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.

Linda H.

In 1993 I felt a small lump, about the size of a marble in my right shoulder. I made an appointment with my general practitioner and he told me it was nothing to worry about. He called it a fatty tumor and said that it was very common. Several months later I saw my gynecologist and the subject came up again while I was talking with his nurse. He sent me to see a specialist and that Dr. wanted me to have an MRI. The MRI and a follow-up biopsy confirmed that I had a soft tissue sarcoma histiocytoma in my deltoid muscle. That was shocking news!

In the months and years to come I would have radiation and multiple surgeries to remove the tumor. During that time I was referred to Dr. Conrad. Through the UW Hospital I received 8 cycles of intensive chemotherapy. That was the most difficult experience of my entire life. The tumor recurred about a year after I finished chemotherapy and a forequarter amputation of my right arm/shoulder took place in January 1999.

Living with one arm hasn't been as difficult as I once thought it would be, but it does not come without some frustrating moments. My husband and I couldn't find very much information as to how to function in a two-handed world. So we "guessed and by goshed" our way to a few helpful ideas. The information we accumulated developed into my one arm web site. http://www.toysrbob.com/onearm/

It was also very inspiring for me to read two of Dave Dravecky's books dealing with his forequarter amputation, Comeback & When You Can't Come Back. Dave was a major league pitcher for the San Francisco Giants before he lost his dominate arm to cancer. He and his wife offer hope and encouragement to amputee's through their ministry. http://www.outreachofhope.org/

Through it all I have had the most awesome support from my husband, family, friends and my church. I have felt cared for in every way. I am extremely thankful and humbled to be able to say, I have been cancer free for 10 years! I consider that truly a miracle! Each day is a gift from the Lord.

I am extremely grateful to Dr. "Chappie" Conrad for his kind heart, his patience with me and his most knowledgeable expertise in my care. He was always willing to spend whatever time I needed to get through all my questions, concerns and fears.

Kenji M.

This journey started in late July, when after complaining of minor headaches for several weeks after working in Tanzania for nearly two years. The headaches, although no more severe than one might get during a cold, were rare to me and were growing worse. I was fortunate enough to be able to schedule MRI and CT scans within 2 hours at the Aga Khan Hospital in Dar es Salaam. It was no small feat since these were the only machines in the entire country!

After reviewing the results, I was diagnosed with a brain tumour, which ended up being the size of a golf ball located in the right frontal lobe of my brain. I was medically evacuated back to the USA immediately and within in a couple of days of my arrival in Boston, was scheduled for surgery. The surgery, lasting 7 hours, was successful, and the surgeon was able to remove all visible parts of the tumour from my brain.

Looking back now, I thought at the time that I would only be in Boston for a month at the most, but an initial diagnosis of PNET (Primitive Neuroectodermal Tumor) a rare brain cancer indicated that this would be a long journey.

The treatment for PNET was proton radiation followed by a course of chemotherapy. I underwent the proton radiation at Mass General Hospital which is, at that time, one of only 4 locations in the USA that provides the treatment. The treatment was very difficult to endure but I displayed minimal side effects and a lumbar puncture indicted that the treatment was successful.

During the radiation though, I sought a second opinion on the diagnosis. PNET, a rare cancer seen usually in 7 year olds, and located commonly on the back of the brain (not where mine was found) didn't seem right to me. The second pathology from Dana Farber indicated that that MGH's diagnosis was wrong and a third opinion from Sloan-Kettering confirmed it. Instead, I have a rare presentation (there is no literature on my situation thus far) of Ewing's Sarcoma. The doctors at MGH reported that they have never before seen a case of Ewing's Sarcoma in the front right lobe of the brain and for that reason they had neglected to test it fully, assuming that it could not be Ewing's.

The diagnosis of Ewings changed the chemotherapy regiment. I underwent a 11-month regime of five different drugs, given in three week intervals, alternating in-patient for five days and out-patient for two days.

