Local Voices: Moms (and Dads) on a Mission

I am sitting on a plane heading home from Washington, D.C., and reflecting on the past few days.

For the past five years, just as the “normalcy” of life sets in and I feel like our family is just like every other, May hits, and the reality of how our family is unique and different slams into me like a brick.

May 2001 is the month my second daughter Josie was born the day before Mother’s Day, and I was feeling grateful and blessed to have such a wonderful life. May, 2007, my first-born daughter, Savannah, read me a Mother’s Day poem she had written as a gift to me, a week before she died. The memories of the years our family battled her disease and the years since she has left, are so smothering sometimes, that it is hard to breathe, and even harder to get out of bed. But, I do, for the sake of my three other amazing children and because I am on a mission. 

After Savannah died, my greatest concern was for her little sister and brother. As a mother, my only wish was to raise happy and healthy children, protecting them from harm and providing the love and support that would get them through the bumps in their lives. I had never imagined that I would not only not be able to protect my child from cancer, but that I would now have to get my 4 and 6-year old through the greatest mountain they may ever face in their entire lives.

Of all the battles I had imagined, this was not one of them. We enrolled Josie and Sawyer in a children’s grief group, where they could feel “normal,” and engage with other kids who have lost a sibling. At the same time, my husband and I met separately with the parents, where we could feel “normal,” and discuss our feelings with other grieving parents. While our kids may have benefited from their time in the group, it was a blessing for me. Through these meetings, I met, and deeply connected, with two other grieving moms, Gina and Sandy. These are women that I would want for friends under “normal” circumstances, but not living in the same towns, may have never crossed paths with. Through our angels in Heaven we were brought together and all of us are "moms on a mission."

Gina lost her 9-year-old son the day before his 10th birthday, to a rare genetic disease called ALD. The only hope for survival was through bone marrow transplants and through her ordeal, she learned how desperately in need of donors the Bone Marrow Registry is. She decided to do something about it. She started the “Be a Hero, Become a Donor,” non-profit and educates people on the ways that they can donate blood, marrow and organs to save the lives of others.

Sandy lost her 14-year-old son to ALL, a rare leukemia, or blood cancer, six months after Savannah died, right after Christmas. She began the “Gold Rush Cure Foundation,” to raise money for pediatric cancer research. In addition, she has travelled to Washington, along with several Childhood Cancer groups, to lobby our senators and representatives to pass legislation that will further the fight against this disease that 46 new children are diagnosed with every day.  Although the mission of our foundation, Savannah’s Organic Ranch, is to educate children on living healthier, organic lives and hopefully preventing childhood cancer, until this disease is eradicated, part of our mission is to assist children that are battling it. Always anxious to do more, I have mentioned to Sandy over the past few years that I would like to accompany her on one of these trips to lend our story and Savannah’s voice to the fight.

So, this past week, on what was Sandy’s 11th trip to D.C., I went along. We were going as part of the Alliance for Childhood Cancer, a group of national non-profit organizations that, among other things, identifies and advocates for legislation benefiting childhood cancer issues.  As I sit and reflect on my first (but DEFINITELY not my last) trip, several words come to mind. While inspiring and empowering are certainly two, frustration and disenchantment are two others. 

I was completely inspired by the many people there to fight the fight, coming from all parts of the country, all walks of life and all different stories. In the small group of advocates that represented California, in addition to those that Sandy has come to know personally, there were moms and dads that had lost a child, moms of survivors and even a 16-year old medullablastoma (brain cancer) survivor, named, interestingly enough, Sawyer—the same name as my son (a sign from above?).

One of the attendees that actually inspired me the most, has not lost a child, and isn’t even a parent. He is a 27-year old single guy named Jeremy that felt compelled several years ago to give back to the community and chose to volunteer at a children’s hospital on the oncology floor. He was so touched by these incredible children and the battles they fight, that he wanted to do more. So, he spends his own money for travel and lodging, and this was now his third trip to D.C. to stand up for these kids. On a side note, (and I believe another sign that we are doing the right thing) I happened to hear him mention that he started volunteering at Denver Children’s Hospital when he lived there, about a year ago. This is the hospital where my children’s 8-year-old cousin Delaney, had undergone treatment for Stage IV Neuroblastoma for a year. So, on a whim (or a nudge from Savannah in Heaven), I asked Jeremy if by any chance, he had met a little girl named Delaney while he was there. Of course they both remembered each other! Call it coincidence—I call it God winking!

Our first day was a training and planning sessions, where we learned what we would be “asking” of our representatives and received our scheduled meetings. It was an empowering day, knowing that I was part of a movement to reach the top levels of decision makers in our country, on behalf of not only our own children, but everyone else’s as well. While nothing we do will bring our children back, we can try to do everything in our power to help those children who are fighting cancer now, and to do even more to try and prevent another family from losing a child. I was very aware that I was in that very room at that very moment, because my child had died from this horrendous disease, and that in addition to mine, their were many angels that were proud of their parents and all the others standing up for them. I was ready to hit the Hill!

As Tuesday began and we planned our day, I learned that the Congressional and Senate offices span several buildings and blocks, so the first thing I did was throw my heels in my bag and my flats on my feet! While we were meeting with both Senator Boxer and Senator Feinstein’s offices, and then Congressman John Campbell, and Congresswoman Mary Bono Mack, we were not actually going to meet with any of the representatives themselves, only their Health Aides or Health Directors.  The reason these meetings are always scheduled on Tuesdays is because Tuesday is voting day on the Capitol, and we would have the greatest chance of the representatives being present, but apparently, they are very busy people, and we are not the only game in town!

Both the Health Aides and the Health Directors are very sharp and knowledgeable, and because Sandy had met with most of them before, that made it a lot less stressful. We had one other meeting scheduled, which was interestingly enough with Congressman Roy Bachus, from Alabama. Normally, we would only meet with California representatives (in fact, they usually only want to see you if you are an actual constituent in their district), but Sandy had had a chance meeting with Rep. Bachus in the hallway, and when he learned why she was in D.C., he told her to visit with his office next time she was in town and he would love to support the cause. Among the many things I learned that day, I learned that this is not a typical situation.

We were in Washington D.C. to ask our elected officials, those that we hoped and believed would have our families best interests at heart, to support us in the following areas, none of which have any fiscal impact on our government:

1. Join the Childhood Cancer Caucus
2. Support the Childhood Cancer Survivorship Act
3. Support the Creating Hope Act (this act gives incentives to pharmaceutical companies to creating childhood cancer drugs, as their has only been one drug approved by the FDA for children in the past 23 years)

I don’t want to make this about politics, but rather about my learning experience, so I will sum up my experience on Tuesday as frustrating, but somewhat hopeful. As a mother, not just a mother who lost a child to cancer, nothing is more important to me than my children and I naively assumed that our representatives’ support for these issues would be a slam-dunk. Um, let’s just say I was wrong.

In the end, there are people like Bachus, who are people first and politicians second, and there are others, sadly some elected to represent us locally, who are politicians first and foremost. There is work to be done and I now know why Sandy and the others have been there at least 11 times. The greatest thing that I learned during this trip, however, was that every mother and father, every family, is unique and different in their own way. There is no “normal.” We are all on our own journeys, with our own obstacles and challenges. I was so inspired as I looked around that room the first day because I realized we were all Moms (and Dads) on a mission, and that is why I plan to be a permanent fixture on future trips to fight for our children. And hey, if anyone wants to join us next time…the more the merrier!

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For more information on these issues, visit allianceforchildhoodcancer.org.