(Sophie, Carol, Lily on the last day of school for students
Walnut Grove Elementary, May 2010)

As I walked out of Walnut Grove Elementary school on May 24, 2010 - my last day of teaching before retirement - I felt melancholy. I walked slowly across the parking lot and got into my car. Then I looked back at the school where I had taught for the previous three years. I was ready for retirement - MORE than ready for retirement. I had taught for 30 years, and the joy that I’d experienced during most of my teaching career just wasn’t there anymore. I loved working with the kids, but the bureaucracy and paperwork and silly demands of the county administration was wearing.

Despite being ready to retire, however, I was also acutely aware that I was leaving what I would always consider one of the best experiences of my life. I hated to see that particular teaching experience end.

In August 2007, I started teaching at Walnut Grove - the school where Lily was in first grade. I was the reading specialist - a position I truly loved. I taught there again the next year - when Sophie started kindergarten and Lily was in second grade, and the next year when Sophie was in first grade and Lily was in third.

Altogether I taught at Walnut Grove for three years. Those years are the “good old days” that I will look back on with fondness. That first year I drove Lily home from school on most days. As we walked to the car each day, we’d talk about how we were “school buddies.” Many times we’d pick Sophie up from daycare, and they’d stay with me until their mom or dad got home from work. We’d run errands together, go home and cook dinner together, or sometimes I’d take them to their mom’s office.

During the first half of the second year, we had “reading club” after school. We’d sit around the reading table in my office, and we’d read together. I was determined to help both girls get better with their reading. I was a reading specialist, after all! It’s ironic that the reading specialist’s grandkids struggle somewhat with reading! I was determined to get them over that “hump.” Then we’d head out to the car, and I’d tell them how much I enjoyed being with my two “school buddies.”

Unfortunately that second year at Walnut Grove was the year that Lily was diagnosed with leukemia right after Thanksgiving, and all our lives were changed. Because of her treatment for leukemia, Lily couldn’t attend school the second half of that year, and she was unable to attend school the first half of her third grade year.

When Lily was diagnosed, that was the end of the reading club. Our lives were suddenly crazy - and, quite honestly, neither Sophie nor I was ready to continue the reading club without Lily. And Lily was in such intense treatment, reading was the last thing on her mind. For the remainder of that year, Sophie and I were together a lot. I’d take her home from school, or, if Lily was in the hospital, we’d go to the hospital after school to visit. I became closer to Sophie and she was my only “school buddy” for a long time.

It was January 2010 - about a year after diagnosis - before our lives became somewhat similar to how they’d been before Lily’s diagnosis. They had Brittany now - their babysitter - who picked them up from school on most days. Still, though, there were days when one or both of them would ride home from school with me. I treasured those days. Really treasured having both my school buddies with me again. I knew I would be retiring soon and that the days of teaching at their school were numbered.

Most days I’d see one or the other in the hall as I was going to pick up kids for my reading groups. Sometimes Sophie’s teacher would have me to come to their class to do a reading lesson.

Then there were some days when, although we were in the same building the entire school day, our schedules didn’t coincide, and I’d realize at the end of the school day that I hadn’t seen one or the other of them all day. And on those days, I’d make it a point to go to the car rider line and chat with them until Brittany picked them up. Often in the middle of the school day, I’d go to the cafeteria when I knew Sophie’s class or Lily’s class was eating lunch, and I’d stop by their table and say hi for a minute.

It was the “being there” that was so wonderful. With all the upset of Lily’s diagnosis, it was good for the girls to know that I was at the school should they need me. And sometimes they needed me. Once I stayed in Lily’s classroom for over an hour - just Lily and me - while she slept on pillows in the back of the room. I stayed there with her so her class could go to lunch and then to recess. When she had fallen asleep, the teacher and kids knew she was exhausted from all the chemo and they tiptoed and whispered as she slept for over two hours. Sophie worried about Lily, and on the days that Lily had to go to clinic, Larisa (their mom) would email me Lily’s blood counts or to tell me that the spinal tap had gone well & Lily was awake and eating - whatever the news for that particular visit - and I would go to Sophie’s class and let her know. She was concerned, and knowing that Lily was okay or that her counts were good was a comfort to her. Sophie’s teacher was really thoughtful - and perceptive. Sometimes she’d send Sophie to my room - just for a quick Grandma Carol hug.

