Entries in Our Guest Book

Entries in Our Guest Book

The entries in our guest book appear in the order in which they were entered, from the first one to the most recent one. Use the scroll bar to the right to scroll through the guest book entries.

Name: Jodi S.
Date: 30 Nov 2003

Liddy, you are quite an amazing and inspirational woman. Keep up the great work and keep on peddling! Best regards.

Name: Dick Eckhouse and Ruth Maulucci
Date: 08 Dec 2003

Dear Liddy, Our thoughts and prayers have been with you and the rest of your family during these most difficult times. We rally with the good news and feel cheated with the bad, but we always feel a part of your battle to fight this most awful disease. No one in your family faces each day as you do, but the combined strength you draw from them and your now extended family certainly must be a help. You are not alone even though you probably feel so at times. Let us not dwell on these things but remember a beautiful life and the time we first met you. Having three brothers such as Bruce, Mark, and Matthew singled you out as someone special as only a daughter can be. From times in the projects in Buffalo, to a life in Louisiana, through marriage to Tom in New York, and a Ph.D. along the way, you have been a shining light in your parents', Beverly and Bruce, eyes. Your bicycle riding, your international fund raising, and the on-line journals have helped us all understand your drive and motivation, and to get to know you better. You have given us hope and compassion. Sharing your life with us has been wonderful and we love you all the more for it. Love, Dick Eckhouse and Ruth Maulucci

Name: Lois Deberville, Washington, VT
Date: 26 Dec 2003

I wish for you all to attain a level of understanding and peacefullness that will fortify and sustain you.

Name:Michelle
Date: 28 Jan 2004

laundered linen sheets touch me with their coldness and thoughts i can't repeat shock me with their boldness why did my mind believe that you would never leave who would steal you i still feel you now you're gone these are lies it's not real this is more than i can feel this is wrong now you're gone i work hard to carry on if you could've seen how i've been then you'd know how much you meant you couldn't know what you mean to me dreams destroyed at the seams all is lost and life's not fair still, i see you there

Name: christine
Date: 13 Feb 2004

Hello My name is Christine I am sorry for your loss I losted my son Cory age 17 to ewings last Jan. 21stMay god hold you in the palm of his hand and keep you safe in these hard times god bless thank you

Name: Geoge
Date: 22 Apr 2004

Look into the sky and there will always be that extra star flickering from the heavens. Liddy will never be forgotten as long as she lives in yor hearts. Most heart-felt regets at your loss. George Quinn & family England (U.K.)

Name: jackie ferretti
Date: 28 Apr 2004

i read the article in today's journal news. i know a young person who has been battling Ewings Sarcoma. It has been rough but so far he has made it (one more round of chemo). your web site is so informative and the love you have for your daughter shines through with very word. i wish you all peace at heart and to let know the work you are doing in your daughter's honor is truly appreciated thank you!!!

Name: Payal
Date: 03 Jun 2004

Its been months since I last had the courage to come back here. I miss you Liddy. I saved photos from your journal to my computer and I go through them sometimes .. remembering all the time you spent with me in Lucent and at your home. I hope you've found peace and freedom from pain.

Name: Donna Jauregui
Date: 19 Jul 2004

Dear Bruce and Bev, This is Donna Jauregui, your cousin and godson's Peters' wife. I received this info from Bruce, hopefully on purpose and not in error, as I have been so touched and moved by Liddy's story and your family's struggles throughout Liddys fight for knowledge and treatment and most of all, her life. I look up to you all as I know the journey has not been an easy one, but one I am sure has educated you and as you said, helped you grow as a family. Her life can be one of inspiration and admiration, for she was a woman of much courage. What you are doing in her honor will more than help others, it should surely change someone if not many lives. I just wanted you to know I was here and will continue to pray for you and the success of this website and the Liddy Shriver Sarcoma Initiative. We will talk to you, hopefully. May God Bless you both and your family as well. The Lords Peace to you both. Donna Jauregui

Name: Pam Archer
Date: 07 Oct 2004

Dear Bruce, We are on the Rhabdo kids list as our son Jason has Stage 4 Rhabdo - relapsed (dx 2/6/04). Thank you for all you do in honor of Liddy. I hope that someday soon that real progress is made to help those with the more advanced stages of disease. I just know that with more funding (as you all raise funds, also) that something good will happen. God's blessings to you and all you love.

Name: Zahida
Date: 18 Oct 2004

My name is Zahida and I am from pakistan. I am deeply sorry for your loss. My nephew Noman who is just 13 is suffering ewings sarcoma. He is having chemo and going to start radiation. I was looking some article for him when I read about your irreversable loss. I pray for you to be able to bear it, may God Bless you and held you to walk on this road of memories. Please remember my nephew in your prayars as well

Name: Lawrence Rubida
Date: 28 Oct 2004

I am 22 years old and was diagnosed with Ewing's in May of 2004, three weeks after participating in the Brown University football team's spring game. I am/was an offensive lineman (right tackle) and my cancer was initially very aggressive; it has metastasized and one part of the tumor on my pelvis was the size of a football. I am being treated at Lucile Packard Children's hospital at Stanford. They are worldwide leaders in the treatment of Ewing's sarcoma and the people who work there, from the doctors to the pharmacists and lab technicians, are absolutely wonderful. I am doing well and will continue to fight, but I would also like to help and hear from others who are currently, or have previously been affected by this disease. You can contact me at Realbored@aol.com.

