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A Message from Holly Youngs Father…

January 30, 2008

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
19 Comments leave one →
  1. navywife25 permalink
    January 30, 2008 10:39 pm

    First off, I want to let Holly’s family know that they are in my thoughts and prayers. Although I never met or knew Holly it sounds like the world has lost an amazing athlete with unimaginable strength and courage. Rest In Peace Holly!!!

    Secondly, I am a Sports Management AND Nursing Major in College and The E-mail to Curt from Holly’s father has piqued my interest in Ewing’s Sarcoma. The development, diagnosis, prognosis, treatment and circumstances around this cancer relate to both of my majors and I think that it is something well worth researching. I want to thank both Curt and Mr. Young for enlightening people about this cancer and the possible devistating effects (of which Mr. Young has personally experienced).

    I wish the Young family the best and I am extremely sorry for your loss.

  2. browns83 permalink
    January 31, 2008 9:44 am

    He mentioned that there is an unusually high prevalance of this disease in the Cape Cod area. Is there any speculation as to what would cause such a cancer cluster?

  3. ctsoxnation permalink
    January 31, 2008 11:46 am

    Good morning Mr. Young and the rest of the Young family.

    My Thoughts and prayers go out to you and your family. While I never met Holly the pain I sorrow I feel from reading your letter above is tremendous. She sounded like an extrordinary young lady. It’s always a sad day when we lose a member of Red Sox Nation, especially one so young.

    You are in our thoughts and prayers.

    Curt, thank you for passing this along. Best of luck in Spring Training and let’s win another ring for Holly!

    Regards,
    Derek – Barkhamsted, CT

  4. January 31, 2008 6:07 pm

    I, for one am glad that you reprinted in it’s entirety….he has much to say that should be heard for many reasons…

    It is frightening and saddening at the same time when you hear of “cluster” cases; I live in Wilmington, also once a “cluster” town – and it always concerns me. Truth be told – none of us are safe from cancers – but it is always disturbing when you hear of many cases of the same kinds in such a condensed area. I had heard many years ago that Sandwich was having issues, but not sure as to what would be the trigger?

    It is so disheartening when people live in an area that is so obviously a health hazard but with no real evidence as to the specific cause. And to lose so many young lives…no life you want to see go, but children are most especially difficult. And to me, Holly was a child…she’s younger than me, so hahaha, anyone’s a child to me at that point.

    But I digress…

    I think that it’s tremendous that people like your family and other figures in the sporting world of Boston take the time to touch the lives of people who aren’t well…it’s a humanity that so often gets overlooked when it comes time to think about the sport that is played. Sure, you all get paid well – but you give so much more in human kindness and spirit — and that alone is return in investment. At least in my opinion anyway.

    Be well. :)

  5. bidaskspread permalink
    February 1, 2008 12:48 am

    Sad story but hopefully something good will come of it.

    I did quick search and found that there are 3 PAVE PAWS Radar Stations in the U.S. In addition to the one located on Cape Cod, there is one located at Beale AFB in Yuba County, CA as well as one at Clear AFS, AK. After looking at the California Cancer Incidents website, Yuba County just happens to have the highest all-cancer mortality rate in CA. http://www.cancer-rates.info/ca/

    Could be a coincidence but on the surface it seems a little suspect. Of course, if this is the culprit, the federal government is going to avoid taking responsibility at all cost, and even more so given that these stations are a matter of national security.

    I sure am glad Santana didn’t end up with the Yankees…

  6. zman2676 permalink
    February 1, 2008 1:50 pm

    I was curious about the cluster thing too. It’s just me, but I’d only be drinking bottled water up there. Another concern would be the air quality etc…

    Random question, but is this the type of Cancer Bob Marley died from? His started out as a soccer related injury that developed into cancer, sounds similar.

    Anyways, my BEST to Holly’s family and friends

    Just when I thought it was getting annoying with the political talk around here…I’d prefer it over this.

  7. February 1, 2008 1:51 pm

    What can I say besides thank you for all that you do to help make people aware of this problem, and helping the youth to understand the importance of not trying and toughing out an injury.

  8. 1redsoxfan07 permalink
    February 1, 2008 2:03 pm

    Curt,

    Thank you for all you and Shonda do. I’m deeply moved by Mr. Young’s e-mail.

    I felt like I knew Holly from listening to the Radiothon on WEEI, could you please post the picture of you and Holly, if it wouldn’t be too much for you.

    I remember listening to Lisa telling us the story, and it moved me so deeply.

    Thank you and Good Luck in the season.

