MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

June 25, 2011

Saturday, June 25, 2011

Saturday, June 25, 2011

Tonight's picture was taken in August of 2007, during our trip to Coronado, CA. Mattie liked water but he was cautious about swimming in it. His healthy respect for the water made my life much easier as a mom, because I knew he never was going to do something in a pool without adult support. As I look at our pictures from our San Diego trip, I realize just how many pictures we took. We must have taken at least 20 photos of Shamu the killer whale at SeaWorld. In part I took all these pictures so Mattie would remember our trips and vacations together. It never occurred to me that Mattie wouldn't be alive in the future, and that the pictures would really be needed by me as reminders of our time together as a family.


Quote of the day: Every morning, I wake up and forget just for a second that it happened. But once my eyes open, it buries me like a landslide of sharp, sad rocks. Once my eyes open, I'm heavy, like there's to much gravity on my heart. ~ Sarah Ockler

Today was a day to remember! Peter had told me earlier in the week that he was going to devote Saturday to tearing up our kitchen floor and laying down new tile. Peter had done this once before when Mattie was a toddler, so I knew he was quite capable of doing this job right. Peter is actually very gifted and can take on most household projects from plumbing, electricity, painting, carpentry, and the list goes on. Peter's motivation to do this was two fold. He knew I was unhappy with our kitchen floor, and second, he also knows he is traveling most of July, and won't be able to tackle such projects.

Why did I HATE our kitchen floor? Well when Mattie developed cancer and we spent many weeks and months living in the hospital, our complex was nice enough to surprise us with new kitchen counter tops and cabinets. This was ALL done while we were at the hospital, so I really did not have much say in the color of any of the items placed in the kitchen. However, in the midst of this kitchen overhaul, our kitchen floor was badly ripped up. So much so that several kitchen tiles were missing. While Mattie had cancer and of course shortly after he died, I could care less about the conditions of which I was living under. But as grief has set in and I spend more and more time at home now, I find that certain things irritate me. A ripped up kitchen floor was high on my list. So Peter tackled that problem today.

Since I knew Peter was going to be busy today, I was thinking that I would go out and run chores. However, as I saw Peter ripping up our floor, I could see there was no way he could do this alone. In fact, not only did he rip up the tile we placed on the floor, but he also ripped up the tile that was on the kitchen floor when we moved in. So that was two layers of thick tiles. It was an absolute mess and while he was pulling up tile, I was picking up debris and carting it to our dumpsters. I am not sure you can see this from the picture, but basically he had to pull up two layers of whitish tiles (the ones we placed on the floor and the original ones from when we moved in). After removing both white tile layers, we revealed the very original tiles from the 1970s, a lovely (I am joking!)yellow/brown tile. Pulling up tile was a major chore, but it did not even compare to actually retiling the floor.


Laying down new tile was something I have NEVER done before. But the tiles we bought were complex and really needed two people on hand to do it correctly. Peter is good with heavy duty and bulk labor, and I am very good at attention to fine details. So I was responsible for periphery work and other areas that needed custom tile fittings. As you can see I am surrounded by tools and tiles. However, this was NOT a fun project. In fact, I had several meltdowns throughout this NINE hour long task. Mainly because at times I thought we were over our heads and maybe this would turn out as a disaster. Peter even asked if we should stop, but something inside of me, said NO! So we persisted and I can honestly say we did a great job. I have now learned the art of tile laying.
When my mom visited my kitchen in May, what struck her about the kitchen is that it needed red accents instead of my blue. Mind you I had just changed the kitchen in the winter time to blue. My kitchen needed an overhaul after Mattie's death because I neglected it for two years and things piled up everywhere. Many parts of my home looked like something out of a bad clinical case study. However, my mom suggested red for several reasons. I have a new red microwave and many of Mattie's pieces of art in the kitchen are red. So today after placing down the new floor, I decided to try red accents instead of blue. It turns out I prefer the RED. No surprise there since red is my favorite color, it was Mattie's favorite color, and these red highlights capture Mattie's art pieces. As I looked around my kitchen tonight, I am surrounded in there by objects of people close to me who died. As you can see I have a black and white poster on the wall. This poster was from July 29, 1982, and it advertised the Creature from the Black Lagoon. My uncle (Dad's brother) gave me this poster because he was involved in the production of this movie. In fact in the poster there are two huge buildings featured behind the creature. The buildings are in Chicago, and my uncle circled the on the poster a portion of the building where he once lived. So that poster reminds me of him. Then next to the poster is a wooden plate. This plate belonged to Peter's grandma. The plate basically says, "of all the places I serve my guests, they always love my kitchen best!" Peter's grandmother was fiery, but we got along very well and she enjoyed her two visits to Washington, DC to see us. Naturally the remaining things around the kitchen are Mattie's. Our refrigerator door features many of Mattie's creations, and if a stranger should enter our home, he/she would most likely think a child was still living here. In a way, Mattie will always be living here through his things.