Name: SHEILA
Date: 05 Nov 2004

HI MY NAme IS SHEILA. I LIVE IN HILI HAWAII.I AM SO VERY SORRY IN THE LOSS OF YOUR DAUGHTER. SHE SOUNDS LIKE SHE WAS A GREAT PERSON. MY BEST FRIEND KAREN WAS JUST DIAGNOSIS WITH PRIMITIVE NEURO ECTODERMAL SARCOMA. SHE HAD A LITTLE LUMP ON HER HAND. WHEN THEY SENT IT OUT FOR BIOPSY THEY FOUND OUT THAT IT WAS CANCER. SHE IS ON HER SECOND CHEMO TREATMENT.KAREN IS 35 YEARS OLD ALSO AND SHE IS SUCH A BEAUTIFUL PERSON.I JUST CANT BELIEVE IT. I REALLY WOULD LOVE TO TALK TO YOU GUYS. I WANT TO KNOW HOW YOU GUYS DEALT WITH IT.THANK YOU SO MUCH AND MY PRAYERS GO OUT TO YOU GUYS.

Name: Don & Marilyn Eby
Date: 02 Dec 2004

Liddy was a courageous young lady who kept fighting until the end. She is an inspiration to all of us.

Name: Natalie
Date: 14 Dec 2004

Thank you so much for sharing your incredibly personal experience with the world. i am fifteen and I have metastatic es. I appreciated your honesty and that the sight was not "sugar coated" with ideas for alternative treatments that don't work. I also appreciated Liddy from what i read! I guess I am not the only one to write lists for my many doctors! Keep on fighting, on day Ewing's Sarcoma will be as easilly treated as ear infections. Until then, peace.

Name: Alison Stefanello
Date: 01 Jan 2005

Thank you for allowing me to make an entry into your guestbook. Liddy has obviously left an indelible mark in the lives of many. She was much loved. My 20 year old daughter, Michela, was dignosed in July 2001 with Ewings in the pelvis. Just recently we have learned of metastatic spread. The battle for us is not over, we continue to keep her as well and as happy as possible. She too is an inspiration and has given so many gifts of wisdom and love to those who know her. My thoughts are with you. Alison Stefanello Bowral NSW Australia

Name: Michelle A.
Date: 10 Jan 2005

An amazing tribute to our cousin, Liddy. Thank you for creating such a resourceful and thoughtful website for others to benefit from.

Name: Peter Henderson
Date: 11 Jan 2005

Hi Bruce, I just found out that Liddy had passed away. I was going to send her email to get her advice for a blind student we have entering Butler University in the Fall 2005. Liddy was one of my computer science students at SUNY Stony Brook. She was amazing, never letting her vision handicap get in her way; so I can imagine how she responded to her cancer. I still use her examples and many of the lessons I have learned from her in my classes today. May she rest in peace and be an eternal inspiration to all.

Name: Valerie
Date: 01 Feb 2005

Thank you for opening such an intensely personal window so that others may enjoy the blessings that are hidden deep within the dragon known as cancer. My sister is - as I type this - undergoing intensive chemotherapy for Synovial Sarcoma - the cancer recently returned to her lungs and knee - on the amputated leg. She was diagnosed with this one year ago - USC feels chemo is the way to go and she said she's doing it for the family - so that we will feel she did everything she could. I told her please don't do anything for me - it isn't important to me that you endure any misery to "prove" anything. I've discovered who my true friends really are throughout this - and I believe she has to. God bless your daughter - she lives on in this website!

Name: Karen (Scotland)
Date: 03 Feb 2005

My darling son Ryan (18) has relapsed . . 2 new tumours, having been free for 11 months.....Oncologist states 'life prolonging not saving' I am so so scared of what the end will bring for him & for my other children who love him so much ! ...reading your story breaks my heart but I am deeply moved by your words on Liddy's passing God bless all of you x

Name: trish
Date: 06 Feb 2005

my name is trish, and in sept 2005, my fiancé was diagnosed with angio sarcoma of the right thigh. So far they have done a resection of the thigh, in order to save his leg, they took his stomach muscle and placed it in the thigh, to cover just the area where the bone was showing. The tumor was high grade and I believe 19cm. He was to start radiation this week, although he is now back in the hospital for a new biopsy. which means the longer it takes the wound to heal the longer he puts off treatment. with the chemo, there is such a controversy. I wish there were more answers out there. take care.

Name: charles nearburg
Date: 12 Feb 2005

I am very sorry for your loss. We lost our son Rett on 1-14-05 after he wagged an 11 year fight with Ewing's. He was 10 when first diagnosed. We learned of Liddy on Planet Cancer. Your site is very nice. Thank you Charles Nearburg

Name: Tim Pray
Date: 23 Feb 2005

I look forward to helping the Initiative by joining the Riders in Cycle Zydeco 2005.

Name: Pat Casey
Date: 24 Feb 2005

Dear Shriver Family, How well I know your loss... And how proud your dear Angel Liddy is of Mom and Dad for working so hard at raising dollars and awareness to help fight this wicked, rare disease, Sarcoma! Your Web Site is wonderful. Congratulations on a well done job. Keep it up! Pat Casey..Mom to Angel Shannon, who lost her life to Osteosarcoma at the age of 31. and member of Golfers Against Cancer.

Name: zhangming from China
Date: 08 Mar 2005

I don't how to say and just feel so sorry for your loss of your loved daughter. I major in the biotechnology and hope to try my best to find the efficient drugs. My father unfortunately caught the leiomyosarcoma and I wonder if it is so severe and any help from the world will be so appreciated .my email is islandchang@hotmail.com At last ,Best wishes for Shriver family and for those who have the love heart.

Name: Rene A. Giacalone
Date: 26 Mar 2005

I found your website doing one of my random cancer searches. My daughter, who is now 9, was diagnosed with Ewing's Sarcoma at the age of 7. After surgery to remove her tumor from her spine, a year of chemotherapy and radiation today she is doing well. As you know all too well however, we can only live one day at a time. We too started a foundation The Honeysuckle Foundation for Children with Cancer www.honeysucklefoundation.org and work supporting the psychosocial program at a local hospital in New York. Our way of giving something back and appreciating our blessings. I am sorry of the loss of Liddy and commend you for your commitment to help others. I guess this is the silver lining of cancer's black cloud.....

