Through emotional words, I’ve heard the pleas from parents of childhood cancer patients. The words express the outrage, abandonment, confusion, and sadness about people not seeing what’s happening to their child. And they are not wrong. The world by in large ignores childhood cancer; sweeps it under the rug. But like many tragedies of our world, it isn’t in the conversation – and when it is, it’s the wrong story. I’m here to say, change the story!

The vast majority of childhood cancer organizations don’t play well together – the national push to collaborate is in its early stages, but even in this stage you can easily see how broken the entire community is. I often ask myself, what are we missing? Why can’t we all come together and create urgency in this cause? The strength of a child whose body is weak from chemo and constant vomiting can muster up the strength to kick my butt in almost every board game invented – how is it a bunch of adults can’t come together and agree to work together?

The community is envious of other causes whose urgency is raised in the eyes of government and the pharmaceutical industry. They become bitter when NFL players all have pink ribbons for breast cancer. What is the community missing? Well, I think it’s simple. They spend a ton of time ignoring the fact that other causes have reached out to teams of professionals and literally changed their story. They ignited a fire in millions of people whose conversation topics became the cause and therefore created a grassroots movement.

Somewhere, somehow people got the wrong impression about children with cancer. First, they assumed that 75-80% of children are cured of their cancer. WRONG. Second, they are meant to believe that these children get adequate care and it’s just a tough thing they forced to go through – also WRONG. In the last 50 years, there has only been one drug approved by the FDA to treat one type of childhood cancer. The survival rate is not the majority especially when you consider the amount of long-term side effects of the treatment and secondary cancers.

Change the story. Create urgency. Call on the professionals who have spent their lifetimes understanding how this is done successfully. Work together with other childhood cancer organizations and combine efforts and funds to HIRE the resources to start conversations, change hearts, and clear the air from myths and wrong facts. If this could happen, the outcome would be different. Some people dislike my candor on the matter, but I owe those kids who have to take their life day-by-day hoping they get another chance at a healthy life. I got a lot of fight in me, and it’s time to make it a reality.

After literally almost a year in silence as to what I am working on in the Childhood Cancer space, I am finally ready to make it public – and I’m excited!

When thousands of children every year are diagnosed with childhood cancer across the United States they are thrown into a battle for survival.  Their families are faced with a whirlwind of decisions to make for treatment, financial logistics, and emotional support.  All too often they find a lack of information.

For years the major players within childhood cancer non-profits have attempted to form coalitions and alliances to unite the childhood cancer community – both on message and on initiatives.  Many of these efforts have failed, but a few are finally starting to gain momentum.

I happen to believe that a national united effort can be empowered when it’s supported by statewide or regional coalitions; and it turns out I wasn’t alone.  I have joined efforts with a team of people who are helping to unite the childhood cancer community by helping build statewide coalitions.  This project, entitled Gold Force is focused on helping locate resources and recruiting people to create statewide coalitions.

Gold Force is an independent project (separate from any 501c3) that offers structure, advisors, and support for volunteers in each state who are dedicated to building collaborations in their area.

This is a huge undertaking – especially for states like California or Texas (the size of the state and number of resources) but I believe that by following Colorado and Tennessee (who have already setup coalitions similar to this successfully) that it can be done and the results are most impressive.  The best thing we can offer the children and families facing childhood cancer is a coordinated hub of information and established relationships that can provide this vital information.

Although this project might separate me from the connection with the kids and families (because literally I will be hiding behind a mountain of paperwork, conference calls, and online logistics) a bit more than I’d like, I know it will serve a greater purpose and the largest amount of kiddos!

If you can help or get involved, please contact me! We need the help.

In a perfect world kids wouldn’t get cancer. But we don’t live in a perfect world. I’ve asked myself over and over, am I up trying to fix something that cannot be fixed? The answer is no – it can be fixed. Research in the past thirty years has proven just that. Survival rates are so much higher than they used to be. But wait…research did not save Amanda Peebles (her picture is above). Her life was cut short at 12 years old due to a lack of research, a lack of a cure. How sad it is that she and her family were told that nothing more could be done?

