Fear in Isolation? I Hear You; A Cancer Mom’s Message

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childhood cancerAs I write this, we have an anniversary of a big date in our house just around the corner.  It’s not a fun anniversary, but one we recognize nonetheless.  Just 5 short years ago, my daughter was diagnosed with Stage 4 cancer called Neuroblastoma.  Our whole world was turned upside down on that day, and led us into a world of cancer treatment, fear, and isolation that for us would last years and even up until today.

I feel that fear permeating our community as we go full force into this unknown world of COVID-19 pandemic.  What is going to happen?  Are my children going to miss school the rest of the year? Am I going to get sick? What happens to my job? How will I manage this all and keep my family safe? I have felt this panic before. I hear you, moms and dads. I hear you.

I could write a whole laundry list of recommendations and what you should and shouldn’t do, but I’m going to be honest here. You’ve already read them. You know what to do and what not to do. I’m not going to lecture you on what recommendations the CDC has made or how to bleach your countertops. You’ve gotten advice, and you are making decisions based on what you think is best for you and your family. We are all making hard decisions that affect not only our family, but now our neighbors, our loved ones, and our community.  And it feels scary.

When my daughter was diagnosed, we were given a single page with a roadmap on it of what her treatment would look like. At first glance, it looked rather unassuming, but in it was a shocking amount of chemotherapy, radiation, countless hospital stays, blood transfusions, a surgery, and a bone marrow transplant that would wipe her immunity out completely. I was terrified. Not only was the regimen of drugs we were going to pump into her life threatening, but now a common cold or influenza could also kill her. It’s heartbreaking in the childhood cancer community how many children die not of cancer itself, but catching a virus or illness that they cannot fight off because of their lack of immunity.

That is what some parents around us are facing. My family is far enough out where my daughter has been able to tolerate vaccines again, and has rebuilt some of her immunity.  But my heart drops when I think of fellow cancer parents whose child is in treatment now, and they have to take their children to the same medical facilities where COVID-19 is also being treated. I am scared for them, and for the parents and caretakers of others who are immune compromised. Maybe, just maybe, if we take the extra steps as healthy people, maybe we can save the lives of others. Unfortunately we will never know who we save, but I can guarantee that if we are careful and kind to each other, we can make a difference.

And as for those of us who are feeling isolated – please reach out. The fear and isolation that comes along with having a child who is sick can be overwhelming, and I think many of us are having a similar feeling even with our healthy children. If you feel you have no one to reach out to, please contact me.

Maybe this isn’t the same as our cancer journey, but in many ways it is. We can survive this, as long we remember to take it one day, one moment at a time. It’s not a time to be selfish, to hoard, or feel like everyone is out for themselves. This is how we prove that our community is a wonderful, caring place where we take care of each other.

Someday we will look back the journey and remember that we were strong enough to get through it, and perhaps we come out as better people and a stronger community on the other side.

The greatness of a community is most accurately measured by the compassionate actions of its members.”  – Coretta Scott King

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Christa
Christa moved to Rochester in her middle school days, and hasn’t really left since. She and her husband Aaron have two freckled faced kids and enjoy their life just north of the city in Oronoco. Their family was living what she calls The Oblivious Life until spring of 2015, when their youngest child, Hannah, was diagnosed with Stage 4 Neuroblastoma at the age of two. Devastated by the pediatric cancer diagnosis, Christa left her career to be a full time mom while Hannah received cancer treatment. Despite the heartache and hurdles, Christa still finds joy in navigating the murky waters of having a child with a complex medical illness. She enjoys putting miles on her motorcycle, summer life in their culdesac, and collecting yarn to crochet. She’ll forever be a loud advocate for childhood cancer causes. She chronicles her favorite mom moments on Instagram and Hannah’s medical journey on Facebook.

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