Name: Shawn Fleming, Louisiana
Date: 31 Mar 2005

Dear Shriver Family and Tom, It was great to see your enthusiasm and spirit fulfilling the mission of Liddy. Unfortunately I had lost touch during Liddy's suffering to provide my support and prayers. Your family is remarkable in how it understands that suffering and death provide moments to cherish. As strange as it sounds the most vivid memory I have of Liddy is when visiting your house in Ossining and Bruce and I were preparing to go out. While ironing my clothes Liddy asked whether I was going to iron my underwear. Apparently some guys she knew in New York did this and she wanted to make sure it wasn't normal (why she would use me as a basis for normalcy is not clear). I am very sorry for your loss of such a beautiful daughter. She will be missed but thanks to your continuing efforts certainly not forgotten. It is great to see the family joined together in continuing her cause.

Name: jennifer
Date: 03 Apr 2005

Your beautiful daughter is not forgotten. She doesn't have any need for a bike now. Her spirit soars. God bless you in your season of sorrow for your precious child.

Name: veronica murillo
Date: 13 Apr 2005

My deepest condolences go out to you. I admire her courage and strength for continuing to fight what seemed to be a losing battle. It was a very admirable one. I hope to find the courage to fight as hard as she did.

Name: Edward Briggs
Date: 18 Apr 2005

I am the spouse and carer of Jennifer Briggs who in 2003 was, incorrectly, diagnosed with a chondrosarcoma and again in 2004 before the medical team sent samples of the surgically removed tumors to, amongst others, the Mayer clinic in New York who correctly diagnosed the tumors as osteosarcomas. A third operation is now proposed and we are to see a different oncologist for a 2nd opinion. We shall see what this brings!

Name: brian shriver
Date: 12 May 2005

Very nice work.

Liddy's cousin in florida brian shriver

Name: Julie Slone
Date: 17 May 2005

Dear Bruce and Bev, First of all, let me say how I am sorry about the loss of your beautiful daughter Liddy. My name is Julie Slone in Pataskala, OH and my family just lost my nephew Kevin Willis to Ewing's Sarcoma on April 21, 2005. Kevin was a beautiful little boy that fought his cancer for 14 months, always smiling and laughing. He never complained, but just couldn't fight this monster. His caringbridge website is http://www3.caringbridge.org/oh/kevin11/ if you wish to visit it and read about Kevin's journey. Our family is extremely impressed by what you are doing to honor your daughter's memory and continue the fight against Ewing's Sarcoma. If at all possible, could you contact my sister Lisa and her husband Greg at kewillis@verizon.net? We as a family are interested in how we can contribute to children's sarcoma research and thought Liddy's foundation was the best to get funds directly for Children's Sarcoma research. Lisa and Greg are also grieving horribly over the loss of their son. I think it would mean a great deal to them if they could speak to another couple that lost a child to cancer. Although we as a family are grieving Kevin's loss, there is no way for us to understand what a parent feels. Thanks again for all your are doing for Children's Sarcoma research. And, if you have a moment and can write to Lisa and Greg, I think it would mean a great deal to them. If you wish to contact me, my website is desilucy03@netscape.com.

Name: Jo Ann Peterson
Date: 13 September 2005

Dear Bruce,

I would like to say thank you for sharing Liddy's story. I will take more time to read every entry she wrote. Every word on this web site. As I feel each and every person who has traveled this journey has a wealth of information to share. I will contact you again soon. Much hope & prayers for everyone that has fought or is fighting this disease,

Jo Ann Peterson

Amanda's Ms. Jo Ann who lost her fight to Osteosarcoma June 7th, 2005 age 17

Name: Robin and Richard Bambach
Date: 2 October 2005

Hello to Liddy's parents. We met you on the bike trail today (Sunday, October 2, 2005). We were enjoying our lunch on Liddy's bench. It was a pleasure to have met you, and we will make a point of staying informed about sarcoma. My Mom has a form of lymphoma, so this is a subject that hits close to home. Keep well.

Robin and Richard Bambach

Name: Uta Hengst
Date: 13 October 2005

Dear Shrivers,

I've found this site and I'm deeply touched by this enormous energy Liddy had to the last. I survived my fiancé Henning who had leukemia. He was too fatigued to communicate a lot. Reading Liddy's blog made me think, maybe that's what it was like for him. Thank you for this site, and all the best for your work.

Uta (writing from Marburg, Germany)

Name: Randi Nelson
Date: 6 November 2005

Liddy was an extraordinary person and an inspiration to all, especially to those touched by sarcomas. I do hope my 23 year old son, Jason, will not have to endure such hardship as your Liddy did. He was recently diagnosed with Myxoid Liposarcoma in the thigh. The tumor was 8cm and was surgically removed first at a local hospital and then he an additional surgery at the Cancer Center after the biopsy report from the first surgery came in. We quickly pulled him out of school and flew him down to the Cancer Center in Salt Lake City. He is being treated at the Huntsman Cancer Center now undergoing radiation. He is anxious to get back to the University of Idaho where he is studying architecture. He was very disappointed when he was forced to drop out this semester. I pray all goes well and that he can get back to “his little world” on campus. I pray for positive tests in the future although I am frightened, I cling to my faith and love of the Lord. Jason has a positive attitude and I am very proud of him. We are certainly blessed to have such wonderful children. God Bless!

Randi Nelson (Pocatello, Idaho)

Name: Margie Brockmeier
Date: 9 November 2005

Dear friends,

My husband was diagnosed with a spine sarcoma in Jan. 05. He has since had one surgery to remove as much tumor as possible and had two vertebra and 3 disc removed with metal replacement. He has had radiation and Cyber Knife treatment and is getting ready for a second surgery in Dec. I read Liddy's story and was very inspired. Thank you for the information on this website, it is a great help for a very frightening situation. Love to all. Margie

[Second note] Your website is so inspiring, and it sounds to me as if Liddy had a very special gift and a very special family. God blesses us all and is there to guide us in all that we do and all that we are given to cope with. I thank you very much for responding to me and may peace be with all of you.

