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StoryCorps | National Day Of Listening

Partnering with OHSU with a grant from NCI

Oregon Health & Science University and Doernbecher Children's Hospital were chosen to be the 2010 Oregon state representative for StoryCorps National Day of Listening. While the country was out shopping on Black Friday, many gathered around the country to share their story of life.

At Doernbecher Children's Hospital, twenty members of the cancer community shared their journey with us. Participants of all age groups included current patients, survivors, family members as well as medical staff. We hope that through those moments of courage, humor, tears, trails, and triumphs of one another's stories that we can inspire those around us and provide hope for a better future.

Josh & Carson

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Josh & Spencer

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April & Lynette

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Medical Staff

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Heidi & Melissa

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Peter F.

                                                                                                         Peter- 2011 052

It is now 4 years since we heard the words that Peter had cancer. Peter was diagnosed with ewing's sarcoma, in his pelvis on March 11, 2009.  At the time Peter was 11 years old. Peter had 14 rounds of chemo, 5 weeks of radiation treatments and had 1/4 of his pelvis removed. Peter's pelvis was replaced with cadaver bone and secured with a metal plate and screws. To regain his mobility after surgery, Peter worked really hard. Currently. Peter is in high school and plays both basketball and soccer for his school teams. Peter has the physical scars from his cancer, but our whole family carries the emotional scars. We have learned from this experience to cherish every moment and not to take anything for granted. We are not promised tomorrow, so we must make the most of today.

 

 

Daniel N.

By way of introduction, I am both a physician and a sarcoma survivor. As a physician, I am an internist, pain medicine specialist, naturopathic physician, and Chinese medicine doctor. Needless to say, this background has introduced me to a broad swath of both conventional and alternative treatments.

As a patient, I had a chondrosarcoma resected from my right hip, and a ‘long stem prosthesis' inserted on July 19, 2007. I wish I could offer you an alternative medicine cure for sarcoma, but I have no such miracle up my sleeve. If not for the expert surgical care of Dr. Ernest Conrad and his team at the University of Washington, I would not be healthy and disease free as I am today.

What I can offer you, however, is a protocol I have used not only on myself, but on many of my patients, to accelerate and enhance post-operative recovery. I have seen this protocol (at times modified depending upon the surgery and individual patient) facilitate recovery from a wide variety of surgical procedures.

With respect to my personal anecdotal surgical recovery experience, despite having a large tumor which required the excision of nearly half my femur and quite a bit of the surrounding soft tissue, I was off all pain medication (including aspirin, acetaminophen, or NSAID's) within 48 hours. The bleeding from my drains decreased rapidly and they were pulled after 4 days (considerably shorter than usual).

Most remarkably, though, has been my long term recovery. Due to the extent of the tumor, and the current state of technology, the only muscles that could be reattached to the prosthesis were gluteal muscles secured by two cables, one of which broke shortly after the surgery. Despite this, Dr. Conrad was surprised to see that at my 6 month follow-up, I had function not only of the gluteals, but of other important hip muscles, such as the psoas, iliacus, and adductors. The only plausible explanation he could offer was that these muscles had attached themselves directly to the titanium shaft of the prosthesis. He noted that this had been seen in rabbit models, but not in humans! (I do like carrots, but have only two children, and...well, we'll leave it at that).

I am now fortunate enough to walk without a cane (except for long excursions), I can climb stairs with my effected leg, and can arise from a full Asian-style squat without supportive assist. No, my hip is not 'as good as new:' I will never run again, and when I get tired I have a visible limp. Nevertheless, my functional recovery has been beyond my as well as my surgeon's expectations.

For more information on Dr. Newman's sarcoma surgery recovery protocol or supplements, please identify yourself as a sarcoma patient, and e-mail your request to: This email address is being protected from spambots. You need JavaScript enabled to view it. .

Daniel I Newman, M.D., N.D., M.S.O.M.
Diplomate, American Board of Internal Medicine
Diplomate, American Board of Pain Medicine
Diplomate, North American Board of Naturopathic Examiners

Kate V.N.

