Making Extraordinary Days

I apologize for the lack of posts recently. Busy times. So three or fours weeks ago I was making some goals for my life and the attitude I wanted to have. I was preparing to start my last semester of undergrad and getting all my classes figured out and thought it a good time to relook at the direction I am headed. One of the goals I came up with was I wanted to make each day extraordinary. I was tired of ordinary days and wanted to add the "extra" to them to make them extraordinary. I wasn't looking to feed a thousand starving kinds in Africa every day but just simple little everyday things. Writing a note to an old friend. making someone smile or making someones day. Just small simple things to go a little above and beyond each day.

I think I suffer from something that alot of people do and that is when I make a goal I seem to do well for a week or two while I have momentum but then loose sight of it and fall back into old habits. So I decided with this one I was going to try something new. I bought me a notebook and decided everyday I was going to write in there what I did that day to make it extraordinary. I figured this way I would have to make an extra effort everyday to make sure I did something that I could write in my book. This way I have a way of following up on myself everyday too to make sure I am working on my goal. I also have someone who texts me everyday and asks me what I did to make my day extraordinary. That way I am accountable to someone else too.

So far it has worked out pretty well. For example for the things I can write for today I went shopping with my roommate because he wanted someone to go with him. At the hospital I decided to smile at every person I saw in the halls. Everytime I was in the elevator I talked to the person in there with me and asked them how their day was. And I had a kiddo that had just finished his last round of chemo and got platelets today. He was feeling sick and came into the playroom. He just layed in the corner on a bean bag we had there. I dumped out a little bucket that some legos in it because he was starting to throw up. I sat there and rubbed his back while he threw up. (I know I like to have my back rubbed when I throw up.) I helped him rinse his mouth and got him a blanket and rubbed his back as he fell asleep on the bean bag. He slept there on the bean bag for a couple hours. It's just the little things I have tried to do to go above and beyond just a little bit. I didn't do anything amazing. I don't know if I helped anyones day. But I sure smiled alot more today. I made my day extraordinary, at least to me.

You are not your diagnosis website

I have been kicking around the idea of starting a website since the idea came to me the other day. For a job right now I work doing in home therapy with at-risk children usually through CPS or foster care. Most of these kids have a long list of psychiatric diagnosis and an even longer list of meds they are on for these diagnosis. Many of these kids are just victims of the circumstances; neglect, abandonment, fetal alcohol syndrome, sexual or physical abuse. The part that troubled me is when these kids would introduce themselves they would usually say something like 'my names Kim and I am ADHD'. Or 'Hi I'm steve and I am bi-polar so I am a bad kid'. Then there is ones like 'hi I am Paul and my parents abandoned me last year'. Alot of these kids classify themselves by their condition or diagnosis and I believe to some extent limit themselves by it. The sad part is often times the parents catalyze this catastrophy by telling their kids things like you're ADHD so you won't ever be like the other kids. I cringe everytime I hear someone say well that kid will never live a "normal" life and even tell the kids that! While I am aware there are conditions and diseases that may limit a child from ever living a "normal" life there is no disease or circumstance or condition out there that I know of that would prevent them from making the life they have extraordinary.

I wanted to make a website that listed different diseases and then shared real stories of real people who made something of themselves while battling an often times daunting struggle with their condition. People like Michael phelps who was diagnosed ADHD but inspite of that accomplished all the things he did. While I don't expect every child with ADHD to win nine gold medals in the next olympics or even one I hope it will help a few kids, parents, or caretakers realize that you are not your diagnosis. That everyone despite their circumstances has infinate potential in their own way. Even children diagnosed with such dehabilitating diseases of cerebral palsy can live an amazing life. One exceptional story of this is the story of a father and son who made the most out of the worst. I highly recommend you watch this!
http://www.youtube.com/watch?v=flRvsO8m_KI&eurl=http%3A%2F%2Fvideo%2Egoogle%2Ecom%2Fvideosearch%3Fq%3Dteam%2Bhoyt%26hl%3Den%26emb%3D0%26aq%3Df&feature=player_embedded

I have done some surfing through the internet to see If I could find something like this but so far haven't there is a few pages that share a story or two but nothing that you could click on a disease or condition you have and see stories about people who have made something of themselves in spite of it. I would like to have a place where people can email in their own stories to share with others. Hopefully the list of conditions and accompanying stories will grow and grow. I guess I should say hopefully i can even get this idea off the ground. I have made one website from scratch before that dealt with cancer among latino children but my website making skills are basic to say the least. If any of you have any suggestions for me or a story you would like to share I would love to hear it. You can even tell me I am crazy to try and undertake such a project. Maybe I need to hear that too. But I think if it helps a few people it is worth it to me. If nothing else I think it will help motivate me to keep going and to not look at the people I work with by their limitations but by their infinate potential.

