Photo Gallery for Ewings Sarcoma List (ESARC-LIST)
P-
Z
Put faces to the names!
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Paul E.
SURVIVOR!!!
Paul was diagnosed on March 19/02 (his older brother Jon's birthday) with PNET/rib(s)
at age 20 years. He initially thought that he had a pulled muscle from
dragging a moose out of the bush while hunting, but when a "lump"
was felt, he saw two different doctors who told him that it was probably scar
tissue. An X-ray showed part of his rib was "missing", which led to
many more tests and a trip to a specialist in Toronto and eventually the
cancer diagnosis. Fortunately, Paul was almost finished his college program
and he did graduate last spring. Chemo started early in May/02 and he has
completed 10 rounds of alternating VAC and Etoposide/Ifosfamide every 21 days,
in hospital in Thunder Bay. Surgery is scheduled for December 19/02 in
Toronto to remove at least rib #4 and possibly more. We were told in the
beginning that Paul's case was "potentially curable" and we have
held on to that fact ever since. It has been a rough road so far but Paul has
remained very positive and is doing well. We have every reason to believe that
Paul will be a survivor! Paul will turn 21 on Dec. 26th/02.
On the E-SARC list, his mother is Nancy
E.
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Paul and Nancy July, 2003 at Fly In Lake, north of Ontario
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Paul Syswerda (In Memoriam)
Paul was dx on his 17th birthday (6-18-98)
and passed away on Jan. 15 2001 at age 19 1/2. 
Paul was dx
with the primary in the left Iliac Wing
(hip) with the tumor breaking through
the front and back of the bone as well as traveling down the sciatic nerve. He
also presented with 14 tumors in the lungs at dx. He was just entering 11th
grade. We sought a dx for 6 months, like many on this list, it was thought to
be a sports injury. (wrestling)
Through out treatment, Paul was the Drum
Major of the band, Homecoming King, lead actor in 4 plays and musicals at
school as well as being involved with College and Career and Discipleship
Group at our church. He sang in an accappella vocal group through out.
Paul underwent all standard protocols,
Thalidomide, Celebrex, Radiation as well as a Stem Cell transplant.
Unfortunately, the Ewing's didn't respond well to any treatment.
Paul's attitude was one of strength
and faith. Determination. He finished well. His three brothers and myself
as well as his dad and step mother miss him terribly...but count it a
privilege to know such a dynamic, peaceful, hilarious kid! 
Paul's mother, Adele, is on the
left in this picture.
http://www.mr2sc.com/pauls/
On the ESARC-LIST, his mother
is Adele.
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Paul Onvlee
(In Memoriam)
Paul Onvlee, from the Netherlands, born November 25, 1984, dx with Ewing
behind his 5th rib (left) Feb. 2002. Lost his battle on May 15, 2003 with
his dear mother at his side.
Comments from Norma: I normally do not take it upon myself to write here,
but am doing so now until Tru can do so herself. I believe I speak for all of us
the list that...
Paul is known to all of us as "Sweet P". All of us have a
special place in our heart for this colorful, life-loving, sweet, and energetic
young man. He fought a very long hard battle and we miss him and the stories
from his mother, Tru, of all of his antics that always made us all laugh. We
love you, Tru, and we miss him so very much. We are here for you anytime day or
night.
Pictures:
1 - (in his mother's pyjamas) taken in 1997.
2 - On New Year's Eve 2001
3- (with cap) in March 2002, just before going to hospital for his first
chemo. He still had his hair then, but allegedly wanted to prepare himself and
his surrounding for doing without for a while.
4 - Paul's brother is the handsome youngster with a
tuxedo
5 - Paul's mother, Truus, against the marvelous
Dutch landscape in a hot air balloon (1999).
6. Paul in Paris in August, 2002.
7. Paul, Peter Bas, and Truus in Paris in August, 2002.
8. Paul and Truus on train in Paris, August, 2002.
On the ESARC-LIST, his mother
is Truus
truusvanderspek@hotmail.com.
VISIT PAUL'S MEMORIAL SITE AT www.paulonvlee.net
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Pauline (a welcome friend of this group!)
Pauline lives in England. She is the mother-in-law of Jamie
(see his bio and picture on this page). Autumn started calling her "Auntie
Pauline", and many of those on the list are now doing it as well. She is a
strength to all of us, a kind and sweet person, and though she has suffered the
loss of her son-in-law who she loved dearly, she has remained in the trenches
with us to keep the fight going. She gives us encouragement and positive
thoughts with every post. Thank you, Auntie Pauline.
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Rachel
SURVIVOR!!!
Rachel was diagnosed with Ewing's of her right distal femur in April of 1997
when she was 5 1/2 years old. She just turned 10 years old on November 13,
2001. She has leg length differences now because of having her growth
plate taken out and she will need more surgeries in the future but she does have
her own leg and she has never had a relapse or a recurrence and has been out of
treatment more than 3 years -- since August of 1998.
