Here, with his permission, is an email from Holly Youngs father. While I would prefer to cut and paste portions of this email, out of respect to her dad I have posted his email in its entirety.
Dear Curt and Shonda:
My wife Carolyn and daughter Michelle appreciate the kind thoughts from both of you , including the message on your blog and lovely arrangement you sent. We’re trying to see if any of the cousins have a picture of it. The funeral director did a wonderful job, perhaps motivated even more by the fact that he has a daughter who graduated from high school with Holly. His family goes to the church near the HS where Holly and some of her teammates frequently worshiped before going out together.
When it became apparent in the fall of 2004 that Holly had a leg injury, we identified with the injury you had just worked through during the World Series, and wondered if the diagnosis could possibly be the same. Her trainers had progressed through the modalities of treatment appropriate to their expertise before calling in the athletic department doctor, who confirmed the trainers suspicion of tendonitis. When Holly could no longer sleep at night, the health center said to see an orthopedic surgeon. She was seen by Dr. Ken Leavitt, a podiatrist in an office specializing in skeletal problems. In the day that changed our lives, Holly received x-rays, an ultra-sound and finally an MRI at 11:30 at night at New England Baptist. He was shaken; as a podiatrist he would never expect to see a case of Ewing’s sarcoma. He took it upon himself to arrange an appointment with the chief of orthopedic oncology at Beth-Israel. He instructed us to pick up the films at his office first, and when it appeared we would be late, called Holly’s cell phone. My GPS said we were ¾ mile away. He came out to the lobby to meet us.
Holly scanned her MRI films for her scrap book and named her tumor “tumoritis.”
Failure to diagnose is well documented in the medical literature on Ewing’s sarcoma, a rare pediatric bone cancer with symptoms which are frequently misleading. When not promptly diagnosed, it often confers a poor prognosis.
Here you are well positioned to make another contribution by helping to spread the word to athletes, trainers, coaches, doctors, administrators: if sports injuries are not getting better find out why. It could save a life.
We rejoice in the good news about another young Ewing’s patient, Peter DeSpain, whose cause you also championed in your blog last spring. I see he got a clean bill of health when examined last month.
We also rejoice in the victories Mike Lowell and John Lester have had over cancer. Professional athletes whose health is so important to their careers take advantage of the best diagnostic tools medicine can offer at the first sign of injury. Our adolescent athletes, used to playing through minor injuries, and maybe wanting to prove their toughness, often do not recognize a serious underlying malignancy and tough it out. Indeed, such conditions are often missed by trainers, coaches, and even doctors when treatment is sought.
How rare is Ewing’s? Consider filling Michigan Stadium (capacity about 107,000) three times with children and adolescents under the age of 21. Now pick one and say “You have Ewing’s sarcoma.” That is the national statistic. But on Cape Cod, Ewing’s has occurred at almost seven times the national average over a ten year period. In contrast, the Woburn leukemia cancer cluster documented in the film “Civil Action” was 2.3 times the expected level.
You saw young Jordan Leandre running the bases at Fenway Park during the Jimmy Fund Telethon last August. He had Ewing’s and lives 1.75 mile from us here in Dennis. Jordan has had a successful outcome, but last January we lost a young Cape Codder, Sandwich High School hockey player Jeff Hayes. Like Holly, he toughed it out until the pain was too great, and a cure could not be delivered. Jeff and Holly were diagnosed the same month. His bravery was honored by the Bruins during intermission of a game with the Penguins. Many of the Bruins rode in the Pan-Mass challenge to support Jeff. At the start of the 2006-2007 school year, Sandwich HS had three Ewing’s cases (two successfully treated) in its population of 1030 students; Jeff played hockey; one of the other two played field hockey.
I frequently surf the web searching for news of Ewing’s sarcoma. I often find other adolescent athletes across the country from football, hockey, soccer, and even ballet who have Ewing’s. Having become educated, trained, and experienced as a research scientist, I try to avoid unsubstantiated speculation, but it is proper to make scientific inferences to be tested later. My statistics are far from rigorous, and I understand a lot of youth are engaged in athletics, and maybe athletes get more publicity. But there is also an epidemic of childhood obesity, and I’m just not seeing “couch potatoes” getting Ewing’s.
Holly enjoyed the support she received from you (you replaced Johnny D), Tek, Wake, Coco, and many others I’m sure I don’t know about, because I wasn’t there. She started chemo the day after Wake brought the World Series trophy through Children’s Hospital. She was also fond of Mike Gordon, his wife, and particularly his children, who she adored. It was the tickets he gave the Jimmy Fund Clinic we took to the ring ceremony on opening day. He provided the tickets to the box near the dugout we had the night Wells was ejected; during the game Bill Mueller handed her a ball that had been foul tipped back to the on-deck circle. Patrick Foley came down to Children’s one afternoon with a package of Red Sox gifts. Please convey the appreciation of Carolyn, Michelle, and me to your teammates and the rest of the Red Sox organization for all the kindness shown to Holly over the last three years.
She also enjoyed the support of volleyball players at all levels, from as far away as China. Over one hundred college volleyball teams sent their team logos to UNH with players signatures and messages of support. Some were joined by teams from other sports. We hung them on the walls of the hospital room, and as the new nurses came on duty, would ask them where they went to school and look for their school’s messages.
Not just her coaches, of which there were dozens, but coaches of other sports came by Monday to offer their condolences. I was particularly happy to see Brown football coach Phil Estes, whose daughter Megan was the manager of Holly’s volleyball team. He recently lost a football player to Ewing’s. This fits into the theme I was developing earlier.
After hearing a dozen times how wonderful a girl Holly was, I realized that all these people had their own fingerprints on her life, and I made that my response. I also let the coaches and athletic director know my feelings…there are so many people demeaning athletics, but we have been fortunate to have experienced all the good that should come from sports, and have a responsibility to foster its continuance.
I have spent many hours these last few months in the living room where we set up a bed so Holly could be near all of us. I keep my laptop there, and have been analyzing data from previous Cape Cod cancer studies, and advocating for continued research. As tragic as these cases are, their study may result in the first risk factor being identified for Ewing’s sarcoma. To my left shoulder is the 8×10 framed picture from spring training of you with your arm around Holly.
As I said at the outset, I think you are well positioned to get the word out for the sake of the adolescent athletes: if the pain is not getting better, find out why.
Thanks again for all you have done.
For all of the family,
Bernie Young
