Anniversary

Origins: Part 6 A Mission is Born

My book Raising a Child with Hemophilia was published, my second child was born, I went back to work after three months and life went on. By now we were doing home infusions, which made life so much easier.

PEN Then: first edition!

The book was given away free of charge to all. Thank you notes flooded in—many of which I still have. One mom, Sybil, called me from North Carolina, to thank me for the book, but also to propose an idea. She loved all the stories in the book, interwoven with the factual text. For many parents, it was the first time they were hearing from other parents about hemophilia. Recall in 1990 we had no internet, cell phones, Facebook, Google. We were adrift and isolated.

“Wouldn’t it be nice,” she supposed, “if we could keep those stories coming in some sort of newsletter?”

MaryAnn Barth of Quantum, and
Laureen Kelley, 1994

I had had no intention of doing anything else related to hemophilia besides raise my son. But life had other plans. A newsletter? A great idea. I myself wanted those stories to keep coming. By chance, my son’s home care company, Quantum, called me. MaryAnn Barth was the director of marketing, and she loved my book too. She wanted to know if I could do “something” that Quantum could stamp their name on. Perfect timing. I suggested the newsletter, and she jumped on it. With an initial grant of $500, the Parent Exchange Newsletter (PEN) was born.

I reached out to the 150 families that I had initially interviewed and asked for more stories. All by handwritten letters! Each night I diligently typed in stories, and added photos. I was working off an old Compaq computer that weighed a ton, needed a hand cart to transport, with a miniscule screen, and black and green print. Ghastly by today’s standards! And no layout software. The first issue of PEN was cut and pasted, black and white, xeroxed, and very primitive. Our mailing list was 50 people. But it worked. People responded and PEN was born.

Laurie presenting in Texas, 1993

I had no idea it would continue for 30 years and become the oldest hemophilia newsletter in the country!

Book orders came in, and we added families to our mailing list, which grew rapidly. I attended my very first speaking engagement in Ypsilanti, Michigan, with a baby and toddler in tow. (Ironically, I attended the same meeting just last year and shared that this is where it all began!) I felt like a celebrity when so many parents approached me to thank me for the book, and to share their story. The number of speaking engagements increased; one mom burst into tears when she met me, and then told me how much the book helped her.

Not everyone was pleased. There was a segment of our community dealing with HIV, related deaths and lawsuits against the pharmaceutical companies that provided the contaminated factor that killed so many. This segment, and a few people in particular, believed that any fraternization with industry was tantamount to being a traitor, and they shunned me. For a young mom and novice like me, this was a huge surprise. On the other hand, I instinctively felt that I was doing a vital service to the non-HIV families, who were not being attended to, of which I was one.

Time has shown this was correct. In the end, those who were detractors eventually became colleagues and supporters, once the crisis had passed, though this took years.

The final turning point for me came when Armour asked me to write more books. More projects. I hadn’t planned on any, but looking at my sweet children, I wanted nothing more than to stay home with them, to raise them. Working 9-5, Monday through Friday with business travel, and doing economic forecasts would keep me from them. By now I had transferred to the international department of DRI/McGraw-Hill, where I recall working once on the 25-year economic forecast for Algeria, a country I had never even visited!

I was ready for a change; I wasn’t a very good economist anyway! I saw an opportunity and took it. I lined up some book contracts with Armour. Reading stories and books to my children each night, I realized there were no children’s books on hemophilia. With my degree and published research in developmental children’s psychology, I knew I could create the kind of books I’d want my children to read. When I presented a plan for a developmental series of books, a book of stories Dr. Seuss style, and more, Armour quickly agreed and I had enough to live on for a few years. And I lowered my gas, dry cleaning, clothing, and day care bills instantly!

I quit my job in June of 1992, and devoted myself full time to my family, working evenings and some weekends on my books, both of which were a source of joy. Hemophilia became my life and life’s work.

