My beautiful, vivacious, and amazing daughter Claire is 8 years old. She loves unicorns, Santa, and squishees, and is the self-proclaimed (and to date, unchallenged) Slime Master.
On 11/23/18, Claire was diagnosed with an extremely rare brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is a horrific disease with no cure, and because of the location in her brain, the option of a surgery is taken from us. Most distressing is that the average life expectancy, with treatment, is 12-24 months. Treatment includes intense medical intervention, including radiation and chemotherapy. We know that she is not defined by her diagnosis or prognosis; she is exceptional and one-of-a-kind.... However, my daughter has challenges ahead of her that no person (let alone, a child) should have to battle. As her father, I want Claire to know she is not alone in her journey.
For that, I truly need your help.
We are opting for a Clinical trial at the closest tumor institute to our state, Seattle Children's hospital. This clinical trial will hopefully give Claire more time with her friends and family and a better quality of life during that time. The trial is encouraged by her medical team in Boise, where we live, as well as Seattle, where she was diagnosed during an emergency visit while on vacation.
Just the initial trip will require us to be in Seattle for a month in February, which, unfortunately, also means her birthday will be out of state. We will need to travel to and from Seattle many times for her continuing treatment, incurring financial costs that are beyond our means.
To accommodate the travel and medical treatments, I need to take off quite a bit of time from work, as well as make our home more accessible. Claire is partially in a wheelchair at this time, with the expectation that this need will increase over time. Our goal is also to make each and every day a day that Claire smiles and can suspend her mind in a moment of happiness. It's beautiful to see the Claire I know and love when she is enthralled in something magical or creative (most often, making gifts or writing notes to give to others).
I come to you humbly as a father, an Army veteran, and a civil servant as a paramedic. I ask for your support in any way that you can. We are grateful to any and all who will make these limited days last as long as possible, and allow us to be by Claire's side as she braves what's ahead.