We are coming up on the one year mark of Amanda’s passing. I remember her each day. Amanda was a girl who knew and observed what others were struggling with; very rarely did she ever focus on herself. I used to sit with her and play while she was at the hospital – we got some pretty good use out of a fake cash register and plastic credit cards, playing store (she always enjoyed keeping flawless paperwork of your charges). When she would get sick, you saw it in her eyes – she would be sparkling with excitement with an enormous smile and it would suddenly change. Her eyes would look away and she’d fight the feeling of nausea. Finally she would calmly say, “I don’t think I can play anymore”. Amanda would apologize for not being able to continue having fun – she felt bad she couldn’t be happier while I was there. She wanted to make sure I had a good time.

The pain is not mine alone – it is shared by her sister, her brother, and her parents. Amanda’s journey impacted their lives forever. I see how amazing her older sister is and the path that she must continue without her sister. She is an example to me in every way. Her mother has been at every event possible, helping to continue this fight. It is incredible to see the strength they have.

I am continuing to do what I can. In several months I will be launching a new effort with a refreshing direction of funding the cure for childhood cancer. It will be a product of my experiences the past few years in this community. In Amanda’s honor, I will do what I can to make sure another family get’s more time with their child.

I want your help. I need your help. Your ideas, thoughts, experiences, and knowledge can help me continue to grow this effort. Please contact me if you have a desire to help me and these kids. I can’t save Amanda, almost a year ago I said my final goodbye to her, but her life changed mine and I can’t avoid doing all I can. She lives on through mine and your actions to save others.

Please contact me at 858-212-2191 or email at j@jeremybliler.com to be a resource for my new ventures.

The art of collaboration is humbling. When thousands or even millions of people unite to achieve the same outcome it is a tricky combination of luck, strategy, and sacrifice. I spend a lot of effort working with the childhood cancer cause. However, you may notice that there is no leader in Childhood Cancer awareness or support. When asked to list the number one organization in this cause you might be quick to say, “St Jude’s Children’s Research Hospital” or “American Cancer Society”. These are both fine organizations but they are not major players in pediatric cancer when you boil down the numbers.

The cause of curing Childhood Cancer is not ubiquitous in our culture. Many people know that kids get cancer. They do not know how much funding fails to go towards curing it. More money has been spent to solve poverty, homelessness, and environmentalism in the past month than there has been towards childhood cancer in the past decades.

Let’s discuss for a second the culture inside the cause – the hundreds of organizations that are 501c3 non-profits working to help patients and families with Childhood Cancer. I will only talk about my personal experience because that is all I can speak accurately about. The cause is competitive, it’s distilled, and it’s got a million different directions. Unlike Breast Cancer, Autism, Aids, and other causes, Childhood Cancer has not managed to unite in branding – it is not backed by one message and a united group of non-profits working towards the same cause.

I write this blog entry to let you all know of the realities of this community – I do what I can to unite these organizations but even I don’t have access to most of the people in this cause yet. I can only hope that the masses can come together and make this happen. It’s important to realize the reality of this cause and face the facts. What’s even more challenging is trying to explain this to a child and parent when they ask why so many people aren’t aware or aligned with the mission of curing and helping their child.

On the Friday following CureSearch’s Advocacy Days, the organization PAC2 (People Against Childhood Cancer) put on an all-day workshop for over 45 people involved in the Childhood Cancer cause. People came from all over the United States to attend this workshop and I was so humbled at the level of impact that was in this room.

Throughout the day discussions were held about many issues facing the Childhood Cancer community and about the brand, image, funding, and Childhood Cancer Awareness Month. It was the first effort to collaborate between foundations and unite for a National reach to Cure Childhood Cancer.

Can’t really discuss much but I know Bob (Founder of PAC2) is going to be sending out a formal brief of the contents discussed and the agenda items going forward so I will try to link to that message here.

Please join PAC2 and join the association of people who seek to find a cure and help these kids.

You can join by going here: http://curechildhoodcancer.ning.com/

My experience is like all too many others who have gone through this with cancer. I write about it because I hope that it will help motivate others to get involved, to make a difference and to be there for kids with cancer. However, I cannot even begin to claim an experience like those who have parented these amazing kids or those who endured so much more. My story about Amanda is just my experience and I hope that by writing this out I can encourage others to spend a little more time with their kids and helping those who battle cancer. It’s a small story in a world that is full of very strong people. I love and respect Amanda’s family and hope that I will always be a positive source of strength for them.

