Photo Gallery for Ewings Sarcoma List (ESARC-LIST)
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Amy
SURVIVOR!!! Amy was diagnosed on July 25, 2001, with Ewings
Amy, if you read this, always remember how much I love you, Angela. On the ESARC- LIST, her cousin is Angela. Click here to see pics of Amy's limo night! |
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Andrea
SURVIVOR!!! On the ESARC- LIST, her mother is Terrie. |
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April SURVIVOR!!! April Nicole DeNobrega LaFountaindx 12/6/96 age 15 with large grapefruit sized ewsarcoma in pelvic area. It was 98% resected 12/13/96. It was attached to the bladder and the pubic bone. We declined conventional 48 week chemo/radiation protocol, and on January 5, 1997 traveled to the Dominian Republic where she received 3 weeks of Electro Magnetic Therapy. No side effects, cell specific for cancer cells only! She remained cancer free until a 2" tumor was found July 2000. It was actually there as a 1" tumor in Jan. 2000, but radiologists missed it and the doctors told us she was cancer free! Boy were they wrong! In Nov 2000, she received 3 weeks of Electro Magnetic treatment, now in Tijuana Mexico. She returned home to find her boyfriend, John, surprising her with a beautiful engagement ring. They were married May 12, 2001. A 20% growth in the tumor, was detected in August of 2001 ( 9 months from treatment), so she returned for treatment, for 3 more weeks, in Sept. 2001. Latest scans show no new growth and pain is gone and as well as other symptoms(fever)etc. She will get another scan in Jan. 2002. Pictures are of April and John at Luau in Maui, on a On the ESARC- LIST, her mother is Maryann.
UPDATE!!! (11/02) April is doing well, she has a 5" tumor still which has been seen on
recent pet scans as largely necrotic. It has not invaded her bladder or
other organs. She recently had a stint procedure which runs from the
kidney to the bladder, as the tumor was pressing on the ureter and causing a
build up of fluid. The tumor's margins are clearly defined. Surgeons
in three hospitals reject us because we have not done conventional treatment.
Sad that sometimes the patients have a better sense of what works than some
medical professionals. We still continue to travel to Tijuana for electro
magnetic treatment and she is also receiving immunotherapy here in Conn. by a
medical doctor/naturepath. They are injections which help her immune
system recognize cancer cells and take care of them. She has been married
for 1 and 1/2 years and has a beautiful yorkie puppy named Tyler. We are
quite happy to have April still with us today, as 6 years ago, the oncologist
told us she would NOT survive beyond 2 years if we didn't do conventional
treatment. I mentioned I haven't been in touch with anyone and was
saddened to hear of Gary's stroke. I do not know how he is of today, but
pray for continued strength for him and his family. Our thoughts go out to
all. | ||||||||
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Autumn SURVIVOR!!! Bios from the support list members: What a sweetheart Autumn is! She is loved by all on the support list because she never gives up, and always tries to stay as positive as possible, under the circumstances. And her sense of humor is so refreshing. Jokes about her sister, Spring. Jokes about her animals (click here to see her pets...she has MANY). Even jokes about here grandfather. She had a huge survivor party, and there are some pictures from that as well. Click here to see them. We love you Autumn! From Norma
Autumn - well
what can I say.
The Autumn that I know is a sweet, kind, and adorable girl that lives in
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Bill
SURVIVOR!!! Diagnosed Jan, '01, ES rt prox femur 9 cm long; bravely endured the treatment protocol, including radiation but no surgery, finishing Oct, '01; Hickman removed 11/27; clear scans Feb, '02!". In this picture, Bill is with his father, Charlie. On the ESARC- LIST, his father is Charlie. | ||||||||
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Billy Bosco (In Memoriam)
Born on February 4, 1971
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Brad (Superboy)
Fighting Again...
Bradford was diagnosed April 1,2001, with Ewings Sarcoma pnet-masticised
from his neck to his feet... 5% chance of survival ......He glowed like a
christmas tree on the scans....Heavy duty 5 day chemo for 8 months, then 3
stemcell harvests, one major chemo then stemcell transfusion. He
came out of isolation in 12 days compared to 30 day regular stay; also
4 feeding tubes in 4 days, so that's why he is known as (superboy).
