An added fear to a local cancer family’s norm
Written by Carrie Olson (Lia’s mom), Omaha, NE
The headlines on the news right now are enough to send a wave of panic and fear down anyone’s spine. A pandemic is here – and COVID19 is scary for any parent, let alone parents of children battling cancer. The new buzzwords are “social distancing” to “flatten the curve”. As I write this, social distancing has been happening in the greater Omaha area for about a week and I see many people starting to go a little stir crazy. Social distancing is nothing new for us, though. My family has been practicing social distancing for the past 5 months. My 2 year old daughter, Lia, was diagnosed with very high risk leukemia 5 months ago, 10/20/19.
To those that are experiencing social distancing for the first time: I’m sorry, and welcome to our world for the past 5 months. We have been living this way because Lia is extremely immune suppressed from chemotherapy. Having an immune suppressed child is isolating and lonely. Prior to Lia’s cancer diagnosis, Lia went to an amazing daycare facility where she had friends and teachers that she loved. Lia’s cancer treatment includes intense chemotherapy for 1 year followed by about 2 years of maintenance. She can no longer attend her daycare facility for at least a year, because her immune system is so suppressed. Lia is not around other children anymore, and we worry about her socialization, but we have no other choice right now. I also miss my co-workers and having adult interaction that I used to have during the day.
There was no trick or treating at Halloween for Lia this year, and we’ve had to miss holidays with extended family such as Thanksgiving and Christmas because Lia’s immune system was not strong enough to be around many other family members. Lia is now learning the names of her chemo medicines instead of her daycare friends. She sees nurses and doctors more than cousins or friends. Her laughter will make your heart melt. Her strength will make a grown person cry. If you’ve ever seen a child fight cancer, it will change your life forever. Even though our lives are challenging right now, we still find joy in each day.
If and when Lia gets a temperature of 100.4 or higher, it is an automatic trip to Children’s Hospital Emergency Room and a 48 hour hospital stay for IV antibiotics and monitoring. Even the common cold can be devastating to a child fighting cancer, so you can imagine the terror parents feel when thinking about how their child fighting cancer would do if they got COVID19. Our lives have been completely flipped upside down with Lia’s cancer diagnosis. Hand sanitizer, Lysol, bleach and Clorox wipes have already been our household staples for a while now. Many say that we are being strong through it all, but the truth is, you never know how strong you are until being strong is your (and your child’s) only choice.
The show must go on, and Lia’s chemotherapy treatments must go on, too. She is currently in a phase of her treatment which includes 3-4 day hospital stays for an intense chemotherapy called high dose methotrexate every other week for 2 months. In between our hospital visits, we literally do not leave the house. I haven’t left our house for the last 10 days. It is exhausting and not ideal, but we are managing with help from our friends who have been going grocery shopping for us, and we are SO thankful for all of the support we’ve received. It really does keep us going knowing that people care and are there for us.
It is paramount to continue to support Angels Among Us so that they can continue to provide much needed financial assistance to families like ours. Most families have already lost 1 income due to diagnosis, and now I’m hearing of other families with a child fighting cancer right here at Children’s Hospital in Omaha who are experiencing an even more critical income loss now due to layoffs because of this pandemic. The working parents in these families are also terrified of being silent carriers of COVID19 and passing it on to their warrior children. Your support truly gives our family, and many other working families in our community, a much-needed dose of hope and support every month. The financial situations for most families are already stretched so thin due to enormous medical costs and having to take lots of time off to help a child fight cancer. It is so comforting and uplifting to know that there are amazing people in our communities who care about our small warriors’ big battles.
Thank you, thank you, thank you from the bottom of our hearts to all who help support the mission Angels Among Us to lighten the financial burden of families battling childhood cancer!