UPDATE! (11/02)
This is Rachel's 6th grade picture! She is now 11 years
old and doing great!
On the
ESARC- LIST, her mother is Debi.
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| Ryan SURVIVOR!!!
Diagnosed 10/26/01 with a grapefruit sized tumor in his right anterior
wall.
Started his first chemo on 11/02/01.
After first 4 rounds of chemo had surgery to remove the tumor as well as 3
ribs, a little bit of his right lung and a little bit of his diaphragm.
After surgery he had 28 radiation treatments as well as continued with the
additional 10 chemo's, for a total of 14 chemo treatments. He
completed
treatment on 09/21/02. All scans are clear and he will have his
central
line removed soon.
There are 4 pictures attached.
1. Ryan at the airport in June, leaving for the Silver Lining
Foundation Ranch in Aspen CO. He and 7 other kids with cancer from
Madison spent a week at the camp (founded by Andrea Jaeger). The
Silver Lining foundation also sent the 8 kids to New York City in August
to attend the "Arthur Ashe Kids Day" at the US OPEN tennis
tournament. They explored New York and saw the Lion King on
Broadway.
2. This is Ryan doing what he loves best. Skateboarding!!! It's
been fun watching him get his energy back so he's able to keep up with the
rest of
his friends.
3. This is the most recent picture of Ryan. He's just finished his
first Chorus concert. He took off his tie before I could get a
picture.
4. This is mom's best friend Kim who is undergoing treatment for
Breast Cancer. She was visiting Ryan at the hospital during his last
chemo treatment. Kim was diagnosed 6 months after Ryan and Ryan has been a
big inspiration for her.
On the
ESARC- LIST, his father is Mykal.
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| Ryan W. SURVIVOR!!!
Ryan was diagnosed in October 2002 with ES to his right pelvic bone.
In
spring of 2002, he complained of a tiny bruised feeling at the top of his
back right hip. He began to sporadically have pains that highly
resembled
pulled muscles in his right leg. Nothing was consistent (except that
tiny
spot of bruised feeling with no visible bruise) into the summer, except
the
"pulled muscle pains" came more frequently and lasted longer.
He has always been very active in soccer and was currently on two teams
and
had just finished an intensive semester training with a district soccer
Olympic development program. So, it made sense that maybe he was
pulling
muscles, as he was playing more often and more intensely than ever.
PLUS,
he was just turning 15..... time for growth spurts, so some doctors
mentioned growing pains. Finally, by September 2002, the pain was
just
about every day and often included chills and spasms in his leg. We
had
been to a family doctor, orthopedic and a pediatric orthopedic, but
hadn't
tried a chiropractor.
The chiropractor was the first one to give us some "definite"
answers. We
were relieved, as he felt strongly it was a slipped lower lumbar disc
problem. He was the first to have some definite sounding answers
that made
sense. Still nothing would show up on x-rays.
I really felt in my heart that the chiropractor was right in diagnosis,
(sometimes Ryan would actually feel better after a chiropractic treatment)
but after a month of treatments, by the first of October, Ryan's pain was
greatly hindering his activity. I decided to try a neurologist, so I
made
an appt. with a pediatric neurologist for sometime in November (the
earliest
they would see us). By the second week in October, he was missing
school
and had been on Motrin around the clock for at least 6 weeks. A
friend said
she had had a lower vertebrae problem that didn't show up on an x-ray, but
DID on an MRI.
So I had an MRI ordered, thinking I would take the films to the
chiropractor
(whom we had come to love and respect) to maybe help him out with his
treatment plan.
The day of the MRI changed everything.
The radiologists were hopping. They saw the tumor immediately and
called
the fam.dr., who then called me while I was still waiting for Ryan to be
done with his MRI. He told me there was something suspicious and
called me
in to see him. He then told me that it was probably cancer and
probably
Ewings and that we needed to get to the Univ.of VA medical center right
away
for a biopsy. He set it all up and by the last week in October, Ryan
was
beginning chemotherapy.
His pain was so increased during that 2 weeks that they tried him on
Vicodin
and then changed it to Demerol, then during chemo, they put him on
Morphine
and he didn't wean off the morphine until Feb.2003!
Ryan had a central IV line put in his chest. Double lumen broviac, I
believe it was called. He did the standard Ewings chemos......
Ifosphamide,
Etoposide and Vincristine switching with Cyclophosphamide/Adriamycin every
3
weeks for almost 8 mos. He was late one week in treatment, one time
(because we took a trip to the Grand Canyon!).
