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”?
- 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