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

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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!

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