Photo Gallery for Ewings Sarcoma List (ESARC-LIST)

J- O

Put faces to the names!

Jake was diagnosed on Feb. 12, 2001...his 14th Birthday, with ES to the sacrum, vertebrae and skull.  He died peacefully with his Dad and I holding him. He died from a gram positive bacilli and enterococcus infection on Dec. 7, 2001.

Jake never let his cancer interfer with his life.  It was an inconvenience, but he never complained about it. He took it in stride every day.  He always said, "It could be worse!"  He loved his family and brought us closer together during the past 10 months.  He had an infectious laughter and an ear to listen to all.  He was known for his spiky hair, but the bald look suited him and I loved kissing that bald head.  I miss our morning cuddles, his sense of humor, his blowing kisses to me, the bear hugs and our late  night heartfelt talks.  He was always more concerned about how everyone else was doing and not himself.  We miss him terribly, but we know he is our sweet angel watching over us.  He left his imprint on so many lives, but more, so many lives left an imprint on him.  Rest in peace my sweet baby.

First  picture:  Jake and I in May at my parent's 40th wedding anniversary.

Second picture:  Jake 3 months before his diagnosis.

Third Picture: Jake being silly (just classic Jake) June 2001

Fourth Picture: Jake and Family July 3, 2000

On the ESARC-LIST, his mother is Kathy.

http://www.caringbridge.com/il/jakepritchard/

http://www.geocities.com/jakesjourney/index.html (This site is a great honor to Jake.) 

Jamie Mellor (In Memoriam)

Jamie was 22 years old and was diagnosed with ES of the pelvis in August, 1998.
He was the joy of our lives and hope for the future. Jamie died on Christmas Eve 2000.  Nothing else would have ever parted Jamie and Katie (also pictured here).

On the ESARC-LIST, his mum-in-law is Pauline.

Jennifer

SURVIVOR!!!

Hello and a big hug to the ESARC-LIST! I was diagnosed with ES on August 24,
2001. The tumors are on my right lateral chest wall and axilla. As of
November 27th, I've completed three chemo. treatments and am awaiting
surgery. After surgery I will have 3-6 more chemo. treatments followed by
radiation. My husband Paul (my hero) and I were married this October in
Brooklyn, NY. We are proud to live in New York City.

The picture on bottom left is after I finished treatment!
My email address is jliberts@yahoo.com   

Jon

Jon was diagnosed 3-28-01 with ES of the right femur. He underwent surgery 8-28-01 and his bone and knee were replaced with metal and plastic. He has 10 more chemo treatments to go; should be finished in May 2002. Jon was 23 when diagnosed; turned 24 on July 30. 

Pictures:

• Top: In the picture is Jon, his wife Julie, and their dog, Buddy.

• Bottom: Jon and Julie. 

On the ESARC-LIST, his mother-in-law is Louise. 

Jon passed away on August 19, 2003. Until Linda provides some words to us,  here are a few to her...
Jon will never be forgotten by all of us, Linda. Our hearts and love are with you always.

Written 7/22/02

On the E-SARC list, his mother is Linda.

SURVIVOR!!!

Jonathan is 10 years old and was dx on June 19 of 2001 with PNET (primitive neuroectodermal tumor) of the Ewing Sarcoma family in the left chest wall with small ones in the lungs. He started quemo on June 23 and still has quemo around every two weeks. He had surgery on January 15 of this year and everything went great. He went in at 7:30am and out by 10:30am, at 5:30pm he was walking around with the nurses. He still has about 3 to 4 months of quemo and then some radiation.
One thing for sure is that cancer has changed our lives forever. Jonathan was a shy and scare boy and know he is strong and winning his battle. He has shown us the true meaning of valor and courage to all in our family and friends.
In the pictures there is also my husband Howard, my best friend and support and our young son William who is 7 years old and having a rough time understanding what is going on with his brother.

Picture on left - Howard (dad), Jonathan & William in tux for his uncle's wedding

Picture on right - Jonathan and William at the party

On the ESARC-LIST, his mother is Veronica.

CaringBridge - jonathanmurray

Born December 16, 1980
Wife is Michele and daughters are Michele and Anna.

My husband was only 18 years old when he was diagnosed with ewing's sarcoma on the pelvis. He was on treatment from February 2000 to his death on October 28.2001.
He was the most wonderful person in the world to me and to my daughters. It's been more than a year ago and I still miss him a lot. He was everything to me , he was a very strong person and he was kind and funny all the time. He did everything he could to keep on going but I guess it wasn't enough. I always told him I was so proud of him and that I never met nobody like him with that power and faith he had in God. He is still the love of my life and he will always be. I really do miss him and sometimes I wish he was here with me and my babies, but I know he is in a better place right now and he is in peace. May God bless him and everybody that suffers from this terrible disease.

