LETTER TO THE EDITOR | We can have hope in the fight against cancer

Published 8:33 am Wednesday, July 15, 2009

To the editor:

I came on board late as advocacy chair to the South Whidbey Relay for Life this year and was truly astounded that people stayed during the “rain out” to listen to what I had to say at the Luminaria event.

This community has been astounding during my family’s ordeal and continues to inspire.

I urge folks to take part in what the American Cancer Society Action Network (ACS-CAN) is doing toward healthcare reform (http://www.acscan.org/). I look forward to a hopefully good weather 2010 event with lots more activity including a plan for a “Survivor Stories” project.

Greater progress is being made on the national scene to call attention to pediatric cancers in 2009. When the average treatment for a child is 2-3 years at a minimum cost of $2.5 million, the time for better treatments is now.

I would like to call attention to the announcement from Congressman Joe Sestak’s Web page June 23, 2009, to start a Pediatric Cancer Caucus:

“Tragically, cancer is the leading cause of death by disease in children and, although long-term survival rates are fairly high, three out of five children suffer from long tem side affects,” said the congressman.

As the parent of a child diagnosed with cancer, the congressman spoke about the heart-wrenching, emotional experiences that every one of the more than 14,000 families with a child with cancer endures.

He also noted that each day, 46 children — more than two classrooms of kids — will be diagnosed with cancer. His daughter’s experience and his concern about healthcare in general were, in fact, the main catalysts for his decision to run for Congress.

“I firmly believe that it is only through the collaboration of the government, private organizations like CureSearch, doctors, and the families affected by this devastating illness that we can come closer to finding a cure,” said the congressman. “The establishment of the House Pediatric Cancer Caucus is a significant step forward that will give voices to thousands of sick children and represent the struggles of every family battling the disease.”

The following is my Relay for Life speech, June 19, 2009:

Thank each of you for being here. I was asked to speak a bit from a caregiver perspective, but I will start with some background. Many of you here know my family’s story.

The day after Thanksgiving 2004, I rushed my 3-year-old daughter to Whidbey General because she was struggling to breathe. This was her third visit to the ER within the month and she was believed to have asthma. This time when a chest X-ray was taken, I was told, “You’re going to Children’s Hospital.”

When we arrived at midnight in the Children’s ER in Seattle, the clerk asked “Did you fly?” I had driven, but I think any parent would understand how I got there so fast. I had no way of knowing we would be living in Seattle for the next nine months.

For our first week in the hospital, my daughter struggled to breathe while doctors debated about the type of pneumonia they believed she had. It was not until they drained a liter of fluid from her lungs that they saw a huge tumor surrounding her heart. She was diagnosed with non-Hodgkin lymphoma, and we were moved to the cancer floor of the hospital.

Carli spent her fourth and sixth birthdays and Christmases in the hospital and endured two years of chemotherapy and complications.

Now 2-1/2 years after treatment, 8-year-old Carli is thriving and moving with joy and hope into her future.

I, however, am recovering emotionally and socially with some symptoms of post-traumatic stress. I have been affected to the core of my being by my cancer caregiving experience. One way I look at it is the time I spent cancer caregiving was almost as long as my college degree.

How has cancer caregiving changed my life? At first my own health deteriorated (high blood pressure, weight gain, fractured teeth from tension in my sleep, lack of self care and loss of health insurance), but as time has gone on some of these things are shifting in the right direction.

Another way my life has changed is that I have become listed on the bone marrow donor registry and donate blood whenever possible.

Then there is advocacy. I currently volunteer for three cancer organizations. Like many survivors, the only thing I find I can do with my experience that eases my psychic pain is advocating for those on a similar or rougher road.

I speak for those families who cannot act because their grief is too great. I raise awareness about those families who I know are setting foot on the strange planet of a children’s hospital oncology floor at this moment around the country, just as I did for the first time 4-1/2 years ago. And I support parents facing their child’s life-threatening illnesses and being forced to make “non-choices” to administer what I like to call HazMat treatments in order to save their child.

A nurse practitioner can tell a parent that what they are going through with their child on high-dose steroids and neuropathic pain from chemo is “normal.” A grieving family member can applaud your efforts to care for their grandchild or niece.

But being in the presence of another parent who knows exactly what it feels like to not sleep longer than an hour at a time for 35 days to deal with their child’s ravenous steroid hunger, who knows what it is like to spend four hours a day trying to get their child to swallow medicine, who knows what it is like to not see a smile from their 4-year-old for an entire month – that is someone who can really reassure you.

Any parent has occasional nostalgia for their child’s early years, and for me that nostalgia is accompanied by a profound sense of loss of innocence, my own included. I wish I never knew about the world of childhood cancer.

But now that I do, my only choice is to act. Speaking out to Congress, signing petitions, letters for better treatments, more research monies, these are my gifts. Gifts for Katie, age 11, Kaitlin, age 7, Ronni, age 9, and Joe, age 20, who shared meals, fears, laughs and time with me and my daughter on her journey. Gifts for their parents who will never be able to give them a hug again. I light luminarias in their honor and thank them for helping me continue to be a voice for a better day.

I am grateful to Relay for Life for being one place I can come that holds my cancer experience and lifts it up in shared hope.

Erin Waterman

Langley