September is Childhood Cancer Awareness Month. Throughout the U.S. every year more and more businesses and families are ‘going gold’ to increase awareness of the lack of funding to help find cures. Cancer can strike kids of any age and some are even born with it. Unlike many adult cancers, there are few, if any, lifestyle or environmental causes for why kids get cancer. One childhood cancer mom shares how her daughter’s illness changed her family’s lives – and their travels – as she went through treatment.
During the summer of 2012, my family took the longest vacation and road trip that we’ve ever been on. We spent over three weeks on the road in North Carolina, Florida and Atlanta. When I go back now and look at the (many) photos I took during that trip, I see three happy, healthy kids having a blast. If I look even closer, I can just barely see the tiny red dot on my then nine-year-old daughter’s right knee.
That tiny red dot turned all of our lives upside down, forever. The red dot which grew larger, and uglier. That red dot was later discovered to be a very rare form of soft tissue sarcoma – a type of cancer.
Beginning the Cancer Journey
As a parent, the word ‘cancer’ never enters your vocabulary – until that day when they’re using the word about your child. Your perfect bundle of joy. Kids get diagnosed with cancer at all ages and some are even born with cancer. According to St. Baldricks, one in 264 kids in the U.S. will be diagnosed with cancer before they turn twenty years old. There are no known causes for most types of childhood cancers. Out of those kids that survive their cancer, most face lifelong health issues resulting not only from the cancer itself but from the treatments that saved their lives.
My daughter Hannah was diagnosed at age ten with Infantile Hemangiopericytoma, which is so rare that we’ve never come across anyone else with the same type of cancer. Before her eleventh birthday she’d undergone two surgeries on her knee, and weeks of recovery and physical therapy. Plus multiple scans to see if the cancer had either recurred locally or spread to her lungs or her bones. Our family’s only vacation that summer was a day trip to a nearby zoo once Hannah was able to walk and run again.
The Lull Before the Storm
Hannah was fortunate that initial scans showed no sign of her cancer having spread. Life went back to normal with no evidence of what she had been through, other than scars on her leg. Regular scans and visits with her oncologists continued but in all other ways she was a normal preteen girl.
We also began to travel again. In spring of 2014 we took another family road trip down to Florida. Hannah went camping with friends that summer and began sixth grade in the fall. She played her eighth fall season of AYSO soccer. She also competed in Lego League and I chaperoned her overnight trip to the state competition in December. Only a few weeks later, right before Christmas, our lives would be turned upside down by cancer again.
The doctors call it metastasis, when a tumor spreads from the site where it was originally discovered. Since her initial diagnosis, Hannah’s lungs had been routinely monitored with CT scans every few months. The lungs and the bones are the two primary locations where sarcomas tend to spread. In December of 2014, we were told that a small nodule in Hannah’s left lung had grown since the previous scan.
We were shocked. Suddenly our holiday included discussions about more surgery and other treatment options. In early January 2015, the surgeon successfully removed the small nodule so it could be biopsied. Then we received the news that the nodule was indeed the same type of tumor that had been removed from Hannah’s knee almost 21 months earlier. We met with Hannah’s oncologist, who recommended an intensive course of chemotherapy. Even though the tumor was now gone, we didn’t know what other tumor cells might still be lurking in her body. There could still be tumor cells yet too small to show up on scans.
There is no set treatment plan for metastatic Hemangiopericytoma because it is so extremely rare. Hannah’s oncologist formulated a ten month long treatment plan based on other how other forms of sarcoma are treated. This involved fifteen rounds of chemotherapy mostly done inpatient, every two to three weeks. There would be no way to know if it worked, other than long-term monitoring for further recurrences.
Chemotherapy drugs are toxic. Watching my child being pumped full of chemicals is one of the most difficult things I’ve ever had to do as a parent. The drugs make kids sick. Some of the drugs can cause damage to otherwise healthy organs, like the liver and heart. They can affect fertility and even cause secondary cancers. We suddenly had to become experts on drugs with long names like Doxorubicin and Cyclophosphamide. Hannah’s immune system was now suppressed, so any fever or virus could potentially send her into the hospital. I grew used to giving my tween nightly injections to help boost her white blood cell production.
A 12-year-old girl is in the middle of all kinds of hormonal changes and emotions; adding cancer treatment to the mix certainly doesn’t help. We knew that Hannah would lose her long, wavy hair so we cut it short to help make the transition to baldness easier. She kept her head covered 24/7 and never let anyone see it bald. She lost over fifteen pounds. But she was determined to keep her life as ‘normal’ as possible and continued to go to school and (on a limited basis) play soccer that spring. She even attended sixth grade camp with the rest of her classmates. I chaperoned, in case any medical issues arose over the two nights.
