission was born. My life’s mission became
to write the book I needed; that other parents needed.
I took out an ad in a homecare magazine that I was
writing a book on hemophilia and to share your stories. I had 50 phone calls
the first day. The first was from Linda in Virginia, who had a 17-year-old son
with factor IX deficiency. We spoke for two hours. The second call was from a
Linda in Washington, who also had a 17 year old with factor IX deficiency! Neither
mom had ever spoken to another mother of a child with hemophilia. This is how
separated we were. I put them in touch with each other.
This was going to be interesting.
While at work one day, I glanced through another
magazine, now defunct, called HemaLog. It was superficial and sugarcoated. I
bristled at how it talked “down” to me. Yes, I was taking it all too
personally, but my Irish temper got the better of me. I tore out the business
reply card, told them what I really thought, and tossed it in the mail. I felt
I felt much worse three days later when Rob Partridge
called me. He was the product manager for Monoclate-P, a factor VIII product
manufactured by Armour Pharmaceutical. I almost sank under my desk in embarrassment,
but he assured me he wanted to know what parents thought and what Armour could
do to help.
I told him we needed a book, a parenting book. Desperately.
Great! he said. How, when, how much? We talked about
what this would look like and before I knew it, we had a contract. I was going
to be an author. He took a huge risk, but I have to say it was a match made in
heaven. Rob was new in his position and looking to make a difference. And so
was I.
The book was hammered out in 8 months; I had a
deadline. Another baby on the way. For 8 months I worked all day at my job as
an economist, picked my son up from day care, came home, bathed him, played with
him, made him dinner, put him to bed, and worked till midnight on the book. My
computer was a 25-pound Compaq, that I wheeled out of work each night using a
handcart. The screen was black with little green letters; primitive by today’s
standards. There was no internet. No cutting and pasting. I read every single
submission sent to me. In total, 125 people. A wealth of knowledge. I learned
so much and was excited to bring this to the community.
Finally October 27, 1990 the book was done. Just in
time. At 1 am October 28, my birthday, my daughter Tara was born. My book and
daughter, born at the same time.
With the publication of my book, which I insisted would
be given free of charge to families, I thought my life’s work was complete. I published
a book! Now I could go back to being an economist, right?
Life had other plans!
To be continued…

Bobby Massie Cured

The Massie family is about as close as the US has ever come to having a royal hemophilia family. Robert Massie Sr is a Pulitzer Prize winning author, famous for his books Nicholas and Alexandra and Peter the Great. He began writing about Russian royalty while working as an editor for Newsweek, after the birth of his son Bobby, who was born in 1956 with hemophilia. Suzanne Massie is also an author, mostly on Russian culture and history, such as The Land of the Firebird (of which I own an autographed copy). They are both fabulous writers.

But it was their joint book Journey which sent shock waves to the world. For the first time, hemophilia was documented in all its detailed pathos. Both parents write in alternating chapters: he focusing on the scientific aspects mostly, she on the emotional aspects. It makes for a gut wrenching, blistering page-turner; a roller coaster of emotions at a time when there was no factor concentrate. The Massies were propelled to stardom following the release of Nicholas and Alexandra, which was later made into a movie. There were movie premiers, evenings with celebrities like Stephen Stills, Oscar de la Renta, and dinner at the White House.I was a huge fan of Robert K. Massie by age 25, even before my own child with hemophilia was born. Call it weird, fate or whatever, but there I was, in labor in the fall of 1987, reading Peter the Great while waiting for my child to be born. When my child was hospitalized later and the bleeding wouldn’t stop, I suddenly recalled my mother’s words from a few years ago, when she gave me the book as a Christmas gift: “The author writes about Russian history because his own son has hemophilia.” Little did I know Bobby Massie lived only two miles from my house at the time, Through our treatment center nurse, I was introduced to someone whose whole family I admired. Bobby and I met, and I found him very down to earth, intelligent, and above all stoic. He was suffering from not only hemophilia, but HIV and hep C. I later became friends with his mother, who worked with me to help kids with hemophilia in Russia, something she had been doing for some time. Suzanne became such an expert on all things Russian, that President Ronald Regan relied on her as an advisor for Russian policy, and she welcomed him to Russia, to the Pavlosk Palace, which she had helped to renovate. Remarkable family!

Bobby is also well known in Massachusetts for running for public office: he made history in 1994 by becoming the first person in the US to have HIV to run for Lieutenant Governor. He ran with Mark Roosevelt, a descendant of Teddy Roosevelt. And now I just read over the weekend that Bobby has been cured of hemophilia. How? A liver transplant on July 10. If you never heard of this, factor VIII is produced in the liver. Transplanting a liver from someone without hemophilia will give you a liver that makes factor VIII. It’s only for life and death emergencies, though. The risks of it being rejected are too high, as are the risks of bleeding. Bobby needed it as his liver had been failing.And true to his family heritage, he did it while making history. In a 10 hour surgery, he received a liver from someone who was receiving a liver from someone else… at the same time! A side by side liver transplant. This is called Domino Surgery, and this was performed at Emory University in Georgia.We wish Bobby a good recovery! Journey, a marvelous book about hemophilia in the 80s and 70s, is out of print. There are limited copies available on Amazon, and eBay. It’s worth reading.

Book I am Reading The Shack by William Young

I bought this at an airport and though being a best seller, i’s just not my style, I guess;  I could not get past the first few chapters. I skimmed through later the plot thesis: little daughter is murdered while family is on vacation (murdered in the shack), father Mack loses his faith, father receives a letter from God one day asking Mack to have a chat with him in the shack. Mack, who had turned skeptic, blindly says “Ok, sure, because maybe the letter is from God” and so on. So I stopped there; I guess I will miss the unfolding plot about how God is an overweight Chinese woman, Jesus is a lumberjack and I don’t even know what character the Holy Spirit was… maybe the postman? Dan Dick, ordained minister of The United Methodist Church, writes: “The Shack is a spiritual Twinkie – sugary sweet with little or no nutritional value. The fantasy tale is very unevenly told, but framed as a might-have-happened second-person narrative. The spiritually naïve and immature might find this to be a deeply satisfying treat. Without a sound theological basis or the application of even the most basic critical thinking skills, a reader might mistake this as more than just a fairy tale.” I won’t rate it given I didn’t read it it and will add that someone I know and respect very much read this, was moved about the message of forgiveness and subsequently reached out to a family member long lost and repaired a relationship. In that regard, this book has great value! It just wasn’t my spiritual cup of tea.

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