Today my heart hurts. My soul aches. I feel the pain for a family that I only met once but they left a indelible mark on our lives. They’ve had to make the conscious decision to cease cancer treatments for their beloved two year-old Ella. My heart breaks for them, but also for my teenager who has followed this little girl’s fight for eight months since we met her in the hospital.
Almost nine months ago, my daughter Rosie spit up blood in the Wal Mart parking lot. At the time, we thought it was probably gastritis from her migraine medications and we weren’t too worried. However, three weeks later an ear, nose and throat specialist insisted that we were going to be admitted to the hospital to find the answers. It was “scary” she said and since my daughter had fought depression from medication we weren’t leaving her office. We left for the hospital downtown by ambulance, both of us shell-shocked. My teenager crying because once again she was going to miss out on all the weekend holiday parties. It wasn’t fair.
Once admitted, we wound up on the Oncology floor because my teenager wasn’t contagious. There we met a tiny little girl with a big smile that was fighting Medullablastoma that had metastasized to her spinal cord. She’d motor through the hallway with her parents trailing behind so full of joy. My daughter and I would follow and laugh right along. My teen has such a big heart, she offered to read to her. It looked like we’d have a friend for our stay until we suddenly had to switch floors because they discovered that Rosie had Mycoplasma in the fall and they didn’t want to put anyone at risk.
That may have been the end of the story but when you have a child like mine, the stories aren’t short. Since my teen’s chronically ill, she’s interested in everything medical. She’s also very passionate about healthcare and cares deeply for others. So, she’s stayed on top of Ella’s journey on social media and promoted fundraisers on her Facebook. She’s kept me updated on every detail and tells me the tales like it’s one of her best friends. The other night she woke me up to tell me that “Ella can’t speak.” She was devastated.
Yesterday, she was even more saddened to find out that the doctor’s felt that there was nothing else that they could do to save Ella. Her parents, Joe and Sarah, made the difficult decision to cease treatment and will be moving her into hospice care. Within five minutes of reading that, Rosie set up a Go Fund Me account to send Ella to Disney World. We’re hoping that Make A Wish will come through but if not, she wants to help. We’d love it if you would take some of your spare change and help make this magic happen.
I’ve learned a lot about myself the past couple of years as we’ve tried to navigate the world of chronic illness but I’ve never had to be faced with the fear that my child may die. Everything we’ve endured (and continue to endure) is painful, difficult and really sucks but it’s not a terminal diagnosis. My heart is breaking for the Tosch family. I cannot even fathom how they feel right now.
I’ve also learned a lot about Rosie. Most kids with POTS as serious as she wind up in wheelchairs and on oxygen but she doesn’t just fight autonomic dysfunction. She has chronic migraines and wakes with a headache every day. She’s still spitting up blood and we’re trying to figure out if she has a possible genetic disorder. She has a lot to handle while not feeling well every day, yet she attends school with a smile when she can and dances despite the fact that she feels like she’s going to pass out. She’s tough. She’s also incredibly tenderhearted.
Instead of feeling sorry for herself, she’s putting all her energy into helping others. I have a feeling that her fundraising efforts for Ella will not be the one and only time she gives back. In fact, we’re heading to Hematology/Oncology next week for an infusion with a bag full of coloring books and crayons for all the kids. I’m certain that she’ll be a giver for the rest of her life.
As for Ella, her time here on earth is coming to an end. Wouldn’t it be amazing if we could send her to the most magical place on earth? We think so. Please take a moment and donate.