After a long and arduous day, I can say the kitchen floor is DONE! It looks a thousand times better, and for all the years we have lived in this space, this is the first year in which I am actually enjoying my time in this space. I love sitting at the kitchen table, looking outside into our garden, and of course hearing Mattie's fountains.

June 24, 2011

Friday, June 24, 2011

Friday, June 24, 2011

Tonight's picture was taken in August of 2007, during one of our trips to Coronado, CA. Mattie wanted to ride on one of these surrey type bicycles. That was great in theory, until we actually got on it and realized how impossible it was to move this thing with people in it. Mattie got a chuckle out of watching Peter and I working hard at pedaling, and in some way, we got a kick out of him laughing at the whole process.


Quote of the day: It's better to keep grief inside. Grief inside works like bees or ants, building curious and perfect structures, complicating you. Grief outside means you want something from someone, and chances are good you won't get it. ~ Hilary Thayer Hamann

Tonight's quote may sound harsh, but I couldn't agree more with the sentiments and thinking behind it. For the most part, society doesn't like to see pain, sadness, or grief emoted. In fact, when one does this, the subject matter is usually changed to make the griever supposedly feel better. However, changing the subject does nothing for the person grieving, and I suspect in the long run it does nothing for the other person either. Grief does complicate a person, mainly because it effects one's internal dialogue, one's feelings, and it certainly clouds one's outlook on the world and the people in it.

As a mental health professional, I naturally understand the power of sharing thoughts and feelings with another person. I understand how empowering it can be to feel heard, appreciated, and valued. However, with grief, sharing these thoughts and feelings with another is a bit different. For example, when I share my feelings about Mattie's death, I may have the expectation that it will be addressed in a certain way. However, being objective, most people are not mind readers and also most people haven't lost a child and therefore asking someone to grasp this existence isn't easy or fair. So to some extent true grief is suffered alone and it is dealt with internally. Though this is hard, it is even more painful to express one's self and then not get the support really needed or desired. Dealing with the loss of a child is so complex that seeking support even from fellow parents who lost a child doesn't always work either. So where does that leave the bereaved? Most likely in a quandary and at times feeling very isolated, misunderstood, and angry.

This week, Peter has been telling me of his penny sightings. He has found pennies on the sidewalk and he has found them at work. In addition, he even found a quarter this week in the middle of the street. That may sound mundane to you, but to us, pennies are special. My parents started a tradition with Mattie. They would sprinkle pennies around various locations in our home. Over time Mattie would find them. When he did, they would always tell him that the penny fairy stopped by for a visit since she knew how much he liked pennies. So now when Peter and I see a penny, we remember the days of the penny fairy, but we also take them as a sign from Mattie. The ironic part about this is both Peter and I found a penny today. I picked it up and put it in my purse. I did not say anything to those around me, but in my mind it was a sign from Mattie and I had to grab it.

I am very aware of the fact that the movie, Cars 2 is now in the theatres. When the original movie, Cars came out in 2006, Mattie was four years old. I took him to this movie with his buddy Zachary and Zachary's nanny, Sara. In fact, Zachary had seen the movie before us, but he really wanted Mattie to see it too. Sara knew I was very particular about what Mattie watched, but when she told me the plot and how she liked it, I decided we should go see it. Mattie loved the movie as did I. It made a big impression on me because it captured my heart and mind about how major highways took over small town roads and the impact this had on our Country and its communities. I was also moved by the friendships established in the movie and several of its moral messages. Mattie and I then told Peter about the movie, and we encouraged him to see it with us a second time. Peter was hesitant at first, because he figured how good could a movie about talking cars be. However, Peter fell in love with the movie and from that moment on, this movie became a special bonding moment for all three of us. We owned practically every toy Cars car, we acted out parts of the movie in our play times together, and Mattie and Peter bought the DVD and saw this movie countless times. Even in the hospital!