I remember Kate's first ear infection. She was only 4 months old and I was so anxious and upset that my baby was hurting and sick. Every parent wishes nothing but health and happiness for their children. It is possible to imagine your child being seriously ill and you think that you know just how you'd feel and what you would do. Reality is nothing like you ever imagined. The instant feeling of terror and helplessness is nothing like you have ever experienced before. When your pediatrician says the words "your daughter has cancer" your world as you've known it, is forever changed.

Our journey with this disease began in May of 2003. Kate had come to me in April, just before spring break and showed me a very small lump (about the size of a quarter) on her right leg. It looked like a welt. I figured she had banged it during gymnastics practice and told her we would keep an eye on it. A few weeks later I asked her how the bump on her leg was, fully expecting it to be gone. She said it was much bigger and I asked her to show me. It was at least double the size of just a few short weeks ago. My husband and I were sitting on the couch and we both looked at each other with worry. I had a sick feeling in the pit of my stomach. The next morning I called the pediatrician and they scheduled an appointment right away. Kate's doctor looked at it, and examined it, and said she would be right back. I was still holding out hope that she would just say it was nothing to worry about and send us for an x-ray or something. Instead, she came back to the room with a piece of paper with the address and name of a pediatric oncologist on it. She said they were waiting for us and to drive right over. My husband was with us thank goodness, and we left immediately. Kate thought it was all an adventure, a morning off school! I was scared, but still very optimistic.

By the end of the day after a CT scan of her leg, a meeting with the oncologist and a surgeon, we knew she had a tumor of some sort in her leg and that it would need to be biopsied. The surgeon scheduled it two days later and everyone kept telling us there was a 75% chance it was just a benign tumor. We were worried, but figured with a 75% chance of it being benign; things would turn out just fine. Kate was nervous but thought of it as another adventure, as she had never been in the hospital before. The day of the biopsy the surgeon came out and told us we should prepare that the pathology would not be good news. He was a wonderful person and spent nearly thirty minutes with us answering all of our questions. The wait then began. We knew a week later that it was a primitive high grade sarcoma of some type, but the hospital pathologists had never seen anything like it. They sent it to Emory University to Dr. Sharon Weiss an expert pathologist on Sarcomas. As we waited to hear just what type of sarcoma she had they did a bone scan, a chest CT, a PET scan, and an MRI. The news was worse than anyone thought. She had stage 4 cancer with what looked like mets to her lungs and femur. A Hickman catheter was placed and a bone marrow biopsy was done. Two weeks after we had taken her in we heard the words Mesenchymal Chondrosarcoma. No one knew much about it and there was no treatment protocol. Because she was stage 4, they began chemo using the Ewing's Sarcoma Protocol. After two rounds of chemo she had the tumor removed and we had the first good news in two months. Her tumor was only 3.8cm in size and the surgeon had obtained great margins. No radiation therapy would be needed. We also found out that the bone biopsy of the supposed met in her femur was normal! She then had three weeks to heal and chemo began again. Another month went by and the chest CT was repeated. It had been three months since the original and it showed the exact same tiny spots were unchanged in any way. The radiologist said it was unlikely they were Mesenchymal Chondrosarcoma mets, but a probable post inflammatory process. This was our first moment that we thought wow, maybe this isn't as bad as everyone thought! Kate finished her chemo at the end of September, just 5 months after diagnosis. Her chest CT still showed no change and everyone was cautiously optimistic at this point.

Her continued chest CT's show her lungs to be unchanged and she is thriving as a fourteen year old. We have had moments of worry over the years, most recently a new lump she found that needed to be biopsied. Thankfully the lump was some scar tissue and bone growth over a metal plate in her leg. It did bring back the fear instantly and reminded us of our family's commitment to help raise funds for sarcoma to someday find more effective treatments for this difficult cancer.

The experience we have been through has taught each of us valuable lessons in life. I have learned to "not sweat the small stuff" of which I was very guilty of before. I also enjoy each moment of my children's daily life. It has made dealing with the moody teen age years much easier, as I can quickly bring to mind our terror of losing Kate and it gives me infinite patience with my two kids.

My husband who has always been a wonderful father and husband, has now re focused his priorities and makes sure his life is balanced between work and home. He has a renewed sense of family and is always the life of any activity, always the one who has a car full of kids going up to snowboard for the day or taking the kids out in the boat to wakeboard or go tubing.