PEN Today!

And so Kelley Communications was born! (Later renamed LA Kelley Communications when we incorporated). And I have never looked back. I can’t say that 30 years have flown by because so many amazing things have happened, with so many amazing people. It was been rich, rewarding, fulfilling. It led to working internationally, the creation of Project SHARE, Save One Life, and many firsts in the bleeding disorder community. My work became more than a book or newsletter; it became, and still is, a mission. I have found what many spend their lives seeking: purpose. When I review that odd circumstances surrounding my son’s birth, my choice of husband (who, unknown to me, had been working on recombinant factor VIII!), and many more coincidences, it seems this was all preordained.

Laureen A. Kelley,
Woman on a mission!

I never used to believe that, but as I get older, I now marvel at how this all unfolded. And still is unfolding. The thing about a mission is this: you never get to retire, or stop, until you fulfill it. And we still have a lot more work to do in this global community. I look forward to contributing more, and I hope you join me on this amazing mission!

This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being a force of nature instead of a feverish selfish clod of ailments and grievances complaining that the world will not devote itself to making you happy. I am of the opinion that my life belongs to the whole community and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die, for the harder I work, the more I live. I rejoice in life for its own sake. Life is no ‘brief candle’ to me. It is sort of a splendid torch which I have a hold of for the moment, and I want to make it burn as brightly as possible before handing it over to future generations. ~ George Bernard Shaw

Origins: Part 5 The Postcard, Phone Call… the Book

I was sitting at my desk at work; it was 1989 and my had I learned a few things about managing hemophilia by now. I felt a burning desire that parents needed some sort of book, a book that would pair the wisdom of parents raising a child with hemophilia with the medical information we received from our HTC. Practical and in our language. Such a book didn’t exist. The internet wasn’t even dreamed of, and there were no cell phones or Google. We were stuck, each of us, in our own, dark, scary world of bleeds. ‘

I glanced through a magazine I had received from the Armour Pharmaceutical Company. It was light, filled with feel-good stories, and what I considered to be fluffy information, as if I couldn’t handle the truth about hemophilia. It talked down to me. I noticed a business reply card that I could fill out and give feedback to. I tore it out and gave HemaLog a rather scathing review. I felt better, and tossed it into the mail.

A few days later, at work, my phone rang. It was Rob Partridge, product manager of Monoclate-P, and he was very interested in what I had to say. He read my postcard. I didn’t know anyone would actually read it. I felt embarrassed and apologized.  I didn’t mean to be so… honest? But he was fine with it. “This is what we want to hear; what do you need?” he asked. The million dollar question. “We need a book,” I sputtered. “A Dr. Spock book of how to raise these children.” I went on to tell him about our mishaps, and how we learned so much from other parents. I explained how we would glean our information from the parents. And my husband, as a process scientist and someone who had worked on recombinant factor, would handle the medical and scientific parts.

Laurie Kelley with Rob Partridge of Armour Pharmaceutical, who approved funding for the Raising a Child with Hemophilia

Rob loved the idea. He was new to his position, and no doubt he wanted to grab on to a unique opportunity and project. How to go about making this book? Who would write it?

“I will,” I offered. “I have the first chapter done already.”

One postcard and one phone call, and then one contract. Luckily, I had had a lot of experience with negotiations and contracts from work, and knew how to handle this part. We were in business!

It was late 1989 and the book would occupy much of the next 8 months. So would another project: I was pregnant! It was a challenge: I worked all day at a professional office, managing a client list, and sales of economic forecasts, then would drive to pick up my son, then come home, play with and feed him, then put him to bed at 8 pm. Then I got to work on my book. We only had clunky, green screen Compaq computers back then. Nothing like what we have today. I’d work till midnight, then get up and do it all over again. In between, there were hospital runs, bleeds, and the usual family events.

