To Fully Understand the Childhood Cancer Experience, Watch this Movie

I just finished watching A Lion in the House. It is a documentary that was released in 2006 and is both an Emmy Award and a Sundance Film festival standout. It focuses on five families who each have a child battling some form of childhood cancer.

The filmmakers (Steven Bognar and Julia Reichert) also fought the disease with their own daughter and I believe that this was one key to the movie being such a success. Their narration was incredibly sensitive and clearly coming from the perspective of personal experience.

When the film was originally recommended to me, I was not emotionally prepared to watch it but I knew it would be important for me to watch someday so I purchased it. In fact, I am not even sure I was emotionally prepared to watch it today. However, my plan is to begin public speaking in October and I have begun preparing for this by attending classes and setting myself up for mini speaking engagements.

As I prepared to sit down and write my first speech today, I decided that watching the movie would be good preparation. Perhaps like an actor getting into character. You see, I tell my story every day, many times a day. I believe I have subconsciously forced myself to push my emotions down deep in order to get my business (of building Striving for More) done.

This movie helped. It rushed me back into the days when we were going through it all with Colleen. I feel every emotion now. I can write the speech and fully feel.

While I watched the movie, I was keenly aware of the depression in the children. There was one young boy that was clearly depressed. The camera zoomed in on the tears running down his face as the reality of a feeding tube which had just been placed in his nose (and having to attend middle school that way, sunk in).

The movie never showed any emotional support being given (that is not to say it was not offered). The movie focused on the parents, the children and the oncologists and did not focus on any emotional support areas provided to children with cancer (that Striving for More is working so hard to fund like psychologists, child life specialists, social workers, and pastors.)

Now that I am outside of the situation and watched this movie, it rejuvenates my passion as I watch the emotional disruption on the adolescent boys and young girls portrayed in the film. The parents were fighting for their children's lives and they too needed emotional support. There was one line in the film spoken by a hospice nurse after a young patient died after her father forced her to go back into the hospital for one last attempt at chemo against her wishes. The hospice nurse said "...prolonging a process that would damage them spiritually and psychologically.."

I strongly encourage all of you to watch this movie. September is Childhood Cancer Awareness Month and most of America is unaware of what these children are go through.

The good news is that childhood cancer survival rates are rising. The bad news is that according to a 9/2008 Progress Policy Institute Report "Childhood cancer incidence overall has risen by 33 percent since Nixon's declaration (1971 declaration of a national effort against all forms of cancer); brain and other nervous-system cancers in young children have increased by over 50 percent; and the incidence of non-Hodgkin's lymphoma in teenagers has more than doubled."

Most of you may already know someone who has walked this journey with their child. Perhaps a neighbor, perhaps a friend. Perhaps a colleague. Maybe it is just me, through this blog.

The interesting thing is that even those closest to Vince and I do not fully understand what it was like. This movie however, will bring them very, very close and understanding is so important to fully supporting.

{The movie is available to buy on Amazon but it is also available to rent through Netflix and through Blockbuster (not in all of the stores, however so check on the web). }

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Striving for More Personality Profile

I met with Lori, a Strategist who is working with the firm that is creating our new website. She asked me a series of questions about Striving for More and then gave me some homework. My assignments including coming up with a personality profile for Striving for More. I am supposed to pretend that Striving for More is a person and decide what it would drive, wear, like to eat, like to listen to, etc. I thought I would share my conclusions.

When I stop and think about the personality of Striving for More (if it were a person), I immediately wanted to give it Colleen’s personality. Initially, I had reluctance to do this so I posted the challenge in Facebook. I was surprised to see that this was the initial reaction of anyone who knew Colleen and the origin of Striving for More. I knew at that point, that my initial gut instincts were correct. So I decided start out that way and see where it went.

To ease this description, I am going to call Striving for More, S4M from this point forward. I actually think it has a personality that would like a catchy nickname and being that she has a personality that has fully embarrassed the cyber language of texting, S4M would work perfectly.

Age/Attitude
S4M is a young lady.

She is a free spirit but a person of high ethical values. She is always honest, and authentic. What you see is what you get. People want to be her friend. She is likeable. She has a contagious laugh and she lights up a room with her smile. She would never intentionally hurt anyone and it saddens her deeply to know that someone is hurting either physically or emotionally as she is highly empathetic.

Automobile
She drives a pink or lime green Volkswagen convertible bug. She would have a vanity plate that would say STRIVING. There is definitely a bright flower in the vase on the dashboard and there are several different types of “Cure Childhood Cancer” magnets and a COEXIST magnet to represent that she respects people of all faiths.

Clothing
She wears comfortable clothing like jeans or cargo shorts and t-shirts. Nothing too revealing and always showing self respect. No disrespectful words on t-shirts. No silly words on her butt. She wears either rainbow flip flops or crocs on her feet during the summer and during the winter if it isn’t warm enough to continue wearing flip flops or crocs (which there are rare times when it isn’t warm enough), she will wear sneakers or stylish boots. She likes to be in fashion. She plays close attention to what the “in” people are wearing and tries to mimic that without spending too much money. She has a keen eye for style and what looks good. She enjoys fashion. She likes to paint her nails and paint the nails of her friends. She enjoys jewelry and has a lot of it to match different outfits.

Food
S4M likes to eat easy, fun food that is targeted for kids and young adults. Things like Macaroni and Cheese, Hot Dogs, Pizza, PB&J, Grapes, Bagels, Bananas, etc. And although, in general, she doesn’t like chocolate, her favorite candy is Reese’s Peanut Butter cups.

Music
She can most often be found listening to music on her ipod which is filled with top 40 and upbeat praise songs that she can sing along to. She loves watching American Idol, So You think You Can Dance and any and all of the other talent based reality shows. One of her favorite songs is “I Fly” by Hayden Panettiere

Read
S4M does not get into reading that much because she is very much a people person and reading is a bit too solitary of an activity for her. When she does read, it is typically for short bursts and it is a magazine article here and there. She enjoys reading People, Entertainment Weekly, Seventeen, American Girl, Cosmo Girl, etc.

