Submitted by Rhema's mother, Kirsten
January 23, 2009. This is the day my youngest daughter was diagnosed with cancer. Cancer was a tumultuous journey and throughout it we decided, above all, to live. And live we did. My daughter, Rhema, had just turned 12 when she was first diagnosed with desmoplastic small round cell tumors, an aggressive childhood cancer with an abysmal outlook. But with the support and optimism of her oncologist and nursing staff we began her treatments in earnest. Rhema’s cancer responded so well--there was great hope! Finally, after 11 long months of treatments Rhema was declared “N.E.D.” the magical words we had longed to hear for so long: no evidence of disease. With hope that she would beat the long odds, we set off for her Make-A-Wish trip to Disney World in January and shortly after I went back to work. It was as exciting as it was scary to begin piecing our life back together again.
This road wasn’t without its bumps. Rhema’s after-effects were significant. She could barely walk, her pain was rampant, she needed frequent blood transfusions, and anxiety was an issue for every one of us. Returning to school was not the dream come true with all of these obstacles. It was rough. But there was hope! Then there was pain. And more pain. Increasing at a rate that could only leave us scared. At the end of April Rhema’s pain was unmanageable and she was hospitalized again. She feared that her cancer was back so we asked for an early scan. It wasn’t that early; she was due in a week. Our hearts sank as the scan came back showing new tumor growth, just 3 months after that NED determination. It was a bitter, bitter day. As the realization descended upon us, that the cancer had never truly left her body, we had to adjust to new realities. In looking back over that time, it seems we tried every 2nd line treatment to ever be available; to no avail. It also seems that each new treatment only served to beat up her already battered body more and more.
As a parent you walk a fine line with your child, yearning to protect with the equal need to make them happy. And as a parent of a child with cancer that is “non-responsive” to first-line or standard treatments, you struggle stretches further in deciding which path to take: attempt treatments for cure, batter an already beaten body, or preserve quality of life. There were several times that I needed to decide: Is her pain bad enough to go in to the emergency room or can I handle it at home? If we go to the ER will they keep her for admission? How much stuff do I pack? How much do I arrange for care of my other child(ren) at home? Food? Gas? Transportation? How can I balance it all? These days, nights, fears, uncertainties, and pains take a toll on the child, the caregivers, and the siblings. The pressure was overwhelming and the process was exhausting.
This is where Ladybug House is needed. Families like mine experience desperation for a place between the hospital and home, one where children can find comfort from pain and families can find rest and respite. Where siblings are welcome, families are cared for, and decisions on how we will split up do not have to be made. A comforting home-like atmosphere where a child can spend quality time with their family. Where a parent knows their child is surrounded by capable caregivers and can therefore tend to other familial needs without the worries of missing doctor’s rounds or leaving the child in trauma-triggering surroundings.
In looking back over our time during Rhema’s last year of life, I believe a freestanding hospice home would have been such a wonderful blessing. During Rhema’s last 2 weeks, when we knew she was dying her one wish was to return home to die. My regret is not being able to accommodate that wish for her. I would have loved to be able to have her in a more home-like atmosphere to ease her passing. Ladybug House could have done that for her. It could have handled her advanced pain needs and been that wonderful, peaceful place of comfort, away from the sanitized hospital experience. It could have been a place where we wouldn’t have to keep our grief hidden from the other children and families dealing with their own cancer struggles. Away from the little children with their own fears about their fate and the possibility of death. Away from those still fighting to live, so she could die in peace.
Won’t you please join me today in helping to create a space where children like my daughter can find the comfort and privacy to they need?
In Loving Memory of Rhema Butler | November 4, 1996 - June 16, 2011