And then sometimes - especially when Lily first returned to school and got tired so easily - her teacher would send her to my room to rest for awhile. We had a special “resting chair” that I kept in my office. If I was working with children, she’d come in quietly, we’d set up the chair, and then I’d continue with my reading group while she rested.

As part of Lily’s 504 plan, she “tutored” a kindergarten child each day for 15 minutes to help with her own confidence and reading. I helped Lily make her “lesson plan” and gather materials. I was thrilled that my planning time coincided with the time that she and Kate read together because that meant they could do their work in my room each day. I would sit at my desk and do my work while Lily and Kate read together. I loved being the proverbial fly on the wall as I listened to the two children interact. Reading with Kate was Lily’s favorite part of the school day.

Getting the teaching position at Walnut Grove had worked out so well - so many things came together at the right time. I had taught in the school system for many years, and just happened to learn of that position the day the previous reading specialist turned in her notice. Within 15 minutes, I had my application in and almost immediately got the job. Was it part of God’s plan so I’d be there when Lily was diagnosed? I don’t know, but I’m sure glad it worked out that way.

School will start again in August. Lily and Sophie will be attending a new school that is being built in their neighborhood. Many of the teachers at their new school will be teachers from Walnut Grove since the new school was built to relieve the overcrowding at Walnut Grove. And I will be at the school a lot - not as a teacher but as a volunteer. I will meet their teachers, and I will volunteer to come in each week to work in their classrooms. Most likely I’ll help kids with reading. Some days I will pick up the girls after school. Or, if one of them should get sick, I could be there quickly to get them.

It won’t be the same, though. The past three years were almost magical for this grandmother, and I will always remember those “good old days” with a smile.

Starting in September I will take care of Evey one day each week when Meleah goes back to work. My days with Evey, along with my days of volunteering at Lily’s and Sophie’s new school will provide new “good old days” to enjoy.

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I’m entering my second month of retirement, and I’ve discovered that I’m not a horrible housekeeper, after all. During my working life I was scrambling to get up, dressed, fed and off to work each morning, and by the time I got home in the evenings, my energy was low and I barely managed to do what absolutely HAD to be done. Then weekends were for catching up - something I never actually did. Now I’ve discovered the glory of the calm, retired life.

I awaken each morning, amble into the kitchen in my jammies and prepare my mug of coffee. Then I sit in my recliner and enjoy my coffee and catch up on the news - either online or on TV. Then I make breakfast and see Ron off to work. Sometimes he and I will take a walk before he goes to work.

Next I get a shower, get dressed and then, at my leisure, I make the bed, take care of dishes, laundry, generally straightening things. I stroll out in the yard and fill the bird feeders, check the garden to see if anything needs to be harvested. I might hoe some weeds in the garden or trim the rose bushes.

If I have something planned for the morning - like walking with Meleah, babysitting Evey, being with Lily and sophie, appointments - whatever - I just do all the leisurely stuff when I get home.

The house stays straight and looks company-ready ALL the time. No dishes piled in the sink, no crumbs on the kitchen floor, no laundry piled a mile high. The pantry is neat and organized. Laundry is folded and put away. I can actually find what I want in my closet.

I’ve always read that a cluttered home increases stress. Now I’m seeing the evidence for myself of how a clean and organized home makes for a calmer life. It’s nice.

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The mom of a child battling cancer asked for someone to sit with her daughter at the hospital for awhile this afternoon so she could take care of an errand. I volunteered. The child has relapsed twice from a malignant tumor. Although I got to the hospital on time - even a couple minutes early, the mom had already left, and the child was sleeping. The little girl didn’t look like the same child I met a year ago. Her face and belly were swollen from the steroids. As she slept, she moaned occasionally. When the nurse came in to take her temperature or to administer meds, the child cried out - actually she growled - and fought - “Don’t touch me!” “No!”

The nurse was calm and reassuring. Steroids do that to a child. I remember when Lily was going through the first phase of treatment for leukemia and was getting heavy doses of steroids - she’d growl, too. Yes, literally growl.

So I sat in a chair for three and a half hours and watched this little girl - a little girl who should be outside playing with her friends, going swimming, enjoying a summer of fun. But she is in the hospital, in pain and being treated with drugs that change not only her outward appearance but her personality as well. Her innocence, her childhood have been stolen by cancer.