Hobbies
S4M enjoys lots of hobbies. She loves to swim. She also enjoys going to the beach with her friends or family and collecting shells and making sand castles. She enjoys lots and lots of different crafts. She is very artistic. If she has nothing else to do with her hands, you can always find a pen and paper in her hand and she will be doodling.

She spends endless periods of time on her cellphone texting her extended family and large network of friends. She also will spend time playing video games on her ipod or her cell phone. She also enjoys watching things on the screen. It doesn’t matter what. She enjoys getting lost in the drama of the television. She does not enjoy cartoons as much as live action television shows and movies. Some favorite movies include Pirates of the Caribbean and National Treasure. Television shows are anything that are dramatic. Reality shows are definitely a favorite.

She loves animals. Small dogs and cats are a favorite. Anything that will cuddle in bed with her.

She loves to shop!

Relationships
S4M has many relationships in her life. She is close to her parents and her sister. She also is close to many cousins and friends. She makes everyone that she encounters feel as though they have made a new friend. However, she really only has one or two close, intimate relationships with friends. To those sacred few she is loyal to the end. She can also easily get her feelings hurt if she feels as though she is being neglected by those closest to her. However, if she is hurt, she rarely openly shares those feelings. Rather, she keeps them inside.

Summary
In summary S4M is full of vitality and energy. However, she is also full of compassion and love. She has a warm smile that can communicate “I know how you feel” with humility. She has a strong desire to help people so they don’t have to experience what Colleen experienced.

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My Spiritual Pilgrimage to Guatemala

My initial plan was to travel to Guatemala for a Spiritual Pilgrimage with the goals of connecting with God, learning from others and hopefully being transformed with humility by the experience. Upon hearing about the work of Lemonade International, I was moved to take a more active role and turn my spiritual pilgrimage into a mini mission trip to help the Lemonade International team with the important work that they do in the La Lemonada ghetto. Although I may not have had the solitude or study that a traditional pilgrimage usually entails, I feel my goals were achieved.

The entire trip was unforgettable. However, these are the moments that stood out for me.

• I spoke to many families and came to the realization that most of them had lost at least one child. Although my life of a lost child does not parallel that of most of my peers here, it did parallel most of the women I met in Guatemala. There was an odd sense of comfort in that discovery.

• Watching children walk down to the ravine to dump their trash and other children rummage through the trash in the river after the rain. You see, garbage men do not even go into the ghetto. Therefore, the people of La Lemonada dump their trash into the ravine. Initially this seems awful but then you realize that they don’t have any other choice.

• Accompanying Tita and her team of International workers into the ghetto each morning was in itself an emotional experience. I almost felt like I was part of a scene in a dramatic movie. Children with gobs of enthusiasm advanced on us squealing “Mana Tita, Mana Tita” (short for Hermana Tita or Sister Tita). Hugs, kisses and “Buenos Diaz” were doled out to everyone in the crowd. A screen writer could not write a scene this heartwarming.

• One of my goals for this trip was to find a child to sponsor. We had decided that we would like to sponsor a young girl in Colleen’s honor. It was important to me that I felt moved by the child I met. On the last day of our trip, we went to the playground to play with the kids from the Limon school during their “field day”. Shortly after arriving, I spotted a little girl that caught my eye and she approached me and hugged me. I asked her name and she said “Helen”. I quickly found out that she was 8 and that her favorite thing in the world was Hannah Montana. She had a light in her eye that reminded me of Colleen. After I communicated my desire to sponsor her to our hosts, I was told that before my arrival, Helen had told one of the teachers that she really wanted a “Madrina” (Godmother or Sponsor) and asked how she could get one. The teacher told her that all she could do was pray to God. Twenty minutes later, I showed up on the field and spotted her knowing that she was the girl that I had to sponsor. I look forward to the day when I can visit Helen again after she has been told that I am her Madrina.
  

What a wonderful feeling to be able to help a child.

See all of my pictures from the trip at my Picasa site.

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Helping Other Families in Guatemala

I came to La Lemonada to see firsthand what it is like in one of the largest slums in Central America. I have been following Lemonade International and Tita’s work through their blogs and I felt that God wanted me to come here.

My first day was an emotional one. After parking the car, we walked on foot, approaching the ghetto. Although I had seen it in pictures, it was hard to not be struck by the horror of the poverty. I have to admit, I was curious to see how people live in these seemingly uninhabitable shacks of sheet metal built on the side of a ravine. Afraid to look too close but curious at the same time. Sort of the way you feel when driving past a terrible car crash.

As the day unraveled, we had several close encounters that stirred my emotions. God had a purpose for me here. God needed me to see that other people lose children every day. A mother and father lost a son yesterday in a violent stabbing. I went with Tita to the wake and was able to share my story of how their pain will ease. Another family lost a son today (he hanged himself). Tomorrow we will find them. I hope I will be able to comfort them.

The sights and smells of the poverty here are disturbing but God is helping me see past that. There is more for me to see, more for me to feel, more for me to do. Today I feel blessed that I am fortunate to have enough money to travel here to do this work. Many people in the world are trapped, trapped in their sheet metal homes in the side of ravines.

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Going to Guatemala

I am very sorry that it has been so long since I posted on my blog. I am going to try to get better about that.

1) I am leaving on Sunday to spend a week in Guatemala for what was initially planned to be a spiritual pilgrimage but is turning into a mission trip. My friend Karen Brown and I will be spending the week with people from Lemonade International in La Lemonade which is the ghetto of Guatemala City. We will be primarily working with children. I have never done anything like this. I am looking forward to moving out of my comfort zone, doing something different and releasing my mind of all things cancer related for the week. Shifting my focus to the severely impoverished will be good perspective for me to gain.
2) Striving for More had their June Board Meeting and we added a new board member. We were all feeling a gap without a member that had experience with fund raising so that was a focus of my prayers for most of May. Deborah Harrell Meehan was voted onto the board and was quickly assigned as the chair of the fundraising committee. Deborah is the leader of the Wild Wacky Wonderful Women of the World and served as the President of the Wake Women's Center for the last 5 years. Her background, experience, contacts and wealth of knowledge make her a wonderful addition to our team. I am really excited that she has joined us.