As I was in Target today with Ann, her mom, and Shayla (Mary's caregiver), I was bombarded with seeing Cars 2 toys and merchandise. I even heard kids talking about it. Naturally I understand their excitement. Some of us have had to wait FIVE years for this sequel, however, for me this brings about sadness. This would have been something Mattie would have wanted to see and this would have been something we would have enjoyed as a family. Somehow this further reminded me of my huge loss and how different Peter and I are from our former lives. If sadness was my only emotion, that would be bad enough. But I also experience anger and jealousy. I feel these things toward other parents, because they get the chance to do all the things that I no longer can do. It is hard to have these intense emotions an it is certainly equally challenging if not worse to harbor these feelings toward my friends.

June 23, 2011

Thursday, June 23, 2011

Thursday, June 23, 2011

Tonight's picture was taken in August of 2007. Peter, myself, and my parents took Mattie to Coronado, near San Diego. Mattie loved going to Coronado and he especially loved all the attractions and adventures of San Diego. That particular afternoon, Peter went swimming with Mattie in the hotel pool. When Mattie got out of the pool, he wanted to sit on top of me. He was all wet, but that did not stop him or me for that matter!

Quote of the day: And then it was, that grief and pain made themselves known to me as never before. Note this, because I knew the full absurdity of Fate and Fortune and Nature more truly than a human can bear to know it. And perhaps the description of this, brief as it is, may give consolation to another. The worst takes its time to come, and then to pass. The truth is, you cannot prepare anyone for this, nor convey an understanding of it through language. It must be known. And this I would wish on no one in the world. ~ Anne Rice

When I came across tonight's quote, I knew I had to post it to the blog. I couldn't have said it better. Experiencing the loss of a child is beyond traumatic and it is beyond enormous. I could write about it until I am blue in the face and try to paint a picture for my readers. But in all honestly unless you have personally suffered such a loss, I realize it is hard to understand the magnitude of my feelings. In fact, it would be impossible to prepare anyone for this type of loss, and I am relieved that most people will never have to face what Peter and I do each day. It is a pain that goes beyond what the human language can convey. Nonetheless, I give my readers a great deal of credit because most of you absorb what I am saying and yet keep returning the next day. Some of you have been reading this blog for almost three years. For which I am very grateful! After all Mattie's blog was created in July of 2008. So this July, it will mean I have been writing each and EVERY day for three years. This fact is almost hard to grasp.

I walked again this morning, and this routine is definitely important for getting me up and out of our home. Otherwise, it would be very easy to just stay put and not interact with others all day long. But it was a day filled with chores and yet I am working on two very interesting connections and opportunities for the Mattie Miracle Cancer Foundation. I will let you know about them as they unfold. In the midst of my day, I received a lovely picture from my friend Debbie. I gave her a car ribbon magnet that promotes Mattie Miracle. She not only thanked me, but she attached a picture for me to see the gift in use. That meant a lot to me as do all our volunteers who worked so hard on this year's successful Walk.  

I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "WOW!, the Foundation is presenting $25,000 to Georgetown Hospital. This is only the beginning of your successes in supporting children and their families as they fight this dreadful disease. It will change how current practices are now metered to families and patients. Part of why there is so much angst in the world is because of people's needs not being met. We understand this as counselors and the Foundation's message is for everyone. This is one of the reasons Brett Thompson took on the Foundation as a client. He recognizes the importance of your mission. Seeing you stand among the interns tells me that you will be involved with them as you were teaching. Although you don't see yourself in a classroom right now, the legislative arena will be your classroom and these interns are your students. I know that you will teach them well whenever you work together. I was happy to see that Carolyn Maloney is on board. She is our Representative for Roosevelt Island. She is a powerful force and has done a lot for our district. Now to your dream. I agree that the 'monsters' likely symbolize the cancer. I see your conflict as in the dream you were able to destroy the monsters and Mattie was still alive. What I found fascinating was you were able to reach a conclusion with this dream, not like some of your others. I believe that is an affirmation that you did conquer the cancer with all of your might. You are not G-d and can't decide whether someone lives or dies; that is why Peter and you couldn't keep Mattie here. I'm sorry that had to happen. You continue to do everything that you can to remember, honor, and love him everyday."

