CCS Friends

Lately I’ve been in touch with a few other patients struggling with the same disease.  My new friend Carolina DeHond has done so much work to create a network and start some discussion.  Thanks for all of your efforts Carolina!  Although we have not met in person, many of us have been sharing stories.  The stories alone have created a connection.  Below I have posted the stories of my CCS friends where given permission.

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Carolina DeHond

I am wife to an incredible husband, Craig and a Mother of two beautiful daughter’s (Victoria who is 9 years old and Mikayla who is 6 years old). I am blessed to be surrounded by supportive, loving family and friends!

I share the same cancer as Bret (Clear Cell Sarcoma). I noticed a dime sized “bump” on my left foot just under the big toe bone area. It had been bothering me for some months before I finally went to get it checked out. On May 2, 2007 (I was 28 years old) I was told by a medical professional the bump on my foot was from my shoes and was sent home 😦 After a year passed the bump continued to cause pain and discomfort I finally insisted the “bump” be checked out. Along with most if not all other CCS patients, I was Misdiagnosed 😦 The needle biopsy confirmed I had a rare cancer, Clear Cell Sarcoma (CCS). A 7 1/2 hour surgery was performed on May 5, 2008 to remove the tumor “bump”. Once my diagnosis was confirmed more tests were ordered which included PET & CT scan and Nuclear Bone scan.  We traveled to Buffalo (Roswell) and Boston (Dana-Farber), NY for 3 other Doctor’s opinions they decided they can save my toe instead getting it amputated as originally proposed! On May 5, 2008 I had my first CCS surgery to remove the tumor “bump” from my left foot. I had reconstructive surgery after removal of tumor which included my left hand. They took a tendon, nerve, artery, vein and skin from my left hand to put into my left foot! Then they took a skin graph from my left hip to replace the skin on my left arm (wrist area). I was in the hospital for 11 days and bound to bed or wheelchair for 2 months, since I was not allowed to bear any weight on my foot 😦

My second tumor (It metastasized) -a routine PET scan picked up a “hot spot”. So after 2 years and 4 months of being told I was “Cancer free” the cancer was detected again. 😦 I was given the news of my 2nd occurrence on October 8, 2010 😦 This time it was found in my left distal femur (just above my left knee). I had my 2nd surgery on October 25th. They removed 10cm of my femur bone and part of the tibia bone. Now I have titanium to replace the knee and titanium rods inside my remaining femur and tibia bone. Surgery lasted 5 hours this time with 10 day stay at Highland Hospital. Still recovering from that surgery a year and a half later.

I wish I would have started this sooner but just since my last occurrence I have completely changed my diet eliminating extra sugar, fluoride, dairy, meat and any processed/GMO foods. I have become vegan and feel healthier for it. We use coconut oil for high temperature cooking and extra virgin olive oil for low temp use (absolutely No vegetable, canola or soy type oils). I am on many different alternative treatments from various clinics and researchers. I have never had chemo or radiation. We have been warned by MANY experts that they are useless at best, and often damaging, causing everything from brain damage to organ damage to a weakened immune system and worse. Our thanks go out to courageous researchers like Dr. Revici, Dr. Rife, Dr. Gerson, Dr. Budwig and many others who have pioneered advances in cancer treatment that have helped tremendously. We have recieved help from all over the world in fighting this cancer – we have seen that there are many effective cancer treatments available in Germany, Mexico and the U.S.

I know spiritual healing and the dynamic ability of our minds, through POSITIVE THINKING Can HEAL our bodies! I also believe in Miracles 🙂 We were forced to look into non-conventional treatments since the Drs. here have told us if it spreads there is nothing they can do 😦

A few things we have learned along the way:

-We (and our doctors) never know if we are “Cancer Free”- usually, the cancer is just “Not Detectable”! Assume the phrase “Cancer Free” is a lie, unless PROVEN otherwise (and good luck trying to PROVE that).

-We as patients have to be our own advocates as we know our bodies better then Anyone else!

-Once you have cancer- if you don’t change your bodies (through major diet changes, and many other techniques) we create a welcoming environment which encourages the cancer to metastasize) 😦

-Cancer Loves Sugar 😦

-Fight the cancer early and hard -even if you are lucky enough to have caught it before it has spread all over – assume it has spread and treat it as such, make changes and Fight 🙂

All in all we are so grateful to all of our family and friends for all the Love, Support and Prayers we have so graciously received during my journey with cancer!

Carolina DeHond

“Live in the PRESENT, so you won’t dwell in the PAST or worry about the FUTURE”

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Mike Gratz

I am 30 years old and I also have Clear Cell Sarcoma.  I am married (Jen) and have 18 month old twin daughters (Laynie & Rylie).  I first noticed small pain in my left toe in early 2004 or late 2003 after playing a flag football game.  I figured it was turf toe or just a minor injury.  I am pretty sure a small bump began to form in 2004, the bump was on the left side of my left big toe, kinda like a bunyon.  My father vividly rememebers me complaining about my foot at our wedding on 06/05/2004.  Well years went by and the bump would grow and then shrink again. I would always notice the pain when I played softball, but nothing severe.  I can remember showing the bump off to people at work in 2005 and 2006, everyone always told me to get it checked out, but I am stubborn and was not going to be sidelined by a minor injury in my big toe.  In September of 2008 I went to my doctor for a minor cold and asked him to look at my toe, he looked at it, then grabbed it and said “well it is a mass of some sort,” then he asked me if it bothered, I said “no” and he sent me home with Naproxen for the swelling.  I went back to the doctors again 2008 and he said it may be gout, he checked my Uric Acid levels and they were slightly high, he chalked it up as gout or arthritis.  Finally I went in again in July of 2009 and I was referred to a Podiatrist.