On Oct 1, 2008, I finally completed my treatment with minimal size effects. Despite the continuous hardships after the completion of the treatment and my constant fear of a recurrence of the cancer, I had decided to follow my passion to work in the field of International Health/Development. After the treatment, I decided to work with Doctors Without Borders in Swaziland for a year. I recently came back to the US.

Jesse S.

When I first learned from my surgeon that I had Synovial Sarcoma, I was truly stunned. I was in the prime of my career working at Yahoo as a project manager for the kids division. I was traveling to exotic places for business meetings and finally feeling like I had made a leap in my career. Then a small, painful bump on my hamstring, a short operation I was told not to worry about, and an emotionless meeting with a group of doctors changed my life forever.

A malignant tumor, Synovial Sarcoma was the name of it, "it’s rare... You have to leave work, you need radiation, you need chemo, and you need a port". It was truly a blur...

I remember going home and surfing the web for two days straight. I hardly slept. My mother pleaded with me to rest, but I was relentless. My leg hurt. I needed to find someone that survived this cancer. I wanted to know if I had a chance. At some point, I recall wishing I had HIV as it would have been so much easier to find others to talk to. This was not the case though. I have some weird cancer that the doctors told me was still very mysterious to even them.

Finally in the darkest hour of this two day internet marathon, I stumbled upon a bio of a man that was a synovial survivor. Not only that, but he was successful and having a good life! I wrote him immediately. The next morning I was in his kitchen in Topanga Canyon, having a cup of coffee, and then I finally cried. It had been the first time...

Kirk helped me in so many ways from then on. He became the only one that truly understood what it felt like to feel alone on the planet. Once I started chemo, I was surrounded by sarcoma patients and felt less alone, but Kirk and I would have coffee every week to talk about how things were going. He was such a positive and great listener. He was a game changer for me, and I felt him with me through every scary radiation treatment, to chemo session when sometimes I was the only one in a long row of empty chairs just waiting for that last bag to finish...

Fast forward five years now, and I now live in Portland, Oregon. I have had no reoccurrences since my initial treatment and no metastasis of the cancer to any other parts of my body. There are many others that have had this same experience. Sometimes they choose to try and forget it all and put the cancer world behind them. This is an individual choice. As for sarcoma patients, most understand that emotionally, this isn’t something that really "goes away". Even five years out, I still tense up before every MRI and CT. I imagine I always will.

There are a myriad of stories that a sarcoma patient will hear through treatment. I have lost dear friends I have met along the way and have known others that are thriving and have great families. Please remember that everyone is truly biologically different and will have a unique outcome. There are no absolutes with sarcoma besides that it’s scary. For me it really helped knowing some that had made it through some of the darker tunnels of treatment and are alive and happy.

Now I can say I’m one of them. :-)

-Jesse Singer
August 2011
503.707.7704

Would you like to share your story? Send us your sarcoma experience + up to two photos or link to a YouTube video. Submit to This email address is being protected from spambots. You need JavaScript enabled to view it..

Jade S.

Jade was diagnosed February 4, 2009. She found the lump after a trampoline accident. She went to the doctor's office and they said there was a tumor in her tibia, so they sent her to Seattle Children's Hospital to do a biopsy.

Then at 10:00 pm they heard the terrible news. After several months of chemotherapy they put in a bone allograph (Replacement) and a metal plate in her leg. Then a couple months later she got a staph infection in her tibia and the doctors put her on antibiotics for 6 weeks, but the infection would not go away so they opened her up and scraped the infection from her leg ... Or so they thought. It came back and they did the same thing again, but after that surgery it was still there! So then they took out the plate, put in a spacer (Cement Bone with antibiotics built into it) in her leg. The spacer was there for 3 months then they took it out. When they went in that there was no infection!!!! (During all of those months of fighting infections she was still on I.V. Antibiotics). She had a total of six surgeries on her leg, and has lived away from home at the Ronald McDonald House for 14 months. Now she working on her walking and is a very happy 11 year old!

Share Your Sarcoma Stories

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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