Chemotherapy and food are frequently at war. While patients undergoing treatment need to stay strong and keep their weight up, it is often impossible to keep much food down. Nausea is a miserable side-effect of an already miserable situation. And even when nausea is at bay, mouth sores can make eating unbearable. Taylor’s sores started in her mouth and ran all the way down her esophagus. She said food or drink felt like a piece of glass going down her throat.

Both mouth sores and nausea often required in-patient hospital stays for intravenous pain medication, nausea control and fluid to keep Taylor hydrated.

When Taylor had a low immune system, but was able to eat, her food choices were very limited. Even healthy foods such as fruits and vegetables (even organic ones!) were not an option if they grew too close to the earth. Really? It’s better to eat a sleeve of Oreos than nature’s own? According to the doctors, yes.

Adding to the frustration, Taylor constantly had “chemo palate.” Nothing ever tasted the way it was supposed to and tasted like alkaline instead.
Food became one of our biggest and certainly most constant challenges. My solution was to offer Taylor a tray that had every category of food… sweet, sour, bland, and fiery (and even candy which was both allowed and fun). Through trial and error, we managed to find some “healthy” choices like ice cream sundaes and creative pasta dishes.

Our nightly family routine became the four of us bringing the tray to Taylor’s bed and challenging her to eat. We all laughed as she picked from the tray and announced what her taste buds would tolerate that night.

We tried to make eating fun by adding humor and family time to the equation. Taylor looked forward to the tray hour and knew we were all there to love and support her.

And no matter what it took, we never gave up on trying to make Taylor laugh. She had a delicious and contagious laugh that became and remains the ticker in my heart.

A day in the hospital with a sick child can be very long. Hours are wasted waiting for doctors who are naturally late, procedures and especially scans that are never done on time.
An a adult can tolerate long waiting times more than an active child. Adding being sick … It was not a pretty picture.
Time on I phones and lap tops is a good distraction but does not engage your child in conversation. Conversation so desperately needed as children go to school less, engage with their friends less and can have long periods without interaction because of low white counts.
I found setting up visits every day Taylor was in the hospital to be a wonderful solution. I had to bear in mind those who found it very difficult to come because of time constraints and it was very obvious to tell if a person or kid was uncomfortable seeing taylor so compromised.
Among my many jobs I had to plan a social calendar. i was amazed at how many people , many that were just acquaintances, were happy and willing to come visit. No matter how sick Taylor was visits cheered her up.