Page 4 - HFA Dateline 2016 Q3 Fall
P. 4

EXECUTIVE CORNER




        Dear Community Members,


             ur  first  trip  out  as  a  family  after  we  brought  Nicholas   Nicholas grown, but his dad and I had grown a lot as well. Our
        Ohome from the hospital was to our HTC. A few of the    growth was more emotional than physical and that emotional
        typical warning signals had gone off at the hospital that our   development we can credit in large part to those kind, caring
        newborn baby could have some clotting issues and a blood test   people at the HTC. Yes, those same people we really didn’t
        revealed he had a very high clotting time. Your first trip out   want to have to see on a regular basis. Now I can’t imagine our
        with a newborn is an experience in itself. Having it be to the   lives without them.
        Hematology/Oncology unit at your Children’s Hospital is not   Time can give you perspective on so many things. In this is-
        ideal for a woman who’s just had her first child.
                                                                sue, we look at the what we’ve learned through Project CALLS
        As we were waiting to be called, a nurse came out for another   as we continue to build cases for change for the community
        patient and was just so excited to see her. She marveled at how   (p. 14). We also take a deep dive into the data we’ve pulled from
        much the child had grown and how wonder-                                 the Helping Hands program as we bench-
        each other, with teary eyes, and said that we  “ Yes, those same people   mark our efforts to further assist families
        ful she looked. My husband and I looked at
                                                                                 facing financial hardship (p. 17). I’m grate-
        didn’t ever want them to talk to us like that.   we really didn’t want to   ful for the community members who have
        We knew that in order for them to talk to   have to see on a regular     taken time to share their stories with us,
        us like that, they would have to really know   basis. Now I can’t imagine   including David Tignor who discusses
        us—and for them to know us that well meant                               how he copes with pain (p.19), Kari Peepe
        that we’d have to have spent a lot of time   our lives without them. ”   who highlights a women’s retreat where
        there. This was definitely one place we did                              nutrition  and  peer support  was at  the
        not want to spend a lot of our time. It was nothing personal   forefront  of  combating  anemia  (p.  24),  and  Shari  Luckey,
        about anybody there, but we didn’t want to have a need to be   whose heartwarming story about the adoption of her son Luke
        there.                                                  gives us all hope for the children who don’t have access to
                                                                medication or a loving family (p. 11).
        At that point, we didn’t yet know that we wouldn’t have a choice,
        that we’d end up spending lots of time at what we would come   And finally, the hemophilia community lost a true champion
        to refer as “our” HTC. Never in our wildest dreams did we think   recently: blood brother John Reed. John had a childhood simi-
        our little baby would end up getting so many needle sticks that   lar to so many blood brothers with limited physical activity,
        we came to be on a first name basis with all the members of   painful injuries, and too many days hooked to an IV pole. But
        the IV Therapy Team. In fact, we were such frequent fliers, we   what John also had was a remarkably positive attitude and the
        had no problem asking who was on duty and requesting our    belief that you shouldn’t focus on the bad but be thankful for
        favorite. But we did on numerous occasions.             good. A remembrance of this exceptional man can be found on
                                                                page 26. While this has been a difficult year as we mourn the
        Fast forward 13 years to a few months ago. It had been quite
        some time since Nicholas had had a factor recovery study done   passing of many men, young and aging, in our community, it
        and the doctor felt it was time. The study was going to take   is together as a community that we must carry the pledge to
        an entire day and Nicholas was not happy. I wasn’t too thrilled   never forget.
        about it myself, but we had no choice so I kept my thoughts to   Warm regards,
        myself.
        When we went to our HTC, the conversation I heard was pretty
        close to the same I had heard during our first visit so many   Tracy Cleghorn
        years ago, except that this time they were talking to my son.   Board Chair
        They expressed shock at how much he had grown since his
        last visit and gushed about what a handsome boy he was. Once
        again, I had tears in my eyes, but this time, along with the
        tears, I had a smile full of pride and happiness. Not only had

        4       Dateline Federation | Fall 2016
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