My son, Drew who is 17 has a sense of what family really is. He has developed a wonderful sense of compassion for others and I think he really enjoys spending time with us. (Those of you with teens understand the enormity of that statement)! We are very proud of the person he is becoming. Much to Kate's pleasure he has always treated her just like his little sister. When she was going through chemo, he still teased her and gave her a hard time as he had before, I know she loved this, as being treated different always made her mad.

Kate is someone who I am incredibly proud of. She was sunny and positive while going through treatment, fought hard to get all of her strength back after her surgery, and now has embraced the fact that she is a survivor. I t would have been easy to get past all of this, and return to her old life of being a kid; instead, Kate has become passionate about fundraising. She wants to help others who are facing the diagnosis of Sarcoma.

Kate became involved with the NW Sarcoma Foundation almost three years ago at the first Hike, Bike, or Trike. I had stumbled across their web site looking for more information about sarcoma and was thrilled with all of the information the web site had available. We were lucky with Kate's outcome; I now realize how important it is to seek out a Sarcoma center of expertise as so many sarcomas are mistreated initially by general surgeons due to their rarity. I was also happy to learn of this wonderful community so nearby that was offering support and trying to make a difference in the lives of sarcoma patients and their families. Kate sent out an email to all of her friends and family, she formed a team called the Sarcoma Slammers, and had 22 people join her for the walk, all wearing white hats. She raised $5,300 for the Foundation her first year and raised $6,100 last year. Most importantly she came away with a sense of doing something really important to help others still battling this disease.

I know that we will always remain involved; supporting others who are newly diagnosed and "fighting the fight" with the direction and guidance provided by The NW Sarcoma Foundation.

Chloe B.

At close to 4 month's old Chloe started to run a mild fever. We woke up on aThursday to find that she had gotten sick sometime in the night and she was burning up. Thinking that she had the flu and given how high the fever was we made a trip to her pediatrician that day. During the process of determining what may be going on a urine and blood test was run and sent to the lab while we waited. Urine test came back with traces of white blood cells and the blood showing that it looked like an infection of some kind was going on. The immediate thought was a urinary tract infection (UTI), the doctor explained that these were common in little girls and that it could be taken care of with some antibiotics. One of the concerns though was that because of her age if it had or was spreading to her kidneys that could make things substantially worse. The doctor commented that typically for UTI's they would give her a shot of antibiotics here and send us home, however, because she was not quite 4 month's old yet she wanted to send us to the hospital for a broad spectrum antibiotic via an IV to make sure they kill what ever bug may be growing in her and to check and to get an ultrasound of her kidneys to make sure it had not made it that far. So we packed her up and headed right over to the local hospital. We got our room and Chloe was started on her IV. The hospital wanted to keep her over night for monitoring and then they wanted to do the ultrasound the next day. Tina and I both stayed with our little girl over night trying to sleep in a chair only made for one. The next day (Friday) Chloe had her ultrasound and we headed back up to the room. Tina's mom was kind enough to come relieve us for a couple of hours to go home and get some sleep before coming back to pick up Chloe and return home. We had only been home maybe an hour when I received a call from a doctor who we hadn't met or talked to before. I recall a tone in her voice that automatically put me on guard, "We have found a large mass in or near her abdomen. We are going to transport her to Children's Hospital with her grandma by ambulance and we need you and her mom to meet her there. We want to get tests started right away before the doctors and everyone go home for the weekend." If she said much more than that or anything afterwards I don't recall it. I broke the news to Tina and we immediately headed to the hospital. Testing involving imaging, poking and restraining our little baby girl began and would last over the next few day's intertwined with doctors in and out of our room, forms being signed, questions asked and no sleep. Initial diagnosis came back that they believed, but were not positive of, that it was a germ cell tumor. It was explained that while not common they do see this type of thing in little girls. It was explained that they are tumors that grow on the ovary, 99% of the time they are benign and treatment involves taking an ovary, a fallopian tube and the tumor with no Chemo needed. While the news was devastating Tina and I both realized it could have been worse.

