Our family has learned a lot since Lily was diagnosed with Pre B Cell Acute Lymphocytic Leukemia (Pre B ALL) last week. Unfortunately, Lily is the one who has learned the most, and she has learned things that we all hope our children will never have to learn.

As Lily’s grandmother, here are some things I’ve learned:

(1) I should never go to bed at night without having had my shower, my hair washed and my next day’s clothes ironed and ready to put on. You just never know when that phone will ring and you need to be on the road immediately.

(2) Every single thing I worried about in regards to my job, my appearance, my house a week ago are totally unimportant. Family and health and love are what’s important.

(3) When I retire, I will volunteer as a teacher on a children’s cancer hall in a hospital. I’ve seen first-hand how Mrs. Elizabeth, the hospital teacher, can completely change Lily’s day. I can never do that for Lily because she sees me as Grandma Carol - not a teacher, but I could do that for other children.

(4) On one of my trips to the hospital this morning I met Ireland - a 7-year old girl who is also battling cancer. She’s on the same hall as Lily, and I had seen her helping the nurses decorate the Christmas tree yesterday. She was walking around the halls - pushing her IV pole along with her - seeing what was going on. Ireland’s and Lily’s birthdays are just a few weeks apart. I chatted with her for a few minutes this morning and was struck with how beautiful she is. Her head is completely bald and she seems oblivious to that. She looked at me with her big eyes and carried on such a polite and sweet conversation. Just by talking with me and showing me how friendly and confident she is without hair, she helped me learn that when Lily loses her hair, it will be okay. That’s something that I’ve worried about so much. But it will be fine.

(5) I joined Weight Watchers a few months ago, and I had been kinda stuck at 18 - 20 lbs of lost weight. This week I’ve learned what it’s like to look at food as purely a nutritional necessity. I have no desire to eat anything. Each day I make myself eat what I have to eat in order to remain healthy and capable of doing what must be done. Going through this experience is a highly effective weight loss method I’d never recommend to anyone - even my worst enemy.

(6) I’ve learned that a mixture of orange juice and cranberry juice make a really refreshing drink. The hospital has a refrigerator where they stock drinks and snacks for patients and family. The mother of another pediatric oncology patient recommended that combination to me on Wednesday. I drink it every day now when I visit.

(7) I’ve learned that there are some really REALLY good people in this world. Lily’s two main doctors, and her nurses. They are so caring and gentle with her. However, it’s not just the people at the hospital. There are many others, too. One example: The clerk at Target - when I was frantically buying “comfortable/lounge” clothes for Larisa and Steven to wear overnight at the hospital and some craft projects for Lily - the day after she was diagnosed - there was one item that didn’t have a price tag. I told the clerk that ordinarily, I’d just get it another time rather than waiting for someone to look up the price. And the story spilled out, with tears, of why I needed it right then. We got the price, and when I was ready to leave, she said, “What is your granddaughter’s name? I want to pray for her.” There are lots of stories similar to that.

(8) I’ve learned that anyone who is kind and gentle with Lily is someone I treasure.

(9) I’ve learned that there are people who have no good moral compass in their lives. The nurses have to keep the more popular snacks and drinks for patients and family locked up because “people know they have ‘the good stuff’ on the kids’ cancer floor, and they steal it.”

(10) I’ve learned that you can drive yourself crazy asking “what if?” and “why?” And after agonizing over all the questions, nothing is changed. The only thing you can control in a situation like this is your own responses to it.

(11) I’ve learned that people who feel helpless will do crazy and extravagant things in order to simply DO something - anything that might make a difference - however small. That day at Target I spent over $500. Lily’s mom and dad needed comfortable clothes, Lily needed tank tops (the chemo makes her hot and sleeves interfere with the IV line), Lily needed some craft projects because working on a project distracts her and makes her feel better. I was throwing anything and everything related to those needs into my shopping cart. A couple days later I did likewise at Michael’s with arts and crafts projects. My behavior is typical. My son-in-law reports that boxes of gifts and toys have just appeared on their porch. We finally decided last night that Lily craves normalcy. She never received endless gifts when she was well. She doesn’t need endless gifts now.

(12) I learned there is nothing more satisfying than to see a gift used and appreciated. I made some homemade chicken soup and took it to the hospital, heated it up for my daughter, sat her down and told her to eat. She sat there and ate it all. I got as much emotional nourishment from watching her eat something I knew was healthful and would help her be stronger - as she got physical nourishment from eating it.

This entry was posted on Monday, December 8th, 2008 at 7:15 am and is filed under Lily's Leukemia Journey. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.