3) FWV Distilled has agreed to take on Striving for More as a pro bono client to design and develop a new website for us. This is very exciting because they will be doing some market research work to determine the best approach for designing the new site. This has been the missing piece since I don't have a creative bone in my body.

Please pray for Karen and I as we travel to Guatemala. Also, please pray for Vince and Mackenna as they will be alone this week. Since most of you know how spoiled I am, I have no doubt that Vince is perfectly capable of handling things on his own. However, I will not have a cell phone and will not be touching base at home and we have never had time apart where we have not at least spoken to each other. This will be different for us.

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My Inspiration to Passionately Pursue Change

On September 17, 2007 we had the sitcom life. Two beautiful daughters, two dogs, a 2 car garage, an invisible fence, and loving family and friends surrounding us. On September 18th, a lesion was discovered on Colleen’s right femur and our lives were profoundly and irreversible changed forever.

Over the course of the next couple of weeks, our days were filled with doctors and tests. With each passing test result, the picture that was painted became more horrific. On October 1st we were told that Colleen’s cancer had metastasized to her lungs and to “distant bone”. The bone scan showed suspicious areas in her left knee, her pelvic bone, her spine, her right shoulder, and on a rib. The doctor went on to explain that “she would likely succumb within 9-12 months”. It was unfathomable. Was he saying there was nothing they could do? How is this possible?
I will never forget that awful day when the doctor used that horrible word “succumb”. I dare say that was the worst day of my life.

At one point during that horrid day a gentle man with a funny tie sat down beside us and simply said “Having a bad day?” He introduced himself as Dr. Dan. He was the Child Psychologist. He answered our questions about what to tell Colleen and how to answer her questions. He predicted how Mackenna would react, the questions she would ask and made recommendation on how we should answer. Over the next couple of months, Dr. Dan visited Colleen every day. They developed a wonderful rapport, as did we. He was there for her and for us. It was priceless.

Immediately after her diagnosis was confirmed, the doctors kicked it into high gear and did not waste any time getting her started on treatment. They explained that bone cancer is very painful and chemotherapy will make her more comfortable by hopefully killing the tumor and curbing additional growth of cancer cells. A port-a-cath needed to be placed in her chest to deliver the chemotherapy. Many scary procedures for an 8 year old girl had to happen very quickly. That is where Child Life Specialists come in. Carolyn, a Child Life Specialist brought Colleen a sock monkey. Carolyn guided Colleen in "operating" on the sock monkey to place a port-a-cath into the sock monkey’s chest. Then they took a field trip to the radiation department to take an x-ray of the monkey to see what the port-a-cath looked like on film. While in radiation, they just happen to take some films of Colleen’s chest to prepare for the procedure. Carolyn visited with Colleen regularly, engaged her in play therapy while developing a relationship and the opportunity to discuss her fears and anxieties about what was going happening.

Then there was Shay. Shay was the full time chaplain in Pediatrics. She would stop in regularly to see Colleen and visit with us. In addition, there was a support group every week where you could have coffee with her and Dr. Dan and visit with some of the other parents. Establishing those relationships with the other parents was an important element. We ended up practically living at the hospital, seeing these parents, night and day, at the worst times of our lives. The peer relationship was often our best support. I had some wonderful conversations at 2am in the hallway when I couldn’t sleep or something bad was happening and I needed support from someone who had walked a similar path.

In December, we took Colleen to MD Anderson Cancer Center in Houston. More tests were run and it was determined that the cancer had spread to every growth plate in her body. Dr. Anderson had a successful collaborative relationship with the Chief of Pediatric Oncology at a different hospital in our area and convinced us that Colleen did not have to stay in Houston to get the medical care she needed.

We returned and began a new treatment at a different hospital. How fortunate are we that we live in the city of medicine? We have such excellent medical facilities just miles from our home. This was a blessing. Colleen received excellent medical treatment. However, during her stay at this prestigious hospital, she was never visited by a Psychologist or a Pastor. The Child Life Specialist assigned to Oncology was expected to cover multiple pediatric units and barely had time to deliver DVDs and toys, let alone actually develop a rapport or engage in play therapy. Lastly, there were no peer support groups available for parents.

Emotional and spiritual support was nonexistent. At first, I thought that someone didn’t fill out the paperwork correctly. It was a shock that this private hospital could be lacking such obvious services. When I found out that it wasn’t a lack of referral but a lack of funding and/or priorities, I wrote a letter to the Chief of Pediatrics and copied everyone I could find including the President and CEO. I wrote this letter in January 2008. A meeting was called and we talked but now it has been 18 months and nothing has changed. They did not emotionally or spiritually support Colleen and they are not emotionally or spiritually supporting any of the other children with cancer that come through their doors.

Colleen died on June 9th, a year ago today. Colleen had asked me several times if she was going to die and my answer was always the same. “The doctors and nurses are doing everything they can to help you and you have to do everything you can do too. We will always be honest with you and tell you what is happening. If we ever reach a point where the doctors and the nurses can’t help you anymore, we will tell you.” A couple of weeks before Colleen died, the doctor told me that it was time to tell her. I needed to tell her that we had to cancel her Make-a-Wish trip. I needed to tell her that the only way for her to feel better was to go to heaven and be healed. Even on this horrible day, we were not offered any support services.

After Colleen died and I began to feel called to address this need, I researched the issue. Eight out of the top ten hospitals that are excelling in this area of support are doing so through donor funding. Sadly, insurance companies do not easily pay for this type of support. In fact, the other local hospital that Colleen was being treated at has lost some of their grant funding and their support services have suffered as a result. I sadly learned that this is problem is wide spread.

In my darkest hours, I sometimes cry out “why us?” I wish I could answer that. It haunts me. For now, I just know for certain that God is leading me to passionately pursue the improvement of emotional and spiritual support for children with cancer.

Thank you to everyone who has supported us through the darkest time in our lives. It is my prayer that Colleen’s tragedy will result in an increased awareness of this issue and as a result increased support for kids with cancer.

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Pink Hair for Colleen - Kyleigh's Story

I took the day off today and spent it with Ashli. When I went to her house to pick her up, some of Kyleigh's classwork was out on the table. Baileywick has started sending it home since it is the end of the year. Ashli shared one of the stories with me. In September, Kyleigh wrote the following story. I asked if I could share it on the blog because the day she is referring to took place on June 3, 2008. To remember that day and to honor my sweet Colleen, I will be getting my hair dyed pink again. What Kyleigh's story doesn't tell you is the background... how we all ended up with pink hair that day.