I went to the Podiatrist in September of 2009.  The Podiatrist ordered x-ray and immediately told me it was tumor, but it was most likely benign.  The podiatrist sent me for an MRI, the MRI findings said it was Giant Cell Tumor, but suggested that I have it removed for further testing.  I set up a outpatient surgery on 10/06/2009 with my Podiatrist, he removed the tumor (2 pieces, 4cm and 2.5 cm) with a small incision on the side of my big toe.  After surgery, my Podiatrist said the tumor was large and it was wrapped around my tendon but it looked like every other benign tumor he has encountered and said it was 99.9% benign, but it would be sent to Pathology for further testing.  After 3 days I received a call from my Podiatrist informing me that it was possibly a Malignant Spindle Cell Tumor but it need to be sent to the experts at the University of Michigan for an exact diagnosis, well that diagnosis came a few days later from my Podiatrist over the phone, he said “write this down, Clear Cell Sarcoma,” which was my diagnosis.  The googling began by everyone I know and the the searches were, less than good…..actually really bad.  I can remember reading “long term survival is dismal” in pretty much every article I read.

Now onto the Orthopedic Oncologist world (never new the two words ever went together), I met with 3 Orthopedic Oncologists, Dr. Michael Mott, Dr. James Irwin and Dr. Sybil Bierman. I had CT Scans of my torso which were normal and a second MRI of my foot, the MRI revealed small amounts of tumor left at the surgery site.  All three doctors said this is very bad stuff and would do nothing less than at least partial amputation of my foot.  I decided on Dr. Sybil Bierman at the University of Michigan Sarcoma Center.  Dr. Bierman suggested that I at least have a First Rae Amputation (basically my big toe and a part of my foot) and she would test the surrounding tissue in the O.R. and if it was positive for Cancer, she would do a Below the Knee Amputation. Dr. Bierman also ordered a Sentinal Node Biopsy.  Surgery day was 11/24/2009, God was on my side, I woke up with to only losing my Big Toe and the Node test was negative for Cancer.  As of now I am Cancer Free, I have X-rays of my chest and a Lymphnode exam every 90 days and an MRI of my foot every 180 days.  It has been 1 year and I am still Cancer Free.

I have a Facebook Page set up that I post updates on, ithe link is http://www.facebook.com/photo.php?fbid=377404003860&set=a.439247003860.217288.617323860#!/group.php?gid=160464308195