Surgery was scheduled. The surgery took several hours with Tina and I waiting for the beeper to sound signaling the surgery was done and we would soon have our baby back. Finally the beeper goes off and we head to the recovery room. I remember Tina asking me while we wait "what if it is cancer?" and all I could think of to say to her was "that if in fact it was, we bear down and beat it with her, there is no other option". The surgeon walks in. I was standing and Tina sitting. He looks at me and tells me that I probably want to have a seat. I remember thinking why do I need to have a seat, you don't need to sit down to hear good news. I sit next to Tina and the surgeon proceeds to explain that the surgery went well and Chloe did not bleed hardly at all and did not need any blood. This was one of the main concerns when the surgery was being discussed. Then the "but" was mentioned,,,,,,,,but the tumor was not coming from her ovary like we thought it was,,,,,,,,,,,it was actually stemming from her bladder and about the size of a grapefruit. The doctor pauses and has a look on his face so I ask if this the same thing just from a different area, still benign, etc. He tells us no, and explains his initial assessment is that it appears to be a tumor known as Rhabdomyosarcoma (Rab-do-my-o-sar-coma), and that it was definitely malignant. Pathology would have to confirm. Chloe was being taken back up to her room, Tina and I now had to go tell our friends and family waiting for us back at the room that Chloe had cancer. We were now in the hospital until whenever while Chloe continued to be poked and diagnosed.

A few day's later it was confirmed that Chloe's cancer was Rhabdomyosarcoma sub category Embryonal. It was also determined that they did not feel they had gotten it all as they saw "positive margins". Another surgery was scheduled for later down the road, her Hickman or central line as its called for the chemotherapy was implanted and we began our new life as parents with a "Rhabdo Baby".

A year and a half or so later, a second surgery, cat scans, chemo treatments, learning what it means to have a child with cancer and all the things that go along with that emotionally and physically, a scare that there was a reoccurrence, and our first cat scan since she has been taken of treatment coming back clear and here we are with just an amazing little girl who has shown a strength that I am so envious of and who has never missed a beat.

Through it all no matter how it appeared she was feeling she never stopped smiling as if to say Mommy and Daddy, we're going to be ok.

David, Tina, and Chloe

Warren B.

You would think that "Staying in the Game" meant the ability for me to be able to win the 2008 Alaska State Racquetball Championship in all ages, at age 62 years old while drawing a social security check!

But actually "Staying in the Game" for me is the transition my life slowly took in a positive way 7 years ago when I was told by my primary doctor, that I had an incurable and very rare cancer called Leiomyosarcoma or LMS. Soon afterwards, I would find out , that it also was Stage 4, and had already metastasized from my right thigh to my lungs! Immediately, my business, family and of course my competitive Racquetball, everything came to a stand still! My life that was in the process of lasting forever, with very little to worry about, suddenly changed right then and there!

My new life was about to begin! Which at first was completely void of goals and direction and most importantly fear!

Because LMS is so rare, Alaska Hospitals were not qualified to give me the proper care and treatment. So even though my family and business was here, my wife and I have spent a good part of the first 5 years in Seattle at there famous Seattle Cancer Care Center and the University of Washington Hospital. The first 5 years were spent trying to catch up with my cancer.

While recuperating from my first surgeries in Seattle I read a book written by Lance Armstrong, that my Uncle had bought me. It was just a book, but it had a tremendous impact on me! I decided then and there that I was going to survive, and that I needed to face this "beast " head on! I also wrote down a quote (offered by Dr. D. Kossove who also has Leiomyosarcoma), that I keep to this day from Dr. Seuss. He said "you have brains in your head, you have feet in your shoes, you can steer yourself in any direction you choose. You're on your own. And you know what you know. You are the guy who'll decide where to go!

Now it has been 7 ½ years since I made up my mind to "stay in the game", and not to let this disease change my life, except in the direction I want! Being a survivor has changed my life in a positive way. No matter what course this cancer goes, I'll meet it head on as I've done so many times before with the wisdom and knowledge that Lance Armstrong , Dr. Seuss, and others have taught me!