You see, Colleen's favorite color was pink. When she lost her hair, we started talking about what we would do when it grew back in. We would talk about all sorts of crazy things when we were bored waiting around in hospitals and in clinics with nothing better to do but chat. She decided that when her hair grew in, she wanted to dye it pink. Well, my friend Candi, was coming to visit from New Jersey and Candi is a hairdresser. I asked Candi to bring the stuff to make Colleen's hair pink. When I spoke to Colleen about it, she said that she wanted to wait until her hair was longer. (Even though we had already spoken to her about dying, none of us knew how long it would be although the doctors suspected it would only be a matter of weeks. However, we did not share that with Colleen.) I did not want her to wait so I encouraged her to dye her hair while Candi was visiting. "How often do you have a hair dresser in your house willing to do everyone's hair at once? Everyone is going to do it! Even Daddy and Gracie (the dog)!". So, we invited Kyleigh and Alexa (Colleen's two best friends) over to spend the afternoon with Colleen and get their hair dyed pink! This is where Kyleigh's story picks up and she tells it very well. I loved reading it and I hope you do too!

I could smell my chicken sticks and fries from Burger King as I walked through the door. I was also wondering if I would look good in pink hair or not. While Alexa, Colleen and I were eating our delicious chicken and fries. I could see the hair stylist pouring out the hot pink dye. I was still thinking if I would look good, but I was doing this for a friend. I could smell the dye. It smelled like alcohol. We did not like it one bit so we plugged our noses the whole time. Before the stylist dyed my hair, I got to touch the dye. It felt like a milk shake because it was real thick. The hair stylist got some tin foil and laid a chunk of my hair on the loud tin foil. She took a big brush and dipped it in the dye and she let the extra dye drip off the brush. Drip! Drop! Drip! Drop! She slowly painted the hot pink dye on my hair. I could hear the crackling of the tin foil when she folded it up so it could dry. Cridy, crack, cridy, crack. Up next was Colleen's dad (Mr. Vince). Colleen said "You dye your head first and I will go last". A few minutes later Mr. Vince walked in Colleen's room with a head full of hot pink hair. Alexa, Colleen and I were laughing so hard because it was a trick. Ha, ha, ha, ha, ha. Colleen was just going to dye a little bit in the front of her head. The hair stylist took off the tin foil from all of us. I could feel my heart thumping while she took the tin foil off. Thump, thump, thump. All of us looked in the mirror, and Colleen said "We look awesome!". And from now on when I look in the mirror, I think of Colleen and Alexa. ~ Story and Picture by Kyleigh Kestner, 9/24/2008

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My first birthday in 10 years without Colleen

June 2nd is my birthday. I will be 43. It is supposed to be a happy day. My birthday used to be my favorite holiday because it was a day that was all about me and I like days when you are allowed to be completely self centered. You see, I tend to struggle with that anyway so I like day when you are allowed to be the center of attention. But this year is different. This year, I feel like my birthday marks the beginning of a dark week. I remember back to last year at this time and it is when Colleen started having trouble breathing. It is when she was home, in hospice but her decline began and we knew our days were precious and few. I remember praying that she would not die on my birthday and thank heaven, she didn't. In retrospect, I was being self centered yet again as I did not want my birthday tainted with her death for the rest of my life. Little did I know that it would be anyway. Little did I know that nothing in our lives would ever be the same. Colleen gave me two things for my birthday. She gave me a beautiful necklace inscribed with "I love you Mommy on the back". I will wear that tomorrow. She also gave me a picture frame with a picture of her and I in it. When I push the button, she says "Happy Birthday Mommy, I love you". How previous that is to me. I get to hear her say those words whenever I want. I don't press it very often as it brings tears to my eyes everytime I press it. I was also terrified that I would press it so much that I would wear it out. When the documentary people were here in October, Casey was nice enough to convert it to an MP3 file for me. So now I have it without fear of losing it.

Many amazing things have happened on my journey to build Striving for More. My friend Alicia keeps harassing me. She says that I need to write the stories down. Stories of how God is working in my life. Working to make Striving for More a reality. Putting the right people in my path at the right time. It has been rather amazing and I don't want to take any of it for granted. I am in awe of everything that God has been doing for me. I am very appreciative. He has been working overtime helping me get this nonprofit up and running. It isn't that I don't appreciate it. It is just that there are some days. Days when I look around at other people kids hanging about the pool and it is strikingly obviously to me that Colleen is so clearly missing. There are days that I would much rather have Colleen here and not have God working so hard in my life. I would take a nice quiet relationship with God like most people have and have Colleen sitting with me right now. I miss her so much.

People frequently comment how they can't figure out how we manage after the loss of Colleen. We manage because we must. That doesn't make it easy. But bills have to get paid, Mackenna has to go to school, Vince has to go to work, and life has to go on. It would be easy to lay in bed all day and cry. Trust me, there are some days that I wish I could do that. But life continues on around you and life forgets what happened a year ago even when you don't.

June 3rd of last year is when a bunch of us turned our hair pink. Although I was originally thinking of doing this as a fund raiser and I don't think it will be an official fund raiser this year (because we are trying to structure our organization and take more time to establish fund raisers, etc.) I am considering going ahead and dying my hair pink this week anyway (in remembrance of Colleen. What the heck! My hair is still really short. I think I will go ahead and do it. It will give me yet another thing to talk to people about.

Who knew I was such a rebel at heart? I guess I always knew and I am excited that I finally have a reason to set my rebel free!

Have a good night.

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Personal Pep Talk from Bridget Duffy, MD ~ CXO Cleveland Clinic

I had the distinct pleasure to receive a personal pep talk from Bridget Duffy, MD today. Dr. Duffy is the CXO (Chief Experience Officer) of Cleveland Clinic. The CXO position is "charged with raising the institution’s commitment to ensuring a high-quality patient and family experience and humanizing the delivery of health care".