His tumor was 8 inches wrapped from groin to spine around his right pelvic
bone at diagnosis time. There was no metastasis (sp?), nothing in
bone
marrow. He was diagnosed with Localized ES Ewings to right pelvic.
Ryan had no surgery, but had radiation during the middle of his
chemotherapy. After the first 3 mos. of treatment, the first set of
scans
showed significant tumor reduction (only about 3 inches of mass at the
base
of his spine).
He obviously responded VERY well to chemo. We also believe strongly
that
the prayers of many were answered. God is working whether He answers
our
prayers our way or not. How we respond is up to us.
Ryan finished treatments the first week in June... Central line was
removed
first week in July and his scans remain unchanged. The oncologists
believe
the little mass left in his back hip is most likely just scar tissue/dead
cancer cells.
Ryan is now enjoying the normal stresses of high school, almost ready to
test for his regular driver's license and working on building his muscles
and stamina back up so he can eventually PLAY SOCCER again!
He has 2 younger brothers and a little sister too.
On the ESARC- LIST, his mother is Leah.
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last treatment
a month before diagnosis
Family - December 2003
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| Samantha R.
SURVIVOR!!!
I have to thank Barry Sugarman for leading me to this group. My
daughter Samantha was dx with Ewings on June 11, 2002. The tumor is
in the left side of her pelvis and is localized and not in the marrow, so
these are good things. We have had 2 cycles of chemo.
UPDATE: 05/24/03 - Sam has finished her treatment and is now a
SURVIVOR!
Pictures:
Pretty Sam
Sam with her sisters, Jessica (on left) and Heather (on right)
On the ESARC- LIST, her mother is Debby.
This is Stephanie's and Sam's site!
http://www.geocities.com/coolis_4/Thelifewithewingssarcoma.html
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| Scott
SURVIVOR!!!
Scott Barb, age
17, was diagnosed with Ewings PNET of the right femur in Feb. 2002.
He finished chemo in Jan 2003 and had clear scans in Feb 2003. His
amazing faith in God gave him and his whole family the ability to fight
this monster. The little one in the picture with Scott is his first
nephew, I consider this picture, my two miracles, Scott because he's still
with us, and the baby because he came right when we needed him. The
baby really produced miracles for Scott because after Scott's first chemo,
he couldn't enter any hospital for any reason without getting nauseous to
the point of having to leave or puking but when Scott went to visit his
nephew in the hospital the day he was born, after holding the baby, he
said he didn't think he'd have that problem anymore. We found this
to be true when Scott went back to Children's the next week for scans and
had no nausea. God works in amazing ways.
Love,
Shari
Pictures:
Scott with his
nephew Ricky, Scott with Ashley, Scott with his 2003 prom date, and
holding Ricky again.
On the ESARC- LIST, his mother is Shari.
Click here to read a
poem Scott has written.
Scott with Brad (see Bradford - Superboy
in the "B" section)  Scott
with the girls!  Scott
and family
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| Shelly Glaspell Schiellerd (In
Memoriam)
This is a picture of my dear daughter who
died of Ewing's Sarcoma on Nov 13, 2002. She battled the disease,
determined to beat the monster, but unfortunately lost the battle.
She was 29 years old. Ewing's was located in her right scapula with
recurrence in bone marrow. She was in a great deal of pain, but
she kept on fighting for her two sons, Cameron and Dylan. She is
with the other
Ewing's Angels.
Thank you,
Sandy Glaspell
Mother of Shelly Glaspell Schiellerd
Shelly's Story...
Dear Friends,
I have finally brought myself to tell you
all about my daughter, Shelly Renee, who was diagnosed with Ewing's
Sarcoma of right scapula in March, 2001. It is a painful
story but one that needs told.
Shelly, age 27, had begun having pain in
her right shoulder area about 6 months prior to her diagnosis.
Nothing really bad in the beginning, just sensitive and nagging.
She was very active and when she went to doctor she was told she had
pulled a muscle - strain or sprain. Given anti-inflammatory
medication and advised to rest. Pain would subside and no
symptoms for weeks at a time and then out of no where a flare up.
Back to doctor, same diagnosis - sent to physical therapy with
cervical sprain/strain. We had no reason to expect anything
else. She was a healthy young woman. Then the pain became
a constant, sending her to
ER several times. She was given pain medication and
anti-inflammatory. Then we noticed a swelling in her right
shoulder blade. Back to doctors - x-ray showed something, but
believed to be a winged shoulder or inflammation/swelling.
Finally we were sent to orthopedic doctor and a MRI was ordered, which
revealed a soft tissue mass. A biopsy was performed and that is
when our nightmare began - diagnosis Ewing's Sarcoma.
I have worked in the healthcare industry
for many years and had never heard of this disease. I searched
for information, little to be found and tried to find others who were
dealing with this disease - little help there either. Since this
is primarily a pediatric disease, there was little to nothing for
adults dealing with Ewing's.