It is so hard to say goodbye to someone…to know that their journey on this earth has ended. It’s even more difficult when it’s a 12 year old beautiful girl who has fought for her life every day for the last 3 years. So, it’s taken me awhile to recount my experience with Amanda and the last few days I saw her. I will do my best to do that now; I’m ready to tell the world about this Angel among us.

Amanda JoLynn Peebles was one of the strongest fighters cancer has ever known. She underwent two bone marrow transplants, chemotherapy, side effects, constant vomiting, and so much more. She fought for almost 3 years. I am fortunate to know many of these amazing childhood cancer heroes and by far Amanda’s story was plagued with some of the worst conditions, but she always had the best attitude. She was always happy.

My experience with her was only a small portion of her life and I am one of hundreds that she touched in a very magical, heartfelt way. But I can tell you that every moment I shared with her was incredible. From the time we went swimming at the Broomfield Recreation Center, to the two hour browsing experience in Toy’s R Us, it was all perfect. Amanda was so funny; she would love to watch others fall – and she would let out a laugh that you’d never forget. I remember one time I left the hospital to get her Burger King for dinner, and when I returned she was mid-conversation with someone on the phone. As she continued her conversation for 20 minutes I kept wondering who she was talking to. She finally hung up and started laughing hysterically; turns out she had been doing a series of prank phone calls with our friend Kennedy (who was also at the hospital) and had continued the ruse for almost 30 minutes. Amanda was one of a kind. She was so beautiful! Every picture I ever saw of her she was the most beautiful 12 year old, and her eyes and smile told a story. I only hope that as my life continues on that I can share her story with as many people as possible to let her fight be known, to let her experience continue to change the lives of others forever. It is impossible to write the many experiences I got to have with her; maybe someday I can in detail. As I think back, I am so lucky to be given the gift of knowing her.

I was fortunate to be in Denver 2 days before she passed. I caught a flight from San Diego and the following morning rushed to the hospital when ICU visiting hours opened. She was in bad shape when I arrived that morning but I got to spend some time with her and held her hand while nurses had to take care of her. I got to sit in the room for most of the day all the way till 7PM and while I sat there Amanda slept but would open her eyes every 30 minutes to check and see if I was still sitting there. I really felt like I was one of the luckiest people in the world to get to spend so much time with her so close to her departure from this earth. The next day, Friday, I went to the hospital in the evening and it was then that people were saying goodbye to her. I took a small turn and went into the ICU and sat near her bed. I went to talk to her and found myself unable to say anything. I couldn’t figure out what to say – holding back tears I finally was able to tell her thank you. I said thank you for the best times in my life, thank you for being such a great friend, and I told her that I would do anything to help her family and friends. I told her she was strong and I will always remember her strength. That was it – I ran out of words…so I spent the next several minutes just being with her and then left the ICU room so that others could say their goodbyes. I am strong during all this but at this moment I finally had reached my low – I was saying goodbye to one of my best friends. A girl who I had watched fight for her life every day. I owe a special Thank You to David, one of my close friends, for putting up with my breakdown when I left the ICU. This was the only time I’ve lost it around kids with cancer.

Amanda passed away Saturday evening at 6:45 PM on August 14th, 2010. I received a text message from Stacy that invited me down to the hospital that evening around 8PM. Amanda had been moved earlier that day to the 7th Floor (Oncology at Children’s Hospital) and I was able to see her family and hug Jayden (Amanda’s little brother), Tionna (Amanda’s older sister), Michelle (Amanda’s Mom), and Arlando (Amanda’s father). It was a time I will never forget. I was able to spend some time with Amanda and her family that night and she looked so peaceful, so beautiful. Her fever was finally gone, her fight was over, she no longer had sickness overtaking her body, she was free. It was reliving, but it was painful.

