Monday, September 28, 2009

Baby Reef

September is Childhood Cancer Awareness month, and as a way to help raise awareness, I wanted to share a story of at least one child affected by this horrible disease. I've written before about my friend's child, Braeden, who recently passed away from Neuroblastoma. Now I want to introduce you to Baby Reef, a baby with Acute Lymphoblastic (sometimes known as Lymphocytic) Leukemia, which is a cancer of the white blood cells.

I could tell you what I know, but I thought it would be best if someone close to Reef told his story in their own words. Here is what Reef's grandmother wrote, in her own words:

"Baby Reef was diagnosed with ALL at the age of 5 months. A seemingly normal, healthy baby, who, at his 6 monthly checkup was diagnosed and sent immediately to the pediatric oncology unit. I cannot begin to explain the complete and utter devastation to our family. Reef is our only grandchild and a joy to anyone who has met him. He has smiled his way through 7 months of grueling chemotherapy and now, at the age of 11 months is in total isolation having his bone marrow killed off in readiness for a bone marrow transplant (this took place on 8th September, 2009).

This precious little baby has been through renal failure and dialysis, seizures, infections, port insertion and now Hickman and central line insertion. He has been admitted to I.C.U. three times in his short life and this has been the worst emotional roller coaster any family could go through.

All the brave little cancer victims we have made contact with through the many hospitals Reef has been in have touched our very souls. All the parents having the same expression of hope, misery, hurt and expectation in their eyes, all understanding just what the other is going through.

Please pray for this little angel."

I also wanted to share the letter Reef's Uncle and Godfather wrote about him:

Faith in the face of adversity” was the first thing I had inked into my flesh. It popped into my head, whilst doodling. And I thought nothing of it but I knew I needed to make it a part of myself. I don’t think I had fully appreciated the full extent of the commitment I was making to myself, to God, to you.

I stand here on the precipice of tragedy clinging to hope, holding strong to my faith.

Nothing has touched my soul more then the feeling of holding you in my arms and seeing you smile at me. It is something etched into the core of my being.

But the words that crept from behind a pair of tight cold lips, one normal Friday afternoon in a badly lit hospital ward, have forever changed me. 33 days ago I was locked out of your life with only images of you smiling at me behind the glass of my cell phone. Days ran into days, and as they did the images I received transformed, as one by one the pipes and tubes were removed to reveal the child I saw enter that isolated dark place.

A week ago, I got to hold you. You smile at me. You laugh and hide your head under that little blanket, pulling it off, smiling thumping your feet, but there is lead that runs through my veins and into my already heavy heart. That behind that beautiful smile rests something I cant fix, something I cant change.

I can’t let them see I am affected. I am told I need to be strong. The sound of your mobile brings me to my knees. The soft chimes echo in my head coupled with the thought of my big brother singing happy birthday to a boy I love, as he turns 6 months old, behind the closed door of a ward. You are wheeled off to have marrow extracted from your already scarred tiny body. One day when the other children ask you where you got the marks from, they won’t know what it took to get there.

This is not the end, I wish I could put my hand on you tell you the pain will stop, that all will be ok. But I cant. The road is long and you have taught me so much without being able to say a word.

As i write this i know, remission is only the beginning, you are almost there if not there already. But it means the doors will close again and I will see you through the glass of my phone for years to come. Will you remember me when this is done? Will I be a person you would want to know? Will you still smile? I don’t know if I will be able to keep the promise I made you when that needle cut the commitment into my skin but I know now that when I did it, I did it for you, even though you were not yet with me.

Reef I Love You. I will see you again a long time from now, not as just a beautiful face behind a tiny piece of glass. I will be able to give you my hand and I will show you all you could not see from the room you will have spent so many days in and that is one promise I will keep."

There are so many other children like Reef and Braeden. 36 more kids will be diagnosed with cancer today, 36 more tomorrow...and the next day, and the next, and the next. I could go on and on, but I think you get the point.

**If you want an easy way to help, go to Chili's Bar and Grill today, September 28, for lunch, dinner or even just a snack. 100% of the profits will go to St. Jude's Children's Hospital to help fun childhood cancer research.****

Saturday, September 12, 2009

Get Your Gold On

September is Childhood Cancer Awareness Month, and today, September 12, 2009, is Childhood Cancer Awareness Day. I wanted to have a post written and up this morning, but life is just crazy busy right now and this is the first chance I've had to sit down and write anything.

If you've read my blog before, you already know that cancer is one of my biggest causes, especially when it comes to children. You also probably know that one of my closest friends from childhood recently lost her 3 year old son to Neuroblastoma. This is a friend I just reconnected with last October, just about two weeks after I wrote a post about Childhood Cancer Awareness month. I thought it only appropriate to repost it today, updating it with some current information and some pictures. I didn't include any pictures when I wrote that blog, because I didn't personally know anyone who had a child with cancer. Sadly, that is no longer true.

Here is what I wrote last September:

Last week I posted some thoughts about cancer, just after watching the Stand up 2 Cancer special on t.v. When I posted my thoughts, I didn't realize that September is Childhood Cancer Awareness Month. Since so much attention is often given to adults with cancer, I feel it is important that we not forget there are children fighting this disease as well.

