Childhood cancer survivor Julia Jones returns for another guest post on pediatric cancer policy issues. Today, she takes a look at the Childhood Cancer Survivors' Quality of Life Act (H.R.2058/S.1247) from the perspective of a survivor. If you missed Julia's first post, you can read it here.
Surviving cancer is like life after war. In the heat of battle all that you think about is survival, so you do everything you can and throw yourself into the effort. You use force, bomb buildings, and destroy anything the enemy might use. There is little thought of the consequences: you just have to win. Then the dust settles and you see the cost of winning as your city lies in ruin.
In battling cancer, we engage in treatments that are harmful and toxic but ultimately lifesaving. Only after the war do we realize the high toll it took on our bodies.
The good news is that as survival rates improve and 83.1% of children become long term survivors, we are starting to learn about what life is like for these kids as they become adults.
When people find out that I had cancer, there is sometimes a lack of understanding about what that means. Because I was only 6 when I battled cancer and I look healthy now, the assumption is that cancer was behind me once I survived it. But the reality is a different story. After treatment, I had to work very hard to catch up in school and be able to hold a pencil again after suffering damage to my nerve endings. I still spent a lot of time in the doctor's office after being declared cancer-free. Even today, cancer follows me. I'm missing a kidney and I have heart problems as a result of a chemotherapy medication. And I consider myself lucky compared to many others.
What we've learned over the years is that in order for children to thrive after cancer, we need to provide for their health in three main categories:
These categories cover struggles that impact too many childhood cancer survivors, including infertility, financial problems, depression, anxiety, cognitive delays, secondary cancers, and chronic health conditions.
This is where the Childhood Cancer Survivors' Quality of Life Act comes in. The goal of this legislation is to ensure that every child surviving cancer has access to high-quality, long term follow-up care to safeguard their health and make the transition to adult care smoother.
The Childhood Cancer Survivors' Quality of Life Act would:
- Initiate trial programs to learn about effective ways to care for survivors;
- Put emphasis on psychosocial care;
- Make it easier for survivors to access long term care; and
- Provide funding for long term follow-up programs.
What all this boils down to is making sure that survivors are taken care of and equipped with the tools they need to live healthy lives after cancer. To me, passage of the Childhood Cancer Survivors' Quality of Life Act would be an affirmation that society places value on the lives we save from cancer and the years ahead of these children by continuing to invest in their health.
My generation of survivors had to find out what life after cancer looks like on our own. The reality is that cancer is not the end. Until we find treatments that will not harm the good cells while killing the bad we need to provide for the effects that treatment causes.
Even now it is unclear what the future holds for me as a young survivor, but I am hopeful that the care I receive and the information that results from it will both improve my own quality of life and enable researchers to better chart the course for the next generation of survivors.
Editor's Note: You can take action on this legislation! Click here to tell your Representative that childhood cancer survivors need advances in treatment, care and research.
About Julia: Julia is in graduate school working toward her Masters Degree in Counseling. As a childhood cancer survivor, she hopes to one day work with children with cancer and their families, helping them through the emotional challenges during and after cancer. She is very active in the childhood cancer community, especially as a volunteer for Special Love, which provides camps for kids with cancer and support for families. Julia enjoys expressing herself creatively through art, music, and dance.