On July 4th 2007 my husband, Eric, was diagnosed with a brainstem tumor.
With stroke like symptoms Eric drove himself to the ER and was told he had probably suffered a mild stroke. After 3 days of tests the doctors discovered a large tumor in his brainstem, described to us as the size of your thumbnail in a passage about the size of your thumb.
Given the mandate from his doctors to “Go live your life!” with a follow up appointment in eight days, we began discussing difficult life issues. With tears in his eyes Eric said to me “I don’t want to be a burden to you or our family”. I reassured him he wouldn’t be any more of a burden than he already was - which did make him laugh. But unlike many families who face this diagnosis, we had first hand knowledge of how devastating brain tumors are Eric’s father had died of a Glioblastoma Multiforme Brain Tumor in October of 2006. While we trudged forward making decisions about the future we were frustrated by what we knew to be limited treatment options. In fact much of the treatment offered today has not changed in 20 years!
We learned a lot about brainstem tumors which account for 1% of adult brain tumors and approximately 10% of pediatric brain tumors, I was shocked to learn brain cancer is the number one solid tumor childhood cancer killer. While researching Eric’s diagnosis I came across an article referring to Optical Nerve Glioma Tumors, which often present in nonhereditary esotropia – a pediatric eye condition. The week I discovered this research our daughter Chloe was schedule for an MRI to see if her esotropia was related to a neurological condition. For five days I lived in private terror of the potential loss of not just my husband but my daughter also. This was the first of many times I thought of the brave families who are caring for their sick children.
Fortunately, Chloe’s MRI was perfectly normal and we proceeded with a muscular surgery to correct her esotropia. Sometimes I make sense of losing Eric by thinking we lost him to save her, its not very rational, but it brings me peace.
Over the months that Eric lost his ability to move and his vision deteriorated his cognitive mind was fully functioning. His sense of humor and courage to talk with me about death, dying, our future, his hopes and expectations for me and the girls was very reassuring and comforting. His strength made his dying seem normal. We were very fortunate to have the support of his employer who continued to pay his salary and medical insurance despite his inability to work. I was able to take a leave of absence from my work and we were fortunate to have Hospice, friends and family support to keep Eric at home as long as he wanted and continue to take care of our 6 year old and 2 year old.
Eric decided to stop taking the steroids which were keeping the swelling of the tumor at bay and him alive. He did not want to die at home so Hospice moved him to their facility. As the medics carried him out of our home I had them stop in our living room so he could have a glimpse of the HDTV he had painstakingly researched and bought for our family. On the way out our back door he was able to see the car he had helped me buy, so I would know how to do it on my own in the future. Things he hadn’t been able to see while confined to his bed for the last weeks he was home.
On Thursday, March 20th 2008 Eric died at 7:30 in the morning. Having been this close to death I am sure of a higher power that brings peace and comfort to anyone who seeks it at death’s door. To those who are not there and continue to fight this brutal cancer, especially the littlest of us all, there are organizations like the Children’s Brain Tumor Foundation that provide financial support, moral support and fund research.
I decided to have Eric’s memorial service a week from the Saturday after his death. Upon concluding my meeting at the funeral home my Pastor confirmed the date as March 29th, which I realized was my birthday. My pastor seemed to think that there was nothing wrong with celebrating Eric’s life on the same day as my birth, so we did just that. It was a really comforting day. The girls sometimes ask me why we had cake at daddy’s memorial.
As the year anniversary of Eric’s death approached I was reminded by what a counselor had suggested, “I believe in grieving productively.” Not knowing how to fulfill this, I didn’t do it.
Much to my surprise I have recently discovered a way I can grieve productively. It is to ask that over the next nine days you help me raise $1,000 for the Children’s Brain Tumor Foundation. Your personal donation of any amount and those you can solicit from others will make a very real difference in someone’s life, and it will especially make a difference to me and my two girls.
Thank you for visiting my Personal Fundraising Page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to our fundraising efforts. Many thanks for your support.