I was exhausted most of the time. But the conversations and stories I collected motivated me. I put an ad in Belonging, Caremark’s magazine for chronic disorders. My phone started ringing off the hook; and this was a corded phone, so I had to stay in one spot, and take notes. I’ll never forget: the first mom who called me was named Linda, had a factor IX deficiency son and had never in her life spoken to another parent of a child with hemophilia! I recorded her story on paper, while she poured out her feelings. An hour later, the phone rang again. Another Linda, another factor IX son! I put them both in touch with one another.

An ad in Belonging led to
an avalanche of phone calls!

On it went; I had 50 phone calls in the first two weeks. Those 50 moms remain to this day some of my best friends in the community. And I’ve watched their sons grow up, and now have children of their own!

I was working too hard, burning the candle at both ends. I was at work one day in June, and was about 6 months pregnant. While I had gained about 50 pounds with my son, I hadn’t gained much with this pregnancy. I was on the phone with Mario Cuomo’s budget analyst for the state of New York, when my head felt like there was an axe in the middle of it. I joked that the number crunching was killing me, begged to be let go, hung up on my client and went home early. I couldn’t eat or drink anything for the next three days, and ended up in the ER, where I kept touching my head to see if it really was on fire. My temperature soared to over 103° as my blood pressure dropped to a dangerous level. I was transported to Brigham and Women’s in Boston by ambulance; it was that serious. They did a spinal tap, and put me in isolation. No one knew exactly what was wrong; they eventually diagnosed it as meningitis. I was scared for my unborn child. I was being pumped full of fluids and antibiotics. The next week was a blur, but I was finally sent home.

I was 6 months pregnant and weighed 114 pounds.

Three months later, I finished up the last edits on the book one night, and gave birth at 1 am, on my birthday, to a beautiful and healthy 8-and-a half pound baby girl.  It was like having two babies born!

The book would be printed by Armour Pharmaceutical Company (now CSL Behring) in 1990, and remains the “bible” of hemophilia for so many families. We have always given the book away free of charge to parents. It was the first time so many voices of parents were heard directly; I had given them a voice to speak to other parents, with information I needed, and knew they needed.

I thought my life’s dream was done—I wrote a book! I went back to work at DRI/McGraw-Hill to sell more economic forecasts, never dreaming that this was only the beginning. My life would forever change with the birth of my son, and the birth of my book. (Order the 2016 version here!)

Next week: Whirlwind of Community Events and Another Book

Origins: Part 4 Turning Point

It was 1989. My son with hemophilia was two, and we had had some experiences with bleeds. There was the potential head bleed at nine months, when our baby was sitting up but still wobbly, and pitched backwards and hit his head on the hard wood floor. We rushed him to Children’s Hospital for his first infusion. I was crying more than him, and was ordered out of the room, while our nurse tried to secure a vein. I wandered the hospital halls, crying to myself, and when I returned, saw everyone, including my baby, laughing and just fine. That’s when it dawned on me that I had more problems with the infusion than my baby!

There was the bleed at age 10 months, when our son stood up in his crib. He was teething and gnawed on the crib railing. I saw blood dripping from his mouth and realized he had cut his gums. But suddenly the bleed stopped! He was moderate, after all, and perhaps the bleeding would stay stopped. I put him down to sleep.

In the morning, I opened his door, and there he stood, one little hand on the crib rail, and one holding his bottle, covered from head to waist in blood. Only his round white eyes seemed visible. He was smiling a grisly, bloody smile. If I hadn’t known it was from a small cut in his gum, I would have panicked. This time I remained calm, and cleaned him up as best I could. Blood was in his ears, hair, nose… everywhere and the gum was actively bleeding now. So back to Children’s Hospital for an infusion. We had to wrap him in a bedsheet to sneak him out of the house. We lived in Medford, Massachusetts, a town where the houses are crammed together and where there is no privacy! We spent the morning at the hospital, and he got a second infusion.