The first two pictures are of Jose and Michelle. 

The third picture is of their children, Michele and Anna.

Email address: RMICHELE7@aol.com 

Josh Hagler (In Memoriam)

Josh was diagnosed on Sept 25th 2000. He had a tumor in his right upper thigh
with "hundreds" of mets to the lungs. He responded well to begin with and the
tumor shrank and was no problem. He developed an unknown allergy to the
heparin used to flush his Hickman and his platelets would not respond. He
developed brain tumors in March and was in limbo because of the platelets.
The Lung tumors began to grow without Chemo and he had rapid decline in May.
He left us on May 24th. He was a clown and liked to act. He went to a
performing arts school with his twin sister. He loved paintball and rock
climbing. He kept us laughing. He rarely complained and set an example for
all of us on how to die with dignity. He was a very grownup 14 when he died.

On the ESARC-LIST, his mother is Jill and his father is Steve.

Josh

SURVIVOR!!!

HI all,
I am the father of Joshua Abramsohn, who was diagnosed 1/01 in his left proximal Femur after 2 years of misdiagnosis.
He went through prosthetic hip and upper leg replacement with Dr. Martin
Malawar's team at the Washington Cancer Center on 4/18.  He had been through
3 months of chemo and went through 9 more, with his last chemo on 12/26/01.
His scans have been clear up through his most recent in April of 2003.  I am
enclosing some pictures, one during his chemo treatment, one in scout camp
the next summer receiving the  highest religious award for our faith, and
one of him and his friend Christy at her PROM in April of 03....   In July
of 2001, while in Chemo, he and I took a week between treatments to go to
scout camp (1 year before the picture), and in May of 2002, he did several
scout hikes in the Gettysburg battlefield, one for 9 miles and several for 3
or 4.  He is a wonderful success story for both the limb salvage surgery and
as a SURVIVOR!.  I had been following many of the cases who now have
pictures in the ESARC gallery and am also glad to see who they were and that
many are still with us. I was downsized in Josh's 11th month of treatment,
and found work about 5 months later at HP.  I can now be reached at
DennisA@HP.com <mailto:DennisA@HP.com> , where we moved from Upstate NY to
Boise ID at the start of Josh's Junior year of High School - a terrible but
somewhat less traumatic experience than the cancer.  Be well, Dennis


  

 SURVIVOR!!!

 Kayce was diagnosed in May 2000. She had a volleyball-sized tumor in her pelvis with mets to lungs and skull. She received high dose chemo from Dr. Rosen at St. Vincent’s Cancer Center in New York City. Dr. Rosen successfully shrunk her tumor down with chemo. Kayce then had radiation to her pelvis and head. During treatment she had 4 stem cell transplants. When her chemo was finished she went out to California and had surgery performed by Dr. Eilber. Dr. Eilber took out part of her pelvic/pubic bone. After surgery she went back to New York and had radiation to her lungs. Kayce finished treatment in July 2001. She recently finished her first semester in college and is feeling great.

Visit Kayce's web site... http://www.geocities.com/ewings_sarcoma/welcome.html

Kayla

SURVIVOR!!!

Kayla (her real name is Michaela) was one when she was diagnosed with ewings of the femur. We think she had it for quite a while because when she learned how to crawl she drug her leg. She is now 2 years old (June) and had a new type of surgery on her leg after 12 weeks of chemo. She has a orthopedic oncologist for her doctor and he took her case to Boston with 50 other ortho-oncologists and they came to the conclusion of this surgery. Her tumor was pretty big (1/3 of her femur) and was invasive into the soft tissues and the top of her femur bone to a little above her knee. The chemo shrank the tumor a good bit and they took her fibula (one of the small bones in her bottom part of her leg) and replaced the femur. They say since it is her own bone it will adapt better and maybe even grow thicker. When they changed her cast the doctor said it is adapting somewhat as he could rotate a little bit and it did not come out of the socket. It's all pretty experimental but she still has her leg and we are all hoping and praying for it to work good for her.

Update: Kayla's cast was removed in July, 02 and she is now in a brace! Yeah, Kayla!

On the ESARC-LIST, her mother is Heather and her grandmother is Rita.

This is Kayla with her Makeup and "wipstick"!

This is Kayla with Gramma Rita!

Click on the newspaper image below to read the article about Kayla!

Katie

SURVIVOR!!!