I now travel the country playing in National and International Racquetball Tournaments, and am currently ranked 5th in the world in my age category. While traveling I meet, talk and sometimes help survivors and caregivers with Sarcomas and other Cancers. Through my Racquetball, I've been able to get my word out to help in the fight for cancer through speeches, newspapers, magazines, television and my annual "slaying the beast" Racquetball fundraisers in Anchorage. It has become Alaska's largest racquetball tournament with many of the participants playing only because its a way for them to help with cancer! Also, in May 2009, we will have a very large tournament in Washington State, to raise money for Sarcomas, and slowly I hope, through Racquetball to have more tournaments, around the country.

With my new life that God has extended to me, I am a board of trustee for LMS direct research foundation trying to find a cure for cancer.

Before cancer, I played Racquetball for me, but now I play it as my way of helping fight cancer. Like so many other people, my only hope is to find a cure. Otherwise. I will always be fighting Sarcomas for as long as I live! Helping people with cancer is, and will be my main purpose no matter which direction my cancer goes, good or bad, for as long as I live!

Last but not least I want to include my family. They've been with me for every challenge and they've made me so proud with their love and devotion. I've come to realize that my Grandkids look to me with respec, and handling this disease correctly will in some way be another lesson I can teach them in life.

Thank-you very much for allowing me to tell my story.

Warren

Kayla C.

To say things can change with the blink of an eye is an understatement for any one that has been touched by cancer. In the matter of 4 days, life as we had always known was turned upside down. My 9 year old daughter, who was healthy and full of spunk, was about to face the battle of a lifetime. When she started limping 5 days before Thanksgiving with no swelling or pain in her knee we just figured she was growing. After 2 days of limping, her knee was swollen but did not hurt at all. In another 2 days she started having pain in her knee and the swelling wasn't going down. We took her into the emergency room to see what was so quickly causing so many problems with her knee. We had no idea that we would be leaving for Seattle in 2 days, the day after Thanksgiving. On November 26, 2006 we arrived at Seattle Children's Hospital from Fairbanks, Alaska, with no idea of what lay ahead or how long we would be gone. We left behind family, friends, a job, and school, trading it all in for uncertainty and fear. I also found myself wondering how does this happen, and why is it happening to my daughter?

November 29, 2006 is a date that will never be forgotten. It is the day that we were told that Kayla had a very aggressive form of bone cancer called Osteosarcoma, confirmed from the biopsy they had just done in the OR. We would not be able to see her for a while, they had called in a general surgeon to place her Double Lumen Hickman, or as we referred to it for the next year and a half, her central line. They told us that from all of the other tests done, her tumor was localized and they saw no spots in her lungs. I think that was their bit of "good news" after the bomb they had just dropped on us.

For the next 3 days, with Kayla in the hospital recovering from surgery, we met with social workers, nurses, nutritionists, oncology doctors, orthopedic surgeons, and nurse practitioners. I had a crash course on how to care for her "line", a lesson on what blood counts were and what they mean, was taught how to give her GCSF injections, and was given a road map (her course of treatment over the next 10 weeks) that lined out what chemotherapy and how much of it she would get. We were told her tumor resection and knee replacement would happen in February, and based on how much of her tumor had died once they got it out, would determine what would happen after that. Exactly 7 days after her biopsy, I sat next to her bed, and watched the first doses of chemo enter her chest thru her Hickman.

By her 3rd round of chemotherapy her blood counts were having a hard time recovering and we started with both red blood cell transfusions, and platelet transfusions. She had made it to Christmas with a little bit of hair on her head and on Christmas day we shaved the last of it off before she entered the hospital for her next round of "poison". Watching her little body struggle so hard with each dose of Chemo, was something I would never wish on any parent. I just kept telling myself that it was killing all of the bad cells in her body and when they removed her tumor in February we were going to be on the home stretch.

For us, February 21, 2007 was going to be the beginning of the end. We waited patiently with our pager on our hip waiting for the OR to page and give us updates. After 4 very long hours we received the page that Dr. Conrad was ready to see us. He explained that the resection went very well, and the new prosthetic fit perfectly. He also felt he got very good margins, but we would have to wait to see what pathology had to say. Kayla had handled surgery very well, and she would be in recovery soon so we could see her.

