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

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!

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

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/

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.

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.

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

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

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

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.