Son Matthew aged 11yrs. First Dx 11th April '97. Primary tumour to left iliac crest, Mets to both lungs, still undergoing treatment at the Middlesex Hospital, London, UK.
See Robert & Karen's home/links page for further details.
Electronic mail address
[email protected]
Web address
http://www.geocities.com/Heartland/Hollow/4488/
Elly has three children - Robert aged 11yrs, Elizabeth aged 9yrs and Jonathon aged 7yrs.
About daughter Lizzie, Elly writes :-
"Her Ewings was located (main tumor site) in her upper left rib cage (took up 4 ribs in all, in her back) with mets to her lungs and her pelvis. We underwent the CCG protocol for Highly Metatastic Ewings Sarcoma (High Risk Ewings Sarcoma). This means that my Lizzy had to experience, HIGH dose Cyclophosphomide, Vincristine, Adriamycine (3 given at one time over a one week period), Ifosfomide, & Etopiside (these 2 given at same time over one week period as well). Her first round was CVA and 2 weeks rest and than IE and 2 weeks rest. She had these drugs for 5 rounds in total ending on a CVA round. Her cancer responded well to the chemo. Than we had 14 days of targeted radiation to the main tumor site and the pelvis. Than 3 days (6 rounds) of Total Body Iradiation. Than 3 days of Melphalan and Etopiside in preparation for Peripheal Blood Stem Cell Reinfusion (BMT for short). It was a very scarey time for us. I thought we were loosing our little girl on two separate occasions. Once after the first round of chemo (they had over dosed her and it had caused a shut-down of most of the major organs) and than again during BMT when she became soooooo ill she could NOT eat and they let her go for 10 days wiht NO food (Not even TPN) or drink (she could NOT drink because of SEVERE mouth sores!). BMT was likely the hardest thing to watch her go through. But we went from her diagnosis on Nov 5th/97 to PBSCR on Apr 14th/98 to REMISSION on May 11th/98! And we praise the good lord for caring for her because her chances of survival were VERY minimal but, God brought her through with flying colors! Her most recent bone scan showed that there are 2 ribs in her upper left back that are plagued by (what they consider to be) scar tissue. But otherwise? She is a HAPPY healthy little girl! With EVERY intention to live her life for all it's worth! She does well in school and has MANY friends. She is MY miracle in MY back pocket! :-)"
"Michael Bergquist, 17, son of Wayne and Kathryn, brother of Melanie and Timothy, new uncle of Victoria, was found to have a tumor in his right tibia on Friday, February 13, 1998. A biopsy was performed and the final diagnosis of Ewing’s Sarcoma was given to us March 2. His staging tests showed no metastatic disease. He immediately started chemotherapy, POG-9354/CCG-7942. This is a protocol to study the event-free survival rate of patients receiving a 48-week standard regimen vs. a 30-week dose-intensified regimen of VDC (Vincristine/Doxorubicin/Cyclophosphamide) alternating with IE (Ifosfamide/Etoposide). He was randomized to the 30-week regimen. His VDC regimens last 54 hours, the IE regimens are 4 hours a day for 5 days. Each regimen is followed by 2 weeks off chemo with G-CSF injections given daily to build his white blood cells. He had surgery June 11, radical resection with allograft reconstruction, right proximal tibia. In other words, they removed the tumor along with about 75% of his upper right tibia. The bone was replaced with a donor cadaver bone, a plate was screwed into the tibia for support and the donor’s tendons and ligaments were attached. He did remarkably well following the surgery, feeling that the biopsy was more painful. The final pathology report after surgery showed 100% tumor necrosis. He was fitted with a huge leg brace and started 3 months of physical therapy. He took his first full weight bearing steps in October after being fitted with a smaller permanent leg brace. Although he has a limp and will never be able to do anything strenuous with his leg, he still has his leg and for that we are very grateful. Michael has had lots of blood and platelet transfusions and several fevers, one of which was a bacterial blood infection. He really scared us with that one. The doctor told us afterwards that had we been a mere 6 to 8 hours later in getting him to the hospital, he might not have made it. He will start his last chemotherapy November 25, the day before Thanksgiving. We know we have been truly blessed as Michael has not shown any signs of metastatic disease. He will have final staging scans done December 14 and we are very optimistic. Throughout this entire ordeal, Michael has shown us what an incredible young man he is. He never complains, no matter what has to be done, and has managed to maintain a positive attitude. We are very proud of him".