The next week was in slow motion. Kayla was recovering from surgery very well, but every day I waited to hear what the pathology on her tumor was, wanting to know what the plan was from here on out, and of course wanting a date to shoot for to go home. I never in a million years expected to get the news that I did. Although they had good margins (that means that they were confident that they had removed the entire tumor) Kayla's tumor was only 50% dead. I was just sure that when we received the report that we would hear 90%, the number we needed to put her into the "good responder" to chemo category. What that meant for her long term prognosis was huge. She now had a 50% chance of her cancer reoccurring instead of the 25% if the chemo had worked better. I must have had a look of pure disbelief and shock on may face, because the next thing I remember was my daughter saying, "well 50% dead is better than no dead, mom!" How did my 10 year old daughter see the glass half full, when all I could see was the glass half empty? From that day forward I learned many a lesson from her. She taught me what it really means to live, a lesson that only someone who has faced the true reality of death can teach.

Kayla had 12 more rounds of chemo, countless transfusions, and many unplanned stays in the hospital for any number of reasons. Thru all of this, only 1 time, did she look me in the eyes with tears and say, "Mom, I don't think I can do this anymore." 1 time. I had been saying it for months to myself, and my very young, wise daughter said it only once.

In March of 2008, we moved back home to our family and friends. Kayla's cancer is still in remission, as of November 18, 2008. Every 3 months we go back to Children's Hospital in Seattle for checks, each time hoping that we will receive good news and are able to come back to Alaska after just a few days. Kayla is on the swim team, busy with Girl Scouts, and just being a kid. Every day I am thankful that my daughter is still with us, and every day I think about the fact that this horrible disease called cancer may return. It doesn't stop us from living, but it has defintely changed our lives.

Carson S.

Talking to adults about going through chemo and experiencing cancer is easier than trying to talk to kids about it. My challenge has always been to just be another one of the kids, to fit in and not be "that one legged" guy. One of the ways I get around being the cancer victim person is when kids ask me what happened to my leg I tell them my "surfing" story.

One little kid was giving me that look in the grocery store one day, and you can tell they want to ask you what happened to your leg, so I looked at him and said - you know I went on a trip to Hawaii wanting to soak up all that it had to offer. So one thing I wanted to do more than anything was surf so I got to! After about thirty minutes learning on the sand I got to go out in the water. I'm paddling out there, the waves are taking me out, sun is shining, I am up on the "whoosh" factor, I sit up on the board, waiting on the next wave and BAM - shark got me - cut it clean off and that's the truth...

Now let me tell you about the real adult story. Finding out that I had cancer was like eh, whatever, can I go out and play now? That's how I looked at it till the day chemo was introduced to me. I can remember the first night staying at the hospital finding out what cancer really was and what it met. The challenge to live was on - right when I walked in that hospital without me even knowing. Every night got harder and harder, I can remember asking my mom can I stop I don't want to do this anymore and her just saying you have to do this. I think that is when I knew this wasn't going to be easy and no matter how much I cried and begged this was my life and I had to make it my own. But it didn't get any better for me.

My new life was in that hospital bed but when I got to go home oh my god it was the best thing that could ever happen to me. Going home meant I got to see my family, eat REAL food, sleep in my OWN bed but most importantly see my best friend, my brother. I think we all have reasons why we won't give up on certain things in our lives and he was mine. I couldn't show him I was scared and that I was about to give up. After couple months of doing this I was just a numb 12 year old boy I didn't fight anymore to go I was too tired to fight my mom to let me go, but one day after about my second month of having chemo I was told I was going to meet this guy about what he was going to do to my leg. I went into Shriner's Hospital hating everything and anyone because this place was going to take my leg and I kind of liked my leg so I wanted to keep the thing. I hid under my coat when this crazy Dr. K came into my room not knowing he would soon safe my life and forever be a hero in my life. He told me about what was going to happen and went on for about an hour while I was still under that damn coat. I went home that day feeling like the world finally lived off my shoulders.

The day finally came for the new challenge to start learning how to walk it wasn't so much of living anymore because I knew I was here stay and it was going to take a lot more then cancer to put me down. After the surgery it felt normal to have leg like I was supposed to have this. I can remember doing a couple months of PT just thinking when I get that leg I am going to get up and run! But when I got it I couldn't even move. And right there I had a choice either to give up and just go slow and realize I can't walk normal for awhile or give it my all. Well I took my choice not to give up just because some tiny bump like learning how to walk again came along. I didn't have a choice to give up in my eyes it was only to look at the big mountain I was about to climb and to take whatever is thrown my way. And I did I can tell you now I'm at the top of the mountain.