I was diagnosed with PNET/Ewing's Sarcoma of the right distal tibia on November 30, 1999. I had sporadic pain for four-six months prior to diagnosis, but the first x-ray was taken only two weeks before diagnosis. I was immediately seen by a specialist at Children's Hospital, Boston. He ordered multiple scans, and performed a biopsy. Within a week, I was told that I had a malignant bone tumor. More scans were ordered, and I had another surgery December 8 to biopsy my lungs, right ulna, bone marrow, and to place a port a cath in my chest. After recovering for two days, I began chemo on December 11, 1999, exactly one month after my 14th birthday. After the 12th week of chemo, I had an allograft placed in my right tibia and right ulna (a questionable lesion was found, but it was negative). I recovered for a few weeks and resumed chemo, which finished December 8, 2000. I went through all of my treatment at Children's Hospital, Boston and Dana Farber Cancer Institute/The Jimmy Fund. I have had clear scans to date, although I was recently diagnosed with fibromyalgia. I am currently working to find a possible treatment for the constant pain, but it is difficult. No matter the pain, I try to live each day as if it weren't there. I am a senior in high school who is busy with "typical" teenage things, like football games, college applications, SATs, and prom. With so much to be done, who has time to think about pain?

    

SURVIVOR!!!

October 20^th, 2003

Kenny was diagnosed in October 2002 with localized Ewing’s sarcoma.  He was 14 years old and had just started El Dorado High School as a freshman.  Beginning in June 2002, Kenny started experiencing pain in the left hip area.  X-rays were ordered by his pediatrician to determine if he had a difference in leg length that may be causing the pain.  Those came back as negative.  The next step was blood work.  Kenny had an elevated ANA (Anti-nuclear antibody) found in most people who suffer lupus.  He was referred to a pediatric rheumatologist.  Our appointment was set for 4 months away from the time of referral – November 1^st.  I spent months arguing with the pediatricians’ office, the rheumatologist office, our insurance company trying to get him seen sooner.  We got an urgent referral to UC Davis Medical Center to see a pediatric rheumatologist.  After 10 days of calling and waiting, waiting and calling, we were turned down.  The reason given was our insurance company would not authorize an MRI without Kenny first seeing a specialist and the specialist, who was only at the hospital once a month, would only see him if he had an MRI.  After months of waiting we were back to square one – waiting for November 1^st.  By this time, Kenny was on 800 mg of ibuprofen (per doctor’s recommendation) and couldn’t sleep.  The advice nurse at the pediatricians’ office told me not to worry.  Kenny’s blood work didn’t have any markers for cancer!!!!  It was most likely not something life threatening!!!! 

The day after we were turned down, September 7^th, 2002, we were in the pediatricians’ office to get answers NOW.  He was sent in for a stat blood test (which no longer showed an elevated ANA).  We were referred to a pediatric orthopedic specialist for the next day.  A bone scan was done on September 22nd, 2002.  We received the results the following week.  The report said something was going on.  There was clearly activity on the left side of the pelvis.  An MRI was ordered.  The first MRI was cancelled because Kenny was in so much pain by that time he could not lay down on his back for any extended length of time.  The next day he was in for another MRI.  This time they put him under.  I picked up the MRI October 10^th, 2002 and hand delivered it to UC Davis Medical Center. 

Kenny had a large tumor wrapped around the left side of his pelvis (aggressive large primary osseous lesion, centered in the iliac crest and extending medially into the iliopsoas muscles and laterally into the gluteal muscles.  This measures 12 cm in height x 7 cm in transverse dimension and 7 cm in AP dimensions).  It just bordered the sacrum and ischium (hip bone) and was growing out of both sides of the left iliac.  Kenny started chemotherapy October 31, 2002.  After 4 rounds of chemotherapy, Kenny’s tumor had shrunk about 1/3.  It was still huge!  In addition, the gluteus muscles were rather involved.  I was told radiation, in regards to statistics, was just as effective as surgery.  Surgery could be very risky in Kenny's case.  I was also told because the tumor was still rather large that radiation also had risks involved in regards to secondary cancers and side-effects.  I think the most important thing I was told was Kenny's tumor could be large and dead or barely detectible and alive.  The smaller alive one was much more of a problem than the large dead one.  I think Kenny’s doctor had been clear from the beginning that he just didn't know which course to take.  That he would do his best but he had little control over the outcome. We went into surgery thinking we would need to do both surgery and radiation, but ended up with clear margins and the tumor was 100% dead!

Going through surgery with Kenny, February 26th, 2003, was the hardest thing I have ever encountered in my life.  I was told originally it would be 7 to 14 days and he ended up in the hospital for almost two months.  He underwent a combined 31 hours of surgery.  He had his left iliac bone removed and replaced by a cadaver bone (17 hour surgery).  Most of his gluteus muscles were also removed and his lat muscle on his back was pulled down to provide increased blood supply to the surgical site (10 hour surgery two weeks later).  Emotionally, Kenny had one major breakdown in the hospital a month or so after his surgery.  He so badly wanted to be 'normal' again.  He wanted his old life back; he wanted to hang out with his friends.  He was very vulnerable. 