Cleveland Clinic is ranked the #1 Heart Hospital and in general the 4th top hospital in the country according to US News & World Report's America's Best Hospitals Report. A former business associate had met her at a conference and suggested that I contact her. You can imagine how thrilled I was that she agreed to talk with me.

She was incredibly warm and caring with me as well as an incredible inspiration. She told me that she began her journey to design "optimal healing environments" fifteen years ago. She remarked about the fact that she was fortunate that Cleveland Clinic has an enlightened board & CEO that is open to implementing her recommendations to improve patient experiences.

At this point, we all know that treating the patient and not the problem is better but there are not enough reports out there to prove it on paper. Hospital administration has to trust that it is the right thing to do. It makes me so happy that Cleveland Clinic chose to make make patient experience one of their system's eight strategic goals. The initiative, which is called "Patients First,” focuses on "addressing patients’ physical and emotional experience, restoring empathy as a core value and recognizing the role employees play in delivering an exceptional patient experience." I hope that if the word gets out and they can prove that it has a positive affect on their patients and on their ROI, then other hospitals will follow.

Dr. Duffy told me that doctors at Cleveland Clinic can check a box that says "Healing Services Consult" and the Healing Services Team follows up with the patient. Their healing services include many of the same things that Striving for More includes in our mission (psychologists, social workers, etc but they also include Holistic Nursing which she recommend that we consider in our scope as well. I did not even know that this specialty existed! I read more about what they do at the American Holistic Nurses Association website and wow, it is something that I would like to take to the S4M board for them to consider in our strategy. It fits right in!

Dr. Duffy encouraged me in my pursuit and gave me several specific strategic recommendations to consider as Striving for More moves forward in our mission.

Thank you Dr. Duffy and thank you Matt M. for suggesting that I talk with her.

Read more about the incredible work that is being done by Dr. Duffy and her staff at Cleveland Clinic in an article at hospitalconnect.com

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Extraordinary Board in Place for Striving for More

Last Tuesday, I held the second Board Meeting for the Board of Directors for Striving for More. There were 3 new people that were voted onto the board.

I am proud to announce the new additions to the Striving for More Board of Directors. (if you don't know who the equally impressive team that this group is joining, check out the blog with those details here):

• Tom Stevens, MSW - Leadership Coach, Mayor, Author, Keynote Speaker - The way that Tom and I met can only be explained by divine intervention. God wanted our paths to cross and He made sure they did. Ask me about it and I will happily share the story with you so I can enjoy your reaction. Tom is currently on his second term as the Mayor of Hillsborough. He owns his own consulting firm called Think Leadership Ideas where he brings his clients two decades of experience in engaging people to create meaningful change and raise the bar on performance. He previously owned his own family therapy company in Durham. He brings an amazing wealth of experience to our board and I am confident that he will be a key player in helping Striving for More determine the best strategies for moving forward as a successful organization. I am so glad that he agreed to join us.
  

• Melissa Hicks, MS, CCLS, LPC, RPT - Child Life Specialist & Licensed Professional Counselor - I have been told that networking is the key to this business. It is a good thing that I am not shy. I have been telling everyone I know and everyone I meet about Striving for More and what my vision is since October. Well, in Missi's case, it is proof that it paid off. Two separate people told her to call me. Which is so fantastic because she is a goldmine of a find. Not only is she a Child Life Specialist who is highly experienced with Oncology patients but she was the co-founder of a nonprofit organization in Austin, Texas so she brings a tremendous amount of experience that we can benefit from. She is highly respected in her field and it is rare to find a Child Life Specialist with Oncology experience not working at an Oncology hospital. Since I already have one board member from Duke and one board member from UNC, it was important for me not to add anyone else from Duke or UNC so we do not tip the scales in either direction. This could not have worked out better. Missi started providing me guidance before she was even voted onto the board. She is fantastic. We are very fortunate to have her join Striving for More.

• Karla Diener, CPA - Karla and I met during one of my first but her very last Duke Non Profit Certification courses. She quietly asked me for my card during a break but we did not talk very much. I did notice that she seemed to know as much as the instructor and I wondered why an experienced CPA would be in the course. Karla called me a few weeks later and we decided to meet for coffee. We instantly hit it off. She is my kind of woman... driven. She gets things done. She wanted to learn more about Striving for More and after she did she was interested in being on the board. How fortunate am I? She came to me! At this point, I have figured out that God really wants good things for Striving for More. I must be on the right track. Jill is already our treasurer but Karla is an experienced CPA. The two of them met and they got along great. I need idea people around me. I can execute but I lack creativity when it comes to generating ideas. So I appreciate idea people so much and Karla is an idea person. We need that.
  

The board meeting was terrific. What a great room full of intelligent people who speak their ideas. A room full of people who just want to help kids with cancer make sure that their emotional needs are met. What a blessing.

So lets take stock for a minute, shall we? The last 3 board members either came to me or were plopped down right in front of me and they are all perfect fits for Striving for More. We must be on the right path, huh? , God. I will keep listening and keep doing what you tell me to do. Thanks for all the help you have given me so far.

If you have played a part in talking about Striving for More, talking about our mission, thank you so much. I appreciate it and it is clear He is listening.

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A Weekend of Trolling Twitter

I have spent a good part of my computer time this weekend on Twitter. I had no idea that there was a whole other world out there too! I had discovered Facebook sometime ago and quickly realized that it was a world of its own. I opened a twitter account because I read a non profit tech article that told me that I should but I did not really know why I was doing it and it remained pretty dormant until this weekend.

In fact, I thought that twitter was just another world like facebook but only with really small boxes for your status updates and for someone wordy like me, that is sheer hell. However, I discovered that it is actually a very powerful place. Where you can hook up with powerful people. In a short period of time, I Doug Ulman, the CEO of LiveStrong, Donald Jones from NBC17 News and lots of other people interested in cancer charities following me. This can only a good thing for a Childhood Cancer Charity that is trying to increase awareness of her cause!