Now 19 living without cancer is a rad thing to me, my goals have change so much over these years. Like running a marathon to going to college but one thing has NEVER changed. That is to help a kid get through what I once went through, I love to hear about foundations like this because I didn't have this when I was younger and I can tell you that you guys are making the biggest difference in the lives you help. And I would like to say thank you.

 

Joshua Brenneman

In October of 2004, Joshua Brenneman, age 4, was diagnosed with Ewing's Sarcoma, a rare bone and/or soft tissue cancer. The tumor had invaded his c-6 neck vertebra, destroying much of the bone. Joshua endured 14 rounds of intense chemotherapy and 31 proton radiation treatments often making him too sick to even play video games. The tumor was inoperable. After treatment, in August 2005, we discovered the damage done to his little body due to the treatments. Josh had to be fed through a g-tube because the radiation had damaged his throat. He was also given a tracheotomy so he could breathe, because the radiation had damaged his airway. He also has hypothyroidism, because his thyroid was damaged. Joshua has been through 3 years of a procedure called an "esophageal dilation" (33 total) hoping to keep his throat open so he can eat by mouth. Currently, December ‘08, Joshua is able to eat by mouth and has not been dilated for 6 months! The next big step will be the removal of his trach tube, which was attempted in June ‘08, but was un-successful. After dilating his airway three times and performing a minor surgery, Josh's trach tube was removed on October 6th, 2008. Unfortunately, we discovered problems with his night breathing due to vocal cord damage. At this time, Josh still has a stoma (hole) and we are seeking more opinions. Josh is 3 years past treatment and his scans are cancer FREE.

Joshua is surrounded by a family who loves him dearly. He has four big sisters, a brother-in-law and a nephew due to be born soon! He is a social, cheerful, happy-go-lucky 8 year old boy who loves rock climbing, tennis, Legos, Wii games and his friends. We are continually thankful for Josh's life and the love and support we've been given since Josh was diagnosed with cancer.

 

Justin S.

Almost four years ago, when I was twenty years old, I was diagnosed with Ewing's Sarcoma in my right femur. At first I thought it was complications due to my recent ACL and meniscus' repair in my right knee, but after an MRI and a swift round of testing, results showed it to be a much greater problem.

At the moment I found this out, the battle began and it was certainly just that. Through the support and experience of my family, friends and doctors, especially Dr. Conrad and Dr. Howlett, I was able to make it out of the struggle, cancer free about a year later. Finding the tumor in time and gaining all the knowledge about sarcomas that I could played an integral role in my survival. Awareness is the number one tool for prevention, detection and treatment. Although sometimes fatal, sarcoma can be treated if found in time. The NW Sarcoma Foundation can be a major influence in curing this disease and raising awareness. The foundation provides great information and facilitates fundraising events and opportunities that go directly towards conquering sarcomas. They also provide endless support for not only the patients, but the family and friends as well. It is so important to create a compassionate and encouraging atmosphere for all involved, which the Northwest Sarcoma Foundation certainly does.

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  • StoryCorps
  • Patient Profiles
  • Videos
  • Newsworthy
  • Photo Galleries
  • Community Support

     
    Nonprofit foundations like ours rely on foundation-sponsored events, grants, and sponsorships to fund programs, and community support is a key factor in our success. Whether it be a motorcycle ride, a walk in memory of a loved one, a baseball tournament, or a school can collection, the money raised all goes to supporting those with sarcoma and helping to find a cure.  We sincerely thank those who support the foundation with events like these in their communities, and we invite others to join in support of these efforts.

     

  • NWSF Newsletter
    2014 Q2 Newsletter web 0001
    2014 Q2 Newsletter web 0002

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If you would like to share your story or make a tribute, please send us your personal sarcoma experience (max. ~500 words), 2 photos (high quality) or link to a YouTube video. Please submit materials to This email address is being protected from spambots. You need JavaScript enabled to view it.

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