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Dani Solberg

I WAS 23 YEARS OLD WHEN A BUMP FORMED ON MY LEFT INSIDE OF THE FOOT BETWEEN THE HEEL AND ANKLE. AFTER A WHILE IT STARTED TO GET HARDER AND HARDER TO WEAR SHOES OR WALK LONG DISTANCES BECAUSE IT WOULD AGITATE IT. I SAW A PODIATRIST IN WASHINGTON STATE AFTER MY MOM TOLD ME I NEEDED TO GET IT CHECKED OUT. I AM NOT ONE TO GO RUNNING TO A DRS OFFICE AS I AM OVERWEIGHT AND THEY ALWAYS FORGET THE REASON I AM THERE AND TALK ABOUT MY WEIGHT AND IT JUST MADE ME WANT TO GO LESS AND LESS TO A DRS OFFICE. I FIGURED THEY WOULD TELL ME THE BUMP WAS FROM ME BEING OVERWEIGHT AND IT WAS SOMETHING I DIDNT WANT TO HEAR OVER AND OVER. WHEN I SAW THE PODIATRIST 2 YEARS AGO THEY TOLD ME IT LOOKED LIKE A GANGLION CYST. THEY NUMBED THE AREA AND TRIED EXTRACTING FLUIDS TO GET A BETTER READ ON IT. SHE TOLD ME TO LEAVE IT ALONE THAT THEY USUALLY GO AWAY ON ITS OWN AND IF IT STARTS TO BOTHER ME MORE AND MORE I COULD CONSULT WITH A SURGEON. THE IDEA OF SURGERY AND SEEING ANOTHER DR WAS NOT IN MY PRIORITY LIST SO I DECIDED TO LET IT STAY AND JUST DEAL WITH IT AND THE PAIN THAT FOLLOWED. IN MARCH OF THIS YEAR I MOVED TO TEXAS TO LIVE NEAR MY PARENTS AND BROTHERS FAMILY. I WAS HAVING SOME MAJOR ANXIETY PROBLEMS AND DEPRESSION AND WE THOUGHT IT WAS BEST FOR ME TO MOVE OUT AND BE NEAR THEM. AROUND THAT TIME THE BUMP GREW (WHICH I SAW IT DAILY SO I COULDNT TELL, BUT WHEN MY MOM SAW IT SHE ABOUT PASSED OUT) AND STARTED TO BECOME MORE AND MORE PAINFUL. I COULDNT WEAR CERTAIN SHOES ANYMORE AND THE SKIN IN THAT AREA WAS PRETTY TIGHT AND THIN. WHEN I SAW MY PARENTS AFTER I MOVED TO TEXAS THEY FREAKED OUT AND FOUND A DR ONLINE FOR A SECOND OPINION. NOT EVEN A WEEK AFTER MOVING HERE I SAW THE DR. HE WALKED IN THE ROOM AND WAS LIKE UMM THATS NOT A CYST THAT IS A TUMOR YOU NEED SURGERY ASAP. I HAD AN XRAY IN HIS OFFICE AND HAD MY FIRST SURGERY 2 DAYS LATER. THAT NIGHT MY MOM TOLD ME THE HORRIBLE NEWS ABOUT IT BEING CCS. I WAS SO UPSET AND STARTED HAVING A PANIC ATTACK. THE NEXT WEEK I SAW MY ORTHOPEDIC ONCOLOGIST WHO SAID THEY TOOK MY CASE TO THE MEDICAL BOARD AND TALKED ABOUT IT ALL WEEK AND DECIDED TO TREAT THIS AGGRESSIVELY AND TO DO A RADICAL AMPUTATION RIGHT BELOW MY LEFT KNEE. I JUST HAD MY FIRST SURGERY AND WAS NOW TOLD I WOULD LOSE MY LEG AND MAY NOT GET TO WALK AGAIN. I WAS DEVASTATED. I WAS 25 AT THE TIME AND I FELT LIKE MY LIFE WAS FALLING APART RIGHT BEFORE ME. A WEEK AFTER THAT I HAD MY SURGERY AND WAS IN THE HOSPITAL FOR 4 DAYS FOLLOWING SURGERY. I TOLD ALL OF THE NURSES I DIDNT WANT TO SEE MY LEG AND I MADE THEM PUT A PILLOW AT THE END OF MY CAST SO I DIDNT SEE ANYTHING AND I ALWAYS HAD COVERS ON. IT WAS HARD FOR ME AND MY FAMILY. I AM NOW IN A WHEELCHAIR AND AWAITING TO GET FITTED FOR MY PROSTHESIS. I AM LOOKING FORWARD TO MORE INDEPENDENCE AND NOT HAVING TO STAY HOME ALL DAY WAITING FOR SOMEONE TO COME HELP ME WITH LAUNDRY OR CHORES OR TAKING ME TO WORK OR TO THE STORE. I DID TAKE 8 MONTHS OF WORK OFF (I WORK FOR MY FAMILIES COMPANY THANK GOODNESS) AND FOCUSED ON MY HEALTH AND POSITIVE THINKING. I TRIED TO TELL MYSELF THAT GOD CHOSE ME TO HAVE THIS CANCER FOR A REASON AND I WANTED TO TRY AND HELP OTHERS AND BE OF SUPPORT TO THEM. I STARTED A BLOG AT WWW.DANISOLBERG.COM. YOU ARE ALL WELCOMED TO CHECK IT OUT ANYTIME. I NEED TO GET BETTER ABOUT MY UPDATES, BUT I WANTED TO BE ABLE TO HELP OTHERS OUT SINCE I HAVE TO GO THROUGH THIS. RIGHT AFTER MY AMPUTATION WE STARTED ME ON AN AGGRESSIVE CHEMO. WE WENT BACK AND FORTH FOR A WEEK ABOUT SHOULD WE OR SHOULDNT WE. ALL OF THE DRS FELT IT WAS THE WAY TO GO AND I JUST WASNT SURE. WE TALKED ABOUT GOING TO MD ANDERSON IN HOUSTON, TX BUT THEY WERE HORRIBLE TO TALK TO ON THE PHONE AND IT WAS ALMOST IMPOSSIBLE TO GET IN THERE TO SEE THEM. WE DECIDED IT COULDNT HURT MUCH TO GO WITH THE CHEMO. I JUST FINISHED AND HAD MY TESTS SHOWING I AM STILL CANCER FREE AT THE MOMENT. SO FAR THAT IS MY STORY AND IT HAS BEEN GREAT READING ALL OF YOUR STORIES.

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Holly Burke (by Holly’s Mother, Carol)

It was September 7, 2008 when on Holly’s 18th birthday she started complaining about her shoulder.  After going to our MD. he suggested going to get an xray at Sacred Heart Hospital in Destin, Fl.   The radiologist diagnosed it as a torn muscle. Another month went by and the pain seem to get worse and a slightly raised area appeared. Back to the MD where he said to get another xray.  The same Hospital gave a different diagnosis of a hemmatoma.  Their suggestion was to have physical therapy to break it up.  The physical therapy was done for about a month until Thankgiving. Due to the holiday, Holly didn’t go back to therapy for about a week.  When she did return the area had grown.  An appointment was made to see an Orthopedic surgeon.  Due to the lump Dr. Fox sent Holly immediately down to Shands Hospital in Gainesville Fl.  At Shands we met with Dr. Gibbs. He did a needle biopsy.  From the biopsy, the pathologists at Shands couldn’t diagnose what it was.  They had to send the biopsy to a microbiologist in another state.  After waiting a long 2 weeks we got the news that it was a rare and aggressive cancer.  This new came on December 18th, 2009.  Shands sent us to St. Judes Children’s hospital in Memphis at our request.  As good as Shands is (They are a teaching hospital with an amazing reputation.

