In 2013, my seven-year-old daughter Quinn was diagnosed with a Primitive Neuroectodermal Tumor ― a rare and aggressive pediatric brain cancer. In hindsight, this is what I wish I knew to tell people.
“Dear Friends, Family, Neighbors, Acquaintances and the Community:
My child has been diagnosed with cancer. We will be in hospital for months during treatment. Away from home.
I know this news has shocked and upset you, but please do not cry on my shoulder as I am unable to support you. Cry with me, but not to me.
We appreciate your thoughts even if I do not reply to your texts, emails or messages. Answers to questions are hard to form in my mind, but I might manage a yes, no, or thanks.
Until we set up a social media portal to make news updates to you all, we will filter information through a designated person at home, who will then, in turn, forward it on to you.
Yes you can fundraise for us, even if I say no. I have no concept of the financial hardships ahead of us.
Think for me as my brain will be mush. Go ahead and empty our fridge at home. Turn off the hot water. Mow our lawns. Collect our mail. These things will not cross my mind. I will be in shock.
Want to visit in three hours, three days, three weeks, or three months time? Do it. Make plans. Come and see us. But as time will lose all meaning, I will not be able to commit to availability until “the moment.”
I will be tired. Bone-achingly, mind-blowing tired. I will appreciate your presence even if I am not up to talking much. Perhaps you might offer to sit with my child. Perhaps I might take you up on it, so I can I leave the hospital for some fresh air, a shower, sleep, a break.
Although an adult is expected to be with my child at all times on the ward, parents are not provided any meals. I will be hungry. Receiving your nutritious baking, ready-made meals, and fresh fruit will be a blessing. Oh ― and a good caramel latte would not go amiss.
That was a sad story about your hairdresser’s cousin’s neighbor’s sister who had a totally different cancer than my child. And died. But no, no, no. Absolutely inappropriate.
Please do not think of me as rude or ungrateful if I do not personally or publicly thank you for your well-thought-out gift, letter, or card you sent to us. I can have faith in your altruism if you can have faith in the postal system.
A hug or your silent company will be of more value than a thousand meaningless words or forced conversation.
I will have limited access to sleep, time, peace, head space, food, technology, and Wi-Fi.
Thank you for your understanding and support and love.”