Our family was devastated to say the
least! Shelly was a divorcee, had 2 small sons and was engaged
to get married in July, 2001, but due to her diagnosis the wedding was
moved up and she was married Easter weekend and began chemo the next
week. She was having excruciating pain and was unable to raise
her right arm.
She began the red devil chemo. For
those who have undergone this treatment, you know what I am talking
about. Within 24 hours after beginning chemo she was able to
raise her arm and have very little pain. The tumor began
shrinking. The doctors were very encouraged and we all felt
Shelly would beat this cancer.
Three months after beginning treatment,
surgery was scheduled, and her tumor was removed. Pathology
revealed only remnants of a tumor, punch biopsies revealed
nothing outside of tumor margins and she was felt to be 99.9% cancer
free. She still had to continue the typical protocol for the
disease - every three weeks chemo.
We all went through the ups and downs.
Sickness, side-effects, emotional roller coaster. The
insecurities, the anger, the frustrations, why me. Still to this
day I deal with many of emotions.
March 2002 Shelly finished all her
treatments and was told cancer free. She was elated, as we all
were and was determined to get her life back. Enjoy her family
and friends. She also wanted to give back and was very
determined to be a mentor to others with Ewing's. She began
visiting patients in the cancer center and said to me on many
occasions - "Mom, I love my life. I have a wonderful new
husband, two wonderful children, a new house and a wonderful
family." We were all on top of the world.
I quit my job to help her out after
treatment. We began decorating and painting her new home. She
kept me busy wallpapering, making window treatments, etc. I
loved seeing her so happy. Within 3-4 weeks she began having she
began having small aches and pains i.e. ankle hurt, hip ached, left
shoulder ached, etc. Trips back to doctor every few weeks.
She had just about everything x-rayed and nothing showed up.
Symptoms were attributed to increased activity after being so
sedentary for the past year. This was logical - she had been on
ladder, walking 4 miles every day, painting, etc. Then she began
really having pain in her right femur. Then we found out she had
a fracture in that area - symptoms kept persisting and pain
increasing. Bone marrow taps in August 2002 revealed Ewing's in
the bone marrow. Then the nightmare really began.
Tremendous pain - scans revealed more
uptake in the areas she had complained about previously - ankle, hip,
left shoulder, etc. Radiation treatments began. Then it
was felt a stem cell transplant would be our next option. After
much bickering with insurance company, the treatment was approved.
Salvage chemo was begun to see if the spread of the cancer could be
halted enough to have the stem cell transplant. Shelly's
oncologist investigated to possibility of getting her in the Gleevac
trial study, but we found out this study needed something measurable,
like a tumor, and it is very difficult to measure disease in bone
marrow. Her oncologist said she would probably have 2-5 years.
We talked about this - Shelly was thankful for that amount of time -
this would allow her time to get the kids to a certain point.
Her pain kept increasing, fevers and much pain at bedtime. We
would massage her for hours, but could not satisfy her need for pain
relief. She refused to spend long periods of time in the
hospital. She wanted to be home with her family. November
4, after being up all night with pain, I took Shelly to doctor's
office the next morning. She agreed to be admitted for pain
management. After that visit, the oncologist told us she would
only live about 2 weeks. We brought her home the following
morning - Nov 5 and she died at home with hospice on Nov 13.
I still am angry, sad, confused and just
lost at times. How can you be cancer free one day and then find
out you are terminal? Nothing showed up in her scans for the
first few months - doctors feel the cancer was dormant or not able to
see on PET or CT scans.
I still am angry, sad, confused and just
lost at times. How can you be cancer free one day and then find
out you are terminal? Nothing showed up in her scans for the
first few months - doctors feel the cancer was dormant or not able to
see on PET or CT scans.
I hate this disease for taking away my
daughter and disrupting our family. My husband and I have legal
custody of Shelly's oldest son. His brother is now living in
Colorado with his father. It kills me to have them separated. We
are dealing with so many issues with the oldest. He has lost his
mother, his brother, his adoptive father, his home. Much
insecurity and anger within him. We are working through these
issues with counseling, medication and giving him all the love and
support we can. We love him and want him to feel safe and
secure.
I have begun a non-profit organization to
benefit Ewing's Sarcoma. I have worked very hard to get this
far. Have raised about $35,000 so far. Our next fundraiser
will be the 5K Memorial Walk on Nov 15. Wish us luck!
If anyone has ideas for fundraising or any
words of wisdom to impart, please feel free to pass it along.
My prayers go out to all of you whose
lives have been touched by a loved one with Ewing's Sarcoma. I
will continue my plight to raise awareness and money to help others
with this wicked disease. For those of you who are undergoing
treatment, my daughter said, never give up the fight. Think of
all that you have to live for and focus on that.