So, if you have a twitter account and don't know what to do with it (like I was) or don't have one at all, I would encourage you to check out this terrific article called "12 Reasons to Start Twittering" that found by Micheal Hyatt (@MichaelHyatt) for Twitter Newbies http://bit.ly/QkiiQ

You can even hook twitter and facebook up so you only have to update twitter and it will automatically update your status on facebook. Most people update their twitter accounts using text messages from their phones. That is why they are so short and why you see many of them while people are out and about. It is actually interesting to see what the stars are doing (yes, many celebrities are out there twittering away and actually sharing with the world what they are eating for breakfast (like we care).

I encourage you to check it out! It will be fun.

When you get set up, please start following me...
http://twitter.com/striving4more (@striving4more)

The Striving for More board meeting is being held on Tuesday and I hope to have lots of exciting news to share afterward!

Tweet ya later!

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Making a Meal Would Help Us Right Now.

Things are really starting to roll along and I am excited. I cannot announce anything official yet because I have to get things approved by the Board of Directors at our next meeting. However, I am starting to plan an event and I am energized.

I am also energized by how our website is coming along. I have a great graphic designer that has been volunteering for us and he is fantastic. He came up with a terrific concept and we are running with it. It has led to lots of creativity.

This is the point, however, when volunteers are needed. I have been using Facebook to post some of my volunteer needs and that has been working out well but I knew it was a long time since I had posted so I thought I would post here too.

One of my immediate needs is for a meal for the Board Meetings. We have monthly meetings. I had originally planned to spend money from our budget to cater this dinner but it seems like my budget is a bit slim to feed 9 people. The reality is, that the meal does not have to be fancy, it is more about function. In addition, this will ensure that more of the money donated to our cause is going to our cause.

The board members are volunteering their time, most of them on their way home from work and they need to eat dinner. We usually eat while we meet. Therefore, I am looking for volunteers to make a meal for the Striving for More Board Meetings.

We meet in RTP, right off of the Davis Drive exit of Route 40 at 6pm on Tuesday nights once a month (the next meeting is this Tuesday, 4/28).

I can even pick the food up from the volunteers home if the office is not close to where you live. Again, there are 8 of us. I would love it if you would conact me if this is something that you would be interested in signing up to help with. And if there is anyone out there that would like to volunteer to coordinate this, I would love that as well!

Thanks everyone for your continued support!

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More Awkward for Others

I frequently find myself in situations that are more awkward for other people than for me.

Like today for example. I am very involved in my community and except for last year when our life was turned upside down and backwards, I rarely miss an event and am usually helping in some way or another. Today was our annual Easter Egg Hunt. We have been in Hawthorne for more than 8 years now. In the beginning of the event, I went introducing myself to the neighbors that I did not know. This is who I have always been. I don't believe it will be something that will change about me, especially now that I have a non profit and networking is such an important part of my life.

I introduced myself to one woman that I did not recognize that had two small children. It turned out that she had lived in the neighborhood for quite some time. I am not sure why the question always catches me by surprise but it does. At least the first time it is asked at each event. "How many children do you have?" I hate answering this question.

Not because I don't know how to answer it it. "I have a 12 year old daughter, Mackenna and then I had a 9 year old daughter, Colleen who died of cancer in June."

Not because it makes me sad. Talking about Colleen doesn't make me sad. Anyone who knows me well enough knows that I bring her up every chance I get.

I hate the question because it immediately makes the other person feel awkward. She told me how sorry she was and how she had no idea. She said that if it was her there was no way that she could be out at an Easter Egg hunt.

I tell my story a lot. I tell my story because it is an important story to be told. I tell my story because I want the problems that we experienced to be fixed. I tell my story because this is what God wants me to be doing and I am answering His call and trying the best I can to be obedient. So far, it is working out for me.

When you tell your story a lot, you learn to tell it without tears. Sometimes I think people think I am heartless because I can talk about it without turning into a puddle. God gives me the strength to get through each day, each story, each interaction. It is important.

Do I have my unhappy days? Yes. Do I have days where I sink so deep into a hole of despair that I feel like there is no climbing out? Yes. Are there days that I wish someone would tell me that I have 3 months to live and there is no cure so that I know I will see Colleen sooner rather than wait what seems like an eternity to be with her again? Yes.

However, there are also days that I feel happy. Like when Striving for More received its tax exempt status. There are days when I feel joy. Like today in church when Mackenna and I were singing and dancing and having a good time praising God. There are days when I feel proud. Like when Mackenna received all A's on her report card. There are days when I feel thankful that I have an amazing husband that takes such wonderful care of us and we have gotten through the worst of times and are still happily married.

Honestly, it sucks that Colleen died.

But this situation is going to be redeemed and our world is going to be better for it. I am going to help in my little ways with God pointing me in the right direction and putting the right people in my path. I just have to listen and stop worrying about what I don't know and trust that God will help me figure it out when I get to confusing intersections.

I appreciate everyone who continues to pray for me and my ventures into the unknown. I have been amazed at what God has been doing in my life.

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It's Official ~ Striving for More is a Tax Exempt Non Profit

It's official. We have been declared a tax exempt organization by the IRS. Therefore, all donations to Striving for More are now tax deductible!

I can hardly believe it. The IRS quotes a minimum processing time of 60 days to issue 501(c)3 certificates. The IRS acknowledged receipt of our application on 2/23 and granted our tax exempt status on 3/19.

Vince and I took the day off on Monday to spend it together for his birthday. We arrived home after having lunch and seeing a movie. I was glancing through the mail and my eye caught sight of a letter from the IRS. Typically this would make people worried. Not me... it was addressed to Striving for More. I actually wasn't thinking that it was my acceptance. How could it be? I had carefully calculated it and the earliest that I would be granted non profit tax exemption status was 4/23 and that was being optimistic. If the IRS meant 60 business days, it would be longer than that. My attorney warned me that it could be 6-9 months, perhaps even a year before I heard.

For some reason, I took the extra seconds to find the letter opener, not wanting to tear what could be one of the most important envelopes I have ever been sent. I unfolded the letter and read it slowly. I couldn't believe it. I started screaming and jumping up and down (literally). I was hollering to Vince and Mackenna and jumping around the room. I haven't jumped around like that since I was about 10. I hugged Vince and screamed again. This time right into the poor man's ear. Mackenna picked up the letter and read it, not understanding what all the fuss was about. I explained it to her and told her that except for the day that I married her Dad and the days that I gave birth to her and Colleen, this was the happiest day of my life.