EVERY single adult in the country should be required to spend at least one afternoon in a hospital room with a “cancer kid.” It changes your perspective on life. It changes your priorities. It makes you profoundly grateful for your own blessings in life, and it makes you profoundly determined to do WHATEVER you can to end this atrocity. It makes you determined to bring attention to the need for more research on childhood cancer. NO child should ever have to endure what these precious children must endure.

I’m very proud that Lily’s foundation - Lily’s Garden - has funded an endowment at the Monroe Carell Children’s Hospital at Vanderbilt to further research on childhood cancer. But that is only a fraction of what is needed. There IS a cure out there. There IS a cause of cancer. And only more research will find the causes and the cures.

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So it’s Monday morning - and the summer lies ahead, along with retirement. I started Weight Watchers anew this morning. I can keep my food diary on my Droid, and I have a Wii Fit upstairs that I pledge to use 5 days a week.

Today is one of Ron’s and my anniversaries. 41 years ago today we were married for the first time. I’ve never taken the time to figure out exactly how long we’ve been married. Married 6/7/69, divorced 12/18/97, remarried 9/5/06. Someday I’ll figure it out. For now, I figure 28 1/2 years the first time, and then add 3+ years the second time. So we’re into 31+ years. We should’ve remarried on December 18th, and then we could have just picked up where we left off in counting.

In my exciting schedule, I have a dentist appointment at noon today. Tomorrow I have an appointment for my yearly mammogram. Fun times! I’ll fit a hair highlight/cut appointment in either today or tomorrow if my hairdresser can schedule it. Then I’ll drive down to my mother’s for a couple days later this week.

Goals for this week:
(1) stick to Weight Watchers points maximum each day
(2) exercise each day
(3) keep basic household chores caught up (laundry, dishes, bed, watering plants, general straightening)
(4) have healthy dinner prepared each evening
(5) do something for someone else each day
(6) do something FUN each day

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September is Childhood Cancer Awareness month, and it has ended on a somber note. Three children you almost certainly have never heard of: Madison, Valerie and Luke. Three children who have died in the past 2 days of cancer. Here’s another name: Jessica - a ten-year old girl who has been under hospice care for about a month now - undergoing unbearable pain as the tumors of rhabdomyosarcoma invade her chest cavity - displacing her organs and wrapping around her ribs. She will be joining Madison, Valerie and Luke in heaven soon. Yet another young life ended much too soon. And there is also Sammie - another “cancer kid” now with hospice care. My heart is broken for these precious children and all they have had to endure. For their families, too.

Childhood cancer is a reality that is unpleasant - horrifying - unbearably sad. That’s why, in my opinion, people don’t give childhood cancer the attention and funding it desperately needs. It is so much more palatable to give our attention and money to adult cancers and illnesses. Adult illnesses are sad - but they’re ADULTS - at least they made it through their childhoods. We can deal with adult cancer.

I remember a few years ago changing the television station when a St. Jude program came on. I couldn’t bear to watch the little bald-headed children - especially when Marlo Thomas highlighted a child who lost the battle against cancer. It was too painful to think of children undergoing chemotherapy and radiation — too horrifying to think of children losing limbs and being disfigured by cancer - too sad to think of children dying painful deaths. So I changed the channel.

All of those horrifying things are a reality, though. Right this very minute there are children dying of cancer. Those children and their families can’t change the TV channel. They can’t look the other way.

We owe it to those children to give our absolute 100% effort to do everything in our power to end childhood cancer once and for all. There IS a cure for childhood cancer. There IS a way to prevent it. We just have to fund enough research to find them.

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Every school day, 46 children are diagnosed with cancer. Last December 1st, my precious granddaughter, Lily, became one of those children. It is a diagnosis that has changed our family forever. September is Childhood Cancer Awareness Month.

Since Lily was diagnosed last year with Acute Lymphocytic Leukemia (ALL), our eyes have been opened to a world we were only vaguely aware of before. The world of childhood cancer has always been there, but most people think of it only when a St. Jude commercial comes on the T.V. or they see a bald-headed child while they’re out shopping. It’s a very real world, though. A very scary and all-consuming world.