Name: Susan Hunt
Date: 29 November 2005

Hi Shrivers,

My group of student radiographers from a unit in UK found your site an invaluable source of information in putting together a poster to inform our peers about osteosarcoma. By making others aware of the symptoms and signs of osteosarcoma, we may be able in the future to save others from the fate that befell Liddy. We would like to thank you both for all your research and information and we hope that by knowing that others are benefiting from your loss, Liddy's passing was not in vain.

Sue H

Name: Tim Frazer
Date: 6 January 2006

A very touching story. People Like Liddy are absolutely amazing!

Tim

Name: Katherine Loy Stadler
Date: 7 January 2006

Extraordinary! Thank you for the compassion and love for us all that is reflected in your personal journey and the references.

God bless!

Katherine

Name: James A. Walsh
Date: 11 January 2006

Dear Shrivers: Thank you so much for sharing Liddy's story and her initiative. As a 37 y/o Ewing's Sarcoma patient, I cannot tell you how much I appreciate your website and the information it provides. I've been searching for information on this rare tumor and found myself alone as an adult with this disease. It has recurred twice since my first diagnosis in 1997. In eight years, I have exhausted just about every chemotherapy/surgery/radiation option, but remain hopeful. Thank Liddy for me. She is an inspiration for me to keep going.

James

Name: Michael Wackers
Date: 24 February 2006

Dear Bev & Bruce,

Reading the moving and inspiring story of Liddy's brave and courageous struggle with her cancer, one cannot fail to question the fairness of it all.

Especially in view of the fact that the most detestable members of the human race: mass murderers, sadistic serial killers seem to enjoy living to old age without any serious illnesses, while a precious, wonderful human being like your daughter is snatched from our midst by the grim reaper in the disguise of another serial killer called SARCOMA.

I believe the diagnosis of 'cancer' is easier to accept and bear, when you have reached the age of 75, 80 or 85 and you are nearing the end of your biological life expectancy anyway. NOT SO with a beautiful, vibrant woman in her prime like your daughter Liddy at the age of 37!!!

However I do hope, you can derive some comfort from the thought that she lived to be at least 37, and you are left with a host of wonderful memories, unlike the parents of children suffering from pediatric cancers.

It is great and exemplary how you have managed to channel your grief, sadness and frustration to create something as inspiring and helpful as this excellent website which will continue to be a worthy and lasting virtual memorial to your beloved Liddy.

I myself was diagnosed with a liposarcoma in my right thigh at the age of 39. I did not have to put up a brave fight with repeated chemotherapies, but the solution to my sarcoma was literally clear-cut. I was lucky, being able to have my leg amputated to get rid of the primary tumour for good.

Wishing you both All the Best for the Future, continued success with your website, and above ! all, Good Health!

Take care, and God Bless!

Mike

Name: Jay Ozcelik
Date: 1 March 2006

I have so much to say but will keep it short as you must be bombarded with message of support and love.

My wife was recently diagnosed with liposarcoma in her left thigh. We live in Sydney Australia. We have no local chapters for Sarcoma support in Australia. I will look into working with you to start a chapter here, once things settle down.

God bless you for the good work you have done with informing us patients and care givers.

Regards,

Jay

Australia

Name: Betty Newton
Date: 10 March 2006

I too have a daughter that has been stricken with sarcoma. Her type is leiomyosarcoma of smooth muscle specific type. "NO! What is that?" I only knew it was Cancer. She was 36, married with a 3 year old son and 6 year old daughter. Now at 40 the fight continues. It has been an amazing, soul searching and educational (not nearly enough education material) journey. Like your daughter, mine is brave, outdoor loving, fun, productive, and a joy to all those who touch her. Oh how I know the heartache! Watching---praying---She is fighting so bravely with every ounce of her strength. Thank you for the gift of a website to express my thoughts. In His love,

Betty

Name: Vinod Kumar
Date: 14 March 2006

Hi,

heartening to read about liddys life. my niece is 15 yrs old and is suffering from ewings sarcoma. living in india in a state andhra pradesh. we have least resources and doctors who r aware of this disease. we r confused and helpless. kindly give us any information regarding the treatment and doctors.

Name: Amy Gerson
Date: 17 March 2006

I am crying as I read this.

Amy

Name: Mary Schimonitz
Date: 20 April 2006

Bruce and Bev,

I was doing research on this dreaded disease and came across this website. What an amazing story, journey and testament to the faith of ongoing research your family has. As an Oncology Certified Nurse for 18 years I have worked with thousands of patients and I still haven't lost my ability to cry and feel with my patients and families. This website touched me this way. I am thankful as a nurse you to continue to keep Liddy alive by helping others find a way to treat the awful sarcoma disease.

Mary

Name: Kathy Finger
Date: 5 May 2006

Thank you so much for this website, and the blessing of Liddy. Peace to her and her family, and to those involved in this initiative. I am a recent breast cancer survivor now facing a possible liposarcoma; your information is very helpful. Thank you for being there.

Kathy

Name: Cathy Smith
Date: 6 June 2006

My name is Cathy R. Smith and I am an Administrative Asst. with the University of Michigan Cancer Center. I am deeply saddened by your loss and applaud your efforts to educate the world on Sarcomas and share your daughter's journey as she battled this disease. Many do not realize how blessed we are to have our health and strength and that of our families.

You have caused me to realize how precious life is and how each day should count in showing those we love how much they mean to us. You are such loving parents and I'm sure your love helped Liddy to bear the weight of her struggle.

May God continue to strengthen you each day and give you peace and comfort that only He can give.