The first week of January Holly was admitted into St. Judes as a patient.  They did their own biopsyand tests and determined that  the cancer was in the lymph nodes. Unfortunately the biopsy caused an infection. Once that was cleared up. Holly had many surgeries over 6 months followed by radiation.  The surgeries were on the right side from her neck down to her upper arm.  The most extensive surgery was the first one.  They  took a 3 inch mass out of her shoulder and had to cut out a 2 inch piece of scapula and a small piece of clavicle.   With physical therapy and plenty of determination  Holly was able to get a fair amount of mobility.  The doctors worked very hard to keep her pain level down to a 5 out of a scale of 10.  She said she was comfortable at that pain level.  Holly was on many pain medications including morphine.  Radiation was done on the areas where the surgery was done.  No chemotherapy was done since it had no effect on this type of cancer.
By September the cancer had spread into her spine, hips and lungs.  Holly began to have labored breathing in October which we in time found it was from the tumors.  Near the end she was put on a venilator. Holly did not know at the time that she would not come out of the induced coma. She needed help breathing and willfully went along with it.  A week later on October 30th Holly passed away peacefully with her family and Hospital staff( whom had become like family) surrounding her. She looked like an angel.  She died two weeks before she was to wed the love of her life Kyle.
I must take this time to tell you that though this tough journey Holly was the most gracious and brave young lady.  She would love on the other children at St. Judes.  One particular child died less then 24 hours later.  The parents think their 3year old was waiting for her to go to heaven first.  I had the honor of calling little Coulton and tell him he could go to heaven now. Holly was waiting for him. Although she lived in pain. Holly graduated high school and was able to walk with her class who gave her a standing ovation as well as making her prom queen.
Also the love and compassion of so many people gave was and is the most beautiful experience. I will always be grateful. Lastly, I have to take a moment to say how proud I was of Holly’s brothers Chris and Joe Kostecki whom gave so much love to her.  Starting a foundation called Shred Out Cancer in her honor.  They continue to help run it to help other families.  Lastly, Holly’s little brother Scott. At age 11 he was brought into a different world.  He help care for the little children up at St. Judes. He would go into their hosptial rooms in the scrubs and help care for them and love on them.  The most amazing was how Scott was protective of Holly. Watching over her like a mother hen.  I am the PROUDEST MAMA IN THE WORLD.

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Chris Roberts (by Chris’s Girlfriend  Ashley)

Chris Roberts was diagnosed with CCS on February 11, 2010 and passed away on September 28, 2010. Chris was 27 years old – 27. In hindsight, many people our age don’t think of being delivered the terrible news Chris received – that you have cancer and that there is no cure. Most of us (thankfully) do not have to face our own mortality on a daily basis, like Chris had to do for nearly eight months. Chris did so with such strength and dignity; he is far and away the strongest person I have ever known.

Chris and was a self-proclaimed “gear head” from a very young age. Chris and his dad would restore old cars and would occasionally race a few of them at the local speedway. Chris’s dream was to build his own diesel pickup, a dream that he was unable to fulfill before his passing. Chris loved sports – he played football in high school and loved to watch college football (the Iowa Hawkeyes were his favorite team.) Chris also loved the blue pit bull, Junior, that his dad had bought a few months before Chris was diagnosed. After high school, he graduated from college with a degree in finance (he was also a member of the Sigma Alpha Epsilon fraternity) and worked in the insurance industry before becoming a supply management specialist for John Deere.

Chris initially discovered what we would later find out was CCS in October 2009. That
month, Chris and I were both in our good friend’s wedding and Chris had to wear a pair of uncomfortable tux shoes that weekend. Immediately after the wedding, Chris was in two more weddings in October and November and had to wear bad tux shoes again; so, when a blister/callus (what Chris thought it was at the time) popped up on his left foot, we chalked it up to being from the shoes. However, as Thanksgiving approached the “blister” grew and continued to grow as Christmas came around. Around Christmas, Chris decided he would go in and see a doctor about this – which was compounded by the fact that another bump popped up in his left groin area. In early January 2010, two separate primary care doctors told Chris that the “bumps” were simply fatty tissue or an infection and put him on antibiotics. When the bumps continued to grow, we became nervous so Chris called his podiatrist (this particular doctor had performed surgery on Chris’s other foot when he was in high school – football injury) and scheduled an appointment. Upon seeing the “bumps”, Chris’s podiatrist immediately scheduled surgery and removed the tumor in his foot early February 2010. On February 11th, we received the news for the podiatrist – the pathology report had come back and Chris’s bump was a 5.4 cm tumor – clear cell sarcoma.

Chris was immediately referred to the orthopedic oncologists at the Mayo Clinic in Rochester, MN (Chris lived in Iowa, so this was a relatively short trip) where Dr. Rock was Chris’s primary orthopedic oncologist. Chris’s initial meeting with Dr. Rock and his team was to basically tell us how rare CCS was (ironically, Dr. Rock had apparently just diagnosed another person with CCS earlier that day) and that, if the cancer had not yet spread, that he would perform surgery on Chris’s foot and excise additional tissue around the initial site in the hopes that he could remove any remaining CCS cells. After the meeting, Chris had several MRIs, scans, etc. done and received the results a couple of days later. To our dismay, the cancer had already spread up his left leg, his hips and sternum. At this point, surgery was no longer an option for Chris, so Dr. Rock informed Chris that aggressive chemotherapy and radiation were his best options. Chris asked if he could have the chemotherapy and radiation administered at a hospital closer to home; the Mayo Clinic agreed, so Chris chose the University of Iowa Hospitals and Clinics as his “local” hospital.

