June 6th was a day that divides a life into two halves: “before” and “after”. On Monday evening, our four year old daughter, Éowyn, fell down the stairs while heading to bed. Initially concerned about a concussion, we took her to Children’s Mercy. By Tuesday afternoon, Éowyn had been diagnosed with terminal brain cancer. With treatment, she can live a normal four and five year old life for as much as a year.
This tumor is called Diffuse Intrinsic Pontine Glioma (DIPG). It grows slowly inside the brain stem, and doesn’t make itself known until it is large enough to start pushing on the area of the brain responsible for motor functions. The location of the tumor makes it impossible to reduce with surgery. Scientists have tried for 40 years to find a chemotherapy solution to this type of cancer without success. The only possible treatment option is radiation, which can shrink the tumor for a time, but is not a cure. Clinical trials around the country exist with experimental treatments, but the absolute best a trial has achieved is two years.
Our family is obviously devastated, but we’re moving forward with the plan to make this year the best damn year a little girl could have. As such, our family may step away from activities we’ve been involved with in the past. We’re not finished finalizing our plan, but those that need to know will know soon.
If you see Éowyn, please remember that she is still the same little girl she was before. She can do everything today that she could do Monday, before her tumble down the stairs. We plan to have her go to preschool in the fall, and participate in soccer and gymnastics as long as she’s able to. In fact, she believes that leaving the hospital means she’s back to normal. She does not yet know about the bullet in her brain that will eventually claim her life, and WON’T know until later, when we think she is able to comprehend what is happening to her, or when her symptoms re-emerge after radiation in six to nine months, whichever comes first.
Thank you for your thoughts and prayers. We need them now more than ever.