10463871_10203235803389553_4760016398863642432_n

This week, we had the honor of interviewing a woman who really needs no introduction. If you attended Dance Marathon 20, you would remember her and her family as the people that gave you the motivation to never stop fighting even after you danced for 24 hours! If you are new to Dance Marathon, her family and their amazing outlook will give you the drive you need to fundraise all year and the power to dance at Dance Marathon 21. Pamela Codd and her family have been through many obstacles but their determination to make a difference has remained unchanged. Recently, she took her second trip to Washington D.C. to fight for more funding towards pediatric cancer research. Take a look at her amazing story.

 

Q: What is Dashiell’s story?

A: At 4yrs old Dashiell was diagnosed with a rare cancerous liver tumor called Hepatoblastoma. After chemo and surgery at University of Iowa Children’s Hospital, he fell into a high-risk category for recurrence, so we took him to liver tumor specialists at Cincinnati Children’s Hospital. He underwent experimental chemo for eight weeks there, but two new tumors were found and he required a liver transplant. Three months later, during a check-up, it was discovered the cancer had metastasized to his right lung and it was surgically removed. The doctors felt he was at even greater risk for spreading and recurrence.

The next month a CT scan revealed nodules in both lungs. After those were removed, and compared to the tissue of the previous tumors, it was determined the cancer was actually the more aggressive and extremely rare Transitional Liver Cell Tumor, masking itself as Hepatoblastoma. (At our request, upon reviewing tissue samples, pathology slides and case history, this was confirmed by Dr. Arthur Zimmerman, MD, Institute of Pathology of the University, Berne, Switzerland, an international authority on pediatric liver tumors and one of the only researchers to investigate TLCT.) Those tumors were removed two days after Christmas ’12. Post-surgery Dashiell underwent 10 rounds of radiation in Cincinnati and experimental chemo at UI Children’s in conjunction with Cincinnati. Treatment options were halted after new growth was detected and palliative care/comfort was pursued.

With all of his treatments/surgeries, except for hair loss, Dashiell did not endure the expected routine side-effects (such as mouth sores, nausea, fatigue, infection, etc) and his overall pain was quite minimal. Sadly this was actually one indicator to me all along that nothing was working. And although we never gave up, despite all our efforts, he succumbed to this disease on 6/17/13 at 5 1/2 years old.

We take comfort in knowing that Dashiell had a blessed life, believing in Santa Claus, eating treats, playing with his brothers, cuddling his Mama and Daddy and hugging his doggie. He was as sweet and blissful as any child could possibly be. He never knew one day of true sorrow. He never knew neglect or abuse of any kind. He is very deeply loved and all of his days were full of pure happiness.10414883_10203235803709561_4899839185271431909_n

 

Q: What made you decide to go to DC?

A: We made a conscientious decision to donate Dashiell’s post-mortem tumors to scientific research through UI Children’s, Cincinnati and the Children’s Oncology Group. Currently he is one of three worldwide confirmed cases of this type of cancer with databanked bio-specimens. In meeting with his team in Cincinnati last October, they shared that his samples are already being used in their research.

But, in conversation with Dr. Sue O’Dorisio at UI Children’s, I first heard in detail about the battle being waged against funding to medical research because of the US government’s sequestration cuts to NIH/NCI. According to a speech given by Dr. Margaret Foti of The American Association for Cancer Research at the UIHC Holden Comprehensive Cancer Center’s annual retreat, the current budget cuts will reflect tens of billions of dollars lost to medical research over the next decade. Yet, in the World Health Organization’s most recent annual report they call the expected increase in cancer cases over the next 15yrs+ a global disaster.

While survival rates are improving, 73% of pediatric cancer survivors develop at least one chronic health condition because treatments are so harsh, including late effects like secondary cancers, heart and lung damage, infertility, and hepatitis. Of NCI’s budget, only 4% goes to pediatric cancer research even though it is the number one cause of death by disease in children in the United States with 1 in 300 children diagnosed by the age of twenty. And in the last 20 years, the Food and Drug Administration has approved only two new pediatric cancer drugs.

Across the country, researchers, doctors and scientists are being laid off to account for future lack of funding. During the government furlough last fall pediatric cancer patients were having their potentially life-saving clinical trial treatments postponed. And, as it relates to Iowans, with a new children’s hospital being built, recruiting additional leading specialists will be impaired if there’s no potential for properly funded projects. This also has an immediate effect on the community’s revenue and economic growth.