Sandy Glaspell
Mother of Shelly Glaspell Schiellerd
7/13/73 - 11/13/02
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Shelly Labrie (In Memoriam)
Shelly left this world on June 20, 2003. We will miss her positive
attitude, strong and courageous advice as a teenager to the parent of
teens with ewings, and her smile that showed through every word she wrote.
From Truus:
Lots of moms with ewing kids often wonder how their child thinks. How
does (s)he cope? What does (s)he hide from us? Shelly gave us this
insight. She spoke about her illness and feelings with a wondrous
candidness and a fierce optimism. She made us believe our kids felt
like she did, and shared her optimism and courage. In doing so she
made life easier for us. Thanks you for this gift Shelly, you will be
remembered by all of us as a most spiritual and kind young woman.
This is what
Shelly wrote when she joined the E-Sarc support list:
Hi, My name is
Shelly. I was diagnosed with ES to the left tibia, (no mets) on Feb 7th
2002. I am currently 19 years old. I finished 30 rounds of radiation. I
have a total of 17 chemotherapy treatments and I plan to finish those by
March 2003. I had a limb-sparing surgery May 14th. So I plan to be on
crutches till at LEAST December. This picture was taken a couple of years
ago, but I basically look the same because I wear a wig very simialiar to
the picture.
I thank the Lord for every day that he lets me wake to see another
sunrise. I believe he will help me through this process. It
was once said: "Don't Deprive Somone of Hope--it May be all They
Have...but with the Lord and my wonderful team of doctors I believe I have
more. I plan to have a "Remission Party" in March 2003!!!
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Sinclair
.SURVIVOR!!!
Although well meant the newspaper article is incorrect in
certain areas. We had been away
for 3 months Sinclair arrived home from University (stayed on for final
parties etc) the week prior to Christmas.
He looked worn out
(not too concerned this was the norm when he arrived home from Uni
he lived on Campus at Johns and lived life to the max!)
I hadnt realized the extent of weight loss as he wore baggy clothes
etc. After couple days realized
all was not well and thought he needed trip to doctor.
Doctor DID NOT LISTEN TO HIS CHEST just took blood sent him home!
Day after Christmas I went with him into Doctor and demanded he give
Sinclair a thorough check-up and listen to his chest etc unhappy man (told
me HE was the doctor not Me!) sent downstairs for x-ray admitted to
hospital immediately chest looked like that of a dying 80yr old man!
I found out later that weight loss was over 2 stone and night sweats
horrific the night he was awarded the Blue his mates had to put him
into a shower to revive him!
Within 3 days Sinclair had been diagnosed with PNET/ewings
ASKIN TUMOR primary in pleura heart to one side left lung
collapsed right Ύ functional with metastases. Once tumor had been
disturbed with biopsy Sinclair began going downhill quickly - New
Years Eve night saw us in Brisbane being told by oncologist because of
location/ state of chest/ mets etc would not live longer than about 8 weeks
max. We had come up against
medical/hospital opposition when we decided to travel to Brisbane to have
Sinclair treated privately by very well regarded oncologist best decision
ever made! This oncologist was
very pro active within 2 hours of making appointment he had consulted
with group of European and East Coast USA Oncologists.
Sinclair had been very fit young man had won full University Blue
that year (just what you send your son to Uni for
- sport hahaha) therefore with his agreement decision made to
hit him hard with new protocol for ewings (this was 6 years ago)
they would give him as much as he could take this was now standard
3day/5day shortened and intensified. He
received this chemo for 4 months (unbeknownst to us at time oncologist
unhappy about shrinkage after first month) still inoperable and radiation
not possible because of location - therefore executive decision 2 more months
of chemo then go in and look. Finally
operated on by brilliant Thoracic Surgeon he only had to remove 3 ribs
spaces instead of the six lower left lobe of lung left in place
removed most of diaphragm mediastynal lymph node (mets) did not
bump spleen had been warned total success apart from horror
time in intensive care where lack of pain control sent him into shock.
More heavy chemo and after a couple of rather horror years post
treatment - scares two surgeries - poor concentration fatigue
viruses stress. etc (Sinclair would not accept professional counseling and
his oncologist would not give him anti depressants said he had had enough
drugs through his system) he graduated from University of Queensland with two
degrees Bachelor of Electrical/Electronic Engineering (Honors 11A) and
Bachelor of Science majoring in Computer Applications.
He is now working fulltime and studying for Masters in Computer
Applications.
On the list we call Sinclair ONE OF THE UNEXPECTED
SURVIVORS I do hope his story inspires other young people to keep going
despite the odds given when diagnosed!
On the ESARC- LIST, his mother is Wendy.
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Stephanie L .
SURVIVOR!!!