Taboo topics

There are a few things in life we don't much talk about, one of them is the end of life. Last week was a hard week at the hospital. Three kids I have gotten to know fairly well ended up dying. Including the little girl in the previous blog. They had fought their battles with all they had and sank like warriors. I thought maybe I was getting better at dealing with death but these ones hit me pretty hard. I am not sure it really gets any easier with each one, seems like each one reminds you of all the ones before. Its especially hard to see kids like that little girl; some of the sweetest little kids I have ever met, lives cut so short. I am not sure how I would handle it if I didn't have a firm belief in God and a rest from all sorrows and cares for these amazing children. my heart bleeds not only for these kids but for the families left in the wake of suffering. For some death is almost a welcome escape from their disease stricken state. For others it is sudden and shocking. In every case it seems "too soon" for a person to die. I try not to think of dreams unfulfilled, loves never experienced, and other such things but my mind never shuts off.

A few days later a lady asked me how I could believe in a God that would let kids die like that. That's a hard question to answer. I am not sure I did it justice. But the thing that came to mind was I told her to look at how it brings people together. To walk 60 miles with 3,000 people in something like the breast cancer 3day or buy lemonade from little kids selling lemonade for Alex's Lemonade Stand. To see parents who, after losing the thing they hold most dear, start websites and raise awareness in the fight against cancer like People Against Childhood Cancer. Look at all the people putting their differences aside and uniting in the fight against this terrible disease. How many people have been inspired by the strength of a child that has fought so valiently in a battle they were never meant to win? It's truly and deeply sad to see these kids die. But truly inspirational to see the legacy they leave behind. I would venture to say every little child who's times cut short by cancer leaves this world better than they found it. Their influence keeps me and thousands of others going. I am not leaving my faith, my field, or my passion because kids are dying. Rather I am strengthening my faith, my field, and my passion because kids are dying. How God must weep to see these special children suffer. But how he must smile to see their families and those around them uniting to support and fight for them.

No way to have a bad day

I always seem to find new motivation when I go to the childrens hospital. Sometimes I get so bogged down with school work and work and trying to do so much in so little time there are times I want to throw my hands in the air and quite and go work at the grocery store for the rest of my life and become that nice old gentleman that bags your groceries but always puts the canned food on top of the bread. Sometimes a less demanding career and fifteen less years of school and training seem pretty appealing. But then I run into a little girl at the hospital like the one I have gotten the opportunity to know the last couple weeks.

This adorable little girl stands just over four feet tall and I would be suprised if she weighed forty pounds. Her body has been so ravished there is little left. She hadn't been able to walk in weeks and the first time I met her was the first time she was able to walk down the hall with the aid of her walker. She was obviously in pain. Feeding tubes ran from her nostrils, IV lines ran from her constant companion of an IV pole into the port in her tiny little chest. her walking consisted of hopping on her one leg she could bare weight on. Physically, she was in shambles. But from her sunken face radiated the most endearing smile. Her voice was so polite and so sweet. Everything made her smile, life was still a beautiful thing. She had every reason to be down, but found every reason to be happy. Her mom had brought her to the playroom in hopes to get a few minutes to take a shower as being at her daughters side for days had not afforded her the opportunity. This little girl instantly brightened the play room. She talked and laughed with us and even drew pictures for us. I sat in awe at her cheerfulness and strength. I can't think of a more sweet and polite girl I have ever met. It was a mix of emotions, her physically diminished appearance was enough to make anyones heart drop but her countenance and smile could lift the heaviest heart. When her mom returned to the playroom and they were leaving she turned to her mom and said "Mom I want to give him a hug." How could I resist? I tenderly hugged her and watched her slowly make her way back to her room for the night. She truly had left me in awe.

At times when I feel like pursuing such a proffession is too much or I feel like I am having a bad day I can't help but think of this little girl and countless other little pillars of strength I have come across in the hospital. Children who, despite pain, fear, and being faced with a dehabilitating disease find ways to not only be happy themselves, but to radiate that joy to everyone around them. Pediatric oncology certainly has its hard days, but with the example of this little girl and so many others there really is no way to have a bad day.