You may not think that travel would figure into a story about childhood cancer. And in many ways you would be right. We did not take any family vacations during the those months that Hannah was undergoing chemotherapy. We never left our home state of Michigan. My suitcase was packed every couple of weeks, but only to stay at the hospital with Hannah for her inpatient chemotherapy treatments.
The eleven-story Helen DeVos Children’s Hospital does feel somewhat like a hotel, especially since it has amazing views of downtown Grand Rapids. The sunsets from the ninth floor oncology ward are often incredible. Many cancer families refer to it as ‘Hotel Helen’ because they spend so many nights there during treatment.
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But hotels don’t include full-time nursing staff, kids dragging IV poles everywhere they go and the knowledge that not all of the children sleeping within its walls will survive their cancer. More kids lose their lives to childhood cancer than any other disease. Many of the kids we’ve met over the past few years have been among them.
Cancer brings a lot of things into your life. Plenty of scary things come along with it, and you never forget those. But we found that having a child with cancer also brings some good as well. We received so much support from family and friends, plus our school and community. Strangers prayed for Hannah, sent her cards and well-wishes and even gifts to help brighten her spirits.
However, childhood cancer robs kids of many things, including a ‘normal’ childhood. Some kids are in treatment for years and miss out on so many typical experiences. Thankfully, camp isn’t one of them. Here in Michigan we are fortunate to have two week-long overnight camps for childhood cancer patients, and Hannah was able to attend both of them. Both camps have doctors and nurses on staff; some of them were even from our own hospital. Packing up your child for a week away is difficult to begin with. Packing up a medically sensitive one is even more so. Our kids had never gone away to overnight camp before, so this was an entirely new experience.
The rest of our family also experienced camp that summer as well. Along with a week of camp for kids with cancer, Special Days Camp offers a camp for their siblings to also get away and enjoy a week of making summertime memories. Once eligible, kids can keep going through high school. My older two kids have since aged out of Special Days, but my youngest just finished her latest sibling week there (after two years off due to Covid restrictions) and had an absolute blast.
That same summer, our entire family spent a weekend at a Cowboy Camp-Out with other pediatric cancer families, put on by Camp Casey. We were also pampered and loved on when we attended Starlight Shores Family Camp. This camp pairs volunteer families with childhood cancer families to allow the cancer families to get away from the hospital and worry and truly be ‘relaxed, renewed and restored’. Along with swimming, games, crafts and other fun activities, my husband and I had the chance to meet with other childhood cancer parents throughout the week to learn and share about our experiences. Not only did we make friends, but we enjoyed the best family time that we’d had in quite a while.
Traveling with a Cancer Kid
Can your family travel when you have a child with cancer? Yes. It’s just different. You may be attending a camp or event specifically aimed at cancer families. Your child may choose a vacation as their ‘wish’ from an organization that makes their dreams come true. Or you may be looking to give your terminally ill child one last amazing memory.
Our family is grateful that Hannah finished her chemotherapy treatment in November of 2015 and so far all of her scans since have been ‘stable’ with no evidence of disease. This is as close as the doctors come to telling you that your child is cured, because there are no guarantees when it comes to cancer.
Hannah continues to be monitored every year. She is past the five-year mark when many childhood cancer patients are considered no longer at risk for their cancer to reoccur, but because of her type of sarcoma, she will keep being monitored more closely through her early twenties.
Since finishing chemotherapy, Hannah has graduated from high school and is about to begin her sophomore year of college at the University of Michigan as an English major. She plans to go into book publishing and also become an author, and I have no doubt at all that she’ll achieve anything she wants to accomplish.
September is Childhood Cancer Awareness Month
The color for childhood cancer awareness is gold. You may not see as much gold in September as you do pink in October for breast cancer awareness, but it’s out there more and more. And Childhood Cancer Awareness Month is growing year by year. Unfortunately, childhood cancer receives very little government funding for research and development of new drugs. Only 4% of the National Cancer Institute’s annual budget goes toward childhood cancer.
When your child is diagnosed with cancer you become their medical advocate. You also find that you need to become an advocate for childhood cancer as a cause as well. Parents do whatever they can to raise awareness and funding, to become a voice for their kids with organizations like Alex’s Lemonade Stand, St. Baldricks, and The Truth 365. We turn our lives gold in September for Childhood Cancer Awareness Month.
Please “Go Gold” this month for kids like Hannah, and all of the others out there still battling for their lives. And for those who have lost their lives way too soon. As I send my kids back to school, I remember and honor those kids whose schoolroom is a hospital room. And those who will never get another ‘first day’ picture taken again.