Kenny is still on crutches, but improving just a little every day (Oct 2003).  I am very impressed with Kenny and I was very impressed with the surgeons (he had 3) at UC Davis Medical Center.  Pelvic surgery is very risky in regards to infections.  Kenny still has an open wound/blister on his side that leaks occasionally.  His body is still trying to heal from the inside out.  We have been fortunate that Kenny has fared well through chemotherapy (only requiring one blood transfusion) because this type of surgery really does a number on the body.

Kenny just completed his last treatment this month (Oct. 2003). I hope that in sharing our story we can help others battle this horrific disease. Please email me any time with questions.

Ramona

ramonak@directcon.net

MOM to 15-years-old  Kenny, 15-years-old Connor, 4-years-old Rachael, 3-years-old, Ryan, and wife to a wonderful husband and father, Michael.

In April, 2003, my then 4-year-old son, Kevin Weir, was playing soccer and began limping and acting ill one weekend.  I took him to the pediatrician's office the following Monday, where the doctor immediately suspected a bone infection (osteomyelitis).  Kevin was admitted to the local hospital that day and placed on IV antibiotics.  He was then seen by an orthopedist, who had the antibiotics continue for a month at home.  Only plain X-rays were ever ordered.  As soon as Kevin's PICC line was removed, he felt sick all over again, complaining of pain in the same area and was generally lethargic.  I took him back to both the pediatrician and orthopedist who ran a series of blood tests.  I was told that Kevin most likely had a rheumatoid condition -- either rheumatic fever or rhematoid arthritis, and that Kevin needed to see a pediatric rheumatologist.  Quite often, Kevin's pain was being dismissed by the doctors.  Instead, they looked at blood work and some strange rashes he had.  After months of attempting to secure an appointment with a rheumatologist (and increasing amounts of pain for Kevin, with increasing amounts of Motrin), we finally saw a pediatric rheumatologist in Houston (we live in Plano, Texas, just north of Dallas).  After examining Kevin, the rheumatologist immediately suspected a tumor.  She wanted to know what the results of Kevin's bone scan were -- when I told her Kevin had never had a bone scan, she flipped.  Kevin's bone scan was scheduled for the next day (Sept. 3).  We were in the room as the scan was performed.  The scan immediately showed that Kevin's entire right pelvic bone was black.  I didn't know what that meant, but knew it wasn't good.  Originally, we were to drive back to Dallas and call for the bone scan results; however, the tech thought we should stay and speak to the doctor in person.  The doctor let us know that there was a very good likelihood that Kevin had a malignant tumor -- she suspected Ewing's, but told us there was an outside chance that this was a strange infection.  The doctor had prepared us for the worst:  Ewing's that may have already metastasized to the lungs and crossed the abdominal wall, since it had now been 5 months.  She told us to pray for the insidious infection -- what an odd request.  We returned to Dallas that afternoon (a numbing 4-hour ride on our 15th wedding anniversary).  On our way, the pediatrician's office called to let us know that Kevin was scheduled for an MRI the next day and immediate admission to Children's Medical Center - Dallas, where further testing was done.  Each and every doctor that entered Kevin's hospital room let us know that he/she thought Kevin had a malignant tumor.  We had never seen so many doctors in our lives -- orthopedic surgeons, infectious disease specialists, and finally, hematologists/oncologists.

The biopsy was conducted by an orthopedic oncologist.  Ewing's Sarcoma of the pelvis was diagnosed -- luckily non-metastisized.  Kevin begin chemotherapy the day after the final pathology report was in.  He is on the standard COG Ewing's protocol.

Both Kevin's oncologist and the surgeon let us know that the location of Kevin's tumor was not good.  They felt either local control choice (radiation or surgery) would leave Kevin permanently disabled (immediate disability with surgery or eventual disability with radiation because of growth issues).  It was so hard to picture that.  Once Kevin began chemo, his pain seemed to disappear.  Very difficult to think, that whatever decision we would make, it would leave him unable to walk someday.

Because we knew we needed to make a decision in December, we decided to expedite Kevin's Make-a-Wish trip to Disney World.  Right before we left, Kevin had new scans, which revealed a dramatic response to the chemo.  The oncologist and surgeon were ecstatic -- believing that Kevin could have surgery that would even leave him with a fully functional leg.  The doctors said that these were the results they had hoped for, but never believed they would see.  Needless to say, we were ecstatic as well.  The trip to Disney was fantastic, as we truly had something to celebrate.

Our celebrations were somewhat short-lived, as Kevin had his second echocardiogram after our return.  The results showed that adriamycin had an adverse effect on Kevin's heart muscle, weakening it pretty significantly after only 2 rounds (actually 1 3/4 rounds -- his second was reduced by 25% because he had become so sick after the first round).  Kevin's onc felt the decision to continue or discontinue adria would be best made after surgery -- once the tumor's state was assessed.  We are praying for a 100% necrotic tumor, and only temporary heart damage.