Her service was amazing – the perfect way to honor such an incredible god-given girl. I was really glad to be able to be around Donavan (Amanda’s boyfriend) who is also battling cancer. He is now one of my new friends in this world of cancer. I got to go up with Donavan to light a candle in Amanda’s memory. Amanda also had the gift of having one of the largest funeral processions I have ever seen. She was escorted by over 9 motorcycle police officers who led an uninterrupted procession to the cemetery. I was so glad that people all over Broomfield, Colorado could hear the sirens of her journey to her burial site.

That night I left Denver and flew to New York City (on a red-eye) for my brother’s Ring Weekend Ceremony at West Point and it finally all set-in. I was grieving the loss of one of the most incredible spirits I have ever met in my life. It will be a very long time before I am over this loss, but I know one thing for certain…I am the luckiest person alive to have been in her life. I thank God everyday for introducing me to her. I remember a lot of times as I would leave Amanda’s hospital room, she would mouth the words, “I love you”. Now, every day I look to the heavens and mouth the words “I love you Amanda” hoping she will hear me and know how thankful I am to have been a friend in her life.

Pictures of Amanda’s Service:

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Amanda Peebles, my friend passed away at The Children’s Hospital in Denver, Colorado on August 14, 2010 at 6:45 PM. I’m sure over time I will be able to write more details about my experiences and feelings about this. For now, I am posting services information for her viewing and Memorial Service. Please keep her family in your prayers.

Visitation: Date: Thursday, August 19, 2010
Time: 5 pm – 9 pm
Where: Rundus Funeral Home
1998 West 10th Avenue
Broomfield, CO 80020

Memorial Service: Date: Friday, August 20, 2010
Time: 1 pm
Where: Broomfield United Methodist Church
545 West 10th Avenue
Broomfield, CO 80020

Graveside Service: Date: Friday, August 20, 2010
Time: 2 pm
Where: Broomfield County Commons Cemetary
9th and Sheridan Blvd.
Broomfield, CO 80020

Reception: Date: Friday, August 20, 2010
Time: 3 pm
Where: Broomfield United Methodist Church
545 West 10th Avenue
Broomfield, CO 80020

The family requests that in lieu of flowers, donations be made to one of the following organizations. All are 501-(c)3 organizations registered with the IRS wherein donations are tax exempt for the donors. Make payable to and mail to:

“PEEBLES FAMILY FUND / THERE WITH CARE”
c/o There With Care
Attn. Paula DuPre’ Pesman
4949 North Broadway
Suite 124
Boulder, CO 80304

www.therewithcare.org
303-447-2273

“ANGELS FOR AMANDA”
c/o Coors Credit Union
816 Washington Avenue Golden, CO 80401

The family appreciates your concern and support during these difficult times. There home address is 377 Oak Lane Broomfield, CO 80020

My emotions are heavy during this update. It’s been a great month, don’t get me wrong. However, recently one of my closest friends, a childhood cancer patient, Amanda Peebles has been in the hospital and has been in the worst shape. I am torn – I love this girl so much, we’ve had so many great times. I see what she faces daily and I hurt for her, it’s not fair. I realize that it’s her choice to continue her battle or choose to leave this earth for a higher power and ultimately pain free. I was very lucky to have talked to hear daily for almost two weeks prior to her recent hospitalization, including many conversations at wee hours of the morning. I almost feel as if Amanda is partially my daughter. I can’t even tell you how much it hurts to experience this, but I love every minute of being close to her. I am working on getting back to Denver to see her next week and I pray that I can see her again despite her recent health conditions.

This is new to me; I’ve gotten close with patients before but never this close. In every way, I thank God for it and I really wouldn’t have it any other way. But that does not make it any easier. Knowing Amanda has given me a perspective on life that I wouldn’t trade for the world. Thanks to Stacy Moriarty (Founder of the Miracle Party) I was introduced to her and it’s been such a great divine experience. However, this is the first time I’ve found myself hurting so much emotionally. I love this girl and I will do whatever I can for her, she knows this and this is why we are so close. I want the best for her, the very fact that this might mean she leaves this earth is so emotionally wrecking, but ultimately her decision. I support her completely and I am prepared to do whatever I have to; I guess that’s the feeling I love. Her family is great and I’m so glad I can be friends with them. Right now is a tough time, and I ask you all to pray for her and her family. I love you Amanda!