That night, while we were all at our grief group, I told the other family members about my day. Through tears, I told them that the event was even better because for a long time, I didn't think it was even possible for me to be happy again, without Colleen. Let alone to declare that March 23rd, the day that I was told that Striving for More is officially a tax exempt non profit organization, was one of the happiest days of my life.

It only took the IRS 14 business days to issue a tax exemption certificate to Striving for More, Inc. Another sign that this is the work that I am supposed to be doing. I am so thankful for the continued affirmation. Thank you God.

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On the Cusp of More Compassionate Healthcare

A business associate recently shared with me that he had the opportunity to meet Dr. Bridget Duffy who is the CXO (Chief Experience Officer) at the Cleveland Clinic. I researched her a bit and this position and her work is exciting (see 2007 press release).

You can watch a video of Dr. Duffy at this link.

There is a movement in the health care world toward improving the patient experience. In fact, as a result of the fact that patient experience data is now public information, some hospitals are starting to implement strategies to improve patient experience. Although their initial motivations may have been to achieve higher scores on these now public surveys, the investments have in some cases resulted in undeniable overall improvements. Not just in experience, but in outcome as well. Connections between a patients emotional well being and their physical well being are being recognized and additional investments are being made.

I am excited about the potential changes that we may see in the future.

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Striving for More Team @ St. Baldrick's Event

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St. Baldrick's - A Great Cause, A Great Day

Saturday was an amazing day. I started by going to the pub to support The Magellan Charter school because there were some children who were shaving in honor of Colleen. This was shortly after noon.

I was worried that I would cry when I had my own head shaved. I actually ended up shedding the most tears while watching Elizabeth, one of our neighbors, have her long hair cut (for locks of love) and then her head shaved in honor of Colleen. She was actually the top fund raiser for the school by raising over $2,000 for the event. I was really proud of her and touched by her act of love and kindness.

My nephew, Matthew and his friend Ray were up next at 3:30. They were part of the Bayleaf Fire Department (aka Firefighters for Kids team). Matthew was the top fundraiser for his team raising $1400 for the team and Ray sacrificed this huge head of hair and raised $400 for the cause. It is great to see college kids participating to help such a great cause. This was Matt's second year and the reason that I am even involved. Thanks so much Matt. I love you for being the man that you are.

My Mom and my friend Karen were long haulers with me. Staying for most of the day for support. I really appreciated that. It was a long day but Napper Tandy's and the event organizers (The Redwoods Group) did a great job with the event and we certainly had a beautiful day. At around 5pm, my friends started showing up in droves to support me. People were showing up all the way up until the last minute when I looked down from the stage and spotted a few people from church that I did not even know were there. I cannot tell you how much I appreciated all of the moral support.

The Striving for More Team was amazing. Our team of only 9 people raised over $10,200 and the final numbers are not even in yet because cash donations were made during the event. I made new friends, became competitive for a good cause, had a blast, discovered that I don't have such a bad looking head and love the fact that I don't have to blow dry my hair anymore!

Tons of pictures were taken and some video too thanks to my good friends Chris (Nutt) Marshall, Derek Carawan, and Kim Petty. Check them all out at the links at the bottom of the page. Check out the great video uploaded because it tells the amazing story of how involved my friend (and Hawthorne's friend), the emcee, Collin got when the Striving for More team took the stage. It was fantastic. He was amazing. Thanks Collin.

Now, I will set my sights back onto Striving for More and what I need to get done for that. Indeed, there is a lot to be done.

Until next time, good night and thank you again.

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Tomorrow is Shave Day!

Tomorrow (Saturday, March 7th at 6:30pm), the Striving for More team, which is now nine participants strong, is having their head shaved to raise money for Childhood Cancer Research during the St. Baldrick's Foundation Event at Napper Tandy's Pub in downtown Raleigh.

It is very exciting for me because our team is currently in second place behind a team of more than 70 kids from Magellan Charter School and I am pretty sure we won't catch up to them. (Who wants to? Little boys and girls shaving their heads - how great is that!).

However, I am currently the second place individual fund raiser and I am a very close second. Right now, I am less than $400 from being the top fund raiser in an event of more than 250 shavees. The interesting thing is that I am not typically a competitive person. However, I see a huge opportunity for Striving for More to get a big PR push if I do win as the first place winner. I am doing everything I can to get the biggest PR push regardless. I purchased 30 Striving for More t-shirts and I distributed them this week hoping that most of our supporters who are attending will be wear them to the event. I hope to get my new business cards in the mail today and hand out stacks to the people wearing t-shirts so they can hand them to anyone who asks about Striving for More. My generous web developer is working hard to try to get the web site into an initial state that is ready for some visitors even though he has a full time job and a full time life of his own. The pressure is mounting.

The Striving4More Team is being featured on the home page of the St. Baldrick's site in the 'head'lines section which you can see on the home page but it cycles through several different stories. I have also been approached by some PR/media people as well (nothing too big at this point, but I can see the surge starting to swell).

There are people coming to me asking to be part of the board. Exciting people. The type of people we need on the board... coming to me... not me hunting them... stalking them... begging them... it is all starting to change and it is very exciting for me.

From the first day I made this decision, it was clear to me that this is the path God chose for me. It is very exciting that other people are starting to see that now too.

So if I could ask you today, please...

1. Pray for the Striving For More team and that the event goes well tomorrow. Pray that many people see our t-shirts and ask about Striving for More and that general awareness is raised within our community. Pray start thinking about the issue that we have in this community and elsewhere and are moved by it. So moved that they talk about it at the dinner table and tell their friends. Pray that we start a groundswell of public awareness.
2. Pray for the success of the event as a whole. It is an amazing event and a fantastic cause. Raising money to help childhood cancer research is important. The National Cancer Institute's federal budget was $4.6 billion. Of that money, pediatric cancers combined received less than 3%.
   
3. If you have thought about donating to support my shave and have not, please consider it in these last hours. Even if it is only $5. It may put me over the edge to be the winner of the event and bring some really positive PR to Striving for More which will lead to bigger and better things down the road. Just click here and then click on my head!

Thanks so much to everyone, for everything!