June 22, 2011

Wednesday, June 22, 2011

Wednesday, June 22, 2011

Tonight's picture was taken in August of 2007. My parents and I took Mattie to the Los Angeles Zoo. I hadn't visited that zoo for many years, and the irony of having a child I think is that you land up reliving parts of your own childhood. Or at least it gives you an excuse to do kid friendly things. Peter and I miss those excuses now. It did not take much to entertain Mattie. Mostly because he was always alert, engaged, and fascinated by his environment. Mattie had a natural curiosity about things, people, and places, and he brought this energy into all his interactions. I remember buying Mattie the spray bottle he was holding in this picture. It was so hot that day, and when he saw these spray bottles with little fans, it intrigued him. I still have this bottle, along with his lightning McQueen sunglasses around his neck, and the giraffe sun visor I was wearing. Mattie picked out that visor and I occasionally still wear it.

Quote of the day: Everyone grieves in different ways. For some, it could take longer or shorter. I do know it never disappears. An ember still smolders inside me. Most days, I don’t notice it, but, out of the blue, it’ll flare to life.Maria V. Snyder

I began my day walking over four miles. However, I must admit at times it is hard to walk in this heat. Nonetheless, I have been doing it and I find it gives me an excuse to leave our home and to clear my mind. The spring has been hard, not that any other season isn't challenging, but it just seemed like one emotional moment after the other with Mattie's birthday, Mother's day, the Walk, and Father's day. Then of course we move into July. July is no longer a happy month for me either, since this was the month Mattie was diagnosed with cancer. So walking and diversions are very needed.

This afternoon, I visited Brett Thompson, a managing director at Mercury (a high stakes public strategy firm). Brett has and continues to be very supportive of Peter, myself, and the Foundation. I am not sure how we were lucky (and I use that word sparingly these days) enough to find Brett and to have the opportunity to work with him, but there are some things I just accept. Brett has enabled us to have a presence on the Hill and to develop a solid legislative agenda that will bring awareness to the psychosocial needs of children and their families with cancer. I find Brett very easy to talk with, a caring individual, and extremely competent. Yes we are a client of his, but he has invested in our story and really understands the heart of the issues that form the platform of our Foundation.

Brett invited me to the office today to meet a group of 9 summer interns. All of whom are in college from around the Country. All nine of these interns are focused on obtaining additional congressional support to co-sponsor our HR 262 Resolution. Our original co-sponsors are Rep. Chris Van Hollen (D-MD) and Rep. Mike McCaul (R-TX) and as of this date the following other Representatives have co-sponsored this bill:

  • Rep. Raul Grijalva (AZ Democrat)

  • Rep. Michael Honda (CA Democrat)

  • Rep. Carolyn Maloney (NY Democrat)

  • Rep. R. Miller (NC Democrat)

  • Rep. Charles Rangel (NY Democrat)

  • Rep. Jackie Speier (CA Democrat)


  • The purpose of meeting the interns was to put a story and face to the issues. I had the opportunity to tell them about Mattie, about his battle, and the impact on Peter and I. In addition, I explained to them why it is imperative that we advocate for the psychosocial needs of children and their families with cancer. I haven't sat with a group of undergraduates since I stopped teaching. However, sitting around the conference table today reminded me of my teaching days.
    Mercury Interns:
    Louis from Delaware
    Lauren from Missouri
    Veronica from North Carolina
    Nathan from Oregon
    Nina from New York
    Mark from Washington
    Nick from North Dakota
    Louise from Washington, DC

    Brett knows I like visual documentation, and he is quite familiar with my blog, so he took a picture of all of us. In addition, he also told the interns that they should take pictures after each of their staff meetings on the Hill. I got a chuckle out of that because I am all about pictures and capturing the moment. I see I have inadvertently rubbed off on Brett.

