Q&A With a Cancer Mom – Meet Emily

September 24, 2014

The other day I introduced you to Gretchen – a fellow mama who’s days look vastly different than mine and yours because her son is currently battling cancer.

Well, since it’s September and therefore, Childhood Cancer Awareness Month, I didn’t want to stop at just one mama. Today I have Emily joining us for a Q&A about her experience battling cancer alongside her son, Ethan. Emily is an eloquent and strong mom who plans to stop at nothing in her fight against childhood cancer. Not only does she want her Ethan to see a cure, she wants to see a cure so my children and yours never experience the horrors of cancer.

Please welcome Emily and give her your support!

Hi Emily! Can you start off by sharing the highlights of Ethan’s story?

Ethan was diagnosed with leukemia in February 2012. In January of that year he had been lethargic with very swollen lymph nodes, an ear infection, strange bruising and a mild fever. He wasn’t getting better with normal care so we did bloodwork thinking maybe he had mono. I’ll never forget the morning our pediatrician called and told me I had to take Ethan to the children’s hospital immediately. My heart crashed to the pit of my stomach when she said “we can’t be sure until he has more tests but I think Ethan has leukemia”. We had his full diagnosis, an indwelling catheter placed and chemotherapy started within 48 hours of that phone call. What followed was a week of frenetic medical procedures and chemotherapy in the hospital. Now, two and a half years later, Ethan is still completing his chemotherapy protocol. Standard care for boys with leukemia is 3 to 3.5 years of oral, IV and spinal chemo. Ethan’s treatment will be exactly 1200 days. We have 8 months to go and he is handling treatment well for the most part.

What do you wish people knew about being a “cancer mom”? Is that the right name for mom’s in your shoes?

Being a momcologist feels like treading water in an open ocean. You get the diagnosis and there isn’t a single moment to sit and think. The first nine months we were at the oncology clinic 2-5 times per week for hours on end. Surgeries, tests, worry, medication, vomiting, hair falling out, more worry. You can’t turn it off. There is a part of my brain that is managing everything about Ethan’s treatment 24/7. At any moment I can tell you when and what Ethan’s next medication dose is, when our next appointment is and what it’s for, exactly what stage of treatment we are in and how many more rounds of each treatment we have left. Being a momcologist is absolutely a full time job and it is relentless. One little fever could land us in the hospital. It’s hard when people say “I don’t know how you do it, I couldn’t handle it” because I don’t have a choice. I have to do it. Just like every other mom who gets this news. The hardest part is that we have to fight for our kids on multiple fronts…. in the clinic room with the treatments and in public perception for awareness and funding. It’s exhausting. Our kids can’t vote, they can’t advocate for themselves, they can’t rally or march. The burden falls doubly hard on the parents to both handle the pressures of chemotherapy and to fight for funding for a cure.

How is your life “normal”?

What has surprised me the most is how normal we manage to keep our life. We do school, we do chores, we get in arguments, we go out to eat, we go on vacation. Ethan participates in Kids on a Mission at church, doing several community service projects throughout the year. He’s still our Ethan…. outgoing, trusting, friendly, helpful, stubborn, goofy Ethan.

How is it most different?

We understand the true meaning of faith and courage. The bonds of our love are fiercer. We are at once more fragile and more resilient. There is no putting the genie back in the bottle. We just learn how to live through our fears and find fresh hope in small things.

What organizations should we donate to if we really want to make a different in fighting childhood cancer?

Let me clear, cancer families need desperately for regular families to help us carry on the fight for funding. There are dozens of types of childhood cancer, most you have never heard of and have very few treatment options. The two organizations that I personally support for funding research for childhood cancers are the St. Baldrick’s Foundation and CureSearch for Children’s Cancer. If you want to donate to a charity that makes a difference in the quality of life for children with cancer then I recommend the Make A Wish Foundation.

The most important thing I can convey is to be cautious about who you give your money to. Some “charities” use childhood cancer as a front for taking your money for nefarious purposes. Other charities are good in their own right but only give a sliver towards childhood cancer research. Kids need specialized treatment and therapies. They are not little adults. When you donate to the American Cancer Society or the Leukemia & Lymphoma Society 2% or less of your donation benefits kids directly. This is why there has only been one new drug approved by the FDA for childhood cancer in the last 20 years. In 2012 alone, over 20 new cancer drugs were approved for adults. We are falling behind and failing our kids and the single biggest barrier to new advancements in treatment is funding.

Outside of financial contributions how else can we offer our support?

There are lots of things you can do in September to help build awareness and make a lasting impact:

GO GOLD! Gold is our ribbon color, so change your profile photo on your social media accounts to a gold ribbon, share articles about childhood cancer, wear a gold ribbon pinned to your shirt, shave your head, host a fundraiser.
Donate blood, plasma or platelets to your local blood bank and get on the national bone marrow registry.
Donate new toys, games, books or videos to your local children’s hospital.
Get your kid’s school involved. Do a bake sale or a wear gold day. There is nothing better than kids helping kids.

Don’t those statistics just make you shudder? Our kids deserve better! Join me in going gold this month (and truly, every month!) – let’s support Emily, Ethan and all the families fighting to beat childhood cancer!

Photos provided by Ethan’s Mom, Emily

Top graphic from Just a Mom’s Take On Things