Megan has officially started the 5th year of her battle with Stage 4 Alveolar Rhabdomyosarcoma. She was officially diagnosed on December 30, 2014, and over the last four years she has endured more physical and emotional trauma than any child should ever have to experience. The physical toll that fighting cancer takes on the body is immeasurable and as close to torture as I could ever imagine. Due to inadequate attention and funding for childhood cancer research, Megan has been treated with virtually the identical treatments I would have received when I was her age…and I’m 51 years old!!! The chemotherapy drugs used to treat our children are so toxic that the treatment of pediatric cancer is the art of finding that sweet spot where the body takes the maximum doses of chemotherapy to kill the cancer cells while at the same time making sure the chemotherapy doesn’t kill the child. In March, 2015, Megan came frighteningly close to reaching the point where the chemotherapy drugs almost took her life as her reduced immune system caused her to suffer from sepsis which put her in intensive care for two weeks. As we start 2019, I am becoming more and more hopeful that people are starting to listen to the passionate and determined voices of these kids. Megan has joined kids across the country who are advocating directly to legislators in an effort to educate them and force them to listen to their plight. Throughout the four years that Megan has been fighting her personal battle, I truly believe we are starting to see a slow change in regards to the attention paid to childhood cancer…but there is still so far to go.
In 2015, the National Cancer Institute (NCI) budget was $4.93 billion, and it was reported that that childhood cancer received only 4% of that sum or $198 million. Given that the U.S. Federal budget for FY19 was over $4.4 trillion, it seems ludicrous that only $198 million was allocated to funding childhood cancer research. I cannot think of a bigger bang for the buck than finding a cure for childhood cancer. In 2018, it is estimated that 15,590 children and adolescents ages 0 to 19 will be diagnosed with cancer and 1,780 will die of the disease in the United States. That’s 1,780 children in one year!!! How is that acceptable? Why aren’t our politicians focusing on this tragic loss of life? I can guarantee you that with the brilliant scientific minds in our country, making a national commitment to funding childhood cancer would result in a cure. We just have to decide the loss of life is unacceptable and make it a national priority. If our children are this country’s most precious resource, how can we not make curing childhood cancer a priority?
Megan and her fellow childhood cancer fighters are determined to make a difference. They have marched on the Capital building in Washington D.C. They have met with Federal legislators. They are even raising the funds necessary to fund the research that might actually save their lives. Thanks to the generosity of so many people and organizations, Megan has raised over $138,000 to fund important childhood cancer research being conducted at Luries Children’s Hospital in Chicago. But is it right in a country as advanced as ours that sick children are forced to raise money for their own treatments? We have to do better, and I really believe that these kids are going to finally make it happen. Their stories are both tragic and powerful, which is a combination that is difficult to ignore. My wish for 2019 is that no more children or their families will have to travel the path we have been on for the past four years. These kids deserve so much better!!!
Although Megan is in the midst of her proton radiation treatments, we still found ways to ring in the New Year. Megan is currently closing in on the end of her proton radiation protocol that is meant to treat the current tumor she has in her chest. This current tumor is her third relapse, which has resulted in her sixth bout of proton radiation. Altogether, Megan has had over 100 radiation treatments during the past four years. Originally, her radiologist thought she would need about six weeks of treatment, but after the CT scan, they discovered that they could attack her tumor from two different points each day. As a result, each time she goes in for treatment, the proton beam hits her once from the back and once from her right side. Because she is getting two treatments per day, her time was cut in half. That was great news because it means she will receive her final treatment this Wednesday! To date, the side effects from treatment have not been too bad. Her skin is only mildly irritated, which is far better than in the past when she had burns so bad that her skin would turn black at the point of treatment. She is very tired after treatment, which is a very common side effect and results in an afternoon nap most every day. This picture is pretty much the norm on the drive home from treatment.
…and the nap usually continues on the couch when she gets home, but of course, Willow always joins her 🙂
\The worst issue she is having is irritation to her lower esophagus. The proton beam is clipping the bottom of her esophagus which is causing her some extreme acid reflux when she eats. Her doctor put her on a new medication yesterday, which seems to be helping a little bit. Unfortunately, the doctor said that her symptoms will probably worsen for about 10 days after the conclusion of her treatments. Following the end of treatment, she has to wait about two months before they can get an accurate scan, so we will be in a holding pattern for awhile. The waiting is awful, but it is a fact of this battle that we have all learned to deal with. I really don’t know how Megan does it, but she has an uncanny ability to live in the moment and worry about tomorrow when it comes.
Kenzi is home from college for the holidays, which has been awesome! Last weekend, we were talking about spring break and came to the sober realization that the University of Wisconsin break is different from our spring break. Prior to Megan’s recent relapse, we had planned a trip to Cancun over the winter break, but we ended up canceling due to Megan needing her radiation treatments. Megan was upset that Kenzi couldn’t go, but we didn’t worry about it much because spring break was coming up soon. However, when we realized that our family would not be able to travel together over spring break, we also discovered that Kenzi would not be able to travel at all until the summer. With some prodding from Megan and I, Kenzi and Deb went on a last minute mother/daughter trip for five days in Cabo. I was so happy that the two of them were able to get away together and de-stress for a few days. Kenzi heads back to school on January 13, so this was a great little getaway for her. Megan and I picked then up at the airport late Friday evening. Here is a picture of the two of them in Cabo 🙂
While Kenzi and Deb were gone, Megan and I traveled to her treatment everyday, but we still managed to fit in some fun. We went to a movie/dinner theater to see the new Mary Poppins movie. We also went bowling one night, and managed to watch a movie together at home every evening. We had a great time!
We also kept track of Kenzi’s new hedgehog while she was gone 🙂
I hope everyone had a very Happy New Year! Here’s hoping that 2019 is the year that Megan is finally able to put this four year nightmare behind her. More importantly, I hope that 2019 marks the start of a renewed national commitment to our children where we put an end to pediatric cancer once and for all. Our kids certainly deserve it!!! Until next week…