Dr. Mohammed Milhem, a.k.a. “Dr. Mo”, became Chris’s “local” oncologist at the U of Iowa Hospitals. Chris and I had his initial meeting with Dr. Mo in March 2010; Dr. Mo was the first doc to tell Chris that we was, in fact, “terminal” and that since his cancer had spread, the goal at that point was to “prolong his life as much as possible” (not exactly what we expected or wanted to hear.) Nonetheless, Dr. Mo specialized in sarcomas and had told us not to give up hope – he had a patient with CCS several years earlier that progressed to the point where the cancer had spread to her brain, only to find that it had disappeared several months later. Based on our research, Dr. Mo confirmed that chemotherapy and radiation only had about a 5% success rate in CCS patients; thus, Dr. Mo recommended Chris consider joining a clinic trial (drug: PF-02341066) at the Dana Farber Cancer Institute in Boston. Chris agreed that this would be his best option (the trial was showing a 20-30% success rate in slowing or stopping the growth of CCS cancer cells) so he traveled to Dana Farber and met with Dr. James Butrynksi, one of the physicians/researchers for the trial.

Chris saw some success with the Dana Farber trial; during one of his visits, one doctor
commented on how a couple of the tumors in Chris’s groin had started to liquefy, an apparent sign that the drug was working. Unfortunately, the tumor in Chris’s sternum and spine continued to grow and eat away pieces of bone – which became excruciating for Chris, to the point where it became extremely difficult for Chris to do much of anything. For whatever reason (still unknown to us), Chris would be feeling okay prior to each of his trips to Boston every two weeks for treatment, but the minute he got on the plane to go to Boston, he would become violently ill and would then have to be hospitalized in Boston for several days afterward. The only thing the doctors could figure out was that the pressurized cabin, altitude, etc. was putting pressure on the tumors in Chris’s chest and spine which was ultimately causing him so much pain, vomiting, etc. during each plane ride.

Shortly before Memorial Day 2010, Chris became extremely ill and was rushed to the University of Iowa Hospitals and Clinics, where he remained for nearly six weeks. It was discovered that he had numerous blood clots in his lungs and the cancer had spread. Dr. Mo and other doctors at the U of Iowa worked to stabilize him with pain meds and come up with a plan for “where to go from here.” Since Chris was no longer able to travel to Boston for the Dana Farber trial, this was not longer an option for him. However, Dr. Mo was administering a trial drug, Sutent, through the University of Iowa so Chris decided to try this drug. In June, it was discovered that the tumors in Chris’ chest were now pushing on his esophagus, heart and other organs (though not attached to any organs at this point – it was just on his sternum) so Chris and the team of oncologists decided to radiate several spot in his chest, arm and spine to alleviate some of the major issues (trouble swallowing, breathing) Chris was experiencing. Fortunately, the radiation shrunk the tumors and allowed Chris to breathe easier, eat, etc. Chris was stabilized in early July and was sent home (at this point, Chris moved back home to his father’s house; his father had recently retired and could provide care for him, along with nurses) and stayed at home – other than a brief hospital stay in July – until late August 2010.

In July and August, Chris’s cancer continued to spread to the point that treatment was halted and palliative care became the primary focus. In early September, Chris made the decision to admit himself to a hospice care facility where he spent his last weeks.

In my conversations with Mike Gratz (CCS patient) and numerous healthcare professionals familiar with CCS, there seems to be two forms of CCS – a non-aggressive type and an
aggressive type. Unfortunately, Chris seemed to have the aggressive form of this horrible
cancer.

I wish that Chris could have had the opportunity to meet and talk to you all before he passed away. Although Chris was in contact with another CCS patient (Doug Roth), I know Chris felt alone in his battle at many points in time. Although Chris has so many amazing people surrounding and supporting him – his lifelong group of friends, dozens of his fraternity brothers, family and co-workers (a side note: Chris worked for John Deere; John Deere as a company, along with Chris’ direct bosses – Denny and Daria – were the most understanding and supportive people/company I have ever seen) the fact of the matter is “we” (those who don’t have CCS) cannot fully grasp what so many of you face on a day to day basis.

Chris is, without a doubt, the strongest person I have ever met in my life. I wish you all could have met him – he had such a wonderful disposition and was always so gracious, warm, kind and his infamous quick wit and sarcasm helped all of us stay positive in his fight.

Chris kept a blog to document his battle, which can be found at http://
chrisrobertssarcoma.blogspot.com . In addition, Chris’ lifelong friend, Aaron, has set
up a website that people can donate to the “Chris Roberts Sarcoma Memorial” http://www.chrisrobertssarcoma.bbnow.org/index.php . The money donated will go toward a beautiful stained glass window that is being designed and will be installed in the Sigma Alpha Epsilon (the fraternity Chris belonged to) on the University of Northern Iowa campus in Chris’s name.

During Chris’s battle, he would regularly say to his friends and family to “keep you chins up and keep fighting the good fight”…I hope each of you are doing the same.