Lily has what is sometimes referred to as the “good” leukemia. She has the leukemia that has the best odds of surviving. There is no “good” cancer, though. Since Lily was diagnosed, A.L.L. (or complications from the treatment for A.L.L.) has taken the lives of Addison, Dariana, Nate, Zac and Anika. During that time, other childhood cancers have ended the lives of Caleb, Kris, Kayla, Chelsea, Charlton, and Alexa. And even more sad - these are only the children whose journeys I have personally followed. There are so many, many more. Each of those children were loved and treasured by their families. They left behind brothers and sisters and mothers and fathers who are reeling from the loss. The children themselves suffered through incredible pain and untold numbers of operations and procedures.

We now know other children who are battling cancer at Vandy - Katherine, Tanner, Grayson, Angelie, Hatcher, Andy, Thomas, Elisha, Dylan, Samantha, Riley, Ireland, Cooper, Savannah, Hailey. And others, like Elke, Emma, Kate, Ian and Sallie, who are battling cancer at other hospitals. Sometimes I am overwhelmed at the sheer enormity of the world of childhood cancer. So many children. So much suffering. So little money spent to develop better treatments and a cure.

I wish that there was a requirement that before anyone could run for public office of any kind, they had to spend a day at a children’s oncology clinic. You can’t spend more than a few minutes there without realizing that finding a cure for childhood cancer is a top priority. We have GOT to find better and gentler treatments. Just imagine the horror a mother experiences as she watches poison being injected in her child’s port - knowing that the poison will make the child sick, will cause incredible pain, and could very well cause serious learning problems later in life. And yet, the only alternative is to watch her child die. Imagine the frustration a father feels as he watches kids playing in the park or playing soccer while his child is so weak that he can hardly stand up - much less run and play.

Please do SOMETHING to help spread the word for the need for more research into a cure for childhood cancer. Check out Lily’s Garden for more ways to help.

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A few days ago I wrote that my upcoming sixtieth birthday was distressing to me. Sixty is like a line of demarcation. Once you’re on the back side of sixty, you know without a doubt you’re well into the second half of your life. Okay, you really knew that when you turned 50 - even 40, but you could convince yourself that you’d be one of those folks who live to be 80, 90 or 100. However, celebrating a 120th birthday is beyond the scope of even the most wildly optimistic mind. So I was feeling a little blue about being 60 years old.

Then someone left me a link to Kalyn’s Kitchen. Kalyn celebrated her 60th birthday last December by writing about the 60 things she’s learned in 60 years. Lord knows I’ve learned a lot so far in my life. So, with due regards to Kalyn for the idea, here are my “60 Things I’ve Learned in Sixty Years.”

