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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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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Calling all bloggers! We need to reach more people to help spread the word about the need to fund research on childhood cancer. This is very personal to me. Lily is my precious 7-year old granddaughter that I love more than anything in the world. My heart is broken at what she is going through - what so many children are going through. As a nation, we HAVE to make finding a cure for childhood cancer a priority. We HAVE to protect our most vulnerable - our children!

Here is a button you are welcome to use. Put it in your sidebar and link it the http://lilysgarden.org. Write a post about Lily’s Garden.

I also invite you to join the “Lily’s Garden” cause on Facebook - and invite all your readers to do the same.

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Doesn’t it warm your heart that part of Obama’s economic “stimulus” package includes $75 million for smoking cessation research?

I’m still looking to see how much is being given to fund CHILDHOOD CANCER RESEARCH.

So while we have thousands of children suffering through painful and grueling treatment for cancer, we are spending tax money on things such as:

$75 million for smoking cessation research

Amtrak gets $1 billion (Amtrak hasn’t turned a profit in 40 years!)

$50 million for the National Endowment for the Arts

$650 million (in addition to the billions already doled out) for digital TV conversion coupons.

$600 million for the federal government to BUY NEW CARS!

$7 BILLION to “modernize” federal buildings and facilities.

$150 for the Smithsonian. I’m wondering how that will stimulate the economy?

I think President Obama and every single United States Senator and Representative should be required to spend a day with a child who is battling childhood cancer.

There’s Lily - who two month ago was running and playing with her friends. Then she was diagnosed with Acute Lymphocytic Leukemia on December 1, 2008. Now she spends her days going to physical thereapy because she has trouble walking - will likely need leg braces soon. She can’t run or skip - not because she doesn’t want to. She is physically unable to.

She actually is cancer-free right now. However, in order to KEEP her cancer-free, she must continue to endure chemotherapy for more than two more years. And the poisonous chemotherapy is what is causing these horrible side effects. We are POISONING our children because we HAVE to in order to give them a chance at living. There has to be a more humane way to successfully treat cancer in children.

These are our CHILDREN. Our FUTURE. They never smoked a cigarette. They don’t want a new car. They could care less if our federal buildings are “modernized.” All they want is to be able to live a “normal” life - to go to school, to be with their friends, to ride a bike, to run and skip. It is a national disgrace that we are not POURING federal funds into finding a cure for childhood cancers.

It’s true that you can tell a lot about a civilization by the way it treats its most vulnerable members. And our federal government is abysmally failing the test of being “civilized.”

Visit Lily’s Garden.

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So today RT and I ate at a small local restaurant after church, and I gave the cashier one of Lily’s wristbands and told her that Lily had been diagnosed with leukemia last month. She then proceeded to tell us a story that she felt would “give us hope.”

The story was that when she was four years old (probably about 40 years ago - she looked to be in her 40’s), she was diagnosed with leukemia. Her parents cried and prayed to God and then got angry. They told God that he had promised he wouldn’t give them anything they couldn’t handle, and they told Him that they couldn’t handle having a child with leukemia. So two weeks later, they went back to the doctor who discovered that it wasn’t leukemia after all - it was mono and the flu (or some two illnesses - can’t remember exactly) at the same time that ended up having the same symptoms as leukemia. Poof! no leukemia.

Okay, folks. Would THAT story give anyone HOPE? So she’s basically saying that perhaps if Larisa and Steven had prayed to God and said they couldn’t handle this, then God would’ve said, “Oops, I’m sorry. I picked the wrong child to give leukemia to. Let me look around for someone who can handle it.” What a stupid thing for someone to say.

I think of the absolute hell that Larisa and Steve and Lily and Sophie are going through - along with the absolute hell that so many other families are going through as their children battle cancer - and then to have some moron say “my parents told God they couldn’t handle leukemia, and guess what? He took the leukemia away” - it’s just so incredible insensitive and stupid. As though ANY parent wouldn’t do anything in their power to take this awful disease for their child. To even imply that praying was all that was necessary to get rid of the disease. It’s not a story of hope, but rather of an incompetent doctor and idiot parents.

Then after we got our lunch and went to our table, one of the cooks came out to tell us this long, long story about some child she knew who had a brain tumor and yada, yada, yada - all the while we’re sitting there - food in front of us - waiting for her to shut up and leave so we can eat our lunch.

I’m sure I will be told that we just have to be more forgiving and accepting of people. People don’t know what to say and so they sometimes say things that are less than sensitive. True, true, true. I was very polite to both women. They both wanted to wear Lily’s bracelets, and they both said they’d pray for Lily every day. And I truly appreciate their prayers - and the sentiments behind the sharing of their stories.

Still, I won’t be returning to that particular restaurant - and I still believe that the first lady’s comments rank at the top of the “stupidest thing anyone’s ever said to someone with a child battling cancer” list.

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Lily actually went to school for two hours yesterday! We did not think she’d be able to return to school at all this school year. She was thrilled, and she loved it. She starts a more intense phase of chemo in less than two weeks. So the school visit was something the doctors suggested she do in order to have as much normalcy as possible before she has to be restricted again.

Who would’ve ever thought a couple months ago that going to school for a couple of hours would be such a monumental treat?

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Lily’s Garden is my granddaughter’s website. We’re working to get the word to as many people as possible that childhood cancer research is majorly underfunded, and that has to change.