"Rob Mitchell is 16 and enjoys being with his friends, music and sports. He became ill on Dec. 29, 1997 with vomiting and severe headaches. We took him to the Alberta Children’s Hospital, where they diagnosed a brain tumor. He was transferred to Foothills Hospital on Dec. 30 for emergency MRI scans and angiograms. After several twists and turns on that awful day the exact location of the tumor was mapped. He had emergency surgery on Dec. 31 to remove the tumor, which was actually in the dura (lining) of the brain. On Jan 1 1998, the surgeon told us that Rob had leukemia, and he was transferred back to the Children’s Hospital’s Pediatric Oncology Centre. Further tests indicated that it wasn't leukemia, but it was about three weeks before they confirmed it to be Ewings. During that time he had rib surgery as the docs suspected (correctly) that it was Ewings, and that (incorrectly) that it had started in the rib. A growth appeared on the bone scan and the MRI showed an enhancement to the spine. The rib turned out to be benign, and further MRI showed the spine to be clear. Rob started his chemo protocol of 18 rounds, three weeks apart. At first, Rob suffered terribly from nausea. Getting the it under control was done largely by advise from members of the E-Sarcoma Listserv The Nabilone (Marinol) and wrist bands have made the difference. Rob now actually eats during chemo. Hot chicken wings, pizza, KFC chicken, Subways - but absolutely no hospital food! The Children’s Wish Foundation of Canada came through big time. Rob, along with his brother Jeff, Dad and three of Rob's friends, went to San Francisco to see a 49ers football game in September 1998. The kids had a great time (although Dad was a little stressed...). When he is not suffering from chemo, Rob works at home on high school courses.
As of November 1998, Rob has not had any relapses or metasis, although he suffers - as does everyone - from the chemo. He has five more rounds to go. The docs will then consider radiation".
"Andrew's Bio:- Fell off bike, had sore hip. Went to doc and was told it was strain. This was in May. Continued pain which we attributed to growing pains. Just before school in late Aug. pain got too great and we went to emergency. X-ray showed abnormal apprearance below head of femur at hip. Our experience began, within 2 weeks had CT, MRI, bone biopsy, etc., etc. .... confirmed Ewings and start of chemo. Were randomized onto 30 week intensified POG protocol VACIME vs. standard 48 week. Halfway through the intervention took place, surgery - rotationplasty where they removed his upper femur and reattached his lower leg, that is his knee to his pelvis. They turned it around, hence rotationplasty, so his knee has hip range of motion and his ankle now his knee has knee range of motion. Surgery had clear margins and we proceeded with chemo finishing in May. So far so good. In Dec. we had our Children's Wish trip to Disneyland which is included in our bio where we met Carie Cox another listserv subscriber. If you require any further info please contact Michael Kjartanson at [email protected].
"Ashleigh Burt 10 yrs old, 16/3/88. Living in Auckland, New Zealand. Treated at Starship Chidren's Hospital.
Parents - Russell and Dorothy, Siblings - Georgina 13yrs, Max 8 yrs
Ashleigh was diagnosed with Ewings sarcoma in a localised tumour of the 4th and 5th ribs in October 1997 after a very painful lump appeared under her left breast. She had the usual biopsy and scans over one week before the verdict was given, then had a port-a-cath inserted for the administration of chemo. Her protocol followed a familiar pattern for Ewings patients, with one week being an in-patient having chemo, then two weeks at home. Her chemo's consisted of Cyclophosphamide, Adriamycin and Vinctistine one time, alternating with Etoposide and Ifosfamide (and Mesna) the next. In March of 1998 the tumour had disappeared from scans and she had surgery to remove the two ribs, muscle, chest wall and sections of the lung that had been touched by the tumour. Chemotheraphy continued until the first week in November and scans done at the end of November show her to currently be completely clear of signs of cancer. During the initial months of chemo Ashleigh suffered terribly from Nausea and vommitting, despite the regular use of 3 different anti-sickness drugs. This ended dramatically when a temporary nurse from England suggested we walk across the road and buy a set of velcro wristbands containing a little button which pressed upon an acapuncture point on the wrist and are generally worn for sea-sickness. It was with great scepticism that we did this and forced a reluctant Ashleigh to give it a go. From that day she never vommitted or felt more than queasy in all the remaining months of treatment. AND she went from a starvation regime to ordering up a rotation of KFC, MacDonald's, Pizza etc which instead made her parents nauseous!! We believe Ashleigh has been greatly blessed throughout her treatment in that she has been able to continue going to school right throughout and has really only been hospitalised during treatments. Her determination to be "normal" has led her to be fully involved in the life of the school and her extra-curricular activities (such as piano and clubs) and her grades have actually improved during her illness! She was very disappointed that we made her take a sebatical from rugby (the NZ national passtime!) and jazz ballet , but is determined to get fit over the Xmas break and get back into sport next year. We have had people all around the country and all over the world praying for Ashleigh and the family and we know these prayers are being answered.
Living in New Zealand where we never came across another family with Ewings to network with, we have found the Ewings Sarcoma list-serve to be an invaluable source of friendship, support and information. We may live at the "ends of the earth" but we feel like we are really keeping in touch with all the latest research and developments. Thanks to all who have contributed to this. Should anyone from the Southern Hemisphere read this and want to contact us , we can be reached through the Ewings Sarcoma Listserve link on this website.
