Page 4 - HFA Dateline 2016 Q3 Fall
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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