When you hear the word September, people usually equate it with the Green Day song or back to school. Most parents and children are preparing for the school year ahead, but not all are as lucky. September is also the month to “go gold” in honor of Pediatric Cancer Awareness Month. Pediatric cancer research is one of the most underfunded, least talked about of all the different types of cancers. Now, each cancer is important and deserves attention and funding, but pediatrics needs more attention than what it is currently receiving. According to St. Baldrick’s, “Before they turn 20, about 1 in 285 children in the U.S. will have cancer.” If you think about the number of children is the U.S. right now that is an astonishingly high number that should not be the reality. If that statistic does not piss you off, try this, St. Baldrick’s reports, “Worldwide, a child is diagnosed every 2 minutes.” In the two minutes it takes you to microwave your dinner, a child is diagnosed with cancer. Pediatric cancer is a real issue that people need to be talking and getting angry about.
Maureen Olsen of Jackson, New Jersey has been dedicating her life to this cause for the past seven years and has shared her and her son’s story to help this movement. Maureen is the mother of four and her youngest son Chase, died at the age of nine from Malignant Rhabdoid Tumor. For those that do not know, MRT, also known as Atypical Teratoid Rhabdoid Tumor (ATRT), is an extremely aggressive cancer, and there is not enough known about it to fight it effectively.
The treatments Chase and other kids go through is unbelievable. The same drugs used on adults to fight cancer are also used on children; although, the doses are scaled down for them. The chemo treatments are far too aggressive, even when scaled back, for a developing child. Maureen shares, “Kids can heal from cancer, but can die from the side effects of chemo. Chemo destroys the immune system—the good and bad cells are destroyed. A simple virus could kill them.” For those that are unfamiliar with the chemo process, Maureen explains, “Chase was on a 21-day cycle for chemo. Chemo took three to five days if there were no complications. You would also have to go back to the hospital in between cycles for checkups. You might have to go back more frequently if they are dehydrated, need pain medication or a blood transfusion.” Sometimes children will run fevers, and “you don’t know if the fever is from a low immune system or infection. You can be in the hospital for two days while you wait to find out.” Chase should have been going to the beach, starting fourth grade, and playing sports with his peers instead of fighting cancer.
(Chase Ryan Olsen)
Maureen is extremely candid when it comes to Chase’s journey. Chase was diagnosed officially on August 17, 2009. Olsen recounts, “The doctors were brutally honest, you could tell with that look of pity on their faces…I said, ‘so, you are telling me my child is going to die.’’ The doctors said it could go either way. Chase responded well to the first round of chemo and required no pain meds since the tumor was starting to shrink. After the second round of chemo, Chase had the best couple of weeks in a long time. He wanted to go to the toy store, and he even went to recess to see some of his friends.
Although the chemo was going well, Chase needed a feeding tube since he was not able to eat and kept throwing up. In October 2009, things started to turn. Chase had an infection in his port and had to be hospitalized. The pain was becoming more intense, and he required, even more, medication. He also had fluid in his lungs and needed oxygen. When all was said and done, he was in the hospital for 16 days. Chase, a fun, and active little boy, started losing interest in video games, sports, and going places. During the four months Chase fought cancer, Olsen says, “He spent more time in the hospital than at home.” This is no way for a child to live. When discussing Chase’s cancer battle, Olsen says, “You have to hide your emotions for your child.” When Chase was first diagnosed, he asked Olsen pointedly, “What did I do? Is God punishing me?” No mother should have to answer these questions. Chase passed away on November 24, 2009.
(From Left: Alyssa, Quinn, Chase (in picture), and Morgan.)
Since then, Olsen has become more educated on the issues and has helped educate others. She has gone to numerous benefits, walks, and even started the Chase Ryan Olsen Foundation in honor of Chase. Since 2011, the foundation has been focused on bringing awareness to Pediatric Cancer and donates a scholarship to a graduating senior at Jackson Memorial High school.
As part of the awareness, I asked Maureen why the government is ignoring this situation, especially with the St. Baldrick’s stats the way they are. Olsen responds by saying, “I think people are out-of-sight-out-of-mind about pediatric cancer because they don’t want to think about it being their child.” No one wants it to be their child, but this is such an important issue, you can’t wait until pediatric cancer affects your family. Olsen continues, “We need people to get angry, not just the families. We need everyone to get involved. We need people to be pissed off.” People should be pissed off. Did you know the Empire State Building and the White House won’t go gold for Pediatric Cancer Awareness? Olsen told me she knows many families who were outraged and complained and both buildings said they couldn’t light up for every type of cancer. All the families want is one night of recognition, but neither building will do it. However, the Empire State Building can go red, white, and green for Mexican Independence Day and light up for “The View’s” 20th season. If the White House can go rainbow for the legalization of gay marriage (which I do not have a problem with personally), I think they can go gold in honor of those affected by pediatric cancer awareness month.
Not only is pediatric cancer not receiving the attention it deserves, it is not receiving the funding it needs for research and treatment. According to St. Baldrick’s, “Only 4% of U.S. federal funding is solely dedicated to childhood cancer research.” Dying children only receive 4% of funding. If children are supposed to be our future, why is the government not doing enough?
The bottom line is everyone needs to get involved in some shape or form for children to stop dying every day. There are some great organizations to donate to; St. Baldrick’s is great to donate to if you want to fund research, and St. Jude’s and Children's Hospital of Philadelphia (CHOP) are great to donate to help with care for the children. There are also many local foundations you can donate to. What people don’t think about many times is the little expenses. Sometimes families have to go from two incomes to one while going through this. “Families have costs of medical bills and expenses and need to take time off from work while still having other bills and expenses. To go to half the income you used to have while having gas, tolls, airfare, hotels and food in the hospital. It all adds up. Make A Wish and Oceans of Love are some great organizations that help the families.
It does not take much to get involved, except for a desire to change the current circumstances. Mrs. Olsen firmly believes our current generation has the power to change the game. “They have the ability to change the present state of funding for pediatric cancer by getting involved. Get involved in fundraising events like Thon or St Baldrick’s head shaving. Consider a career in research which is so desperately needed. They could be the generation that finds a cure or better treatments for these children.” Wear gold during the month of September, get educated by doing some research, sign petitions for more funding or to have the Empire State Building or White House go gold, write to your senators and congressmen and women about the lack of funding and research, or just post a sign on your lawn honoring Pediatric Cancer Awareness Month; it is a worthy cause to invest your heart in.