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Failure to Plan is a Plan to Fail

Michael Joshua

I’m so excited that the time has finally come for me to be in college, on my own, making my own decisions without direct input from my mom. However, I can still hear her advice even when she is not around. 

  1. Contact campus emergency, not 911.  The officer on duty was able to access my emergency plan.  She called an ambulance and provided me with a taxi voucher to return to campus once I was discharged from the hospital.  I left the campus via ambulance at 1:00 am.
  2. My hematologist spoke directly to hospital personnel in the emergency room and they were expecting my arrival. Unfortunately, the medical staff was not very familiar with hemophilia.  However, I remembered my mom always stressed the importance of me being knowledgeable enough about my diagnosis to be an advocate for myself. I was able to instruct the nurse on how to mix and infuse the factor.  The nurse had orders for an x-ray and to draw factor levels.  I remember a situation when I was younger that the ER staff wanted to draw factor levels and my mom refused.  I agreed to the x-ray.  I expressed to the nurse that I infused on a prophylactic schedule and checking levels immediately following that type of trauma was not necessary.  They also wanted to keep me overnight for observation.  I did not want to stay overnight at a hospital for a toe injury so I told the nurse that 24-hour observation was not necessary and I would be willing to sign anything she needed refusing their recommended treatment.  It felt so empowering to make a decision alone about my treatment.
  3. I was discharged from the ER and returned back to campus at 3:08 am.  When I called my mom couldn’t believe that I had been transported to the ER via ambulance, treated and returned back to campus in two hours.  Modified attendance is part of my academic accommodation so before I went to sleep, I emailed my instructors to inform them that I would not be in class the next week.  The office of accessibility was also contacted because my injury resulted in difficulty walking and my dorm room is located on the 9th floor.  When I woke up it was 1:30 pm.  I was contacted by the director of food service about my meals and my meals were delivered to my room.
  4. Not only did my accessibility counselor follow up with me, but my mom informed me that because she has permission to discuss my records, she was also contacted and informed of the incident.  My counselor asked if there was anything else that could be done to assist me.

Well, I had a bleed at school that required emergency treatment.  Not only was it a school holiday but it was in the middle of the night, 12:50 am to be exact.  As I was doing some strength training in my room, I injured my toe.  The entire foot was swollen in a matter of minutes, I was in extreme pain and could hardly stand.  Of course, my first reaction was to infuse but I wasn’t able to administer hardly any of the dose (my veins kept blowing).  As I sat on my bed, I decided to call my mom.  Not for her assistance but just to let her know what was going on.  She has always said that she prefers to be in peace, not pieces.  In other words, try not to make her worry any more than she already does.  After speaking to her, I called my hematologist.  We decided that going to the emergency room was necessary.  I called my mom back and informed her of the next steps.  She reminded me of the emergency plan that was put in place during orientation with the office of accessibility.  There was nothing for me to figure out.  I just followed the plan. 

Planning ahead and having a documented emergency plan in place was well worth the effort.  The plan was followed as written and most of all, the plan worked.  This incident confirms, “I have hemophilia; hemophilia does not have me”!

Michael Joshua, age 19, is from Baton Rouge, Louisiana. He attends Loyola University of New Orleans. My major is political science; he intends to become a successful lawyer.

Happy Easter!

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Lights, Camera…

It’s our 30th anniversary! And since I am stuck at home like 90% of America, I’ve had few distractions and plenty of time to review tons of media from the past 30 years. My book “Raising a Child with Hemophilia” was published in 1990, when I was 33 years old. Armour Pharmaceutical Company wished to promote the book, and I found myself suddenly on TV and doing radio interviews, sometimes scheduled at midnight. The company hired a PR firm to work with me. We traveled to Cleveland, Dallas and Philly to make videos and promote the book. And some hemophilia nonprofits also included me in their promotional videos about hemophilia. It was a whirlwind time! I had two small children at the time, more books to create in the pipeline and a newsletter to produce, all done from home.

Guess what I found? Copies of the interviews and tapes. If you’d like to see them, go to our home page, click on “See” which will take you to our gallery, and click on “Videos.” You’ll see videos from the 1990s!

I did learn a few things: I never really liked giving interviews. Maybe it was just that I was always distracted with raising children and work (now I don’t mind at all). And when the PR firm thought it was a good idea to plug the product my son was using, I ended the corporate-sponsored interviews. It was interesting, to say the least! But I never went back on my personal policy of never personally endorsing a product. Enjoy the shows!

Hemophilia B: Her Voice, Her Life

SPONSORED CONTENT
 

This is a paid public announcement from Pfizer and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be direct to a Pfizer website LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.


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

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