  9. February 2, 2008 9:29 am

    I want to send my condolences to Holly Young’s family. Thank you, Bernie for educating us on Ewing’s sarcoma. I really didn’t know anything about it before.

    I’m just so sorry you lost your dear daughter.

  10. ksteffens08 permalink
    February 5, 2008 7:24 am

    I know Holly’s Father has extended his deepest appreciation for everything you and your team has done for Holly, and I wanted to write you and thank you, as well. Holly raved about meeting you and your teammates to all of us. Her eyes would light up when she was telling us stories and she would post quotes from your blog and from conversations with her on her Facebook page, in fact there is one still on there now.

    It really is amazing when you think about the opportunities that organizations like the Jimmy Fund provide for individuals like Holly and how people who whole-heartedly invest their time in the cause can have such a powerful and positive effect on everyone involved. Holly absolutely loved every moment she spent with you and your teammates and I wanted to say thank you on behalf of the UNH volleyball team.

    Take care,
    Katie Steffens
    UNH Volleyball #8, Class of 2006

  11. rknight8700 permalink
    February 5, 2008 8:38 pm

    Curt,

    I feel for Holly and her family. It hits close to home for me. My brother Brian was diagnosed with Ewing Sarcoma at age 28. At first it was thought to be a knee strain. Finally after 6 months of treatment, a physical therapist found what was later identified as a tumor on my brothers femur.

    My brother was referred to Mass General. At Mass General he had some of the best Physcians, Nurses and support staff in the world treating him. After numerous surgeries and many rounds of chemo and radiation the disease continued to rebound at greater strength them previously.

    It got to a point where nothing was working anymore and my brother needed to make some end of life decisions. My brother was getting tired of the daily trips from the Merrimack Valley into Boston.

    My brother then became seriously ill in August of 2003. He was seen at Saints Medical Center in Lowell. He was given news that the cancer had taken over his lungs and tbe end was near. An oncologist from Saints came in on a consult. He was friendly with my brothers primary MD @ MGH. The MD wanted to create a chemo cocktail that my brother not had in the past. My brother was told that the cocktail may cause serious cardiac issues and may cause death. My brother knowing the end was near agreed to the cocktail.

    Within weeks the Cancer began to disappear. Within months my brother was travelling, went to Red Sox Playoff game against the yankees, went to europe, and took a cruise. He also was able to meet my 1st son and be his godfather.

    My brother continued with chemo once every 2 weeks and was doing well. His quality of life was good. He returned back to work and was able to be with friends.

    This lasted for a little under a year. The cancer came back and it came back strong. It was so persistant that no treatments would work and it had spread to the brain. My brother passed on in June of 2006.

    From what I have read about Ewings is that in many cases it is gentic and can skip generations. I worry about my childrens and all other children out in the world today who risk the chance of being diagnosed with this and other cancers.

    I spent many days at MGH and at Saints Medical Center with my brother during his treatments. I saw people from all walks of life. The ages ranged from infant – senior citizen being treated for one type of cancer. It was very depressing witnessing this. I felt in a way guilty for the youth of tommorrow. We can send a man to the moon and sail around the world yet we are having a tough time curing cancer and other diseases.

    My brother and I did take in a few sox games while he was ill. My brother did not have much money and at times I found myself or my mother paying his bills. We had battled Social Security to put him on disability and at times I found myself wondering how people who don’tg have insurance or a higher income make it through it all.

    My brother even though he had little to give financialy he would always go out of his way to give to the Jimmy Fund, Make A Wish Foundation and American Cancer Society. It always irked him when he saw kids suffering.

    I ask all people who read this blog to always donate to these and other worthwile causes. Cancer Research and the comfort of those who have cancer costs a lot of money. The support network for the people who take time becoming the at home care givers also could use some assistance. Many people are forced to leave their jobs, mortgage the houses to the hill and find other resources to by medications that may not be covered by insurance.

    Join a local Cancer walk. There are many of them throughout the year. Contact you legislators to make sure they know how important it is for someone who has a terminal disease that there be an easier process for obtaining public assistance or disability. Make sure when you talk to your legislators tell them you would like to see more money earmarked for research with cancer. There are great hospitals such as Mass General, Dana Farbor, John Hopkins and St Jude making great strides however they also need your support. Support you local community hospitals. They are the core for treatment of most people who have cancer. Thanks for you time and good luck during 2008

    Ron Knight
    Rknight8700@yahoo.com

  12. mattlenny permalink
    February 7, 2008 7:13 pm

    Curt and Mr. Young,

    Thank you for sharing this e-mail with us. As a high school (volleyball) coach I am always looking for more information so the girls will always get the best coaching from me and my staff. This has certainly opened my eyes. And please accept my deepest condolences to the entire Young family.