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Officers Elected and Logo Selected

Last Wednesday evening, Striving for More, Inc had its first official board meeting. The fact that the board met for the first time was an exciting milestone for me. In my mind, that was the evening that "my organization" becomes "an Organization managed by a Board of Directors". It sounds so thrilling, doesn't it? Also in my mind, that is the day that I became an employee or even a servant to the Board. I pray that I can continue to communicate my vision, my passion and my enthusiasm to each of them so that we can all accomplish great things together but it is no longer just "mine" and major decisions will have to be made as a team.

During the meeting, officers were elected. Up until this point, I have not shared who was on my board because I did not feel like it was official yet. Since it is official at this point, I am ready to share with you all the Striving for More Board of Directors

• President ~ Diane Moore
  
• Vice President ~ Bob Witter - Bob and I were colleagues at Sony Ericsson for many years until he left 6 years ago to start his own company. He is currently the CEO of Device Solutions, a technology firm located in RTP. He was an inspirational mentor to me during our time together at Sony Ericsson and I believe he has picked up right where he left off. As cancer has touched his life in many ways through family and friends, he is passionate about our cause.
  
• Treasurer ~ Jill Balogh - Many of you have heard me talk about Jill before. She is a great friend and loved Colleen and the time she spent with her. Jill also spent more than 20 years at IBM as a software programmer before she retired a year ago. Since her time with Colleen, she now has a passion to help kids with cancer and has been my right hand in the establishment of this organization.
  
• Secretary ~ Shay Montgomery Crenshaw, M.Div., BCC - Shay is the Director of Pastoral Care for UNC Hospitals. My relationship developed with Shay during Colleen's time at UNC as she was the Pastor serving in the Pediatric Oncology Unit at the time. Both Colleen and I grew to love her. Her passion is helping children and she is pleased to be able to serve in this role.
  
• Director ~ Daniel S. Wechsler, MD, PhD - Dr. Wechsler is the Chief of Pediatric Hematology/Oncology at Duke University Medical Center. I am honored and thrilled to have him on our board. He was Colleen's doctor at Duke and he continues to support this important initiative and our work towards improving the care that all kids with cancer receive.
  
• Other ~ Felicia Gore Hoover, JD - Felicia is long time friend of mine and an excellent attorney. She has agreed to serve on the board temporarily until we can find a permanent replacement. Her life is quite full as the mother of triplet 9 year old girls, working full time and already serving on other boards. She has already proven to be an extremely valuable resource during our first board meeting. Thanks Felicia.

We are still in need of additional board members. Specifically, we are looking for passionate individuals in the following roles who may be interested in serving in this important role:

CPA, Marketing/Advertising/PR, Experiencing Fund Raiser or Development Director, Pediatric Social Worker, Pediatric Psychologist, Child Life Specialist or Recreation Therapist, Pediatric Oncology Nurse, Nurse Practitioner or Physicians Assistant, Attorney (Business, Estate Planning or Non Profit Experience Preferred), Computer or other Technological Specialties, Entertainment Industries/Media Executives, Business Executives (Officers or Key Corporate Positions).

If you are in one of these roles, are passionate about the Striving for More cause and think you may be interested in joining us, please contact me.

The second exciting accomplishment that came out of our meeting is that we picked a logo! So, here is the first official unveiling of the new Striving for More, Inc. logo.

For those of you who are unaware, the gold ribbon represents, Childhood Cancer Awareness. Just like the Pink Ribbon represents Breast Cancer Awareness. We realize that this is not a well known fact at this time but we decided that we think that need to change. We hope that a year from now, everyone will be buying gold kitchen appliances to support childhood cancer!

Lastly, the Bylaws were all officially signed by the board members and the tax exemption paperwork was officially submitted to the IRS. So now we are in a waiting game. It could be 90 days or it could be a year. We were advised by our attorneys not to perform any fund raising activities until we receive our official tax certification.

As a result, I have decided that I will pursue some short term contracting assignments to try to beef up my savings account to help me get through the future life of a social entrepreneur living on a meager or potentially non existent wage. Therefore, if you know anyone that needs a kick butt, highly efficient, Enterprise Software Implementation Program Manager who is willing to travel and take short term assignments, send them my way.

This does not mean that I am giving up on my vision, or my passion. I think this is what God has in mind right now, while I wait. Work during the day for "the man" and plan during the evenings for "the kids".

Please say a prayer that I am discerning this message correctly.

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Legal Language and Logos

I spent the entire day today working on finalizing the 1023 document for the IRS (so they will give me tax exempt status). I had left the meeting with my attorney last week with a list of action items. I had underestimated how much effort that I would have to put into the "narratives" that have to be attached to the 28 page form. Boy, it was an exhausting day. But I am really glad that the work is behind me and most of it is stuff that I would have ended up doing anyway. For example, I actually had to design a Striving for More Grant Application and Process.

I was initially thinking I would surf the web and find another foundation's grant application and tweak it. Well, that is what I ended up doing but it took a LOT of tweaking since Striving for More is so unique in the fact that it is the first of its kind (that I know of) to fund psychosocial services. All of the other foundations are funding research and the application and review process for that type of grant is completely different than what I needed. That was only one of about 9 action items which were all at least that difficult. But as I said, I am glad to have it behind me. I feel exhausted but accomplished.

Sprinkled throughout my day, I have been looking at possible Striving for More logos. I started a logo design contest and I have received 48 submissions already. There are still 6 days left in the contest. The contest administrators encourage you to provide prompt and constructive feedback when the designers submit artwork. This allows for an iterative process over the 10 day contest period. It is interesting, fun and a lot of work all at the same time.

I sure would love to hear some comments from you guys. It gets really hard to look at them all and I would love to hear some other opinions. I am hoping that one is going to come in it is going to hit me as the perfect logo but it hasn't happened yet. I have been very impressed by the dedication, hard work and quality that I have received. The designers that are working on it seem to be working hard to win.

Please go check it out and let me know what you think! Click here to check them out. Scroll down to see the logos because they are toward the bottom of the page. Each logo has a number so it is best to refer to the number if you make a comment. I can't wait to hear your comments. Comment here on the blog so everyone can see, that is, if you aren't too shy.

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