God bless,

Cathy

Name: Daniel Tan
Date: 16 June 2006

Dear Bev and Bruce

Liddy’s story is an inspiring one and the heartfelt warmth and love that bonded you as a family comes across clearly in the beautiful narrative of Liddy’s story. Thank you for the courage to share this with the world community through this posting. I chance upon your website whilst doing my literature search on mTOR inhibitors. The amount of information you have posted will help many suffering with the same cancer that Liddy had. I lost an old school friend at the age of 35 to Ewing's sarcoma too. He went through a difficult time before he passed away. I see patients going through the same pain and what drives me to push the envelope of science and medical research is the sad admission that even today we don’t have the right drugs to turn the tide of cancer to make it a disease that wont claim any more lives. But all is not lost, as we think up ways to manipulate the biology of cancer.

It is thanks to good folks like you that keeps us in the medical research field going. We’ve got to try to make things work, the least we can do is to ensure that what you and Liddy went through wont have to happen again to others. I hope this helps in your healing process and thank you for being great patient advocates to help others despite your personal loss. My warmest wishes,

Dr Daniel Tan M.D.

Singapore

Name: Melanie
Date: 19 June 2006

Hello and I am sorry for the loss of your daughter. I am 32 and was diagnosed in Dec of 05. I am currently on chemo for this horrible cancer. I read the story of your daughter and wish I could have known her more. I plan on beating this thing for me and my 4 children. I wish I could have started a bike ride in my state of SD but due to treatments and the timing of finding this web site makes it more difficult.

Please keep up the good work.

Melanie

Name: Jessica Rivera
Date: 22 June 2006

Dear Bev and Bruce

I'm a teacher working on assignments for middle aged students when I ran across the Liddy Shriver Sarcoma Initiative. What a blessing. I may want to use the information in an assignment.

Sarah

Name: Mary J
Date: 27 June 2006

Hello:

My name is Mary J. and my 21 year old daughter Mary B. (a twin) is receiving treatment for Ewing's Sarcoma. I heard about Liddy from my daughters nurse practitioner who will be biking in Denmark. Mary is now wearing the blue marble band " Sarcoma has no borders".

Mary's sarcoma started in her thigh and metastasized to her lungs. She also had chest tubes, but is doing remarkably well. She received her first chemo treatment while on a vent and sedated in ICU. She has already come a long ways toward recovery.

Thank you for sharing your story and may God Bless you for all you have done in the fight against sarcoma.

Name: Robin Harris
Date: 19 July 2006

Hello,

I am a registered nurse with a friend who was diagnosed with oropharynx sarcoma yesterday. She is trying to act as though she is not afraid, but I have seen many people who have had to deal with this situation, and I recognize a terrified person when I see one. I just hope I can say something that will help her at this time of her life. I will refer her to this web site because it has so much information about her disease. I feel this may help her with some of the questions she must have. Praying for a cure.

Robin Harris, RN.

Name: Donna Curry
Date: 20 July 2006

Your story about Liddy is wonderful....and her perseverance in biking and doing the things she wanted to do! She was a real fighter. Thank you for the Liddy Shriver Sarcoma Initiative. At this point I am a "Soft Tissue Sarcoma" survivor. My biopsy was in January of this year, and resection at M.D. Anderson February 6. At my three month check up/testing, all my tests were perfect. I go back October 17.

Donna Curry

Name: Sue Flannery
Date: 24 July 2006

This is a wonderful website. The Research Corner and the Cinical Trials info are superb. Thanks so much for all your hard work. I'm impressed!

Sue Flannery

Name: Tushar Maniar
Date: 24 July 2006

Dear Liddy,

Hi. I am a pediatrician...and I congratulate you for your journey thro' life as we can only control our response to a situation and not the situation itself. I am using present tense as I feel you can read this and your courage will help others in future. This is the most comprehensive information on this problem for doctors and patients

from India

bye

Tushar

Name: Charlotte Vitoft
Date: 4 August 2006

Dear Liddy's family,

I have found your website through a link from a Danish website "kræftens bekæmpelse" where I was reading about the bike trip team sarcoma 2006. For the past year and a half I have tried to find all the information regarding Ewing's Sarcoma I could get, and i must say your website is the very best. I'm so sad to read your story, and I'm so sad for all the children and young adults who suffers so much in their battle against this horrible disease which claims so many victims. I lost my lovely daughter Jessica who passed away the 6th of February this year, 1 month before she turned 7 years. She stayed alive for almost a year after her diagnosis with Ewing's sarcoma, a lot of her story is similar to Liddy's, her primary tumor was also in her left leg. I miss my daughter every day as you miss Liddy, and I really hope hope that a cure in hopefully the near future will be found.

God bless

Love Charlotte

Name: Beth Dalpoas
Date: 26 August 2006

Thank you for posting this emotional and very informative account of your daughter. I just had a friend who was diagnosed with sarcoma and that is all that we have been told at this point. She and her husband are now on their way to Boston for further treatment and information. What she thought was asthma etc. was not after x-rays showed a "spot", she had to have 60% of one lung removed. I just found out today in talking to he Mother that she also had a lump on her scalp, and since it bothered her when she combed her hair, she had it removed, it too was/is sarcoma and her Mom told me that she has another on her scalp. Our hope love and prayers are with them as they make their way to Boston.

Again thank you for sharing your story.

B. DalPoas

Bristow, OK

Name: Sally Thierer
Date: 29 August 2006

My beautiful 26 year old daughter was just diagnosed Thursday with sarcoma in her right calf with mets to the lungs. She is the mother of a five year old girl. As her mother, I am terrified, but also inspired by the way she is handling this--much better than I. I have always been thankful for healthy children. When I read stories like Liddy's, I would be able to say, "I cannot even imagine what her family is going through." Now I know, and it's worse than I imagined. We are going to fight hard for my daughter's life. Sites like this are where I will come for support and inspiration. Bless all of you. Please feel free to email me.