Stephanie was diagnosed in 06/00 after
just turning 14yrs. She broke her fibula bone (the bone above the
ankle) on a track field after having numerous sports injuries to this area.
(She had 3 previous x-rays in this area all within 9 months prior to
breaking it)
Her tumor was 4x7cm with soft tissue
involvement...but no metastasis.
She started chemo in July 00 in Omaha Nebraska and
then had her fibula resected in November, 2000.
She had clear margins at the top and bottom of the
resection of the fibula, but Ewings cells approached the soft tissue margins.
We had MD Anderson review her case in December,
2000 and completed one round at MD Anderson's Cancer Center in Houston and
then brought back a new protocol to Omaha.
Jan and Feb 2001 she had radiation and continued
on with Chemo until 11/01(16 months and just finally done!!!)
She had screaming migraines non-stop from the
chemo when on the 5 days rounds and was continually given morphine since
nothing else seemed to work.
Stephanie has remained very active on the
Dance/Drill team. She is looking forward to being on the Volleyball team
again and faithfully has gone out running between chemo rounds. She has
remained on Honor roll, she is looking forward to attending USD Law School
when she graduates in 2004.
She just returned from an Elk Hunt in
Montana with her Dad and brother, where she brought home a Bull Elk 6x6 that
she is very Proud of....(mom isnt nearly as excited).
Stephanie has continued to have clear scans!!
Both photos were taken after she was diagnosed but
before starting chemo. She lives in South
Dakota with her Mom, Dad, brother Travis and St. Bernard.
On the ESARC-LIST,
Stephanie's mother is Nancy L.
UPDATE!!!!!
Stephanie is now about 1 yr in remission. 
She is now in the 11th grade and still on the Dance/Drill Team
She has been working for 3 months on her CNA Licencing in
South Dakota, has now completed her clinicals and will test soon.
In the meantime she's working about 30 hrs a week in addition to school.
She wanted to work in the Nursing Home facility because she said she
loves older
people like her Grandma, who lost her battle to skin cancer
this last year at 101 yrs.
She knows what its like to be sick, and the need for kind
people to take care of them.
She's incrediably strong mentally and physcially.
The first photo was taken in May 2002- at her brothers graduation.
Included in Photo- Dad (Scott), Stephanie, Travis (brother), Mom (Nancy)
Second Photo- Stephanie in her Pontiac Firebird - taken Sept 2002.
Steph purchased this car on Ebay with her college money, while she was
receiving chemo and it was delievered to the hospital (it was silver).
But she finally took her Make-A-Wish this year, they had it
custom painted blue 
with silver ghost flames.
She has always loved this car and it was a perfect wish come true.
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Stephanie B.
Hi my name is Michelle, my daughters name is
Stephanie Bernardo. She has just been recently diagnosed in June/02/2002 with
Ewing's Sarcoma. She is 12 years old. We live in London,Ontario. Stephanie has
quite a few tumors, but the main one is in her left fibula. Stephanie is being
treated by a really wonderful team of doctors and nurses at the Children's
hospital of Western, Ontario In London Canada. Stephanie lost her grandmother
to cancer 3 years November, and in the beginning that's all this disease meant
to her, but now she has been quite courageous in her fight against this
disease and knows that it will not beat her, she will beat it. We have only
had 2 treatments of chemo with the 3rd to start on Aug 13/02,but already we
are sure the treatments are working. Stephanie was in a grate deal of pain
leading up to her diagnoses, both in her head and in her leg, but the pain is all
gone now for that we are so grateful.
We would really appreciate any emails that
are sent are way. Stephanie has felt
quite alone with the unknown since diagnosis.
Michelle, mom to Stephanie age 12, London,
Ontario Canada
dx June25/02
Picture - Stephanie with her brother and sister
On the E-SARC list, her mother is Michelle.
This is Samantha's and her site! http://www.geocities.com/coolis_4/Thelifewithewingssarcoma.html
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Susan
Bio to come...
Pictures:
The first one is a wedding day picture.
The second one is a family Christmas picture of 2000. From left to right -
Sean, Susan's husband, Susan, Mom, and Brother.
On the E-SARC list, her father is Hwan.
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Tim
SURVIVOR!!!
Tim is a SURVIVOR! He was
diagnosed August 11, 2000 with Ewing's of the distal femur, a week before his
22nd birthday. He had his leg resectioned on Nov. 30th, a day after his
father's birthday, and finished up this last chemo on April 15th. He was in
the hospital on Halloween, my birthday, our wedding anniversary, and New Years
Eve. He did his radiation after chemo and was done with that on June
5th. Clear scans to date. He is back in
college enjoying his independence. Tim has a kind and gentle soul. Photo
1: The chemo photo was specially taken for his
ability to fold his arm behind his head...Doctor Chappy called it one of his
party tricks.
