In Januuary 2016, my then six year old daughter was diagnosed with a malignant brain tumor. We were swept up unexpectedly into a world we knew nothing about. I had to quit my part time job and neglect my thriving etsy shop and graphic design blog. Homeschooling changed and looked different. We were uprooted from all things normal and given a new temporary normal.
She had surgery to remove the tumor at the end of January 2016. Within two weeks, we were given the news that the tumor was malignant and we had been accepted into St. Jude Children’s Research Hospital. At the time, I had no idea where St. Jude was located. I don’t think I had ever given thought to the fact that it was a real place and not just commercials on television.
It turns out that St. Jude is in Memphis… approximately 500 miles away from our front door. She and I got on a plane and headed off for the first 8 week stretch. We were at the mercy of the hospital and its services. I had no idea where we would be staying or how we would get around. I didn’t know what we would eat, etc. We packed one large suitcase and two carry-ons. The hospital provided our flight, shuttle service to the hospital, lodging, food, laundry detergent, housekeeping… all the things. We found out when we arrived the St. Jude patients are given free or reduced admission to many attractions around Memphis.
Our days were dictated for us. We would go to the registration desk each morning where my daughter received her hospital bracelet and schedule for the day. We took the provided shuttle to get to and from the Ronald McDonald House for the duration of the radiation phase of her treatment. My husband and I were able to manage long drives to and from home on the weekend to trade off and bring siblings for much needed family time. It was insane. When I think about all the hours on the road and the quick weekends, trying to squeeze in all the family time we could… it just makes me exhausted. But you do what you can to survive in times of crisis. We desperately needed to be together during that time and we did the best we could.
Once radiation was over, we went home for four weeks before returning for the chemo portion of her protocol. This is when the isolation and social distancing really set in. Radiation was not so difficult on her body. Different people have different experiences… but for us, radiation was not so tough. Now… we are seeing some long term effects of the radiation that aren’t so great. We are a little thrown off by some of it simply because radiation itself wasn’t so bad.
I sat with a nurse before chemo began to learn what was to be expected. I found out that hand washing was key. I learned that sanitizing was a non-negotiable. Her favorite stuffed animal could only come to the hospital stays with her if we agreed to take it home and wash it daily. There would be times during her chemo cycle when her immune system would be completely wiped out and she would be super susceptible to any and all germs. It was in those times that she needed to be treated with extreme care and kept away from any sickness. She wasn’t supposed to even play outside where there might be a chance of her falling down and scraping her knees… because germs.
When we left for chemo, we did not stay in the hospital provided housing (at the time, they only allowed for four people and we have a family of six). We made the decision to stay together as a family for the duration. We were graciously given a house that was about 20 minutes away from the hospital. It was furnished and we had a cleaning service come in every other week. It was amazing, but in some ways it added to our isolation. We only knew two other families in Memphis. We were now separated from the community of other patient families at St. Jude. Our in person community became very, very small.
**Please note, because most people ask… my daughter survived. She is doing really, really well. We are so thankful for her life.**
This time of social distancing and isolation feels very familiar to me. It reminds me very much of when we had our world rocked and even the familiar things felt foreign. I wanted to share a few things that I learned during that time that may help make this time a little less scary and a little more manageable.
- Cultivate a Hobby. For your own sanity, think of something you have been wanting to devote more time to and do it. For me, it was drawing. I drew all day long. I took my sketchbook to appointments. I had it in my bag all the time. It was an outlet… a place to channel my anxiety.
2. Get outside. The weather is beautiful right now. Sit on your porch, take a walk, lounge in a hammock, play basket ball, get in a water gun fight, stand barefoot in the grass. Get outside. It does wonders for your soul!!
3. Make memories. Take time to be silly. Put on some music and have a dance party. Allow for unprompted cookie baking and craft time (shrinky dinks are a magical craft). Say yes to the things you usually say no to. Get outside of your own head and engage the people in your house.
4. Plant a garden. Hardware stores and Grocery stores are considered essential business. When you make a grocery run, grab some seed packets and soil (Walmart or a larger Grocery Store will likely still have a garden center). If you don’t have space, get creative. We used a canvas shoe organizer to plant herbs. Just plant something that you can cultivate!
5. Be ok with a little extra screen time. We were given a Nintendo Wii U when we were living in Memphis. We would play together for hours. Mario Kart is my most favorite game! Even though they were looking at a screen, they were together and talking and laughing. We also watched so many movies that summer…all of the Star Wars movies, lots of Netflix, lots of Disney. There were times when we just needed to be still, be smart, be healthy… and screens were a good way to contain the chaos and hunker down together.
6. Write a Letter. Mail was a huge life saver for us. We had an Amazon Wish List. The kids would add things they wanted… craft kits, movies, books, toys. We added household items we needed. It was awesome. People cared for us in amazingly kind ways. Maybe you could have your kids create a wishlist and surprise them every now and then?? Have your kids write letters to their friends, grandparents, aunts, uncles, cousins… Just don’t lick the envelope… use a slightly wet cloth or something like that!!
In this current season of pandemic induced social distancing and sheltering at home, I find that we are implementing some of the same strategies. We are spending a lot of time outside, lounging in hammocks. I am reading through the Chronicles of Narnia with the kids. We are taking a lot of family walks and exploring a creek that runs through our neighbor’s yard. We are baking a lot (I was teaching a cake decorating class with our homeschool group before everything got cancelled and have continued lessons via Facebook Live) and cooking more meals at home. We are watching movies. We are playing a lot of Mario.
I’m not saying that our year of cancer treatment did not absolutely rock our world. We came out of it broken and lonely and socially awkward (well… me more than the others). There were some habits created in the name of survival that have been hard to break (mostly involving snacking). We are still dealing with the aftermath. I am sure that we will all have aftermath from COVID-19. We are ALL affected… every single one of us in all of the world. The aftermath will come and we will take it. But for now… what can you do during this time of social distancing, isoloation, germ diligence, and quaranting to keep your sanity and lean into the new normal?
I am an affilitiate with Amazon. Purchases made through any links in this post benefit our family in small way. Thank you!