Name: Rachel Drayer
Date: 11 October 2006

Dear Liddy's family,

Just want to thank you for sharing your Liddy with us. You can tell by her smile she was beautiful inside & out. My heart goes out to you & I'm sorry for your loss. We had our own 9/11 when I went w/ mom to find out her MRI results to be told she has Sarcoma & needs to see a specialist. They did a PET CT on her lungs & no cancer thank God. Biopsy last week & told yesterday for her dressing change it's called Pleomorphic Sarcoma & it's a 2b level & her chances are 60/40. She had her port/catheter put in during biopsy & we are waitng for ins. to see when she starts chemo/ radiation. Her Sarcoma started on her left hip 4 months ago & is very large. She had a double masectomy 10 years ago so she's a fighter at 66 years old! I'm sorry I'm ramblin' but I just wanted to talk about it. Mom is my best friend & I'm her only daughter (2 older brothers). As Liddy was surrounded by so much love we are also surrounding mom with love. Thank you for your time & website & I'm hoping to find out more about Pleomorphic (at this time I've found nothing about it.)

Love, Rachel

Name: Janet Kudlack

Date: 23 October 2006

Name: Colleen Wick
Date: 15 December 2006

Liddy Shriver…what an inspiration. Thank you for all that you did to assist Liddy. What a strong and vital woman she was.

My sister-in-law was recently diagnosed with a rare cancer as well…adenoidal cystic carcinoma. A sizeable tumor was successfully removed at UCLA Medical Center on Nov 27, 2007. She is recovering now and will commence radiation treatments the first of the year. The surgical team reported that they were able to remove 99.9% of the cells and hope that some remaining cells around the muscles of her eye will be destroyed via radiation.

She is a vital and beautiful 39 year old woman who is the mother of 2 teenage sons and step-mother to my two teenage nieces. This has been a stressful and enlightening period of time as we’ve prayed as a family for her full recovery. We are grateful for every day we each have with her and move forward with the hope of many more terrific days.

Best wishes and Holiday Greetings to all cancer survivors and their caregivers. Life is precious…indeed.

Colleen Wick

Palm Springs, CA

Name: Amy Ax
Date: 27 December 2006

My daughter, Jamey, was diagnosed with Osteosarcoma on Sept 25, 2005. It was round in her right femur and had already spread to her lungs at time of diagnosis. She underwent amputation surgery on Nov. 4, 2005. She endured 8 rounds of chemo and double lung surgery, but new nodules were found in her lungs by July 16, 2006.

So, she is praying for a miracle and focusing on quality of life. May you find a cure soon, if not in time for Jamey, but to prevent others from going through what she has.

God Bless You!

Amy Ax

Columbus Ohio

Name: Loren Lindquist
Date: 1 January 2007

Bruce,

I read about my MFH from your website. It even showed the surgery on the same part of the body I had it done on (scapular). I underwent 3 surgeries in less than 6 months. I ignored radiation the 1st time and after it recurred again 2 months ago I decided to get aggressive about it (2 cm negative margins with radiation treatments). Luckily, this is fairly superficial with no metastatic involvement. In addition I changed my lifestyle completely (100% raw foods, outdoor exercise, daily meditations, yoga...prayer groups, etc.) This disease has helped me to see my life in a whole new positive perspective. I didn't like it at first, but I realize now how precious the gift of life is.

I think your website was the most informative of my condition. Thank you for your great work. It is a great blessing! Liddy's fight has helped many people. Her soul still shines through this blessed work.

Loren

Name: Blanding Young
Date: 3 January 2007

I keep returning to your web site for information about angiosarcoma. I find more information each time about sarcoma. Thank you for continuing this site and for starting it with Liddy's Story. My son had a knot removed from his leg in September 2006. He is almost finished with the radiation treatment and has opted not to do chemotherapy. I received an email about your 2007 initiative and will continue to watch the site and am thinking of someway that I be helpful. Thanks for all you are doing.

Name: Willy
Date: 8 January 2007

My father just passed away from the terrible disease, and I hope they can fine a cure. He was my life and my father, help fine a way to stop this disease.

Name: Ken and Karen Vassily
Date: 12 January 2007

My son who is 37 recently had two lumps removed from each arm that were later determined to be malignant. They were classified as malignant fibrous histiocytoma. Thank you for your web site for information about this type of cancer. Although my wife and I are still very concerned, at least we see through your site that our son has a reasonable chance for long term survival. His recent visit to an oncologist who was stumped about his cancer just reinforced for us the rarity of this type of cancer. Thank you again.

Ken and Karen Vassily

North Ridgeville, Ohio

Name: Jeannie Colvin
Date: 14 January 2007

I just read about Liddy's bout with Sarcoma. I hurt for her and for you as her parents. It leaves me speechless and scared for my son in law Raymond. He was diagnosed with sarcoma in May 2006. The doctors removed a five inch tumor from his right thigh which was stage four. There seems to be no other apparent tumors at this time. Raymond has had extensive radiation and is now undergoing mega doses of chemo. He is actually doing much better this time and has two more treatments to complete. He has one week of chemo and two weeks off. He has had four treatments and each time he had to take more than two weeks off. I pray for his health and his life.

Thank you again for sharing Liddy's and your journey. I have contacted you about setting up something for sarcoma and we should talk one day this week. I appreciate everything that you are doing.

In honor and memory of our loved ones.

Jeannie Colvin

Name: Kirsty Duncanson
Date: 16 January 2007

I am very glad to have found this website. What a crazy thing sarcomas are. My brother has had recurrences of synovial sarcomas for over ten years now. The tumours have always been operable and he has survived so well to become a good and ethical lawyer, working in social justice, despite the regular disruptions that this has all had on his life. But now we have been told that it is inoperable. He is being dosed up with old fashioned chemo as I write. A three day bought. But you between these toxic sessions he is off bike riding around Tasmania with his buddies. Last year he had a crazy tumour in his heart (so so rare!) it was dire. And then he was operated on and then only a few weeks later he seemed to be golden boy again, looking healthy and strong. And I just hope, hope, hope. And I look on your website at all these trials for new drugs and think about the huge advances in cancer research - even thinking about the huge shift the lives of people with HIV that happened so quickly, and I keep on hoping. He has survived so long and so well this far.