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33 Responses to CCS Friends

  1. Carolina DeHond says:

    Hi Bret!
    Thank you for your very kind words! It was my pleasure to connect us and hope the others can bring you comfort in this terrible time! You were my inspiration to Finally connect other Clear Cell sarcoma people together! I have been meaning to do so since my first round with this nasty cancer but you have made me realize you never know what life has in store for us! Hope to meet soon and compare notes and surgies! Yikes after reading your story and viewing your pictures my stuff seem like nothing!
    You and your whole family are in our daily thoughts and prayers! If there is ANYTHING we can do to help you PLAESE let us know!!
    Carolina DeHond

  2. Dani Solberg says:

    Thank you so much Bret for putting our stories on your special website for others to view. It really is crazy how much we all have in like. I just hope someday we can find answers for the puzzle and solve this nasty CCS and finally find a cure. That is my hopes and wishes. Your page looks great. Mine is still a work in progress as I am not really that good with computers. My brother is an IT guy and builds websites he just hasnt showed me how to put things there. Soon I hope to have it down and update more!!! Thanks again for your stories and for sharing ours. Hugs CCS friends!

  3. Zeke and Mary Lou says:

    Bret, the only thing I can say, is that you are one amazing man. I count it a priviledge to have you as a son in law. Shannon could have looked the world over, but could not have found a husband as good as you have been to her. My thoughts and prayers are with you both, not just only on this trip, but also as you and her go thru this ordeal with your cancer. I would say since you graduated from NC State, to remember the words of Jim Valvano, dont ever give up, dont ever give up. My love to you and shannon as you continue on this trip.

    Love as always
    Zeke

  4. Scott Dixon says:

    Hey, Bret, Shannon and gang,
    Been following your adventure everyday. Glad you are having these times with family and friends. Darn the cold weather, but it has to be better than the snow and cold up here. We enjoyed Islamorada in the Keys. We dove there, but there are snorkel trips as well. Tat? I’M A NUKE AT REGINNA of course! : )
    Stay safe,
    Scott and Laurie

  5. Jolene Massie says:

    Bret, I was referred by your page by Carmel Hall, I know her from living in King, NC. You are the most courageous man and I love the fact that you and your wife and family are just fully trusting God and enjoying the time you have. I enjoyed reading your Blog and will pray for health to continue and hold out so that you can travel wherever you want to go. Thanks for sharing your story with others. God Bless you and your family!

  6. Sandy and Red says:

    Bret,
    Terry just hooked us up with your website. I sent it on to Bren also. Your Peglow Rd. friends have not forgotten you. Red can no longer ride but we will ride with you and follow your travels.
    Sandy and Red

  7. Marleen Mark says:

    Dear Brett,
    I have tried to think of the right words to express everything I would like to convey to you, over the past few weeks… and I now realize that I can simply say…Many people live their lives without really “living”..just going through the motions…you have always been one to “enjoy” everything you have experienced…..on a ball field, chilling with friends, or imbibing in some wonderful new adventure….. I hope you enjoy every minute of your trek and please know that many of us are with you in spirit! You are an amazing person and seeing the world through your eyes truly benefits us all. You are special! Hang in there and zestfully “ride like the wind”! Love,
    Marleen Mark and family

  8. Fred Borrelli says:

    Bret:

    Those pictures of the mountains and coast are spectacular – even stopping at trader Joe’s is great – I frequent there myself – any place with free samples attracts me. I noticed that you are licking the snow on the mountain – you would think someone in that group would advise you not to do that unless they have checked to see if it is yellow or not? great advisors you are traveling with.

    thinking of you daily

    Fred

  9. Mindy Patrick says:

    Bret- Hello don’t know if you remember me or not (Mindy) I was one of the individuals that took you guys into Islands of Adventures. Aaron had forwarded your blog to me so I could keep up with your journey. I guess he got tired of me asking about your progress??? :):):) Anyway, I just want you to know what an inspiration you are by sharing your journey with all of us under the current situation. I tell Aaron everytime I speak to him that I will pray for your healthy recovery and that the treatments that you are recieving reacted to the cancer. This story touches my heart everytime I read about it. You see my mother is a survivor of breast cancer and my prays worked for her, so they must work for you as well. You have a wonderful attitude and a wonderful outlook that I am sure puts smiles on more faces then just mine. Keep a positive attitude and keep smiling:):):):) Keep riding!!!!!! Take care. Mindy a good friend of your brothers.

  10. Nanette & Bob Cownie says:

    Bret, I keep reading your blog and try to join you each day of your journey.
    I often want to post a comment, but am never quite sure how to express my admiration for the way you are teaching each of us the importance of celebrating the beautiful friends and family we are surrounded by and recognizing that each day is a gift to cherish. Thank you again for having the courage to share your amazing ride with us. Remember always that you are surrounded by our love and prayers.

  11. carolyn lowell says:

    Bret and Shannon, I am a friend of your Mom’s. We have been following your journey across the USA. What a joy it is to see you making the best of every minute. We are praying for you everyday – everytime I think of you all. Which is seceral times. My children are 33, 30,and 28 so I truely identify with your parent’s feelings. Our church is also praying for your strength each day. Keep up the fight. Love and prayers to you all, Carolyn and Brad Lowell Dalton, NY

  12. Carolyn Blocher says:

    Bret and Shannon, I read the article in the Lafayette, IN paper, Journal and Courier. I admire your attitude and courage. I have an experience and some information you might be interested in but I don’t know how private this reply is. Do you have an e-mail address that you would e-mail to me? May God bless you. Carolyn

  13. Fred Borrelli says:

    Bret and Shannon

    I don’t care what you say -but that does not look like spring to me in Sodus. Glad to see you have relieved some pain in your leg. Hope all is well and eat the asparagus like your big brother told you to.

