New caregivers: Write down the advice you receive – it might come in handy later when you can deal with it!

Write things down.

That’s probably one of the biggest and best pieces of advice I can give any caregiver.

I distinctly remember sitting across from the Head Oncologist of my four-year-old son’s teams (three groups) of doctors. He was an attending physician/professor and coordinated two hospitals’ treatment protocols in connection with a local university. Impressive? All I remembered about him (the preceding information came later) for the first year of treatment was that he was bald and shot words at me like lightning. Click here to read more about that!

My mind reeled that first week of diagnosis, days of exams including some pretty horrific-sized needles, some life-saving moments and then launching the treatment protocol. I remember nurses and doctors advising me to “take care of myself.” They also offered many phrases into the air while they zipped in and out of our isolated room, scrubbing thoroughly and muttering about This Society or That Resource. I heard them.

The words were just beyond my grasp.

We floated along in the surreal fuzz that envelops parents of critically ill patients like a shroud.

Children’s Miracle Network was mentioned.

Candlelighters came up.

Make-a-wish foundation, I heard, but given the children on the ward that were getting wishes granted, I assumed it was for the dying. In the denial stage I was in, it never occurred to me to check into it. My child couldn’t die…could he?

Ford Family Foundation brochures were in the parent waiting room.

We fought daily for the life of our child. These phrases continued flying over our heads.

We missed them.

Four years later, my son, with normal hair, energy and health, was watching TV with this wearied mom when something about a kid with leukemia going to Disneyland through one of the above-mentioned charities. Why? Because the kid wished for it.

“Mom!” exclaimed Andrew, “Why don’t I get to go to Disneyland? I had leukemia!”

To this day, I don’t have a justifiable answer to that. It’s simply that I was so overwhelmed with saving my son’s life, I never thought of getting things along the way. By the time I did, no one was talking about it any more.

Man, I wish I would have written stuff down as it was thrown at me over the top of a mask, across the exam table or waved at us as we exited the hospital.