Kirsty Duncanson

Australia

Name: Mari Glass
Date: 18 January 2007

Hello Everyone,

It was an inspiration to read Liddy's story, I am a mother whose son has been fighting Liposarcoma for over 3 years now. I am currently doing research and investigation into treatments and outcomes for Sarcoma patients. My son Justin is also an inspiration to all who meet him and he is currently undergoing Chemotherapy and remains happy and positive. If anyone out there wishes to contact me for info and or advice regarding my son's particular type of Sarcoma I can be contacted via e-mail.

God Bless you All,

Mari Glass

United Kingdom

Name: Kelly Radeke
Date: 23 January 2007

I wanted to thank you for the information you have shared, it has helped me further my knowledge in a long journey I have just begun.

Thanks again,

Kelly Radeke

Pleomorphic liposarcoma x3

Name: Sally
Date: 24 January 2007

Hello my name is sally my daughter has been diagnosed with spindle cell sarcoma . this tumor developed in her nasal cavity and has grown upward its also in part of her frontal lobe. she will be having surgery to remove it on Feb. 1 07. it was found because she had a seizure while showering one morning she was taken to the hospital en route to the hospital she had another seizure the tumor was found from ct scans done that day this happened on Dec. 10, 06. please be in prayer for my family and for her surgery. Thank you

Name: Barbara Shernoff
Date: 1 February 2007

Liddy was an amazing woman. Thank you for sharing her inspirational journey. God bless you.

Barbara R. Shernoff

New York

Name: Karis Meier
Date: 9 February 2007

I am Heath Sammons mother and this sight is an excellent source of help. As soon as Heath gets on the other side of this fight we would like to help raise money for sarcoma research as well. Heath's batle with cancer should be over by June of this year as he is one of fortunate ones that his body responded to the treatments. Thanks for sharing his story and if we can help someone please contact us.

Karis

Name: Melanie Summers Nash
Date: 11 February 2007

Dear Shriver Family,

I just ran across this website and found out about Liddy’s passing. I can’t tell you how sorry I am. Liddy and I were friends in high school. I always admired her great spirit, intelligence and fantastic attitude. This website is such a great tribute to her and her postings were so courageous. I’m sure they will help many for years to come.

Warm regards,

Melanie Summers Nash

Name: Tam Operario
Date: 22 February 2007

Thank you for this website. It was heart breaking to read about your daughter's journey with Ewing's. Her detailed entries of her daily struggle helped me in understanding more of what my son is going through.

My son was diagnosed with Ewing's on his pelvis May of 2005. He has always been healthy, active, and strong, when out of left field we discovered he had cancer. It devastated us. We, too, felt very alone. He finished his first treatment August of 2006. In September of 2006, the doctors discovered cysts in both of his kidneys. We thought our journey was going to end with a happy ending, but two days before Christmas, the final results of the biopsy confirmed the cysts were new tumors. He started chemo again Jan. of 2007.

If there are families out there who are also dealing with Ewing's, please email me at tamoperario @ yahoo.com. I would like to hear from you. Best to all the families out there who are battling with cancer.

Tam Operario

Name: Lorna Storey
Date: 27 February 2007

Liddy's story is full of courage and strength, she is an inspiration to all who have to walk this dark path.

I can empathise particularly with the loneliness of it all. I was diagnosed with leiomyosarcoma in early 2003 and since then it has metastasised to the lung and pelvis. Reading Liddy's story has made me think about beginning a record of my feelings too, for my children who are, thankfully all grown.

To the upkeepers of this site...thank you and keep up the good work please, it will lessen the loneliness a little.

Kind regards,

Lorna Storey

Name: The Lowskies
Date: 2 March 2007

When I was looking for information on the Ewing's sarcoma. I can across your Web site and found it very touching and informative. I only wish I could of found it sooner. It would of helped me through some rough time that we were going through also. What a strong and courageous woman she was .In July it will be 2 years since I lost my grandson Evan ( he was 16 months old ) from Ewing's Sarcoma. I only hope that he has Liddy taking care of him now. God Bless you all.

Name: Ellisa Beaver
Date: 14 March 2007

Thank you for your email today about the tumor vaccine at U Michigan. I showed it to our primary oncologist and he knew about it and said he'd call the doctor in charge.

I also got the oncologist to commit to sending a sample of my son's frozen stem cells over to the lab at the Mayo Clinic to run tests to determine if there is any disease within them before committing to the transplant. Obviously, if there is disease present, it makes no sense to me to proceed with the transplant.

Your webpage is wonderful and I have saved it to "favorites" so I can continue referring to it.

Thank you for your thoughtful response today. We will definitely check this out further.

God bless your and Liddy's soul,

Sincerely,

Ellisa Beaver

Name: Kate
Date: 1 May 2007

I came across your website today while I was researching Ewing Sarcoma. My Aunt was diagnosed with this disease in September of 2004 at the age of 38. This was caught too late and we were told by the Doctors that this is often misdiagnosed. She suffered for months from pain in her leg which we were told was a viral infection that attacked her nerve. In 9/04 she was already in Stage 4 and she passed away in January 2005. As qucik as it was diagnosed, the quicker it spread.

To this day, not many people that I talked have ever heard of this form of cancer. I just wanted to express my condolences to you for the loss of your daughter. I also wanted to thank you for all of the work you have done to help find a cure for this so no one will have to suffer the loss of someone they love to this disease as we had to.

Kate

Name: Eric. R. Rachut
Date: 2 May 2007

Information from this site is used in our pathology practice in Texas. You are doing medicine a fine service and we thank you very much.