    Fred

  14. Darryl Krieghoff says:

    Bret and Shannon,
    I have read some of your story. I am a survivor of clear cell sarcoma. I have a cabin in the Yucca Valley Ca. You can come stay in it, the desert flowers are about to bloom.
    Take Care,
    Darryl

  15. Barbara Delisi says:

    Although I am not a cancer survivor, I am an amputee. Lynne Simpson is my distant cousin and she told me about you. My prayers and best wishes go to you and your family. Being an amputee does not change who you are; my comments to people who ask are that it’s just a body part and makes life a little more challenging and sometimes inconvenient. By the way, my LBK amputation was the result of a motorcycle vs. truck mishap while on vacation in Wisconsin eight years ago and I still ride pillion with my husband.

  16. Norm Meaker says:

    Bret, I,ve been following your story with interest. I applaud your response to such a tough situation. You have my best wishes. Hang in there.

    Norm Meaker
    Glen Allen,VA

  17. Andrea Greisberger says:

    Hi Bret,
    I’ve been following your blog since the beginning. I just wanted you to know that your strength and positive attitude is truly inspiring. You and Shannon are a great team! You’re so lucky to have each other. The love of your family and friends is evident in every entry you write.
    Thank you for sharing your story.
    You’re in my thoughts and prayers.
    Andrea

  18. Kristen Seamans says:

    Bret,
    I have been following your blog for weeks. I want you to know how much I am rooting for you and praying too. You have an amazing spirit. Keep fighting, you are fighting for us all.
    Kristen (CSS survivor)

  19. Cathy Marinan says:

    Bret,
    I am praying for you. Keep faith in God, and you will be richly rewarded. Life is so
    precious. I am a friend of Carol Burke. Her beautiful daughter, Holly, who died from
    CCS, was engaged to my son, Kyle. Thank you for your inspiration, and know that
    you are making a difference in this world.
    Cathy

  20. Lisa Dotson says:

    Bret, I know you don’t know me but my father is fighting this awful desease also. We thought we were out there alone. Thank you for sharing your story with us. The more we put out there the more we make people aware of this aweful cancer. My father Warren Smith was diagnosed for CCS on March 26th, 2009. He was being treated for a sugar sore for 13 months before that as it continued to grow. Finally after changing doctors 3 times we got the diagnosis. We had no idea what we were in for. My father had the front half of his foot from the front of the ankle forward amputated. He was tested every 3 months after that and was clean until this past April 2011. It came back in his shin. He had it removed 3 weeks ago and while they were closing that incision they think they felt another one under the skin. They could not remove it because they barely had enough skin to close the first incision. There was no room to pull the skin in a different direction to remove the other one. We go back to have the incision checked on June 6th, 2011 this coming Monday. If it’s healing good they will schedule to remove the other one. If it is healing slow and it might be because he is diabetic then they will probably opt to amputate higher up on that same leg. This will be very difficult for my father to take. It took over a year for the last amputation to heal. He is 71 years old and I am not sure how he will take the news. Please keep him and my family in your prayers as we will be praying for all our fellow CCS patients. Please contact me I would love to talk to someone eles about my Dad. I have bee trying to get in touch with Carolina but with no luck. I would really like to know how she is doing and how you are holding up? May god bless Chris and Holli and their families. Anxiously waiting to hear from anyone of you. Thanks Lisa Dotson

  21. joe kohler says:

    Bret…..

    Prayers,blessings,and Saluting your incredible bravery,geneorisity of spirit in sharing this War you continue to Wage,for anyone,everyone Ever cursed with this evil invasion.

    You Need to share your Story with PBS for all,and everyone fighting The War…

    Joe Kohler

    • Dr. Kirk says:

      Hi Bret,

      I echo Joe’s best wishes as well.

      Dr. Kirk

      Joe,

      This is Dr. Kirk from Alpena, MI. My family stopped by your place 10 years ago while we were vacationing in the keys, and you were kind enough to show us your condo. I just ran into Duane Cadarette today and he asked if I had talked to you lately! Small world.

      Blessings!

      Dr. Kirk

      http://www.AlpenaChiropractor.com
      (989) 356-WELL (9355)

  22. Susie says:

    Bret,

    Unfortunately, I lost my brother Doug in June of this year to clear cell sarcoma. He fought harder than anyone I know.
    Doug endured many surgeries in his one-year battle with his disease, his last surgery a full leg amputation in February of this year. That last surgery really restricted him. I am not sure if he would have done things differently if given the opportunity. All I know is that I really miss him.
    However, I really respect your decision and my prayers are with you. Enjoy your family and continue to hope that with research, your life and others who suffer from this horrible form of cancer can be saved.
    Thanks for listening,
    Susie

    • Carolina DeHond says:

      Dear Susie,
      I am so sorry for the loss of your brother, Doug. My name is Carolina DeHond and I too have been battling Clear Cell Sarcoma. I have had the honor of talking with your brother many times over the phone- he was such a Fighter with a positive attitude who will be missed by all who knew him.