Kevin's pelvic resection is scheduled for January 9, 2004.  He will be having an allograft from an adult cadaver femur (the surgeon will reshape it into a child-sized pelvic bone).  The most trying time should be recovery, as the surgeon let us know that Kevin could not bear weight on his right leg for 6 months!  We laughed when he told us that -- Kevin is a very active, normal 5-year-old boy.  The surgeon also warned us that there was a very good chance that Kevin would need another graft/further surgery after his year of chemotherapy was completed.

Kevin has two big sisters:  Michelle, age 12, and Laura, age 8.  He also has a dog, Max, whom he refers to as his "brother."  Kevin began kindergarten in August, but has attended very little.  The school and teachers have been fantastic, letting Kevin come and go as he is able.

We are getting to know the entire staff at Children's Medical Center quite well.  So far, we have been very impressed by the oncologists and nurses.  They treat the entire family, and have been very open and accessible.

We have also realized how truly blessed we are.  We have such fantastic support from our family, friends, neighbors, and even strangers.  We knew we lived in a nice area, but had no idea the sense of community that this experience has taught us.  The E-Sarcoma list is also an incredible source of information and strength.  We share so much, both heartache and joy.

Kevin is also a great source of inspiration and strength.  His sense of humor and downright orneriness should carry him through.  He never ceases to make us smile, which is such an incredible gift.

On the ESARC list his mother is Jennifer.

My name is Kim and I am 22 years old.  I just found out I have Ewing's for the THIRD time.  Can you believe it!?  Yea, neither can I.  I was first diagnosed in 1996, at the age of 15.  The tumor was found just between my right tibia and knee.  I had 3 months of chemo and then a limb salvage done.  My entire knee and tibia were removed and replaced with a titanium prosthesis.  But I have my own skin!  My muscles, tendons and nerves were all reattached to the prosthesis.  All I have is a (rather gnarly) scar.  I was the first person EVER to have this exact surgery.  After it, I had 10 more months of the ever-so-fun Ifosphomide, Vincristine, Adriamycin and Cytoxin.  Yum yum.  But alas, I survived.  I graduated High school on time, traveled to Europe and moved away to UC Davis.  I was a normal gal again. 

Just before my 2nd year of college (4 years later) they found it had come back in my lung.  I had a lobectomy, 4 months of Taxotere (a breast cancer drug), and a month of radiation.  I was bald- again.  Wow, how wonderful being bald is to a girl's self-esteem.  Can you sense the sarcasm?  I guess it's not as obvious to those who don't know me, and are reading my story.  Well, I am being sarcastic- I hate being bald!  But, again, I survived it. 

Now, it's been 3 years since then, and they just found it on my kidney!  Apparently I wasn't the only person who was shocked.  A third metastasis, and one to the kidney no less, is not a usual thing.  I'm going into surgery on November 24th.  They're not sure if they will take
the whole kidney or just the mass.  My doctor is waiting to hear back from all the Ewing's Sarcoma "gurus" all over the country to figure out
what treatment will follow.  I'm 90% sure that I'll be bald again though.  As petty as it may sound- this almost bothers me most of all.  I
mean, I can deal with the pain.  And I can deal with throwing up all stinkin' day long.  But I'm 22!  Give me a break.  I really don't want to
be bald again.  And I'm really sick of these interruptions in my life.  I just want to graduate college already!  Once I finally do this, I plan to
go into the field of Pediatric Oncology (I can't imagine why). 
So here is a plethora of pictures.  I had to include several because my look changes just about everyday, and pictures can't nearly
capture the multi-faceted personality that I am.  Please, feel free to write me anytime!  I love talking to others about this- I consider myself
an old pro.

Kyle Tyczinski (In Memoriam)

On the ESARC-LIST, his mother is Rachel. 

Kyle's mother and sister (Rachel and Tamara).

Kyle Lee (In Memoriam) 

. Kyle Antony Lee (In memoriam)
April 14, 1989 - June 14, 2003
www.kylelee28.com

Kyle was born on April 14, 1989 in Huntington Beach, California. He has one
little sister, Taylor Brooke Lee (9 years old), and one little brother, Cody
Tristan Lee (4 years old). He went to Stork Elementary and Alta Loma Junior
High School. He loved sports and the outdoors, especially the beach. He
loved watching movies and listening to music. He loved the Simpsons. He
loved reading, especially the Lord of the Rings and Harry Potter series. He
loved video games, starting his obsession with Gameboy and Super Nintendo at
the age of three.



At the age of 12, Kyle was diagnosed with Ewing's Sarcoma in November 2001.
He underwent treatment at UCLA, and a tumor was successfully removed from
his right humerus. Unfortunately, other tumors spread soon after his
operation, and Kyle underwent further chemotherapy and radiation treatment.
Opting for other types of treatment, Kyle moved to City of Hope. He
underwent more aggressive chemotherapy and radiation treatment. The tumors,
unfortunately, spread further, eventually moving to his liver. Kyle returned
home, where he passed away peacefully with his family and friends on June
14, 2003.