When sharing this story, now with a bit of humor, at our monthly parents’ support group meeting, one of the moms asked if we had used Amicar. Never heard of it! She was surprised, and we were surprised. Amicar helps neutralize saliva so that it won’t break down a clot in the mouth. Why had no one at Children’s told us about this? Had we known, and given him a dose that first night, when the bleeding stopped temporarily, maybe we could have avoided a hospital visit and infusion.

It dawned on me that parents have first-hand knowledge and advice that maybe even the medical team doesn’t know or remember.

We remained tethered to our HTC. The turning point came September 29, 1989, when my son had just turned two. It was like a new me was born. An advocate. A real hemo-mom!

I will never forget that morning. I was dressed up to go to work (it was the ‘80s!): silk dress, big hair, big earrings, jewelry, and high heels. I worked at DRI/McGraw-Hill, a private economic forecasting company. My dream job. I worked with intelligent, interesting people creating and delivering economic forecasts for different industries. I felt at last everything was going great and hemophilia was under control. That all would change.

Wearing those high heels, I drove my son to the babysitter, as usual. Carrying him from my car to the front door, I slipped on something, Maybe mulch, a stone… who knows? The baby pitched forward from me, and landed headfirst on the driveway. Our babysitter cried, I cried, the baby cried. I put him back in the car and we rushed to the hospital. My husband met us there, after the sitter called him. Imagine, no cell phones!

I recall waiting and waiting at the hospital. No infusion at first, just x-rays, and many doctors standing around discussing what should be done. We waited hours. No food, no juice, and finally, no patience. My son, who had been running around the hospital halls, started to fuss and cry. A nurse tried to pin him down on a table for an MRI, but my son would have none of it. She said, “I’m going to get a doctor to help hold him down.” My husband looked angry (and he never did), and frustrated. We talked about what was happening, and I said, “Let’s get out of here.”

It seemed radical, controversial. We were saying we were leaving the hospital without approval. The team had finally infused him, but were not making any decisions about next steps. And our son hit the breaking point. We knew the symptoms of a head bleed. We could monitor him. So we announced we were leaving, and were told, No you can’t! Yes, we could. And somehow I knew I was right.

We signed a stack of papers, and left. All weekend we monitored him, and into the next week. He was fine. No sign of a head bleed.

When I shared this episode with our support group, our nurse Jocelyn made the suggestion that perhaps I wanted to write this down? I guess I sounded emotional, and she might have felt I needed to sort out my feelings. But I actually was feeling very empowered. I had made a medical decision. I could make decisions about my son’s health. It was a revelation. I was a person who seemed to escape all physical problems as a child; the worst thing that happened to me was getting stitches in 5th grade. I had no experience dealing with hospitals and doctors until I actually had my baby. It was a revelation that I could make this medical decision.

So I started writing. But I also remembered all the wisdom I had heard in the parent support group. I started writing that down. Little by little, the writing exercise became something more. What if I were to ask parents of children with hemophilia to share their stories? How empowering would that be? I know I needed their information and advice.

I called the National Hemophilia Foundation and asked the advice of two women who worked in their educational department. They were adamant: a book would be a great idea, but not just stories. “We want a guidebook,” said one of the women. “At each stage of life,” added the other.

That was a lot more than I had originally dreamed up. But why not? A book about how to raise a child with hemophilia, based on advice from parents. I had a degree in child psychology and had published research. I knew how to research.

The book idea became even more urgent when I learned there was not just one brand of factor, and one homecare company, as I was led to believe. I had a choice. And I was a consumer, not just a patient. I could make my own decisions there too. My husband knew all about the medicine, because he worked in the field. We could include a whole chapter on being a consumer.

The book idea became a reality, a passion, a need. Now all I needed was a way to solicit stories… and get funding.

Next: Phone calls pour in, and one postcard turns the tide.