All of this should be a serious concern, in my opinion, to the people of Iowa and our elected officials. My intention is to advocate for better treatment options, advancements in higher cure rates and improved medical research funding for childhood cancer in memory of Dashiell, for the kids still battling and those not yet diagnosed. I feel very strongly that giving a (very loud) voice to them is the least I can do, especially considering children don’t have the option to have their voices heard through the voting process.

 

Q: Who did you meet with during your visit?

A: This was my second visit to Washington. During my first, I went on my own accord, representing Dashiell’s story, to begin a dialogue about the long-term effects of budget cuts. I had meetings with Congressman Dave Loebsack, Senator Tom Harkin and the Deputy Chief of Staff for Congressman Bruce Braley (who is running for the Senate seat to replace Harkin post-retirement this year). I wanted to discuss, from their perspective, how my energy would best be spent. I had already consulted with others in the childhood cancer community including doctors, nurses, Child Life Specialists, Social Workers, hospital administration, advocates, charitable organizations and patients/families.

During this second visit, I participated in the Alliance for Childhood Cancer organization’s “Childhood Cancer Action Days” event. It took place over two days. The first was advocacy training and networking with individuals and organizations from around the country. It was an opportunity to learn about pressing issues and share concerns. The second day was advocating on Capitol Hill. I had meetings with several Iowa representatives or their staff, including Loebsack and Harkin again, as well as Senator Chuck Grassley. I also cold-called the other Iowa officials by dropping into their offices to distribute an informational packet, which included a brief overview of Dashiell’s story, a request for their participation in increased NIH/NCI funding and their support of the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act. https://beta.congress.gov/bill/113th-congress/house-bill/2607

 

Q: What did you learn from your trip?

A: Medical research funding is a hot topic on Capitol Hill and now is the time to strike. Despite political differences, saving the lives of children is a bipartisan issue. Period. If you are a patient, caregiver, medical staff/personnel, advocate, charitable organization rep or donor you need to be rallying and showing a united front DEMANDING our government make this a priority in their issues and agendas.

 

Q: What can others do to help fulfill your vision?

A: SPEAK OUT! You don’t have to jump in your car and drive to DC to have a loud and clear voice. You can email, call, write letters, tweet, post on their Facebook pages. Hit them hard and frequently. I cannot stress this enough. Step on toes and knock down doors (figuratively, of course)! Our elected officials want to hear from their constituents. If you reach out, they will respond. But I am concerned their physical distance prohibits them from having a clear vision and pulse on the immediate and long-term pediatric health issues in this state and around the country. Iowans are incredibly kind, smart and progressive. If we want to see improvements/changes (regarding anything: health care, education, environmental, etc) it is essential to be consistently contacting them and keeping the bug in their ear. If enough people speak out, they will take notice. Harkin in particular has an impressive record of supporting NHI/NCI. I wouldn’t be surprised if he tries to find a way to incorporate increased funding into his agenda before stepping down.

I will continue to lobby. I won’t let Dashiell’s experience be in vain. If anything, considering the doctors believe his type of cancer goes misdiagnosed because it fakes being a curable form of cancer, he is the perfect example of the need for increased awareness and research.

10500480_10203235803629559_5812927616213614393_n

Q: What is your favorite part of the University of Iowa Dance Marathon?

A: Holy cow, where do I start?! Well, when I think about the dancers my mind fills with the joyful indomitable spirit they exude EVERY TIME I SEE THEM — even if it’s in the grocery store (since we live in Iowa City I see dancers all over town). You always greet me with kindness and smiles.

So, as much as this journey to DC was inspired by Dashiell’s experience, the dancers inspire my continuing efforts. These visits are emotionally, physically and economically grueling (we pay for it our of our own pockets). But every time I feel myself reduced to tears, wondering what the hell I am doing, I think of all the time and effort you put into fundraising. I think of all the energy you put into entertaining my older boys at family events. (They have truly been touched, comforted and motivated by the life-long friendships they have made through DM.)

And, I think about your future. I think about your children and grandchildren. And I think, if you can do what you do all year long (school and jobs included in the equation), topping if off with dancing for 24hrs, I can do this. I hope in some way it is a (start to) repayment for EVERYTHING you give and do.

 

Written By: Nidhi Patel

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s