Emma was diagnosed with osteosarcoma, in August of 2009 at the age of 17. She received treatment through the Mayo Clinic and St. Mary's Hospital in Rochester, Minnesota.
After her second round of chemo, Emma had a "one in a million" deadly reaction to the methotrexate. I was told she probably wouldn't live. The doctors had to get special FDA permission for a recovery drug from the United Kingdom which is not approved in the US. Of course, insurance won't pay for it, but somehow Mayo covered the cost. Emma was on dialysis, but thankfully her kidneys recovered. It was pretty much a miracle that she survived.
During the recovery time, the cancer spread up her leg, and her whole leg had to be removed in November 2009.
However, for three months Emma had no chemo when you add the time it took for the methotrexate to clear her body and time for the operation and recovery. The oncologists believe that during that time the cancer spread to her lungs. This, of course, makes things more difficult. I cannot tell you how many times I heard the word "terminal."
Emma did as much chemo in the fall of 2009 and spring of 2010 as her body could stand. In April of 2010 Emma had surgery in her left lung to remove the cancer nodules. There were over 50 spots removed, all less than 1 cm, however, she was listed as incurable.
In fall of 2010 Emma fell while on an incline with her wheelchair. She got an ambulance ride to Mayo where she was diagnosed with a fractured pelvis.
In March of 2011 Emma had a right lung surgery with 12 cancerous nodules removed. In August of 2011 Emma started college about 1 1/2 hours away from home.
In February of 2012 a cancerous nodule was found to be growing in Emma's right lung. She had a third thoracotomy - three Lenten seasons in a row. However, they only found three spots, and two were already dead. At this point they doctors changed "terminal" to chronic.
In December of 2012 Emma was discovered to have Graves Disease. In January her thyroid was "killed" via radio-active isotopes. She has to take thyroid supplements the rest of her life.
Also about this time Emma complained about back pain. Further testing showed that the cancer has spread to her spine, pelvis and clavicle. Emma received radiation "surgery" - pinpoint radiation to kill individual tumors.
Emma and her doctor have chosen to simply do palliative care at this point - keeping her comfortable. Emma perhaps needs more rest, but for now she is able to do most of what she did before. However, she is often in pain.
My heart aches for my "grown up too fast" daughter, who is now 22. How can one little body endure so much pain and induced sickness? I suppose this is one case where her stubbornness is good. She refuses to give up. As her mother, what can I do but support and encourage her? It sounds easy, but it's not. It's hard to watch your child suffer. It was hard to be away from home so long. It's hard to go without a salary for half a year, but I am ever so grateful that my job was held for me. (The people of God far and near helped us financially.) It's hard watching my parents suffer, too.
However, I have to remind myself that we have many things to be thankful for - you, our friends and family, God, a wonderful support network, the Ronald McDonald House, caring doctors and nurses, Sherrie Decker and all the Brighter Tomorrow parents, and . . . the list is truly endless.
Our journey seems long. We are human. We are trying to live while we live.
We have lost friends in the fight against cancer. Osteosarcoma seems (to me) to be most deadly with teenage girls. My theory is that their high level of hormones cause the cancer to grow more rapidly than in other patients. However, it's just "death on a stick" no matter one's age or gender.
I, her mom, Shirley, am heartbroken and stressed at times. However, we both know God is there along with lots of family, brothers and sisters in Christ, friends, and angels.
Emma's dream is to go to New Zealand. International travel is difficult for people in wheelchairs. The cost is also quite high. If God wants her to go, God will provide the means.
We have recently moved to northern Iowa to serve two different churches, and we are closer to Mayo. Emma receives hospice care, which she's not too thrilled about! She's blown through the first six months of hospice - still very much alive! However, I am very appreciative for the help medically and emotionally.
Thank you for caring.
Emma passed away on September 18th, 2014.