Origins: Part 3, Coming Full Circle

When my husband came home that Friday night, he took the diagnosis with characteristic calm. But he surprised me when he said, “I’ve been working in the Biogen lab on recombinant factor VIII, which is a treatment for hemophilia. I know everything about this molecule!” Another Twilight Zone moment; cue the creepy music! He explained what he knew about hemophilia, and the information actually made me settled down inside. He knew what was going on! He even said that everything would be okay, and “I don’t really play sports, so I could have had hemophilia all my life and never have known it.”

Jocylen, our nurse at Boston Children’s Hospital

I love that he helped calm me down, but that last statement showed we really didn’t have a clue what we were in for!

I eventually made sense in my head that our newborn was diagnosed with an incurable, lifelong bleeding disorder, this seemingly ancient affliction, the “royal disease.” My husband and I called the HTC back, and booked our first appointment. I recall I went alone, and met our nurse practitioner first, Jocelyn, who was eye-catchingly young and beautiful, with cascading dark hair, a Snow White voice, and gentle demeanor that put us at ease. She looked like the actress Connie Sellecca. We laughed at how I had hung up on her!

She was reassuring, lovely and made me feel 100% better. We were at Boston Children’s Hospital, after all, a medical Mecca, a world-renowned hospital. She knew that I had a background in child developmental psychology, and in parting, she gave me a xeroxed chapter from a book about children’s concepts of health and illness. As she explained the article, I told her in awe, I knew this article. I helped write it. That was my name in the first footnote, Laureen A. Morrow. (My maiden name) We both stared at one another in surprise!

Then she asked if I had ever met anyone with hemophilia. I actually had not. Well, she said, do you know who Robert K. Massie is? Yes! I was excited; he’s my favorite author, and I was reading his book Peter the Great the night my son was born…

Jocelyn suggested I read this, which, unknown to her, I had helped to research and write!

No, she interrupted, not the author. His son. Who has hemophilia. Would you like to talk to him? He’s offered his phone number to new parents. And he lives only 2 miles from you.

Well, two startling moments when life circles back to you: Jocelyn had just handed me my own research on child development, and she knows the son of my favorite author, whose book I received when I was pregnant with my son with hemophilia (and didn’t know it), and that I was reading while in labor with my son with hemophilia! I shared this with Jocelyn and we were both fairly shocked! She recommended the book Journey, which Bob and Suzanne Massie had written in 1974 about their experiences with a child with hemophilia. I think it’s fair to say it was the first book on hemophilia.

The amazing book Journey

I bought the book and read it right away, hungry for knowledge. I crying my eyes out by page 11, and had to stop reading it. I couldn’t bear the thought of my baby, any baby, having to deal with the pain and suffering this baby did. My best defense mechanism was a Scarlett O’Hara approach: I’ll think about that tomorrow.

I was too overwhelmed and intimidated to call Bob Massie. And 10 days later, while bathing my two month old, I felt a lump in his bicep. A big hard lump. My poor irrational brain was hijacked again by rampant emotions. Now he has leukemia! I thought. I bundled him up, alone as my husband was working, and raced to Children’s Hospital in full crisis mode. I look back and realize the baby had been gurgling, happy and relaxed, and I made a situation worse by my over-reaction.

In the ER, while describing to the nurse what I thought was wrong, a baby bottle fell, smashed and milk spilled everywhere. I broke down and cried. Everything seemed wrong! The ER nurse was kind and helped me, and got me to relax. When my son was examined, there was a bruise on his inner bicep, clearly visible. I was such a hemo-newbie, it never occurred to me that this had anything too do with hemophilia! The doctor looked at the bruise, and began to ask: Did you grab your baby at any time? Did you squeeze his arm too tightly?

I realized with shock that they were quizzing me on child abuse.

How could my baby possibly gotten a bruise that caused his bicep to swell? Then I remembered 10 days ago, and his first clinic visit. The nurses had a terrible time getting a vein for a blood draw and had to hold him tight to get the vein to pop up. when I shared that with the doctor, he showed visible relief. That was it: a blood draw caused my son’s second bleed.