  13. sroger14 permalink
    February 8, 2008 12:38 pm

    Hi Curt and Shonda. My name is Cindy Rogers (Brewer). Shonda’s granddad Charlie was my Uncle Charlie (I saw you there at the funeral, but we weren’t introduced. I was there with my dad and a few of my sisters). My dad was George Melvin Brewer, Sr. (Uncle Charlie’s brother). I’m the youngest of Melvin and Ida’s 6 kids,(Doris, Diane, Nancy, Sissy, George and myself). Youngest – ha-ha – I’m 52 now!! I wanted to talk to you about two things.

    First, I thought it very interesting about all the articles in your website about Ewing’s sarcoma. I’ve worked at Hopkins Hospital Pediatric Orthopaedics for 34 years. I’m not a doctor of course, (secretary), but I’d bet my bottom dollar that my cousin Steven Brewer (Uncle Charlie’s son who died at age 13) had Ewing’s. I remember going through all that when he was sick because I was 11 or so at the time and we used to go down there all the time to see Steven when he was sick. After my boss treating many, many patients in our department with Ewing’s it all looked so familiar. However, unfortunately, back then it wasn’t treatable. I’ve always thought about how if he had just been born 5-10 years later, how he probably wouldn’t have died. It was so very sad. Just thought it was interesting though about all the articles.

    Anyhow, I was wondering if I could ask a very small favor. I’m sure you have people that do these things for you, so I hope it’s not a bother for you or your family. My son Nicholas (12 y.o.) has been diagnosed with a bunch of medical disorders (genetic disease, sensory integration disorder, hypotonia, fatty liver disorder, hypothyroidism, anxiety (due to all his medical issues). Thank God none of these have turned out to be life-threatening, but they do require alot of medical interventions. He’s a good boy and the love of my life. However, because he’s a “little different” from the other kids, he has alot of problems with bullies and issues like that at school. He has friends, but you know how teenagers in middle school can be. He’s not very sports oriented because of his low muscle tone, but he does like basketball. However, like all kids, he likes celebrities!!! I cannot tell you how excited he gets when I tell him that Shonda’s mom and I are first cousins!! He gets such a kick out of it. I was wondering, if it wouldn’t be too much trouble, if I could get an autographed picture of you to give to Nicholas. He’s such a good boy, and he’s so brave about all his medical appointments getting blood drawn every 3 months, missing Halloween last year before of being in the hospital, etc. He never complains and rarely feels sorry for himself. However, he does get depressed sometimes about the problems with the older kids at school.

    I just think it would give him such a “lift” to get one of these from you. I know how busy you are, so I understand if you can’t, but I thought maybe you had people that did these kinds of things for you. I didn’t want to ask anyone in the family because I’m sure they get bombarded all the time with requests for things to do with you. I hope I’m not overstepping my boundaries. Thank you so much for anything you could do. Hope all is well with you and your family. I’ll be praying for you and your shoulder!!! Thanks!! Cindy (Brewer) Rogers

    I can be reached at sroger14@jhmi.edu or at home sroger14@peoplepc.com. If someone could let me know, I’ll forward my address by e-mail. Thank you so much for your time.

  14. doctordavid16 permalink
    February 9, 2008 10:40 am

    Dear Curt and Shonda,

    Thank you for sharing that email with the world. Speaking as one who cares for kids with Ewing’s sarcoma, I can tell you that the lack of awareness is such a huge barrier to early diagnosis, and the more people know the better. When a celebrity puts his weight behind something like this, awareness goes up and lives are saved.

    Perhaps even more important than awareness is research. Although we continue to make progress curing patients whose Ewing’s sarcoma is localized, kids who present with metastatic disease or whose cancer relapses do dreadfully… hardly any are cured. More work is urgently needed, and the funding for that is lacking. Think back to the example in Mr. Young’s email. If one of the people in that group has Ewing’s sarcoma, if those 300,000 were women, 30,000 would have breast cancer diagnosed at some point in their lives. So where does the research money go?

    The impact of celebrities on these issues is enormous. Raising awareness raises the profile of the disease, prompting interest, and dollars follow.

    So thank you so much for this.

