September 18, 2010, I was honored to speak at our American Childhood Caner Organization/Inland Northwest’s, Childhood Cancer Vigil. Below is what I shared. This was written as a speech, so it has a different rhythm. Inflection and body language won’t be present. I hope you can still feel what I’ve written. It’s a message to every last one of you.
Welcome. Here’s the facts….. My husband Larry and I have three kids. Curtis who is 11 and AnnMarie who is 8. Gregory is our Cancer Kid. He’s five years old. Gregory was diagnosed with Juvenile Myeolomonocytic Leukemia in February of 2009. There are only about 25-50 cases of JMML diagnosed every year in the US. Gregory’s leukemia cannot be put into remission with standard Chemo. Our only treatment option was a Bone Marrow, or Stem Cell Transplant. He received daily low dose, oral chemo, to keep his disease under control, while we waited for a Donor Match. We left for our five month stay in Seattle in May of 2009. Gregory received his gracious gift of new cells on Thursday, June 11, 2009 at 4:10 in the morning. His donor was a 23 year old female, here in the US. We have yet to get connected with his donor, but are hopeful that we will. His day 26, post-bone marrow transplant, Bone Marrow Aspirate showed that there was no evidence of disease and his marrow was 100% donor cells. This status has remained unchanged. He is currently in ongoing treatment for Graft Versus Host, which is an effect of having someone else’s immune system. He remains immune compromised. This process may continue for several years to come as his new marrow learns to recognize his body and not try to destroy it.
Over the last several weeks I’ve been trying to discover what I wanted to share. Thinking about you, the audience, and what the intention was of tonight’s vigil. Divine inspiration never presented itself, but this is what I came up with.
I stand here, preaching to the choir. The parents, siblings, grandparents, caregivers, and loved ones of our cancer kids. Hopefully there are a few of you out there that came along in solidarity to this group. This odyssey that we are on never ends. It is a life long experience that comes with fear, joy, expectation, hope, loss, life, death, post traumatic stress syndrome, nightmares, exhaustion……… It is a life changing experience. Some good, some horribly wretched. We rally together, reading, writing, texting, facebooking our hearts out in an effort to find community and comfort. That is why I am here, today. Offering my heart. To each one of us who are on this path. We ache for things to be as they were before this beast entered our lives. While being eternally grateful for those that are with us. Holding our hands and our hearts, witnessing, as our new lives are crumbling, unfolding and being reborn.
I have an extreme distaste in my mouth when people use these three words: Lesson, Gift, Reason. Every person is on an upward path of growth. That growth is possible without this experience. There is no Lesson, Gift or Reason, worthy enough of what our families and children are put through. We are put on a fast track of growth. Racing along to keep up with the lightning speed in which things happen. Gasping for air as circumstances change in the blink of an eye. The depth of our knowledge of our child’s disease would keep any Oncologist on their toes. From the moment the words are spoken, “Your child has cancer.” we learn what perspective really is. We have gained a new appreciation of the mundane and rudimentary things in our lives. Moments we never gave a second thought to, are now sacred and crystalline in their value. Some of our friends fade away. People we never truly considered friends, become steady rocks in our lives. Our fellow Childhood Cancer families sometimes mean more to us than our blood relatives.
I would gladly revoke my membership to this club, if I could. Yet, I am constantly humbled and filled with love for the members of this club. We understand each others lingo, quirks, fears and joys. Through CaringBridge, CarePages, Blogs, Facebook, Email, and phone calls, we cradle each other with the gentleness of a shared experience. I look at you and you and you. All of you, with the deepest understanding, the fiercest love and the proudest of honor. We are family. The kind that doesn’t get fractured. We will be life long friends and advocates. My heart bursts with the love of knowing you.
I am a mom, wife, sister, caregiver, com padre, warrior, goddess, advocate, woman. Above all else, I am a Momcologist. Fiercely at your side. Holding your heart, knowing your hold mine.
Gregory and I. May, 2009. A few short weeks before Transplant.