I learned a lot from that visit: that I was over-reacting, that a bicep bleed is slow and insidious, and not a crisis. That I tend to over-react in a crisis, and that even ER doctors may not recognize the symptoms of hemophilia. I started making notes on these things.

And I got the courage to call Bob Massie. I recall perfectly, on January 3, 1988. I settled myself in on the narrow stairs of our small house in Medford, Massachusetts, and dialed the phone (yup, dialed! It was 1988, after all!) Bob was so kind, reassuring, soothing. He himself had just become a father the month before my son was born, so we had that in common. We were both the same age, too. And he laughed when I shared my reaction to his parents’ book, Journey. Oh, don’t read that! he joked. Treatments have changed and the book is outdated. When he heard my son was diagnosed with moderate hemophilia, his entire voice changed. Oh, you won’t have anything to worry about, he reassured me. He won’t have as many bleeds; you will be fine!

Bob and I would become friends from that day on. And that conversation did more than anything to sooth my jangled nerves. Everything was going to be fine.

Next: The Turning Point

Origins: Part 2 Diagnosis

Six months went by fast and soon it was time for a baby. I never went into labor, so we had to jump start it with Pitocin, because I was two weeks overdue. I knew I was in for a long labor, so I grabbed my favorite book, Peter the Great, which I had already read. This is the book my mother had given me nine months ago, whose author’s son has hemophilia. Oh boy, would that make an impression soon. At the hospital, the nurses teased me as they saw me lying in bed in labor, reading this historical book with a yellow highlighter. “Studying for a test tomorrow?” one of them joked.

My baby was born by C-section and the next day, the doctor came into my room with a puzzled look on his face. He had circumcised our son, and “It bled for about 30 minutes,” he said, literally scratching his head. “In 30 years, I’ve never seen that.” In the back of my mind, I heard myself say, That author’s son has hemophilia…

He stitched our newborn up and when I saw him, he seemed fine. He was big–nine and a half pounds! We took him home two days later. One week later, around midnight, I went to change his diaper, and was shocked to see it saturated with blood. The entire diaper was red. I called the doctor, and he said to bring him to the ER. Our first ER trip at 1 am, with me still recovering from a C-Section. At that time Children’s Hospital in Boston was rather old and in need of repair. My husband went with our newborn into an exam room; they had me sit outside. I was crying to myself with no one around. Hearing my newborn scream for the next hour, two hours, was torture. My husband was excellent; he stayed with our son, talking to him, calming the situation down.

He looked perfect…

The ER doctor seemed more worried about me. It was 3 am, I was in the ugly waiting room alone, still not feeling great from the birth or lack of sleep or worry I could not stop crying. The baby’s screaming drove a knife through me. By 6 am, the baby was asleep, having survived the stitching, and we headed home, utterly drained. We had not slept in 24 hours.

It would be a month before we got the news. Meanwhile everything healed and life went on. Until the phone rang on a Friday afternoon in October. The voice of Jocelyn, a woman who would become our nurse and lifelong friend, was on the other end: “Laurie, this is Children’s Hospital calling. We have the results in from the blood tests. Your son has hemophilia A.”

Just like the author’s son. The author of the book I was reading the night I gave birth. The book my mother gave me nine months ago…

I felt a rushing noise in my ears that made it hard to hear what she was telling me. “Now, the clinic is closing for the weekend. If anything happens, if he bleeds, bring him in to the ER. We will need to give him an injection of medicine to clot his blood…”

While she was talking, I looked at my fluffy-headed, blond-haired one month old, innocently asleep in his bassinet, wearing a onesie. He looked perfect. What was this woman talking about? This was like a jail sentence!

I knew how to fix this. I hung up on her. And felt instantly back in control.

Next week: First clinic visit and weird circumstances continue!

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