1. Watching birds on a bird feeder gives one a sense of serenity.
2. It is easier to just DO whatever needs to be done rather than spend time planning to do it.
3. Even when you consciously cherish every possible moment of raising your children, their childhoods still go by much too quickly.
4. Grandchildren might possibly be life’s greatest joy.
5. Outdoor kittens are the perfect pets - for me, at least. Plus they’re great for keeping mice away from the house.
6. Just because I’m not a “dog person” doesn’t mean I’m a bad person - just a person who doesn’t particularly care for dogs. Still, I am glad we have Jake because of the security he provides - even though he takes any piece of paper he can find and shreds it all over the yard. He’s Ron’s dog - so I don’t have to clean up after him.
7. Life can change forever in a second - for the better or for the worse.
8. There is a “world of cancer” that most people are only vaguely aware of - if at all. It’s a world quite different from the world of people who aren’t dealing directly with cancer. It makes me wonder about the other “worlds” out there that I know little, if anything, about.
9. You can handle a lot more than you ever thought you could.
10. Listening to gospel music is both uplifting and comforting - and it brings back a lot of memories.
11. It is worth the time and effort to sit down together as a family for a meal each day - even if “sitting down” consists of side-by-side recliners in front of the TV.
12. While I have done things in my life that I regret, my life likely wouldn’t be as good as it is now if I hadn’t had those regrettable experiences.
13. Sometimes actions that make perfect sense at the time seem ridiculous a few years on down the road.
14. When it comes to blogs and online networking sites, it is better not to respond when someone you love writes something you strongly disagree with. Even though I know this to be true, I don’t always do it.
15. It takes a certain personality to be a salesperson - and I don’t have that certain personality.
16. Timewise, teaching is a great profession for a parent. Money-wise, not so much.
17. Waking early, sipping a cup of coffee and easing into the day is a great way to start the day.
18. Being trustworthy is right at the top of the list of the most important character traits. If you can’t be trusted, traits such as kindness and generosity don’t mean much.
19. It is fun and makes you feel special to find a 4-leaf clover. Some people have a knack for finding them.
20. I am glad I’ve had lots of grand adventures in the past sixty years that I can think about with a smile.
21. It is good to look forward to still more grand adventures in the future.
22. Once you’ve been on a children’s oncology floor of a hospital and watched kids getting infusions of chemo, going to the dentist is no longer a big deal.
23. Keeping a camera in the car is helpful. You never know when you’ll want or need to photograph something.
24. It is okay to go through short-lived (or long-lived) phases. At various times in my life I’ve been crazy about quilting, growing roses, making soap, biking, blogging, running, eating grapefruit. The craze always ends, and I move on to something else. Each phase, though, has been fun and I’ve learned from it.
25. Watching a cat stalking birds under a bird feeder is a lesson in patience.
26. Watching a cat play with an animal it has caught is a lesson in nature’s cruelty.
27. Memorizing one’s debit card number makes it easy to make impulse purchases.
28. Being a parent is a life-time job. Even when the kids are grown and on their own, you will worry about them and hurt for them and rejoice with them.
29. One of the purest and tenderest experiences in the world is watching a baby or small child fall asleep in your arms.
30. Just about anything tastes better when it’s grilled outdoors.
31. Good intentions and cloudy thinking are a dangerous combination.
32. One of my greatest satisfactions is preparing a meal that people really enjoy.
33. A cluttered environment leads to stress.
34. The song really does remember when. (Trisha Yearwood - “The Song Remembers When”)
35. It is true that the only person we can really control is ourselves.
36. Most problems that we have are the result of choices we have made. If we want to change things, we have to start making different choices.
37. The “little things” count in a relationship.
38. Don’t buy a cheap mattress. Getting a good night’s sleep affects every other aspect of your life.
39. Perseverance is needed to succeed at any endeavor - whether it’s maintaining a garden, learning a new language, cleaning the house, losing weight or feeding birds.
40. You have to pick your battles in raising children, getting along with your spouse, and working with colleagues.
41. If you make yourself go through the physical motion of smiling when you are upset, it is easier to stop feeling upset.
42. A good night’s sleep makes everything seem better.
43. Traditions are important - but not all-important.
44. Reading is the most multi-dimensional activity I can think of. Through reading we can experience things beyond our physical circumstances or limitations.
45. Baskets are an easy way to de-clutter. Put stacks of magazines and books in baskets, and voila! They’re organized and neat.
46. If you’re feeling down and depressed, either do something for someone else or take a walk. Either one will make you feel better.
47. Ice cream is quite possibly the best tasting food in the world - especially Blue Bell’s Homemade Vanilla ice cream with a little chocolate syrup drizzled on it.
48. It is true that you’re more likely to regret the things you don’t do more than the things you do.
49. There are some seriously mixed up people in the world, and once you’ve identified them, it’s best to steer clear of them.
50. Cherish today because in a few years you’ll consider it part of the good old days.
51. Don’t ever say anything in anger that you wouldn’t want your mom or pastor to overhear.
52. Memorizing poems, songs and stories makes it possible to entertain yourself at times.
53. In making decisions, family always comes first.
54. A reaction to poison ivy really CAN become systemic.
55. There are aspects of each season of the year that I love: Winter = able to hike through woods without fearing poison ivy; spring = all the shades of green; summer = no school; fall = cooler weather.
56. You can teach an old dog new tricks - it just takes more time and effort.
57. Computers are incredible time savers and incredible time wasters.
58. Sometimes people who should know better, don’t.
59. Keeping a journal is a good practice because even if you think there are some things you’ll never forget, after enough years go by, you’ll forget. Not everything, of course, but you’d be surprised how many things you forget.
60. When you’re feeling a little sad about getting older, it helps to write about the things you’ve learned so far in your life.

