I am sending this letter to our congressional representative and senators today.
Dear Representative Stark, Senator Boxer and Senator Feinstein,
In December, 2010, our daughter Scarlett Grace was diagnosed with an aggressive malignant congenital brain tumor. The tumor was the size of my fist and had grown in place of her left hemisphere; half her brain was cancer. We were given very little hope of her survival, and were sent home for her first Christmas waiting for hospice. The next week, a second surgical opinion gave us hope and we began the long journey through more than 24 hours of surgery, battling seizures, hydrocephalus, infections, further surgery, frequent MRIs and weekly blood draws. Scarlett is currently in her 9th month of chemotherapy, with at least 4 months ahead. She will need reconstructive surgery. She has a feeding tube to give nutrition despite daily nausea. She attends at least five appointments each week, including physical and occupational therapy. She wears hearing aids to cope with chemotherapy-caused hearing loss. Last month, Scarlett turned one year old. She has yet to roll over, crawl, or say any words, but she is growing and thriving every day. She has piercing blue eyes, eight teeth, and a beautiful smile that lights up any room.
Since her birth, my husband and I have struggled to create a financially stable situation for our family. We both graduated from UC Davis with Bachelor’s degrees and hefty student loans. He has struggled to find work for nearly two years and currently works at a coffee shop, where we maintain some health insurance benefits. I have a teaching credential and Master’s Degree in Education, and have been determined to teach despite being laid off twice in 3 years. After months of disability after her birth, I relinquished my job to continue to take Scarlett to appointments and therapy. As employment shifted, so did insurance, and we were forced to apply for Medi-Cal to cover her ever-growing costs. This has been a relief for medical expenses, but does not cover the costs associated with feeding her, driving to and from all appointments (well over 100 miles per week), clothing, and diapers. While we understand and accept that these are our responsibility, we are simply unable to afford it all on my husband’s small salary. While we both continue to look for work that will allow us to also care for our daughter, we have been forced to seek additional financial support.
We are now receiving WIC and have applied for Food Stamps, but have been repeatedly denied for having too high an income. We have deferred all student loans, for which we receive no consideration when applying for social services. We have also applied for Supplemental Security Income (SSI) for Scarlett.
When I originally applied for SSI in June, our total accumulated assets were just over the cut-off of $5000. In July, she was denied again, this time with less than $100 over the cut-off (which includes our car and savings). It took more than 4 months to hear that she was denied, when I made repeated phone calls to both the national and local Social Security office lines, and was finally told we had been denied months ago. When I broke down in tears on the phone in frustration, the worker told me that had to make sure our assets were below the limit on the first of the month. She said any other day didn’t matter, just make sure we have less in the bank on the first.
So finally, on November 1, I applied yet again for SSI for Scarlett. Our balance is well below the required level. However, I am now being told that there is a 6-8 month wait for SSI to be processed, at which time we may still be denied.
We are honest, hard-working, tax-paying citizens. We have college educations and have worked steadily since we were teenagers. Having our child diagnosed with brain cancer was traumatizing, but we are finding that the aftermath of her diagnosis and ongoing treatment is even more difficult. On top of the daily worry that her cancer will return, we are worried about how we will pay our most basic bills. We will soon be forced to move out of our home and begin living with family. We have repeatedly tried to get access to the basic public services for which we, our families and friends have paid into for our entire adult working lives, and yet we are consistently hassled, insulted, and argued with by workers at these services. I am enraged at the roadblocks that have been thrust upon us, and even more so at the thought of how difficult this would be if we were NOT educated, English-speaking and supported by family.
Childhood cancer affects more than 12,000 US children each year. 12,000 families suffer through the heart-breaking lifestyle changes that inevitably accompany this diagnosis. The treatments required have life-long effects that do not end with chemo. No family should be forced to wait more than 6 months for help. No family should have to repeatedly be asked the invasive and insensitive questions that I have been asked. Having a child with cancer is not easy, nor is it something I have any control over. I can, however, control how I show my daughter that I fought for her best interests, and how I maintained my integrity while doing so.
I implore you to help us and families like us to efficiently secure the services to which we are entitled, and on which we depend for basic survival. I have included your claim assistance form in case there is anything you might be able to do to help us with Scarlett’s case.
Thank you for the work you do and for your time,