Eric Rachut

VA.GOV

Name: Joanne Heitzman

Date: 31 May 2007

God Bless Liddy in her courageous struggle to survive and her parents for the awesome job they are doing for her now.

Joanne

Name: Tom Stowell

Date: 1 June 2007

Bless you and your family for setting up the Liddy Shriver Sarcoma Initiative. My 6 year old son Benjamin was diagnosed with osteosarcoma in September 2006. We have been publishing his journey at http://www.greendrakkoman.com. You are all inspirations to us.

Tim Stowell

Name: Piotr A. Sygula

Date: 2 June 2007

First off, I am so sorry for the loss of your daughter. I can not imagine how a parent must feel losing a child. From what I have read, she will not be forgotten. My husband is 30 years old and is receiving treatment for Ewing's Sarcoma. It was discovered in his right 9th rib after a skiing accident. It is local and his Dr. feels that he has a great chance at beating this thing. Unfortunately this is his second bought with cancer. He had Hodgkin's Disease at the age of 12. He beat that one and I have faith that he will beat this one, too. Since it is so rare to develop this type of cancer at his age, we have not been able to find anyone who is this age with this cancer. He is the first person his Oncologist has treated with this situation in his 30 plus years of practice. We would love to find someone out there who has this cancer at this odd age or someone who is a survivor of a childhood cancer going through cancer treatment, again. We feel very alone in this situation. If anyone fits these descriptions, please email me. It would be nice to share stories and know that there is someone out there who is traveling down the same rocky road. All our love and thanks.

Jill

Colorado

Name: Debbie Crawford

Date: 5 June 2007

I just read Liddy's story and was very moved. What an incredible series of devastating blows she withstood with the support of her loved ones! I received a Liddy Shriver wristband today at a meeting in Norwich UK for setting up a sarcoma patient support group. It is beautiful. I will always wear it.

James Jackson

Name: Wendi Grabener

Date: 13 June 2007

I came across this website when looking up Ewing’s Sarcoma. I work at a Medical Center and heard of a 21yo patient who died from this. I then decided to find out a little more about what it is. Liddy’s story is very touching. What a brave and inspiring woman.

God Bless,

Wendi

Name: Gene Petitt

Date: 6 July 2007

Thank you for this valuable resource – having recently had a wide excision for a MFH I am still trying to learn as much as possible about the cancer, you site and the article by Dr. Carol D. Morris was most illuminating – Thank you again,

Gene Petitt

Highland, CA

Name: David Vitale

Date: 9 July 2007

I'm so sorry for the loss of your beautiful daughter. What a courageous woman. I'll never understand why some people have to take this horrible cancer journey. My Mom just died 6/27/07 of leiomyosarcoma of the ovary. She was dx in 2/07. So they told us 3 years, she only lasted 4 months. They were 4 months of absolute suffering for my Mom. I can't even begin to tell you what she endured. Because I'm sure you know exactly, you had to watch your daughter do the same. I am so devastated at the loss of my Mom, my best friend. I'm a 35 year old woman who feels like a little girl who just wants her Mommy. I was with my Mom 24hrs a day that last couple days of her life. I've been so focused on all the suffering she endured. I wasn't looking at it like a blessing that I got to be with her on her final journey here. Thank you for sharing Liddy's story. She was lucky to have parents like you.

Name: Louis

Date: 9 July 2007

April 13, 2007 the words Ewing's Sarcoma came into my life. My good friend, Mario, that I know for 28 years was diagnosed with this cancer. He's 34 years old.

Since then friends and family have gotten together to create a support group for him. We are trying to create as much awareness to Sarcoma as possible. We are still small and are growing bigger each day. Your website is an inspiration but above that, the name Liddy Shriver is now the name that forms a friendship between us.

Keep Praying, Keep hoping.

God Bless.

Louis

Name: Jerry Litzenberg

Date: 12 July 2007

My name is Jerry Litzenberg, my wife (Diana ) and I lost our son Saxon to Ewing's this June the second. You have probably heard from her but not for me. Liddy's story sounds oh too familiar. I usually don't get on sites like these because I always end up crying and thinking about my little buddy Sax. My wife on the other hand uses her contacts on Ewing's web sites to help her through her healing process. We have a huge emptiness in our lives and in our whole being now that Saxon is gone. We are going to try , like you, to remember our Saxon by helping others with this monster of a disease. We plan on attending the walk in Altoona on July the 14th and hope to see a lot of the people my wife has been writing to on the Ewing's site.

Your daughter sounds like a wonderful person and now a wonderful spirit watching over you all. I wish I could have met someone so courageous like your daughter. Our Saxon was the same way. God bless you all for what you do to help others suffering from this terrible disease.

Jerry Litzenberg

Rochester, PA

Name: Phillip Richmond

Date: 19 July 2007

Hi whoever you are! I am Phil, a 54 yr old male, from England with GIST in my neck. I found this wonderful presentation entirely by accident whilst 'trawling' the web looking for GIST support. I felt I must let you know just how much I appreciated this video, it hits all the right spots & pushes all the right buttons!! I am going to send a copy to my Local Member of Parliament. Great work, keep it up!! Kind Regards,

Phil.

Name: Melody Bruns

Date: 31 July 2007

Liddy's story is certainly a one of courage. I am a ten yr. liposarcoma survivor and recently attended our first group event in Kansas. It is inspiring to read about Liddy's journey.

Thank you.

Melody Bruns

Name: Kathy Mendenhall

Date: 6 August 2007

My son had two histiocytoma tumors removed when he was 13 years old. He also underwent a year of chemotherapy (his oncologist felt the second tumor was a metastasis). He is now 32 years old.

This article helped me understand his diagnosis, treatment and prognosis. I wish I had had this information back then. I appreciate this web site!

Kathy Mendenhall