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I went to high school in the 60’s - a happy time for me. Now, I am a few days away from my 60th birthday - my own version of the 60’s. And it’s not a happy feeling. Yes, of course it is better than the alternative. Really, though, once you’re sixty there is no pretending that you’re still young. I enjoyed my 40’s and my 50’s. I celebrated my 40th and 50th birthdays happily. “Age is just a number,” I’d declare. However, the birthday I’ll celebrate on Wednesday of this week isn’t one I look forward to. I proudly told people my age when I was in my 40’s and 50’s. I am embarrassed to tell people that I will be sixty in a few days. I don’t want to celebrate. Don’t want any gifts - no birthday cake - no whoop-de-do about the day. Yikes! 60 years old! That’s the pits.

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Please read the post below - copied with permission from Lily’s CaringBridge website. Lily is 8 years old, and she has leukemia. You can read more at http://lilysgarden.org.

Lily, April 2009

Good Morning! Well we survived our first home administration of chemo yesterday. The hardest part was slowing Lily down. I wanted to read the instructions; however Lily was very confidently hooking everything up. She, of course, was right; however I did insist I administer the actual chemo and Zofran. But she did all of the prep of the port and then flushes. She is so funny. She just confidently cleans the tube, hooks up the saline, draws back blood to make sure it works and pushes in the saline. I guess it is good she wants to participate in her medical care .

Yesterday she felt ok. She didn’t feel as good as she has and was pretty tired. However with a 3 1/2 hour nap in the middle of the day and lots of anti nausea medicine she did pretty good.

We had PT yesterday however her therapist cut the session short after about 15 mins because she was so tired. It was cute she would be red faced from trying and he would say, “Lily, do you want to take a break you look tired?” She would say, “No I’m fine.” He would then come up with an excuse to go get something to make her rest. They would start up again and he would have to break again. I was appreciative, though, that he noticed how tired she was and cut it short.

She has told me that PT is not as much “FUN” at this place, which I can see since they are really working her hard to get her back to functioning. However, she said she likes it better because she wants to get back to gymnastics and soccer and she knows she has a lot to do to get back. It just breaks my heart to watch her at PT. It reminds me of how much she has lost from the treatment. I pray she will be able to go back to gymnastics and soccer, however right now it appears that will be a LONG way off if ever. She still can’t run or even skip and for even the walking activities her therapist has to keep a belt on her so he can keep her upright.

Well, I’m sure you have all heard about Michael Jackson and Farrah Fawcett passing away yesterday. While it is sad everytime I see such excessive coverage of something like this on TV it just disappoints me. I think of all of our friends we have lost since Lily was diagnosed. Much sadder and heroic stories than Michael Jackson. These are kids that have fought a hard battle - kids in the prime of their lives that have died. But there is no news media coverage of their deaths.

There is nothing mentioned. This year two children at a local high school here in town (Ravenwood) lost their lives to leukemia. TWO!!! I never saw one story. You would think that the death of two high school students from the same high school with the same horrible disease would catch some type of media attention but it doesn’t.

In fact, does anyone reading this (other than the other cancer parents) know that this week was CureSearch’s march on Washington to try and raise awareness and money for childhood cancer.

Now I will admit I don’t watch a ton of news, but I haven’t seen a word. Not one word of the thousands of parents and children that are in Washington this week for childhood cancer. Many of these parents have lost a child to this disease. How many incredible stories are at that walk?? Now they will be sad stories, probably too sad for most of us to comfortably watch, but does that mean we just push them under the rug.

So, since the news media won’t report it I guess it is left to us cancer parents to spread the word. Days like yesterday renew me that we have to make a difference - we have to change this. We can’t keep having our children die or be disabled by the harsh treatments of cancer.

So, Farrah Fawcett and Michael Jackson died yesterday - Farrah from cancer and Michael from cardiac arrest. However, on Wednesday a seven year old little boy here in Nashville named Nate Richard died. He was diagnosed in 2007 with ALL (the same diagnosis as Lily). He completed his intense treatment and has been doing very well in maintenance. Last week due to the low blood counts you must maintain even during maintenance therapy to treat leukemia he got a infection. They admitted him to the hospital as they have done so many children with cancer for 48 hours of antibiotics. He continued to get worse and worse. Then finally he went into cardiac arrest (The heart is often weakened by the chemo). He then died at around noon. Another precious life lost. Cut short.

Now, he and all the kids at Vandy and throughout the country battling this disease are my true heros. They are the people that need attention and money to find them a cure. And a cure that not just allows them to live but one that allows them to live full lives. Too many kids are significantly impaired by these treatments.