The 3day

I am finally blogging about the 3day. Better late than never right? In November I had the opportunity to Walk in the breast cancer 3day walking sixty miles over three days to support and raise money for breast cancer research and education. I know this doesn't have much to do with pediatric cancer but the research that goes into breast cancer has application in other types of cancer.
The best thing about the 3day was being around two thousand other people who are doing something in a big way for the fight for cancer. It was amazing to hear their individual experiences and why they were walking. It was amazing how many of them were cancer survivors themselves. For most people getting cancer would be enough, but these amazing people were giving what they had after almost giving all in the fight against cancer. One of the most amazing stories came from a lady that was first diagnosed with breast cancer ten years ago. She was able to beat it and went into remission. But four years later she was diagnosed with ovarian cancer. Once again she went through chemo and radiation and beat ovarian cancer. Then last year she was again diagnosed with breast cancer, This time it had spread throughout her whole body. She walked all sixty miles of the three day last year between her thirteenth and fourteenth round of chemo! This year she was walking again, cancer free. Ten years ago stage four breast cancer held little hope..there is no stage five. But today advances in treatment has allowed people like her to survive because of people like her making a difference. Sixty miles was a LONG way. I would be lying to say I wasn't sore and tired and walking in pain but to hear stories like that there was no way I could complain.
I had a team to walk with but I was the only member of that team to raise the $2200 required to walk and so I did it alone. Although it would have been nice to have someone to do it with it was also good to do it alone because it caused me to talk to so many new people and to meet people all along the way. I met people that came all the way from england to walk in the 3day. All in all it was an amazing experience. Thanks to everyone who donated to my 3day. It was so refreshing to spend 3days with people so commited to doing what they can and to see the amazing support from the community. It was hard not to cry walking by little girls holding signs saying things like thanks for walking for the grandma I'll never meet. Truly Inspirational.

Six years

Last month marked six years since watching my best friend die of cancer and really the start of my journey down the road of persuing a profession in childhood cancer. The experience of watching him die a very graphic death, the flashbacks, the depression that followed, having to lose a friend that was more of a brother; all of this at times I feel I would have rather done without. But then again where would I be if none of this hapenned? Who would I be? I probably wouldn't have a blog about childhood cancer or be working with the amazing kids at the hospital. I may not even be looking at a career in pediatric oncology or even in medicine. I probably wouldn't be persuing the oppotunities that I have to be involved in research in childhood cancers. I think my life would be alot different.

Sure watching my friend die and everything afterward is markebly probably the hardest year in my life. I never thought he would die. There was times I wanted to give up on life myself. Times I wished I never had that experience. But I feel the words from the Rascall Flatts song "Here" kind of sums up what my feelings have become. "and I wouldn't change a thing, I'd walk right back through the rain back to every broken heart on the day that it was breaking. and I'd relive all the years, and be thankful for the tears I cried with every stumble step...[that] got me here." I am sad that such an amazing young man had to lose his life to such a terrible disease. But I am glad I was able to be a part of it. I am thankful for the experiences that came to break me and then make me.

A lion in the house

One of the child life specialist and I were having a conversation on a slow day in oncology and talking about one of the patients that was dying. He mentioned a movie he had saw on childhood cancer called "A lion in the house" and suggested that I watch it. So I found it on amazon and ordered it and finally got a chance to watch it a few days ago. It is a docummentary that follows five kids with cancer through years of treatment till remission or death. It was a very interesting doccumentary and did well at showing all sides of the struggle. There was a few things that really stood out to me.

In one part of the movie an older brother is talking about his brother who has been battling leukemia for ten years and says. 'no one really knows how he feels because no one really talks to him.' and he kinda laughs about it while it shows his little brother at his birthday party kinda off by himself. It kinda hit me how true that is in alot of cases. Everyone talks ABOUT the little girl or boy with cancer but no one talks TO the little boy or girl with cancer. I suppose alot of people don't know what to say, or how to approach the issue. And alot of people can't see past the disease. Sometimes we forget they are kids not diseases. That is one of the main goals of child life is to look past the disease and treat them like the kid they are. They still want to play and have fun. They still want people to talk to. They want to be treated normal. Many of the kids in the video mentioned how it was hard at school because people wouldn't talk to them. This doesn't just apply to cancer but to all types of diseases and conditions. Talk to these kids! they may be some of the strongest and most inspirational people you will ever meet. You don't have to talk to them about their disease. I almost never talk to these kids about their diseases. Talk to them about batman, barbies, or baseball, it doesn't matter. let them choose the topic

At the end of the video one of the pediatric oncologists says "doctors aren't leaving oncology because kids are dying, rather they are sticking with oncology because kids are dying." He also says 'It is NEVER gets easy to see a kid die. I hope it never does. If it gets easy I need to switch careers.' This was a bit reassuring for me to hear. Sometimes it does get to me and I wonder. should I be immune to all of this? Should I be able to see a kid suffer through cancer and lose their battle and just be able to shrug it all off? I've come to the conclusion that the answer is in fact no! It should effect me! It should motivate me to be better, to try harder, to learn more, to help more, support more, and to do everything I can so it doesn't happen again.