Photo
2 - Tim with his
mother, Penny. 
Photo
3 - Taken at his brothers wedding the first of
Oct., 2001, this is Tim with his aunt, Jean.
Photo -
4 - Tim with the
"lunch bunch" - the Seattle Ewing's Group dx in
2000 and treated by Dr. Schutze. From left to right Jerry, Peter, Cara,
Erica, and Tim. They had just finished having lunch to celebrate the end
of treatment for Erica
and Peter. The photo was taken the end of March 2001 just down from the
Seattle Cancer Care Alliance.
On the ESARC-SITE, his mother is Penny K. and
his father is RichardK.
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Tracy Segi (In Memoriam)
Hi my name is Tanya Segi and Tracy Segi is my little sister who had ewings
sarcoma. She is in the picture with eeyore two months before she was
diagnosed. She was diagnosed on October 14th, 2001. She started
undergoing chemo in the beginning of november and the picture tracy-scott is her
at the end of november with her fiancee Scott looking good although 3/4 of her
hair is gone. She finished her chemo in july and the picture seafair1 is
her and my daughter her niece kylee after her last chemo treatment at the beach.
They thought the cancer was gone and in october we found out that it was back
just as bad as when the doctors found it. She didn't have much hope and
started to see a kineisiologist and was goind to start radiation in January.
On December the 13th her and Scott got married. The picture cake
cutting is one of her wedding pictures. I took her down to see the
radiologist in January and the day we got back we found out her husband had a
stroke while we were gone, that was the last time she was not in a hospital.
Two days later she was having trouble breathing again so the hospital drained
her lungs again for the third time in a month.
On January
18th the doctors told us there was nothing they coudl do except make her
comfortable and that she had anywhere from a few moments to a week left to
live.
She was bound and determined to beat this though and she fought till
her last breath on January 26th. She was one of the bravest people I have
ever met and I am glad that I had the honor of being her big sister. Her
and her husband lived with me and my family for the first three months of
her having cancer, and everyday i wish that I had that time back with her,
sick or not just I wish she was back. I want her pictures on this site so
that everyone will be able to put a face to another name of the long list of
people who have died or survived Ewings Sarcoma. I want to know that even
though she died it was not in vane because one day her case may help one
more person survive. Thank you.
On the ESARC-SITE, her sister is Tanya.
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Tucker Henderson Pimpo (In Memoriam)
dob-3-26-90
dod-5-24-02
Tucker was an inspiration to many. He was
such a handsome young man. I often tell GOD if he allowed special
orders for our children, that I could not have ordered a more perfect son.
He was extremely athletic, smart, and beautiful. He was truly
blessed with a wonderful sister who also has the giftedness he was so
blessed with. Her name is McCall. She is 14 years old.
They were 2 years apart, and they were very close. She is a 9th
grade cheerleader, and she was a wonderful cheerleader for her brother.
She fought beside him all the way. She never gave up on believing
GOD for a miracle. She now knows his true miracle has occurred and he will
forever live in her heart. If you could ask Tucker what has been one
of his biggest gifts from GOD, I have no doubt he would say his dad, Mark
Pimpo. Mark met Tucker when he was 4 years old. Tucker's
natural dad and I had divorced. Interesting, I met Mark at a 5k
race. The race was to benefit ''childhood cancer''....we dated 2
years and married when Tucker was turning 6 and McCall 8. It is as
if GOD knew head of time what Tucker had to battle, and placed the
most GODLY MAN/FATHER in Tucker's life. How blessed we are to know
that we have been given a gift from GOD. Mark is a walking example
of GOD. He walks in love, and Tucker adored him. He carried
Tucker through his battle, and Tucker told him many times how thankful he
was that he was his dad. They shared so many interests together.
They loved to talk sports. Mark play football for the United States
Naval Academy. Tucker was very proud of him and told everyone of his
great dad. His dad coached him in basketball, and he had the privilege
of coaching his 'all-star team'. Tucker was all about sports.
His favorite sport was baseball. He was extremely good at it. Most
of his life he played shortstop, 2nd base or pitcher. After his
transplant at St. Judes' he joined an intense travel baseball team, and he
played left field/shortstop/pitcher. He amazed us all with his
ability to bounce back and play like he had not ever endured 1 year of
chemo, 6 wks of radiation, and a stem cell transplant [with radiation to
the lungs]. He was an amazing child with such a zeal for life.
He tried on baseball shoes up to the last week of his life. He so
wanted to get back on the baseball field.
Tucker was dx May 99 when he was 9 yrs.old. He had a localized
tumor to his scapula. He had combination chemotherapy for 48 wks and
6 wks of radiation. He was 9 mths cancer free, and then relapsed to the
lungs. We traveled to St. Judes' Childrens Hospital in Memphis, TN.
were he underwent a stem cell transplant. Tucker was 5 mths cancer
free. He lead a very normal life all during his 3 years of battle
until his relapse in Dec. Tucker was dx again Dec. 02 with relapse
to the lungs and leg. He wasn't given much hope from the doctors.
