Here's a bracing story from St. Jude mom, Kacie, about the challenges we all face during this frightening time of coronavirus. Kacie's daughter Olivia is waging a battle with acute lymphoblastic leukemia; and as she points out, Olivia – and all of our precious cancer patients — know all too well about the importance of staying home in order to keep healthy. I'm so pleased that Kacie stepped forward to tell us her story, and to remind us of the lessons our St. Jude kids teach us every day. - Marlo Thomas
As the parent of a child with cancer, Kacie shares her reality of raising a daughter with a compromised immune system, and what the novel coronavirus has meant for her family.
COVID-19 is alerting the world to how scary germs can be, but some of us already knew. Our family has been taking precautions since July 2018 when my daughter was diagnosed with cancer.
Hand sanitizer in every room, washing hands as much as possible, wearing masks and limiting public outings and playdates became the norm for our family in July 2018.
When your child is diagnosed with cancer, acute lymphoblastic leukemia (ALL) in our case, you learn how to keep your immunocompromised child safe from the normal germs of the world. Your routine instantly changes. You even start buying things like toilet seat covers to keep in your purse for when your child needs to use the restroom in public, and you potty train while teaching a toddler how to not touch the seat for balance.
If Olivia was able to go out, we were washing hands anytime she touched anything. If someone was coughing nearby, I instantly wrapped my arms around her to shield her from the germs. And if we tried to allow her to be a “normal kid” and she went somewhere like a children’s museum (on a week where she had strong counts only), I pretty much just held my breath and prayed the whole way through and took a bath when we got home.
Olivia is immunocompromised because the chemo she receives is wiping her system clean in order for it to have healthy blood. Many times, the chemo will lower her counts greatly, making her virtually unable to fight off germs like a healthy person would. She’s at high risk for catching a virus. A common cold that might make you or I uncomfortable for a couple of days could easily land her (and has) in the hospital for days. If her absolute neutrophil count (ANC) is below 500, she automatically must wear a mask in public or stay home. She does not get to go to daycare or go on outings during those times.
Recently, I followed the story of a child with ALL who contracted a fungal infection during the early part of his treatment. It was the infection that ultimately took his life – not the cancer. He was already in remission. But because of his lowered immunity, his body had no ability to fight.
Having no immune system is a scary, scary thing, especially now, and I am thankful that Olivia is only 4 and does not understand how risky the world is for her.
Now that Olivia is further along in treatment, her chemo dose is lower, and she’s not as immunocompromised as before. We have been more relaxed in recent months – going out more, easing up on some of the rules. Until now that the novel coronavirus has become the new reality.
We are being reminded of life at the early stages of treatment: staying home, keeping Olivia’s twin brother Owen from playing with the neighbors. Neither of the kids are going back to daycare any time soon. Owen is so kind-hearted and understands that if he goes out and brings home germs, Olivia might catch them.
We revisit lessons on hand washing and how to cough/sneeze into our elbows. We remind them not to touch things in public, and we make sure to wipe down anything that might get touched on a shopping cart.
In previous weeks, we were limiting the trips out that our kids took and now, in the last week, the only place Olivia has been is to St. Jude Children's Research Hospital for her weekly appointment. We are not “home people,” so this has been a super hard adjustment for us.
I work in the school system as a social worker and also do private therapy. Schools are obviously out, and I have rescheduled therapy appointments to protect our family. I will lose some income, but will have peace of mind that I am not risking bringing home outside germs to Olivia that could be fatal.
I have switched hats from working with high school students daily to getting creative in teaching numbers, letters, writing, etc., to my own kids at home. Olivia and Owen love to learn, so they are keeping me on my toes!
I went to the grocery on Monday evening for the first time since the pandemonium set in, and it made me scared, angry and sad. As I walked up and down the empty aisles, I had to fight back tears. Olivia is working to gain much-needed weight, but chemo and other medications make her want only certain foods. These items were in short supply that night. Thankfully, we have a great support system which has found some of the things we need, including the ever-important anti-bacterial hand soap.
Life is different right now, but we are focusing on making the most of the change of pace and family time, and we are hoping and praying that everyone else will stay home, too.