I challenge any politician to go to a children’s cancer ward of a hospital. Spend some time there. Talk with the parents. Talk with the children. Then go back to your law- and policy-making business and DO something to change things. There is a cure somewhere. There is a prevention somewhere. We just have to raise enough money to provide the research necessary to find them.

Just spend a small fraction of what you’re dishing out to poorly managed companies, or what you’re giving to ANIMAL DISEASE research, or what’s being spent on conservation, and that should do the trick. It truly is a national disgrace that we spend so little to save our most important national resource - our children.

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Okay, I NEVER send or forward those “send to ten friends” type emails, and this post is NOT one of them. This is a personal request.

Since my 7-year old granddaughter, Lily, was diagnosed with Pre-B ALL (Acute Lymphocytic Leukemia) on December 1, 2008, our family has been reading a lot about childhood cancer and the research into finding cures. There’s not much funding for childhood cancer research.

Each school day, 46 children (two classrooms full!) are diagnosed with some form of cancer. In the past three days TWO children whose cancer journeys I’ve been following have died. A two year old named Kayla, and a 5-year old named Addison. Addison had the same kind of leukemia as Lily - had a positive prognosis, but then caught a bug and she couldn’t overcome it. Addison is the one that when Lily was first diagnosed, the doctor told my daughter they needed to get to know her because she was doing so well and would provide such encouragement for them. And then just a few weeks later, she is gone.

Finding a cure for childhood cancer is a life-or-death issue. Just take a brief trip to a children’s oncology hall at a hospital, and your own life will never be the same. These children can’t advocate for themselves because they’re literally fighting for their lives. It is up to us to be their advocates. So you can start by doing the following:

(1) Go to this web address: Citizen’s Briefing Book
(2) In the search box, type “childhood cancer”
(3) Click on the top item “Increased Funding for Childhood Cancer” (The one that was posted at 4:02 P.M.)
(4) Click on the “Vote UP” button. If you don’t already have an account, you will have to create an account. However, it’s free, and it’s quick - and the effort is worth it.
(5) You can read the letter along with the comments. You can log in or create an account if you would like to leave your own comment.

IT IS VITALLY IMPORTANT TO FUND RESEARCH TO FIND A CURE FOR CHILDHOOD CANCER.

The purpose of the “Citizen’s Briefing Book” in the link above is to bring attention to President Elect Obama so that he will hopefully make childhood cancer research a priority. Each small effort helps. Take a few minutes out of your busy day to make a difference for these wonderful children whose futures are in jeopardy.

Lily’s story was on Townhall.com on Monday. Here’s the link: Learning About Leukemia

Here is Lily’s website. Come visit, read her story, make a donation and offer some support: Lily’s Garden

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It was just a few weeks ago - probably mid to late November that I was driving along and thinking about my family and about how nothing really bad had ever happened to me or my immediate family. My father died in 1986. It was definitely bad and I miss him every day of my life. However, he’d had a couple heart attacks before his death, and had had bypass heart surgery. So, although his death was sudden, at age 67 and after his heart history, it wasn’t completely unexpected. And it was 22 years ago. Since then I’ve had 22 years of pretty smooth sailing in terms of really bad things. Yes, there have been a couple other hard and heart-breaking times during those 22 years. However, nothing life-threatening.

The thought I had that day as I drove along is that my luck in life was bound to change - and that every day I lived I came closer to the time of that change. Yes, I was being morbid - but I frequently am. So that’s nothing new. Also, Lily had been experiencing pains in her back and in her legs. Her description of the pain reminded me of a friend of mine years ago whose son was later diagnosed with non-Hodgkins Lymphoma. His primary symptoms were excruciating pain in his legs. So, yes, the thought of cancer crossed my mind more than once before Lily’s diagnosis. Her paleness, the bruises, the pains. However, as is our nature, we push those thoughts away. It couldn’t be cancer. I was just being paranoid. She just had the flu or a nasty lingering infection. After all, she’d been to the pediatrician several times, and nothing serious had been found.

So, I wondered those few weeks ago, what would be the first really bad thing to happen to our family. The thought must have made an impression on me at the time because I know exactly where I was when I thought about it - the road and the exact location on that road. I thought at the time that it would probably be the death of either myself or one of my siblings. Several of us have had some minor health problems - not life-threatening, but not a walk in the park either. We’re all in our fifties or sixties - most of us are overweight and don’t exercise enough. The law of averages is not on our side.

Then December 1, 2008 arrived, and Lily was diagnosed with acute lymphocytic leukemia, and the first really bad thing to happen to me in 22 years arrived. I look at the main photo of Lily on her CaringBridge site, and I remember that I took that picture. It was in the fall - mid October, I believe, and we had gone to Pinkerton Park in Franklin for a picnic - PaPa, Lily, Sophie and me. I had taken my camera and I took lots of pictures that day. I wonder now if the leukemia was already in her at that time. It very well could have been - or perhaps that was one of her last pre-leukemia days. Her serious symptoms started about a month later, and she was diagnosed about 6 weeks after that photo was taken. What caused her cells to suddenly stop maturing properly. What was the catalyst that caused the leukemia to begin? Those answers we’ll never know.

There are defining dates in each person’s life. There are many happy dates, of course, but there are also those dates when something life-changingly bad happend. For me there are two dates that will be forever etched in my mind: December 3, 1986 when my father died, and December 1, 2008 when Lily was diagnosed with ALL.

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