    David Loeb, MD, PhD
    Assistant Professor, Oncology and Pediatrics
    Director, Musculoskeletal Tumor Program
    Johns Hopkins University

    http://doctordavidsblog.blogspot.com/

  15. marjoriehunter permalink
    February 25, 2008 12:18 pm

    Hi All,

    I too am concerned about the lack of funding and education for Sarcoma. Our family was affected by Sarcoma. My sister Jen died in April 2004 of two different types of it. Since then friends and family of Jen have established The Jennifer Hunter Yates Sarcoma Foundation, Inc. We have a yearly walk in May which all of the proceeds go to the Sarcoma Center at Massachusetts General Hospital. To date we have greatfully been able to give MGH over $300K for research, education, and support of sarcoma patients. If you would like more information please visit our web site at http://www.jenniferhunteryatessarcomafoundation.org/ .

    Regards,
    Marjorie Hunter

  16. brian1963 permalink
    February 25, 2008 5:38 pm

    Curt and all. I am a 30 year survivor of Ewings. I was diagnosed at 14 in Mesa, Arizona and treated for two years in an experimental program monitored by a research hospital in Texas.

    During my time since diagnosis, I have met five other Ewing’s patients, and unfortunately, only one of them is still with us today.

    with a 98% mortality rate, Ewing’s is bad news for any family.

    It is my warmest hope that you all find peace and warmth in your memories of Holly. I am certain that the world is a slightly colder, more empty place than it was before.

    Someday we’ll all be able to celebrate that the cause and the cure has been found so no other family will have to endure this.

    Brian
    Apache Junction, Arizona

    Miss you Curt! Hope you and Shonda and the kids are well!

  17. empy permalink
    March 13, 2008 12:54 am

    Hi Curt…thank you so much for sharing this information. I am an osteosarcoma survivor, and I was lucky enough to see an orthopedist who took the time to order a simple x-ray. An x-ray is not expensive, and it doesn’t take much time to have done either. Of course, if there is no one with experience reading the x-ray, it can be misread. Lucky for me, my tumor was obviously a tumor, so I was referred to an orthopedic oncologist immediately. What scares me is that sometimes regular orthopedist decide to go in and start performing surgeries on these tumors without taking the proper precautions….but I digress.

    I have posted the stories of more than 100 bone sarcoma survivors at http://abc-survivors.net , and there are so many who deal with delayed diagnosis and misdiagnosis. There are also many who have excellent treatment but still end up with recurrences. This disease is aggressive, and Dr. David is right – we need the research funds! I recently entered the Liddy Shriver Sarcoma Initiative into the Facebook Giving Challenge, and we were able to raise $17,000 and win an additional $13,000 for sarcoma research. The Liddy Shriver Sarcoma Initiative gives at least 97% of donations to peer-reviewed sarcoma research grants. I’m excited to be participating in the international Team Sarcoma Initiative this summer, and I hope that others will participate as well. Together we can make a HUGE difference!

    Much hope,
    Mary Sorens

  18. Molly permalink
    May 16, 2009 8:44 pm

    Curt,

    I can’t thank you enough for posting this letter. I grew up with Holly Young and worked with her at the beaches in Dennis and I can say without hyperbole that she was the kindest, strongest, most caring person I have ever met. She was a role model for everyone who knew her both before and after the diagnosis.

    I’m currently a student at Boston College and one of our own football players, Mark Herzlich, was just diagnosed with Ewing’s Sarcoma this week. When I heard of the diagnosis, I immediately thought of Holly. I reread this letter and now I understand what Mr. Young was saying about the prevalence of this disease among athletes. Mark and I were both juniors at Boston College this past school year and I only know him through seeing him around campus occasionally and watching him destroy opponents on the football field every week. It’s hard for us to imagine that he won’t be out there next year.

    I’m studying nursing at BC and have picked orthopedics as my specialty. I will take my experience of Ewing’s with me in my practice.

    As said before Curt, you have the ability to draw attention to illnesses like Ewing’s Sarcoma. I remember hearing Holly talk about you at work and your friendship with her did not go unnoticed. I know that Mark will approach cancer the same way he approaches football: with strength and fortitude. In the meantime, I hope that Mark’s diagnosis increases the need to perform simple MRIs when young athletes experience pain that doesn’t go away.

    With hope and love,
    Molly

  19. Dani Ramsey permalink
    October 25, 2009 6:54 am

    My son (15) has Ewing’s Sarcoma. I need more help with research, and would like to be able to contact Holly Young’s father, or anyone else who might be able to help us. We have treated Micah naturally for 3 months and truly thought he was doing very well, but have recently come to the understanding that his tumor is the size of a football (located in the chest cavity). Any input would be greatly appreciated. Thank you.

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