Kyle's life was full of joy, and he maintained his great spirit even through
chemotherapy. From his nurses to his own family, Kyle's sense of humor and
courage was an inspiration to us all. Through all the pain, he continued to
laugh and smile. Even in his final moments, Kyle showed true unselfishness
and love by concealing his pain to spare his family of sadness for him. He
said he was ready to go to heaven and wasn't scared. Kyle taught us the
preciousness of life. Kyle and his love, laughter, thoughts, and voice will
be deeply missed.

The kid with Kyle on one of the pictures is his 4 year old brother Cody.

His parents are Mark and Aileen Lee.

SURVIVOR!!!

Lauren was diagnosed 2/18/02 at the age of 13.  She had an "ostrich egg" sized tumor in the pelvic area leaning against the bladder.  

The symptoms
that caught the tumor were unrelated and this was caught by accident.  The tumor was completely removed on 2/22/02 and it 

didn't appear to invade the bone or the bladder.  She started chemo on March 6 (14 total treatments 3 weeks apart) 

and started radiation on June 4 (total of 25).  She is being treated at Kosair Childrens Hospital in Louisville, KY.
She loves to play the violin and has been taking lessons for 6 1/2 years. 
She was recently accepted to the Youth Performing Arts High School here in
Louisville, KY (she was the only violin accepted this year - quite an honor).
 Although she will miss her first semester in high school, we hope and pray
that they keep her spot for her.  Besides the violin, she loves to play
soccer and swim.  Despite all that she has been thru, she still has a
beautiful smile and a tremendous faith in God.  We can't wait to see what big
plans he has for her!
You can e-mail her at violinleb@aol.com.     

On the ESARC-LIST, her mother is Karen B.

Lauren was diagnosed with Ewing's sarcoma on Oct. 31,
2002. She had surgery to remove a tumor in her lower
spine on Oct 28th, 2002. The biopsy results said
Ewings, but all her other scans of lungs and bone
marrow were fine. She has been undergoing chemotherapy
since she was diagnosed and we are now in the hospital
for her final treatment. We are very excited and her
prognosis is very good. This picture was taken right
before she was diagnosed last year.

She just finished her last chemo on Aug 23rd. She has
all her scans the first week in September. Her tumor
was located on her lower spine. They were unable to
remove all of it but were able to resect 2/3. She also
went through 5 weeks of radiation in April. She is
doing great and has such a positive outlook on things.
Which makes things soooo much easier on all of us.

On the ESARC-LIST, her mother is Jessica.

SURVIVOR!!!

Hello Everyone!  My name is Lexi and I will be 12 in June 2003.  I was diagnosed with Ewings on October 4, 1996.  The tumor was originally on my fifth rib, on the right side, with mets to my entire chest cavity.  I had four months of high dose chemo.  Next, i had surgery.  I then received radiation to my entire body, and more chemo.  Finally, i had a stem cell transplant.  My own stem cells were removed, frozen, then put back in my body.  All my treatment was done at Children's Hospital of Wisconsin.  I go back yearly for a check up with my oncologist and labs.  Due to intense radiation I am also on a growth hormone shot.  I began in October two years ago, when i was growing half an inch each year.  Since then I have grown about five inches, but i am still the smallest one in my class.  To get the full scoop on my diagnosis and treatment you would probably want to talk to my mom, Michelle, on the Ewings list.

Liddy was diagnosed 4/4/02 with Ewing's sarcoma after her left calf muscles
atrophied, and after having night-time pain in her foot for 8 years.
Baseline tests showed no mets, and she received 4 cycles of the standard chemo
protocol before having the primary tumor (which was behind her left thigh in the
nerve) resected.  A chest CT scan after surgery showed that lung micromets.  She
had 31 treatments of radiation to the local site and much more chemo. She
participated in 2 Phase 1 trials, and 4-5 other treatment regiments
to hopefully address the lung mets and brain mets (which required brain
surgery and whole brain radiation to get control of).  Currently, she is
battling a painful abdominal tumor with radiation.

A summary of her treatment can be found at
http://theshrivers.us/Liddy/treatment_summary.htm. 

 (More information is available on the treatment; please ask if interested.)   
She keeps a daily online journal which she hopes helps others in their 
journey with Ewing's.
See http://theshrivers.us/Liddy/journal.htm.

She has also gathered together information on Ewing's sarcoma at
http://www.teamsarcoma.org/ewing's_sarcoma.htm.

This picture is Liddy with her husband Tom.

