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.

It’s interesting - and common - how life can change so quickly. One moment you’re worrying about all the little inconsequential things in life. The next, life itself hangs in the balance.

My precious Lily has leukemia. It seems absurd to even type those words. Not that sweet, smiling wonderful little girl! Lily is my 7-year old granddaughter - our “Sweet Stuff.” Tonight she is in the hospital - anticipating having a port inserted tomorrow under her skin with a tube running to her heart so that the doctors can start administering chemotherapy to eventually make her well again.

Her type of leukemia is ALL (and I’m too tired to look up exactly what that acronym stands for), but it is the most treatable kind of childhood leukemia. The cure rate is 90%. The oncologists said they saw nothing to indicate that Lily would not be in that 90%. However, she has a rough road ahead to get to that point.

She will be in the hospital for about 3 weeks with this first round of chemo. The goal is to get her well enough to go home for Christmas. After that she will go in once a week for more chemo through spring and possibly into summer. Once the weekly chemo is done she’ll start two years of monthly treatments.

Our precious little girl who loves school so much will likely not be able to return to school this year. Our hearts are broken just thinking of the challenges ahead for her - and wishing that there was some possible way to take them for her.

Please say a prayer for our Lily - and then keep her in your prayers.

Our precious 7-year old granddaughter, Sweet Stuff, was rushed to the emergency room Saturday night with a severe pain in her back. No fever - just the awful pain. The diagnosis: a kidney infection. She was given antibiotics and pain killers and sent home. Sunday morning she started running a 103 temperature and they couldn’t get it to go down. The doctor sent them to Vanderbilt Children’s Hospital where they did a CT scan to rule out a kidney stone. The CT scan showed no kidney stone, but enlarged lymph nodes in Sweet Stuff’s abdomen. Tentative diagnosis: kidney infection, bladder infection and probably something viral as well.

Pray for my Sweet Stuff

Today, the urine tests they ran at Vanderbilt came back - no kidney infection and no bladder infection. Then Sweet Stuff started running a fever again, and her back still hurt. The pediatrician had them bring Sweet Stuff to his office this evening to run some blood tests. Amazingly enough at neither the ER on Saturday night nor Vanderbilt on Sunday were any blood tests done. Lots of urine tests and the CT scan - but no blood tests. As soon as the doctor saw the results of the blood test, he told my daughter to take Sweet Stuff immediately back to Vanderbilt. He called ahead to alert them. He told my daughter that he’s 90 per cent sure she has leukemia. Leukemia. What an awful word! When my son-in-law told me that word, the world seemed to stop. Not my Sweet Stuff. He called to not only tell me the news but to ask me to come immediately and get Sunshine, our 5-year old granddaughter, and let her spend the night with me and then take her to school tomorrow morning. Both he and my daughter needed to be at the hospital with Sweet Stuff.

90% means 10% not. So we are praying like crazy that Sweet Stuff will be in that 10%. Please keep them in your prayers. Sweet Stuff is at the hospital now, on an IV and undergoing more bloodwork. My daughter keeps texting me updates - mostly waiting. Sweet Stuff is tiring of the IV and wants it OUT!

I’ll update this post when we hear anything further.

My evening was busy - picking up Sunshine, picking up a pizza since that’s what she wanted for her late, late dinner. Getting her bathed and in bed. She only knows that her sister is sick and in the hospital and that’s why she’s getting to spend the night with Grandma Carol. Before Sunshine went to sleep tonight (in my bed, of course), we said prayers. Now usually Sunshine doesn’t participate in praying out loud. She’s very self-conscious. Tonight, though, it was just her and me, and I guess she felt more secure. I finished my prayer - thinking that was all for the night - when suddenly Sunshine’s sweet voice began her prayer. In her prayer she prayed that her sister would get well soon. Amen and AMEN.

Update: 11:25 P.M. Doctor said they don’t have final resuls and can’t tell them anything until they have the final results - and that’ll it’ll be awhile. They have the preliminary findings but can’t discuss them until they’ve been verified and finalized.

Later update: It is leukemia. More later.