      If there is anything we can do to help you or your family- we are here for you! I am not sure if you, Doug’s wife or kids are open to this idea but we have a small group of 19 people who have CCS or family members who have lost their loved ones to Clear Cell Sarcoma. As of right now it is via e-mails. Some of us have FaceBook pages (Mine is “Carolina’s Fight ” you are welcome to join ) and others have blogs as Bret does. You and anyone from Doug’s family are welcome to join our group by sending me your e-mail addess to ( Caro0122@hotmail.com ) Our group is for comforting each other, sharing stories and hope to find a cure someday!!
      I am sorry for your heartaches and loss!
      Take care,
      Carolina

    • Ashley says:

      Hi Susie,

      I had the pleasure of speaking with your brother Doug several times in early-mid 2010 – he and my boyfriend Chris connected and spoke/emailed often during Chris’ battle with CCS. I was so sorry to hear about his passing (Carolina emailed those of us on the unofficial email list that she has set up) – he was so kind to Chris (Doug was the only person with CCS that Chris connected with before he passed) and was able to connect with Chris in a way that “the rest of us” were unable to do as we were not battling this terrible cancer. He is missed by many, including myself.

      Ashley

  23. Fred Borrelli says:

    Brett and Shannon

    Thinking of you both and hoping that the arrival of fall -the best time of year in upstate NY- is a welcome sign of change. I am hoping that there is opporuntity for postive change in your condition and you are able to enjoy a crisp -sunny fall day with your loving family. We continue to be fortunate to have you both share your experience with us. We have learned so much from you both and will always be indebted. All my best –
    Fred.

    PS – as a long-time Dolphins fan I am converting to a Bills fan as they are inspiring. Did you provide some motivational help to them?

    Fred

  24. Kelcy Holyoak says:

    Hi, When I lost my brother over 15 years ago we could not find any information about clear cell sarcoma. We always thought that the cancer was related to his service in the Gulf War. He was also a policeman are worked regularly with radar. It would really be nice to find out what it is caused from. Craig had his leg and hip amputated shortly before his death and it was donated to cancer research. I am hoping it helped the fight. Craig was thirty when he passed away and left a daughter and wife. What a wonderful brave soul he was and I and my family miss him very much. Good Luck and blessings to you during your fight. Let me know if you would like any other information.
    Kelcy

    • Carolina DeHond says:

      Hi Kelcy,
      I am sorry to hear about your brother. It’s never easy to lose anyone espcially when they are so young. That was great that Craig donated to cancer reserch! He helped to find a cure! I’m not sure if you know that Bret passed away this past Fall after a good long fight with CCS. My husband and I had the honor of meeting him, his wife and wonderful family as well!

      I have started a CCS support group if you or any of your family memebers would like to join. I have a Facebook page “Carolina’s Fight” or my personal page “Carolina Contreras DeHond”.

      Thank you for sharing your brother’s story!
      God bless, Carolina

  25. What’s up all, here every person is sharing these knowledge, thus it’s good to read this blog,
    and I used to pay a visit this weblog everyday.

  26. believe says:

    Hello,

    Your stories are sad and inspiring, we must all have hope. I am mailing you all in the hope someone can point me in the right direction, please. My close friend, 30, with whom I attend appointments – first tumour was removed in May, then radiation, tests last month show it has spread into 2 tumours in bone. We were told only on Friday it is clear cell sarcoma and the doctors will do 2 chemo treatments starting in 2 weeks and then assess if there are any results. It is quite clear from my research that chemo has no good affects on clear cell sarcoma, so we are now looking for a second opinion. We live in Europe. Carolina, You said you found good experts in Germany? Can you pass me their details? And if anyone else can recommend clear cell sarcoma experts in Europe (France or Italy ideal) please do send me their contact details and better yet any medications that are showing promise? I am most concerned following my weekends research that our Doctors have only prescribed chemo.

    Wishing you all well, and strength and hope and most importantly: to always believe in miracles.

  27. Carolina DeHond says:

    Dear “Believe”,
    I’m so sorry to hear about your friend and their recent diagnosis 😦 I have organized a small group of 20 or people around the world with CCS, if you would like I can add you. It’s a support group and we all share our stories, treatments, ups and downs etc.. It’s simply through e-mails. In fact we have 2 (I think) in Europe who have CCS and would be happy to know of someone else in Europe as they have asked before.
    I have been in Germany for treatment and it was useful however we wouldn’t go back (we can talk details via e-mail). I do alternative treatments in my home and have not done any chemo or radiation because as you stated it isn’t effective.
    My e-mail is Caro0122@hotmail.com I look forward to “talking” to you more in details.
    Sincerely,
    Carolina

  28. Lisa Dotson says:

    Dear Believe,
    My father is also fighting clear cell sarcoma. He has also not had any chemo or radiation. My father and Carolina seem to be on the same schedule. Both being diagnosed with CCS at the same time and both getting a re-occurrence around 2 years later around the same time and now so far both are cancer free for now. Please have your friend get a second opinion before they get the chemo or radiation. Neither my dad nor Carolina have had it and so far are doing good. Please join our group as Carolina suggests and get all the info you want. It is private for CCS patients and their families only. We are all pretty close and very comfortable with each other and always there for each other. You are welcome with open arms.
    God bless. Lisa

  29. Highly energetic blog, I liked that a lot. Will there be a part
    2?

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