25 days of radiation to his left hip area, as they think that could be the
primary. We are now on maintenance chemo for 6months( experimental).
Still fighting....Clear scans to date. Mom Susi on line, loves
punctuation marks.......
Picture 1 - This is a couple of months before diagnosis. Picture 2 - This is during chemo maintenance, and he looks great.....most of the time.
Picture 3 - This is Bradford at xmas with fantastic
sister Danielle(Dee) 12 yrs old......Just before the last big chemo and
stemcell transplant.
UPDATE: BRAD RELAPSED IN THE SUMMER OF 2003. He is fighting again, and we are all sending our love and prayers to Susi, Brad, and family. On the ESARC List, his mother is Susi.
Scott and Brad in summer 2003 (See also Scott in the "S" section.) |
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Bryan Herbert (In Memoriam)
It is with my deepest regret that I inform you that my son Bryan Herbert
passed away last night from Ewing Sarcoma. He put up a valiant fight, but was no longer able to fight this monster any longer. I wish I could say that he died peacefully in his sleep, but I can't. All I can say is that both his dad and I were with him during his final fight before he passed on. Thanks to all of you who have offered words of hope, support and encouragement. When I write Bryan's obituary I am having the end read; In lieu of flowers remembrances can be made to the National Childhood Cancer Foundation, PO Box 60012, Arcadia CA 91066-6012, Attn: Kitty Gordillo. They are designating a fund in Bryan's name to be restricted to Ewing Sarcoma research. Sincerely, Teresa Herbert mother of Bryan age 14 dx May 2002 DOD September 18, 2003
Bryan was diagnosed with Ewing Sarcoma on May 6, 2002. Large tumor in Left pelvic area w/mets to vertebrae, skull (around left eye), left lung, and in the bone marrow. .
-On the ESARC List, his mother is Teresa.
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Casey BIG TIME SURVIVOR!!!
This is Casey, she turned seventeen on New Years Eve and was diagnosed with cancer on New Years Day 2002. A diagnosis of Metastatic Ewings was made nine days later. She has a primary in her left femur with mets in her lymph glands and a large number of mets in her lungs. She is having treatment at Peter MacCallum Cancer Institute in Melbourne Australia. She’s had three chemos so far and starts her fourth next week. Scans soon will decide when she undergoes surgery on her leg. We have been told expect 52 weeks of chemo, radiation. Surgery and probably a double stem cell rescue. She was about to start her final year in high school but is only attempting her Japanese classes which are her passion. She hopes to complete the rest of her final year next year after which she will apply to undertake Asian Studies and Korean Language at Monash University in Melbourne. She has twice been on exchange to Japan and only returned from her second three month stay three weeks before her dx. She has a brother Joshua who is nearly fifteen and a little sister Molly who is ten. Casey adores theatre and is an enthusiastic member of her schools drama group. The
photos show Casey at her Deb Ball on the 31st March 2001, nine months
before diagnosis. In Japan dressed in a pure silk kimono valued at $10,000 aus where she studied for three months with a 95 year old tea master. The photo was taken at her final exam where she performed a tea ceremony for her Japanese school friends, staff and family. It was taken four weeks before her diagnosis with Ewings. With her friends after their production of “irrelevance.com” she is second from the right bottom corner. UPDATE Jan, 2003!!!!!! I wanted to pass on that we
Casey with her mom and dad in December, 2002.
Update Nov. 23,
In five and a half weeks it will be two years since Casey was diagnosed and
what a long way we have come. Despite such a poor dx she is doing wonderfully
and the future feels full of promise.
On Wednesday night Casey finally graduated from High School, a year late,
but I don't have to tell you better late than never. It was a night we never
expected to experience, but in my best dreams it could not have turned out
better.
Casey has completed her final year of work over the past two years. Last year
she completed three quarters of her final two units of Japanese, but was
unable to sit her final exams as she was much to ill to undertake a three hour
written exam and a half hour oral. At the time too, it seemed pointless for
her to expend her limited energy when it seemed unlikely she would survive to
graduate. This year she has completed those units, as well as Psychology,
Biology, English and one unit of enhancement Japanese at a university level.
Quite a workload for a girl who until August was rarely well enough to attend
school more than one day out of three and was working mostly at home alone.
