The Marvelous Mss. Mangual
Hello, friends and family!
Julia and I are officially registered as a team for the Foothills Trails Ultimate Hike on April 25, 2020.
We have pledged raise a combined total of $5,000, less our registration fees. Just the thought of asking for donations from friends and family makes me queasy. Thank you in advance for not making us plead or beg or grovel. Throughout the next three months, Julia and I will join other committed hikers in the Atlanta area to prepare to trek the 28.2 miles of the Foothills Trail.
Understanding that our endeavor relies on physical strength we have yet to gain and funding we have yet to acquire, we choose to make it our mission to succeed in both. We choose to do it, to borrow a phrase from the late President John F. Kennedy, not because it is easy, but because it is hard. Because 43 children are diagnosed with cancer every day in the United States. Because one in eight children with cancer die from the disease. Because only four cancer treatments have been developed specifically for children in the last twenty years. Because 60% of childhood cancer survivors suffer long-term and late effects of treatment, including infertility, heart disease, and secondary cancers. Because cancer is the leading cause of death by disease in children.
As we consider the enormity of the challenge before us over the next three months, we reflect on other far more difficult paths we have traveled to be here. Read on if you want to learn more about Julia's fight with cancer.
Just days before Christmas in 2007, we discovered that Julia had some kind of cancer. She had what appeared to be several large masses in her abdomen. We were terrified. One doesn't consider the complexity of cancer treatment until faced with it. When your child is diagnosed with cancer, the first order of business is to figure out what kind of monster you are dealing with. Until then, you must simultaneously resist the temptation to engage in catastrophic thinking, assure your other children and larger family that everything is under control and prepare yourself for even worse news than "Your child has cancer." In our case, Julia's biopsy results came on Christmas Eve.
"Wilms Tumor," the surgeon informed us flanked by his entourage of residents and fellows. Two of our pediatricians, who had stopped by to see if we needed help wrapping Christmas gifts or preparing dinner, exhaled in relief. "Wilms Tumor."
After Julia's port was installed on December 26 and then reposititioned on December 27, Julia began treatment. For twelve weeks she had weekly chemo-- Vincristine, Actinomycin D, and Doxorubicin (aka the Red Devil). On March 8, she had surgery to remove her right kidney and a portion of her liver that had been punctured by her tumor. The surgeon told me he had to scrape bits of the tumor that had adhered to her diaphragm, and the oncologist reported that tumor in the diseased kidney was necrotic indicating that the weeks of chemotherapy had done their job and anything left would be taken care of by radiation and additional, though less frequent, chemotherapy treatments.
Doctors and nurses prepared us for known side effects from Julia's treatment. Of course, and perhaps least significantly, she lost all of her hair. Twice. We were told that Julia's chemo-weakened immune system would leave her vunerable to infection and that she may develop mouth sores so excruciating that patients often enter the hospital for intravenous pain medication. Neither happened to Julia despite her inability to keep down the nasty oral antibiotics she had to take each month. Thankfully, her oncologist switched her to an IV alternative as well as a stronger preventative nausea medicine. However, once during treatment and once shortly after, she was admitted to the hospital for partial bowel obstructions, likely caused by scarring from surgery and radiation. She suffered painful neuropathy in her limbs, particularly in her legs, that plagued her for years. She tired easily during the first year after treatment. She needed two blood transfusions when her red blood count was too low.
Julia's treatment was a piece of cake, relatively speaking, as the surgeon and our pediatricians knew it would likely be.
Julia's form of Wilms Tumor has a highly successful treatment protocol with a survival rate of 85-92%. Researchers with the Children's Oncology Group have developed clinical trials based on the stage and histology of the cancer in order to cure as many children as possible while limiting potential side effects by decreasing the amount of chemo and/or radiation a child receives when appropriate. In fact, Julia's doctor decided to forgo two of the planned four treatments of the harshest chemotherapy agents. Even so, Julia's treatment protocol is associated with an increase in congestive heart failure, colon cancer, infertitlity, and other side effects that may not surface until she is older. Thankfully, we have access to quality survivor care and can monitor her for early detection.
When Julia was diagnosed in 2007, we had every reason to believe that despite the harsh treatment required, she would survive, and she did. Indeed, 85% of children diagnosed with cancer will survive five years and beyond. In the mid 1970s, the survival rate was around 58%. For some childhood cancers, however, survival rates are significantly lower even with treatment. For some cancers, there are no treatments.
We support CureSearch because it is committed to funding promising research projects and seeing them through from development, clinical trials, and ultimately regulatory approval and because it aims to accelerate the development of pediatric cancer drug by driving collaboration among the main stakeholders.
Thank you in advance for your generosity!