Beth writes :- "My 10-year-old daughter Dana, missed the first day of school in 1997. She had been scheduled for a biopsy on a mass found in her left leg. That was the day our lives changed forever. Before she was out of surgery a central line was put in place for use during her year of chemotherapy. The chemo was started four days later.
Within ten days all of her hair was gone. I think it bothered me far more than it did her. She got so unbelievably sick with each round. All her treatments were inpatient, and were either three or five days. Only her first two treatments were on schedule, after that she was delayed at least one week, sometimes two, because of low counts. Within three days of being discharged, we would be back in the hospital with a fever and zero counts. She would have to stay for seven to twenty-one days. The three-week stay was the hardest. She got out on Dec. 24th; I was so glad that she did not have to spend Christmas in the hospital.
Her surgery was on Feb. 4, 1998 after five rounds, and went better than we had expected. Her leg would remain hers, and a bone graft was not required. After about three weeks chemo started up again along with radiation. The daily radiation lasted five weeks. She seemed to tolerate it quite well.
Before radiation it was low ANC that delayed the next treatment, after radiation it was low platelets that caused the delays. She could not receive her last scheduled chemo as it was taking much to long for her counts to recover. The DR’s felt the risks were greater than the benefits.
During her yearlong treatments we had to live at the Ronald McDonald house in Seattle, as our home was further than the DR’s would let me take her. We lived there with twenty-one other families, all whom had a child with cancer. The Ronald McDonald house in Seattle is a cancer priority house. It really helped to have people around us that understood exactly what we were going through. But there were times that it was very hard to be there. More children than I care to mention; that we personally knew lost their battle with the cancer demon. And that was very hard on both of us.
We are at home now trying to get back to living our lives. Which we are finding out is much harder than we would have thought. Some things are back to normal while others possibly never will be again. We just take each day as it comes, and enjoy all the time we have together.
Dana started school along with all her classmates this year. Even though she did nothing for fifth grade last year, she was placed in sixth with her friends. She took a skills assessment test last summer and the results of that made it possible for her to enter sixth grade.
She is my pride and joy. I admire her strength and courage. I am inspired just knowing her. I am very glad she is my child.
James Kenneth Anderson
Edmonton, Alberta
Canada
In May of 1998, at age 28, James suffered an agonizingly sore back. He endured numerous
tests and endless prescriptions ranging from antacids to sleeping pills. His condition
steadily deteriorated from being unable to work to being unable to sleep or eat.
Eventually the doctor discovered a compressed vertebrae and ordered physio therapy.
At the end of July he was caught off guard by two unexpected sneezes. The second left his
legs heavy and unsteady. Admitted to hospital the 7cm tumor on the inner side of his spine
was discovered. Over the next 48 hours an attempt was made to stabilize the tumor in order
to halt the spreading paralysis. The attempt failed and by July 31 he had lost all use of
his legs and feet.
On August 1 surgery was performed in an effort to relieve the pressure from his spine. A
titatium rod and bone grafts replaced the T6 vertebrae. The pathology confirmed single
site Ewing’s Sarcoma. For the first 24 hours it seemed a miracle had occurred, his
feet moved, he could lift his legs. It was short lived. Within days the tumor had grown
enough to paralyze him to the chest. He was transferred to the Cross Cancer Institute
where targeted radiation began on August 7 and continued daily for 3 weeks. Scans showed
the tumor had shrunk and chemotherapy began in late August. Ifosfamide, Mesna and
Etoposide over 3 days and then 3 weeks rest. The first round was without incident, no
nausea, no vomiting. The second, 1 day cycle, of cyclophosphamide, vincristine and
doxorubicin was not so kind. He lost his mass of curls along with his appetite.
He learned to live as a paraplegic and grew fiercely independent. That independence came
at a high price. A pressure sore, so common to paraplegics, developed and worsened to the
point of requiring surgery. Hospital staff blamed it on the hours spent in his wheelchair.
Beginning October 1 he spent 6 weeks in an air bed with only sitting allowed and at a 30
degree angle. By early November he had recovered enough to be transferred to a
rehabilitation hospital. Though gravely ill for the first three weeks he bounced back and
is again undergoing chemo.
James has lost many things in a very short period of time. His wife abandoned him, taking
with her his 2 precious children, he has lost the use of his legs and after 3 months of
illness he lost his job. However he has never lost his spirit or his willingness to fight
this demon. We never cease to be amazed at his determination and strength through it all.
He seldom complains and always maintains a sense of humor. His family is very proud of him
and will continue to fight this awful disease called Ewing’s Sarcoma with him. With
God’s help and our help we are confident he will win!