Well, ok to bring this full circle. One of the greatest Michael Jackson songs was “We Are the World.” Yesterday as I was driving the only songs any radio station was playing were Michael Jackson ones. Yes, we had Thriller when we were little and I can still remember my brother moonwalking across the living room (I may have joined in every now and then). And yes Michael Jackson did get wierd later on but we will just remember the earlier less strange years for purposes of this post

However, who can forget “We Are the World.” You had so many big stars singing. I think it was for the kids in Africa and hunger, but yesterday as I was listening to the song I realized how true the words were for childhood cancer too.

The children are the world. They are our future. What we need to do is focus on them and start giving them the future they deserve. Because it is SO TRUE that “Change will only come when we stand together as one.”

Here are the words

WE ARE THE WORLD

There comes a time
When we heed a certain call
When the world must come together as one
There are people dying
And it’s time to lend a hand to life
The greatest gift of all

We can’t go on
Pretending day by day
That someone, somewhere will soon make a change
We are all a part of
God’s great big family
And the truth, you know love is all we need

[Chorus]
We are the world
We are the children
We are the ones who make a brighter day
So let’s start giving
There’s a choice we’re making
We’re saving our own lives
It’s true we’ll make a better day
Just you and me

Send them your heart
So they’ll know that someone cares
And their lives will be stronger and free
As God has shown us by turning stone to bread
So we all must lend a helping hand

[Chorus]
We are the world
We are the children
We are the ones who make a brighter day
So let’s start giving
There’s a choice we’re making
We’re saving our own lives
It’s true we’ll make a better day
Just you and me

When you’re down and out
There seems no hope at all
But if you just believe
There’s no way we can fall
Well, well, well, well, let us realize
That a change will only come
When we stand together as one

[Chorus]
We are the world
We are the children
We are the ones who make a brighter day
So let’s start giving
There’s a choice we’re making
We’re saving our own lives
It’s true we’ll make a better day
Just you and me

Can you read that and NOT do everything you possibly can to find a cure for childhood cancer?

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I haven’t written anything on my blog for many weeks. I remember that for a couple years running I averaged writing 2-3 posts each day. All the topics I used to be so passionate about - politics, education, social issues - are no longer that important to me. Since I can’t really seem to stay on one topic for long, I will just write a series of disjointed thoughts and wonderings.

I can’t stand to watch the national news on TV. If Ron watches CNN or MSNBC, I generally will either leave the room or else tune it out by reading or working on the computer.

I looked at Lily today and I couldn’t even visualize what she looked like pre-leukemia. She felt good today, and we had a good time. However, she’s so terribly thin, her hair has started growing back, and it’s about an eight of an inch long all over. Most kids don’t lose their hair the first month of ALL treatment - but Lily did. Then most kids DO lose their hair within a couple weeks of starting the chemo phase she started several weeks ago, and she didn’t. She’ll likely lose it all again within the next few weeks, though. Then when she starts long term maintenance, it should start growing back for good.

School is out for the summer. A little over ten weeks of freedom. For the first time in memory, I have absolutely no plans for a vacation trip of any kind. No desire for a vacation either. I will spend time at home - trying to have a sort of rhythm to my days. I will spend some time visiting my mother. And I will spend time with my husband, children and grandchildren. I hope that in the summer of 2010, our little family - Ron, me, kids and grandkids - can go to the beach again for a week.

As the weeks and months have passed since Lily was diagnosed, I’ve come to understand that this has changed our family forever. Each of our lives has been impacted in ways we never imagined. The fear of cancer - of relapse - will never go away.

It’s a strange feeling - a combination of envy, anger, sadness and acceptance - when I see healthy children - children playing sports, children talking of going on family vacations, children with beautiful hair. Today I watched as Lily helped to administer antibiotics into her port. She pushed the syringe a little and then drew it back until she saw blood begin to flow (indicating it was working) and then pushed the rest of the solution into the port. An 8-year old who is comfortable - even eager to demonstrate her ability - with injecting medication into a port that’s been surgically installed under her skin with a line going into the veins around her heart. Incredible. Inspiring. Sad.

I wonder when the “buyer’s remorse” that is inevitable with our new president will begin to set in for the folks who thought he was the answer to all their woes. What a disaster of policies the man has made. The absolute blindness of so many in the MSM and on the left no longer amazes me. It’s just wrong.