He chose the alternative route, and we headed to Mexico. He went
through the zoetron treatment[magnetic therapy]. He also did the IV
therapy of vitamins and the natural chemo laetril. Unfortunately,
for Tucker, the disease progressed, and he was in severe pain.
Tucker was tired of treatments and did not want any more chemo. He
then went on hospice care in Feb. Tucker never played baseball
again. He was in severe pain. He went from 15 mg of morphine
to 115 mg of morphine. He lost much weight, and he was not the energetic
''Tucker'' that everyone knew. To this day, it breaks my heart,
knowing how much he suffered.
He had an incredible faith. I believed that was instilled in him
from the example his father was to him. He never got angry at GOD.
He always begged GOD to take the pain, and he always said,' 'I love you,
Jesus''. Tucker believed GOD was going to miraculously heal him on this
earth. He trusted GOD to do that. I know that he is forever
happy with his healing he now has. He is probably playing the
baseball game of his life. His dad gave the message at our church on
Sunday. He said the most beautiful words...''I believe when my
family gets to heaven we will see a stadium filled with thousands of
people and Tucker will be standing on the pitchers mound, but we won't see
any baseball....and GOD will tell us, it's not about the baseball game you
are here to see...it's about the thousands of people who came to CHRIST
because of Tucker's life''.
Tucker never died. The moment we saw him take his last
breath on this earth, the next moment he was in the presence of our LORD
AND SAVIOR, JESUS CHRIST. He did an exchange. He never
died....TUCKER FOREVER LIVES. I look forward to my homegoing so I
can be greeted at the gate by him. I thank GOD daily for giving me
the gift of Tucker for 12 years. I am blessed.
Tracy Pimpo, a proud mom of one of God's special servants, Tucker Pimpo.
On the ESARC-SITE, his mother is Tracy. mtpimpo@eagnet.com |
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Tyler
he was diagnosed with ewings and had his first
radiation on his 11 birthday
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Yvonne C. Mcpadden (In Memoriam)
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Hello my name is Lurleen and I would like to tell
you about one of the greatest gifts God has ever given me my daughter Yvonne
(Von). Von was dx with Ewings in her right hip and metastatic disease in both of
her lungs in May of 2001. There weren't any warning signs that I could see. Von
fell of a see-saw at day care and hurt her hip the doctors did and x-ray and
found nothing then three weeks latter when the pain became more severe another
x-ray was done and then a CT scan. It was then that I was told she had a
mass in her right hip and we were sent to Vanderbilt childrens hospital in
Nashville TN. There we learned her diagnosis. The odds were never in our favor
but that never stopped Von. She was scared at first but then God took over. I
still am in awe of the faith I saw in my eight year old daughter. She went
through 8 months of in patient chemo, a hip replacement, and 12 weeks of
radiation. Von was cancer free in January and she turned nine on January 19,
2002. Then in March of 2002 she started having pain in her left leg. Test found
the cancer was back in her skull bone, left top femur, and two more tumors in
her right hip. Von chose not to do more chemo. The doctors told us her cancer
was terminal at this time but Von continued with radiation to all the new
tumors. She never wanted to die but she was not afraid. She told everyone she
new that "Jesus can heal me if he wants to but if not then he
needs me in heaven." She ask me to never give up on her and I never
did. On Wensday April 17 2002 Von started having trouble breathing we went to
the hospital and found out that the cancer was back in her lungs and that she
was dieing. The doctors said any day. During the last days of her life she saw
everyone she loved. She wasn't concerned about herself she was concerned for
everyone she loved. At 3:30 Sunday morning April 21 2002 Von woke up and said
"Mom I can't do this any more." I knew then that she was tired and I
think for the first time I knew I had to let her go. I knew that she wasn't mine
to keep now but that God was calling her home. Her job on this earth was
complete she had served God well and now he was rewarding her. I told my Mom to
call everyone and I woke her brothers up. At 9:00 A.M. Sunday morning Von left
my arms and arrived in the loving arms of Jesus. My heart is still broken
because of the love she gave that I miss so much but I know that I will see her
again one day when God graciously calls me home. Her brothers Dustin 12 and Dee
11 miss her they fought the cancer with her and never gave up hope. If one
person was saved by meeting her or hearing her story it would all be worth it to
Von. To all the doctors and nurse at Vanderbilt you are the best Von loved all
of you. I thank God every day he chose me to be Von's Mom. The pictures are of
Von, Dustin top, and Dee top right.
On the ESARC-SITE, his mother is Lurleen.
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