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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