She has had immense support from her teachers and school but the onus has been
very much on her alone to do her best. Well, to say she did her best is an
understatement, on Wednesday night at the Valedictory dinner she was awarded a
financial scholarship for "Outstanding Academic Achievement" her
schools highest prize. Despite all the trauma of the past two years she has
completed her education with A+ in Psychology, English and Japanese, an A in
Biology and a Distinction in her Enhancement Japanese. She had dearly hoped to
win the Language prize, an award she was a certainty for last year but was
excluded from after a protest from some unknown person that as she had not
technically completed the course she was ineligible. Her marks for last year
were counted for this year and she missed out by a single point. Casey at her
worst, fighting for her life was only beaten by one point by the next highest
achiever. Her Japanese teacher has told her privately that she is without
doubt the most talented student he has taught.
The night was a formal evening, the girls dressed beautifully and the boys
scrubbed and handsome. I know you'll understand why I think my baby was
undoubtedly the prettiest there in the beautiful pink dress she bought for the
graduation of her friends last year. It broke my heart last year
when we attended this dinner, she was so ill and pale and with her bald head
she stood out in the crowd for all the wrong reasons. To watch her friends
bubbling with life as they received their graduation certificates was another
turn of the knife that was embedded so deeply in my heart. But this year for
us Casey was the star, glowing with happiness and health. I'm told when the
announcement was made a huge cheer went up, but I didn't hear it, crouched on
the floor in front of the stage trying to take photos, tears running down my
face, I was oblivious to anything but my beautiful daughter. After the
prizes were awarded so many people who knew her story wrapped their arms
around me, congratulated me on her achievements and asked me how I felt. I
told them I didn't have the words to explain.Only you here can truly
understand what it is like after the hell of the past two years to live
through a moment like this. Why even as I write now I choke back the tears.
To add to the excitement of the night her Dad and I had arranged for a singing
telegram to be delivered, the look on her face when Austin Powers arrived to
serenade her was beyond description.
On the 15th of December Case will receive what is called her "ENTER"
score, a ranking allotted to each Year 12 student after assessment of their as
yet ungraded final exams. This score will be used by the Universities she has
applied to, for them to decide whether or not they will offer her a place a
place in the course of her choice. We hope that she will make what is termed
"Clearly In" but should she fall slightly short, over the past few
months we have sent out numerous letters to selection panels, Targeted Access
Programs and anyone else we can think of for her to receive special
consideration for the difficult circumstances under which she has worked the
past two years. We will have to wait till the 19th of January to know whether
she has been successful.
On the 19th of December she flys to Japan for 22 days to visit with friends
and see parts of the country she missed on her two exchange trips. She will be
away for Christmas and her birthday, and my heart is in my throat at the
thought of her travelling so far from home alone. She seems to have little
fear of travelling alone, and I suppose the truth is that there is little left
in life to be frightened of, she has seen the worst, fought the monster and
won the battle. While the fear of relapse will always be with us, at this
moment it seems impossible to believe we will ever have to walk that path.
Surely for one with so much to offer the future can only now be bright.
To all the ES warriors and those that love them,
All my love Jenny.
On the ESARC- LIST, her mother is Jenny.
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Charlie SURVIVOR!!! Charlie was diagnosed on 6-22-01 on the left clavicle with no mets. Surgery to remove the clavicle was done in 11/2001. Chemo was finished in April, 2002. Charlie is a graduate of Longwood College (12/2000) with a degree in the Performing Arts! His current interest is "spinning records". Latest scans were September 2003 - ALL CLEAR! On the ESARC- LIST, his mother is Norma and his father is Lenny.
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Charlie smiling...
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Chase
Steven " Chase" Coleman DX Dec. 2001 Rt First/Second Rib In December, 2001, at the age of 19, Chase waited for a call from the Recruiter to inform him of the date he would go in for the enlistment physical required for his admission to the Air Force. In addition to this he and his wife, Heather, were also waiting on the arrival of their first born. Concerned about the severe pain he had been
experiencing in his right shoulder possibly preventing him from passing his
physical, he was seen by a chiropractor and several doctors. Finally, after
the pain became unbearable, he and his wife made a trip to the hospital
emergency room where a cat scan and MRI introduced he and his family to a
journey no young couple would ever expect or deserve. Three days later their son, Evan Tanner Coleman, was born. After four chemotherapy treatments, surgery removed a shrunken tumor. More chemotherapy and radiation followed, and with incredible strength Chase completed his treatment in February, 2003. When a new pain was experienced a short four months later, Chase and his family were horrified to discover that once again the evil monster had returned. Currently, he is undergoing radiation and seeking new treatment options.