Here are some childhood cancer statistics:

  • On the average 12,500 children and teens will be diagnosed with some form of cancer each year in this country.
  • Each school day, 36 children are diagnosed with cancer.
  • One in 330 children will develop cancer by age 20.
  • Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.
  • Cancer remains the #1 disease killer of America's children - more than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
  • In the U.S. almost 3,000 children do not survive cancer each year.
  • Over the past two decades, only ONE new cancer drug has been approved for pediatric use.
  • Currently there are between 30-40,000 children undergoing cancer treatment in the U.S.
  • As a nation, we spend over $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer Research each year.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.
  • Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.
Updated for 2009:

There is a great way for people to get involved that don't otherwise know how to help. On September 28, Chili's Grill and Bar is donating 100% of their sales to St. Jude's Children's Research Hospital. Take a night off from cooking and cleaning dishes and go to Chili's for dinner. You will be helping a great cause and getting a good meal too!

You can also visit Chili's any day during September and can contribute to St. Jude in multiple ways:
  • Make a donation to St. Jude and receive a Create-A-Pepper chili pepper coloring sheet. Decorated sheets will be displayed in restaurants nationwide throughout September.
  • Purchase Create-A-Pepper T-shirts that can be customized with permanent marker.
  • Buy a customized Create-A-Pepper key that can be cut for use at home or the office..
  • Visit to make an online donation.
There are so many other ways you can help. Give up a little bit of your lunch money and donate to Lunch for Life, which raises money for the Children's Neuroblastoma Cancer Foundation. Help to spread cheer by volunteering at a local children's hospital. Prepare meals or help provide childcare for families who have children in the hospital or sick at home. Donate blood or bone marrow. Or just simply take the time to help raise awareness. For starters, get your gold on this month. If you don't own any gold clothing, go to your local fabric store and buy some gold ribbon. Spread the word on Twitter or Facebook. Write about cancer on your blog. Just taking the time to do something so simple can help more than you can possibly know. DO IT.

I am hoping to share some stories about children with cancer this month to help raise awareness and put a face to this horrible disease. I already have a couple of stories in the works. If you know anyone who would like to share their story, please send me an email. I am more than willing to talk about these cancer warriors and give them the spotlight they deserve. I only wish I could do more.

**Other sites to visit:

Friday, September 11, 2009


Photo by Derek Jensen (Tysto), 2004-September-11

For years I've sheltered my girls from seeing the news, typically because there is just one bad story after another. I didn't want them to know that the world wasn't all unicorns and princesses, and that life generally isn't a fairy tale. However, they are becoming old enough to know better, that the world isn't always so nice.

My need to shelter them from the news started when I had the TV on during the aftermath of Hurricane Katrina. Kiki was four and had been playing in the next room. I didn't think much of what was on TV because after all, they were just talking about weather, and she never seemed to pay attention when the news was on anyway. Kiki had been singing and playing and then all of the sudden she was quiet. When a normally not so quiet child becomes quiet, that usually means trouble, so I looked over to see what she was doing. She had walked into the family room and was standing just staring at the TV. Before I could turn the TV off or do anything, she asked "why are people standing on their houses, Mommy?" I found the remote and quickly turned it off, and told her not to worry about it, that it was just a TV show. She wasn't buying it. "Mommy, what's a hurricane? Can a hurricane come to our house? Are we going to lose our house too?" Obviously she picked up on more than I had realized. All of that time she was playing and singing she was also listening.

I decided then that I would never have the news on in the house when the girls were awake. To me it just wasn't worth the risk. However, I knew that I couldn't do this forever, that eventually they would go to school and would hear other kids talking about events on the news. So I've slowly and selectively allowed them to see some news stories I thought they could handle, with me sitting with them and explaining it to them. There is only one topic I've completely avoided: September 11, 2001.

I have really grappled with how to explain this day to them. First of all, on September 11, you can't really turn the news on without media showing the images over and over (and over and over and over), and that is definitely something I am not sure I want them to see just yet. But I know they are going to hear about it eventually, and it could very well be on the school bus. I know the school celebrates Patriot Day and the children are encouraged to wear red, white and blue that day. Last year I know they were not told the purpose behind Patriot Day; Boo was just a Kindergartener, and Kiki was in second grade. I asked the teachers and found the kids were not told anything about 9-11 specifically, but that the focus was more on celebrating our country's heroes - police officers, fire fighters, rescue workers, and of course, our soldiers. The girls decorated flags, sang patriotic songs, etc., but not much else.

I know the time is coming though, especially for Kiki, who is now in third grade. If I don't tell her about it, she is going to learn about it on the school bus, the playground or in the cafeteria. Or it may be that she learns about it from her teacher, which would be better than hearing about it from another child. I know her teacher would tell about the events less dramatically, and much more factually, than a nine year old child. I worry some, because Kiki tends to internalize these types of things. She often shows empathy and even cries when she hears about people who suffer. She thinks about stuff like this for days, and wants to know as much detail about it as we will tell her. I also know that she would worry this type of thing could happen again.

How do you tell your children about something like this? Eventually all children know that there are "bad guys." This is evident whenever you visit any playground and spend some time watching children playing games like cops and robbers. Our girls know first hand about some of those "bad guys" since some of those very types of hooligans broke into their cousins' house and stole their electronic toys and Halloween candy. I've warned them about the dangers of strangers and how important it is to stick close to Mommy and Daddy when out in public. They even know the sadness of stuff like kids who are sick and even sometimes die from cancer.

But how do you explain the events of September 11, 2001? How do you tell them there are people so mean in our world that they wanted to kill thousands of people in one day? That they wanted to blow up buildings and airplanes, and take away lots of mommies and daddies, all because they hate us so much? I can't even begin to think of how to tell them.

I do know I want to tell them the gentlest way I can, and focus more on the heroism of that day, than the horror. Teach them that we should always honor and respect our soldiers, police officers, firefighters, rescue workers, and everyone else who puts themselves before others. After all, isn't that what we should all remember about this day? That in the face of adversity, our country stood UNITED and refused to let the meanies win.