‘Worried, protective, inspired, angry, devastated, reminiscent’

When Amy Dahlstrom originally shared her story, she and her family were spending their last weeks with Dahlstrom’s teenage daughter Faith, who has been battling Stage IV Metastatic Neuroendocrine Carcinoma Carcinoid Cancer for the last two years. Faith passed away March 27, 2015.

“In July 2013, my 14-year-old daughter, Faith, was diagnosed with an ultra-rare terminal cancer and had already progressed to a stage IV. She only has a few more weeks left here on earth with us. When I called my mother to tell her about my daughter, she informed me that she wouldn't be able to be there, she was having a biopsy done on her breast. She was diagnosed with stage II breast cancer, and she will soon be in remission for a year this coming April.

“Children's Mercy, with the help of St. Jude, the Mayo Clinic and M.D. Anderson diagnosed her. It took a long time since it's an ultra-rare cancer. We did take her to M.D. Anderson for a second opinion and confirmation. Since we were advised from the beginning that her diagnosis was terminal and that there are very few oncologists familiar with her type of cancer, we decided to continue her treatment through Children's Mercy. The course of treatment was to try all the chemo treatments available for her and full exposure radiation to provide her as much "quality of life" possible for the duration of her remaining life expectancy. We even agreed to participate in experimental treatments (within our comparability of the life risk involved) if she qualified. The mortality of our daughter was inevitable, but if her participation in experimental treatments could possibly save another child or help to extend their quality of life, then that would be her legacy and our gift to those families who face this devastation. It was Faith's desire to be in the comfort of her own home and room during her treatment, so we were put in touch with KC Hospice & Palliative Care-Carousel Pediatric & Perinatal Program to set up home care. She received her radiation treatments at the University of Kansas Cancer Center in Overland Park, Kansas. Her father and I both carry medical insurance on her, so the double coverage has helped with the expenses, plus we have we have reached out to foundations and various programs for families in our situation.  Friends, family and organizations have also held and sponsored fundraisers to assist with expenses.

“You know it happens, but you never think in a million years it's going to happen to you or to your child. In the presence of our daughter, we remained hopeful and supportive. As the end of her battle nears, and funeral arrangements are in progress, it hits you like a ton of bricks, 'my daughter is going to die.' It no longer matters where you are when it hits you. You can't hold the enormous sadness and grief in anymore. I was once asked, 'do you think it would be easier if she were gone in an instant without warning (like in a car accident)?'  Having spent the last 20 months watching a vibrant young lady with such a zest for life, unbelievable potential and endless possibilities of a very successful future rapidly deteriorate physically, mentally and emotionally, and to grieve for her loss and yours while she is still living, I, speaking only for myself, would prefer gone in an instant. If you have regrets of things left unsaid, it is my belief, even after they're gone, they are with you in spirit and can hear you. Tell them.”