I am 17 years old and was diagnosed with ewings of the pelvis the size of a baby's head on June 14, 2001.  I have been getting chemo since then and it is now the size of a thumb!  I started radiation on 1/4/02.  Things are going very well.  These are some of my senior pictures.  They were taken 3 days after i got out of the hospital before my hair fell out.

Liz joined the group when a close friend of her son was diagnosed with Ewings. As a result she has been a support to the parents, her son, and to all of us. Shortly after she joined the group the ESARC-support server went down for 3-4 days. When it was back up, it was Liz that started a list of names and email addresses of members so they could always be in touch with someone if the server went down again. That list is now on a page of this site. She gives encouragement to all who need it, has a wonderful sense of humor, and we are very lucky to have her on our side.

The picture shows Liz with her daughter and twin sons. 

Maddison

7/22/03

This is my daughter Maddison. She is 3 1/2 years old. She was diagnosed with Ewings sarcoma 8 days ago. The mass is growing off of her ribs on the left side and is the size of a melon. It has pushed her trachea into her right arm pit and her heart is underneath it in her back. Her left lung has been compressed to the size of a small apple. And she had no signs of illness or distress other than a small lump on one of her ribs that I noticed last Thursday night when giving her a bath. I knew it hadn't been there that morning so I took her to the ER and they sent me home. The next day I took her to a PEDS walk in clinic and they sent her straight to PEDS ICU. I am so scared I can't see straight. My baby has been through more in the last week than we will probably ever go through in our life-and this is just the beginning. Maddy loves Barbie and Care Bears and soft pinks and purples. She loves to sing and dance and make her mommy smile. She has the sweetest most genuine personality I have ever known in such a young child. She is the greatest thing my husband and I have ever done in our lives and truly felt blessed by god the day she was born. Thank you for letting me share this.          

                                                    Holly

www.caringbridge.org/nd/maddison 

Matt R.

SURVIVOR!!!

The picture on the left is a picture taken of Matt last November 2000  
two weeks before he was diagnosed with Extrosseous Ewings Sarcoma of the left calf  muscle and neuro vascular bundle.   The tumor was localized and he has had clear scans to date.  Matt was 16 at the time of diagnosis and is now 17.  The picture on the right was taken this past September and is his Senior picture.  Matthew's last chemo treatment was December 11th. 

Matt and his mom, Nancy.

On the ESARC-LIST, his mother is Nancy R.

Michael lost his battle on September 18, 2003.  This poem has been written by his loving wife, Lesa.

Michael J.

SURVIVOR!!!

I'm Michael Johnson (the one pictured on the left). I had a rare form
Ewings Sarcoma at age 12 (1982) in the bone at the top of my cranium. I had 1.5 years of chemo and 5 weeks of High Dose radiation.

I'm am now 32 years old with no sign of relapse. I recently had a
problem with the silicon plate that was put in when I was 13, and had
it removed along with a free tissue transfer so that the skin could
re-heal.

When I was 12, half way through the chemo, my Mother took my sister and I to Disney World thinking that it would be a last chance to do something as a family. And just this year (September 1, 2002) we had our wedding there with 60 of our family members.

I now live a completely normal Life.Please post my picture to show others that long term survival is possible.

Thanks!

Michael Johnson
http://www.bobbing-heads.com

My son, Michael who is 15 ½ years old was diagnosed with Ewings earlier
this month.  He had been having bone pain for about 2 years prior, and
each time I took him into the doctor's they told me that it was simply
growing pains.  Mike had grown over 13 inches in 1 year, so it seemed to
us to be a logical answer.  Mike never complained that the pain was
excruciating, only that it was irritating.   This summer, Mike started
limping and favoring his right leg.  Again, I was told that it was
growing pains, and that it was very normal for boys to experience this.
Mike continued to play Football and went on to train for Wrestling.  On
November 30th I observed Mike favoring his right leg a lot, and made
mention that I felt I should take him to the doctor again.  Mike got
upset with me and said that the only thing the doctor was going to tell
us was that he was having growing pains and send us home, and that in
the mean time I was going to pull him out of school and make him miss a
day of wrestling practice.  I actually entertained his comment and
thought that he was probably right, however later that night I noticed
how different his right leg looked from his left (smaller) and decided
that I would take him in anyways.  On December 2nd I took him to see a
doctor again and implored her to look into it further.  She graciously
did, and had x-ray's and blood work done.  The next day my husband and I
were called back in with the news that they found a large tumor in
Mike's pelvis.  We went to 5 different hospitals in 3 days getting bone
scans, chest x-rays and meeting with oncologists and bone specialists.
The following Monday morning Mike had surgery which included a bone
biopsy on his right side, (which confirmed he has Ewings Sarcoma) and a
bone marrow biopsy on his left side which came back negative.  The chest
x-ray show's a small lesion in his right lung as well. 
Mike started his first round of Chemo on December 15th.  His second
round will begin tomorrow.  I have asked the oncologist about Mike
getting treatments every two weeks as opposed to three, and he said that
if Mike rebounds quickly enough then we can do it.   The only reason why
it wasn't done this time was due to the holiday's which meant that Mike
would have had to take Chemo in the hospital, which is full of people
with Influenza.  The doctor weighed the options, and decided that it was
better to wait 5 day's and begin on Monday then to subject Michael to
Influenza which seems to have gripped so many people in our area.   I
have checked around, and have been told that the Oncology team that we
are working with is by far the best in the Denver Metropolitan area.   
Mike's attitude towards all this is better then we could ever imagine.
He simply looks at it as an inconvenience and is always talking about
playing football next year.  We find ourselves getting really worried
when he's tired which thank God, hasn't been too often.  Most of the
time he's up for video games and pillow fights with his sister and I,
and he watches a lot of football with his dad. 
Most mornings when I wake up, for just a second it all seems like a bad
dream.   Mike has always been so healthy and energetic.  I've read a lot
of the letters that people have written at this site, and wonder if our
journey will be the same.  I just have no idea what to expect.  It is so
overwhelming.  Nights seem to be the worse for us.  When all is quiet
and Mike's asleep, the enormity of the situation sets in.   The unknown
is so scary. 
Thanks for being here,
Lacene Downing, mother of Michael, diagnosed December 2003.