On the ESARC- LIST, his mother is Linda C.
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Chayse SURVIVOR!!! Chayse was 7 when diagnosed with ES to his right scapula with soft tissue involvement and one spot on his lung on Jan.18, 2001. We are from Borger Texas. Chayse is known in several states for being one of the best wrestler's in his age division. In 2001 he had a record of 56-2. He has wrestled kid's from Illinois, Nevada, Georgia, Colorado, New Mexico, California and all over Texas and Oklahoma. As good a wrestler as he is his first love is baseball and being right handed losing his scapula is going to be devastating to him. But he also knows the alternative. So we will be in search of some new sport's or learning to throw a baseball
left handed. As for wrestling, we will have to
see how the shoulder heals. Chayse has 2
sister's , Chandra 11 and Cydney 5. He has 3 pets. A
guinea pig named Willie, and 2 dogs...one named Angel and the other one is
named Pepper. He loves playing playstation and xbox. and
takes one of them with him when he goes in for chemo. And it drives his mother
nuts because she has to carry it into the hospital every
21 days, along with the TV.
UPDATE: Last chemo was 2/24/2003!!!!!! On the ESARC- LIST, his father is Bryan.
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Christian
Diagnosed
with cancer Live
in “Wonderful Copenhagen”, the capitol of Denmark, one of the Nordic
countries in Northern Europe. Been
to US many times. San Diego, Dallas, New York, Chicago, LA
and San Francisco.
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Christopher (In Memoriam) Bio to come On the ESARC- LIST, his mother is Karin.
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Claire SURVIVOR!!! Claire was diagnosed with Ewings of the left femur one month
before her third birthday (6/01). Chemotherapy began on July 4th.
She had limb salvage surgery on 10/30/01 using a cadaver bone (from a 33 year
old man!). The tumor was 100% necrotic. She wears a brace and was
non-weight bearing on her left leg until just before Christmas. Now, we
can't slow her down!!! Her surgeon said that her bone is healing amazingly
well (almost completely grafted together at the bottom) and she should be able
to stop wearing the brace in March! She has 8 more chemo treatments to go.
Claire has been such a trooper through all this and her Mommy and Daddy and
little brother are so proud of her. She has such a wonderful attitude! The last picture is Claire after finishing treatment! On the E-SARC site, Claire's mother is Kim.
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Clayton SURVIVOR!!! Clayton is 6 years old and is one year out of treatment. His father is William.
Danny
Danny aged 8yrs, was diagnosed the 15th December
2002 with Ewings in the spine and pelvis. He had 14 blocks of chemo and 6 1/2
weeks of
radiotherapy. Surgery is not a option. He finished chemo October 2003 and is
waiting for wiggly (Hickman) to be removed .M.R.I. results will be October
2003. Tumor still present, and we are waiting in limbo to see what happens
next? Must
keep positive.
On the E-SARC site, his mother is Sasha.
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Debbie
Hi, my name is Debbie Herz-Midler and I am fighting Ewing's Sarcoma. Please add me to your site.
I was
diagnosed with Ewing's in June of 2003 with a soft tissue tumor in my left
breast. I had the tumor removed in July 2003 and have been in
chemotherapy since.
In
October of last year I found a lump in my left breast during a routine self
exam. I had 2 mammograms and 2 ultrasounds over the next few months and
the doctors repeatedly discouraged me that my tumor was nothing and to
not worry and/or to give it more time. BUT my husband Jon and I insisted
on having it removed. As it turned out is was something - Ewing's
Sarcoma. I have been in chemotherapy and so far there has been no
reoccurrence.
I have
attached a photo of myself, my husband Jon and my son Sam with Mickey Mouse at
Disneyworld this past October. The doctors gave me a break to take this
vacation with my family.
Also are
photos of us before I was diagnosed with Ewing's.
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Put faces to the names!
