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.