On the ESARC list, his mother is Lacine and his uncle is Dan.

His web site is www.michaeldowning.org.

Nick  K.

SURVIVOR!!!

Nick was 14 when he was dx May 14th 98' with ewings in his lower right jawbone.  After 11 mos. of chemo and 6 weeks of radiation the drs. said he was in remission in April 99'.  Nick is coming up on his 3 yr remission next month!  The first picture is his school picture, the fall of 99'.he was 15....the next one is a picture in the summer of 99',   he was 15...the third one is a Homecoming 01'  picture, he was 17. 

Nick turned 18 on March 7, 2002.

On the ESARC-LIST, his mother is Tina.

My son Nicolas was diagnosed on 11/12/01 Right Lower Fibula under his knee & few spots on his lungs, he had 5 treatments and the tumor was removed on 2/14/02. We have continued treatment at NYU with Dr.Rausen.

chemo til Nov 2002.

On the ESARC-LIST, his mother is Michelle.

Olivia was a  healthy, active, vibrant girl until she started experiencing back pain just before
her eight birthday. Months of misdiagnosis (from my reading of this forum
long before posting, I know this sounds familiar). Actually it was only
about 3 and a half months, but long enough so that when she was finally
diagnosed, she had metastatic disease in her lung (three small nodules). Her
primary tumor was in the soft tissue of her back ­ PNET.  We began standard
treatment at University Hospitals here in Cleveland, then had the surgical
resection done at Sloan Kettering. (Dr. LaQuaglia there is simply an
outstanding surgeon, and a wonderfully humble human being; if anyone needs a
really good surgeon, he¹s the man.) We were told by Dr. Myers our oncologist
there that the necrosis on the tumor wasn¹t good (50%) and the chances of
continued disease were high. So when we continued chemo we included a higher
dose of Etoposide on his recommendation. She also had radiation to the tumor
site since the surgical margins were small, and again on Myers¹
recommendation she had whole-lung radiation as well. So we pursued this
about as aggressively as we could, and still ended up with crummy news.
(I¹ll hold back on the other adjectives; from what I¹ve seen, this is a
pretty polite forum.)

When she was done with chemo, we were good for about 5 months until these
mets appeared in her lungs. She¹s now getting Topotecan/Cyclophosphomide in
the hopes of shrinking the mets, with possible surgery to follow. Then
likely on to a clinical trial.

That¹s the medical side of Olivia¹s story anyway. The amazing thing for us
is that she has so far displayed no symptoms, either from the recurrence or
from her latest chemo. She¹s going to school, playing soccer and tag, and
her spirits are just buoyant. My wife, Cynthia, says she¹s the one that¹s
giving us strength, not the other way around. She¹s right.

The other way we¹ve dealt with this devastating news of recurrence? We got a
puppy. Not the most rational response, mind you, but Olivia¹s always wanted
a golden retriever puppy, so we have Charlie, a 9 week old. (We actually got
him from a foundation that trains service dogs, so he¹s bred to be calm and
well-behaved, and as a service dog, Olivia will be able to bring him to the
clinic and hospital.) He¹s brought joy into all of our lives.

Anyway, that¹s our long introduction, and since I¹ve been following this
listserv long before I posted on it, I feel like I know a number of you
already, and I appreciate the good spirits as well as the good advice you
all share.
God Bless,
Steve, dad to Olivia

On the ESARC-LIST, her father is Steve and her mom is Cynthia.