Larisa and Steve are thinking about getting Rosie certified as a “companion dog.” It wouldn’t be a difficult process, and then Rosie could go with Lily to school, shopping - really anywhere Lily goes, Rosie could accompany her. In the ER the other night, I watched helplessly as Lily cried for Rosie and cried, “I want to go home.” It was heartbreaking. It was one of those times, I thought of all the millions of children asleep in their own home - healthy - who had no idea of what a blessing it is to sleep in one’s own bed.

I attended Sophie’s kindergarten graduation program. It wasn’t really a graduation - just a program for parents and grandparents on the last day of school. Sophie, the precocious and funny little sister who has had to grow up quickly the past few months. Sophie, the child that just cracks me up with her humor and remarks. Today, Ron was trying to get the mule to work. He finally got it to start running but when he shifted gears, it died again. He let out his anger - keeping it clean since the grandgirls were there. Sophie looked at him, “Papa, are you frustrated?” Yes, he was.

It is interesting to me how consumed I am with this whole leukemia business. I am obsessed with checking Lily’s Caringbridge site. I read every comment people leave. It doesn’t matter if I’ve been with Larisa, Steve, Sophie and Lily all day, if Larisa makes a new post on the CB site, I rush to read it immediately. I check the leukemia discussion boards numerous times every day.

I have an addictive/obsessive personality. It is fortunate that I’ve never much cared for the taste of alcohol or cigarettes. So my addictions go to other things instead. When Lily and Sophie spent the night with us a few months ago, they had some homemade gift soaps that someone had sent them. They loved the soaps - setting them out along the edge of the tub, and then spending more time selecting which soaps to use during their bath than the actual bath took. So I looked into how to make soap. With a “melt and pour” soap base, it is easy and fast. I ordered the supplies - lots of supplies. And since they arrived just yesterday, I’ve made four or five batches of soap - experimenting with different colors and scents. Then today the girls and I made three batches. So my obsession for now is making soap. This will probably last a few weeks, and then I’ll move onto a new obsession. Last summer I was obsessed with making jams.

I’m not an animal person. I’ve never enjoyed having pets. However, I have really enjoyed the two kittens that Terry and Sheila gave us last month. They are such a joy to watch. They get along well with Jake - they all seem to enjoy being together.

I had four moles removed from my body during spring break. “Removed” is a gentle word for what was done. Actually they were sliced off my body. All four were biopsied. Two were fine. One was “mildly abnormal,” and another was “moderately abnormal.” I had an appointment to have more tissue from around the moderately abnormal one removed this past Monday. However, as it turned out, Lily was in the hospital that day and I was needed to take care of Sophie. So I called to reschedule. The earliest appointment was over a month away. The doctor only does “surgery” on Mondays. I don’t want to wait that long. So I’m looking for a new dermatologist. I didn’t like the one I went to anyway. She looked like she was about 15 years old, and she didn’t inspire confidence at all. Of course my dentist is “Dr. Missy” - so I have other young doctors as well. I guess I’m getting to the age where just about all doctors are younger than me.

Speaking of Dr. Missy, I’m scheduled on Tuesday for her to do some complicated work on my front teeth. I don’t feel particularly confident about her either. I wanted to have “sedation dentistry” for the dental work on Tuesday, but with all the crap going on in our family, there is no one to go with me to drive me home. And Ron will be out of town. So I guess I’ll tell Dr. Missy to go heavy on the nitrous oxide instead. Then I think I’m such a wimp. If Lily can go through all the medical stuff she has to go through, then I can certainly get through a little dental work without making a fuss.

Speaking of my current obsession, I’ve been planning my next batch of soap. I’m going to blend some oatmeal into a powder, buy some almond oil, and then Ill make a batch of oatmeal/almond soap. I will peruse the grocery store the next time I go to see which herbs, spices and other ingredients I can find that I can use with soap. Don’t ask me what I plan to do with all this soap. I’ll use it, of course. . . . eventually. It will last a long time. Especially considering that after making those batches yesterday, I ordered more supplies.

One goal for the summer is to have more “rhythm” to our lives - a regular dinner, keeping up with chores around the house, going for a long walk each day. I just can’t handle working full time and then doing things at home in the evenings. So things around the house have fallen by the wayside over the school year. It’ll be nice to have a slower pace and a peaceful rhythm to our lives for awhile.

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