    This evening, I am having a text message exchange with my friend Tanja (Katharina's mom). Katharina is away at camp, and while she is away, I try to email her every couple of days to let her know I am thinking about her. Naturally she is away and having a good time so I never expected a response back. However, tonight Tanja forwarded me a response that Katharina wanted me to have, because she wanted me to know she appreciated me writing to her. I think it is very special for an 11 year old to be so thoughtful, and in our own way, we have a friendship that was most likely nurtured through Mattie. Throughout this school year Katharina text messaged me to update me on what and how she was doing. The beautiful part about this is Katharina does this on her own accord. She is NOT prompted to do this by her mom. For someone who lost a child, this genuine connection with another child is a very meaningful aspect of my life, which is why I am writing about it tonight. In Katharina's message to me, she wanted me to know she read the book, The Little Prince. She said that the Prince reminded her of Mattie. I told Tanja tonight that I have to READ this book, because Katharina is now the third person to tell me that Mattie reminds her of the Little Prince. The first person who told me this was one of Mattie's original babysitters, Emily. The second person to tell me about the connection between Mattie and the Little Prince was Margaret, Mattie's preschool teacher, and now I am hearing this same perspective from a child. So when I hear things three times, I feel the need to explore them for myself.    

    June 21, 2011

    Tuesday, June 21, 2011

    Tuesday, June 21, 2011 -- Mattie died 93 weeks ago today.

    Tonight's picture was taken in June of 2009 at Mattie's "Reptiles Alive" birthday party. The real surprise was James (Campbell's dad and Christine's husband) dressed up as a cockroach. One of Mattie's favorite bugs! Mainly because he knew I hated them. Any case, Ann gave the kids these huge fly swatters, and Mattie proceeded to swat at poor James. James was a great sport, and Mattie felt as if he conquered and squashed a massive roach that day!

    Quote of the day: In days that follow, I discover that anger is easier to handle than grief. ~ Emily Giffin

    Last night I had a very strange dream. I rarely remember my dreams, so when I do, they are usually complicated. I would have to say this dream was bizarre and strange, and yet seems filled with all sorts of meaning. In my dream, I was in Florida and living in a GLASS house. The house was surrounded by a swamp. Peter and MATTIE were in my dream. As the dream continues, it is night time, and Mattie came to me in a panic. He wanted me to know that creatures, big creatures were coming out of the swamp and were planning on attacking us. Almost like a bad scifi movie. In my dream, I learn that the Florida town we were visiting had legendary swamp monsters and that the only way to protect one's self is to shoot them with a gun. I vividly see myself running through the house looking for a gun, and I find one, and start shooting at all the creatures trying to hurt us. With each creature that I shoot and kill, I receive a metal plaque with a roman numeral on it as a reward. These metals literally came flying out at me from the swamp! The whole thing seemed so vivid as did Mattie. One could discount this dream as pure nonsense, or perhaps it is my own internal struggle with cancer. Cancer was depicted as swamp monsters, expect in my dream, I was able to kill these monsters and protect Mattie, unlike in real life.

    I decided to walk today to get out of the house. Otherwise, I would be here in isolation working the whole day. I walked for five miles, which sounds like a lot, but the time just seemed to pass and I spent it focused on breathing and trying to feel less stressed out.

    I spent the rest of the day working at home, and addressed a great deal of post-Foundation walk tasks! In addition, next Wednesday, Peter and I are having a check presentation ceremony at the Hospital to give Linda (Mattie's childlife specialist) a check for $25,000! My goal is to make this gathering special for Linda, because without her presence our life in the hospital would have been beyond impossible. She helped Mattie, Peter, and I in extraordinary ways, and I am so happy our Foundation raised this money to help support her vital program.

    I received an email from my mom tonight. In her message she refers to a Josh Groban song. The irony about this is I was introduced to Josh Groban when Mattie was hospitalized. One of our friends sent me a link to his songs, and I fell in love with his voice as soon as I heard it in the hospital. I had no idea who Josh Groban was, but Mattie's nurse, Jenny, knew exactly who he was and she told me all about him. When my mom sent me this song tonight, it reminded me of that time back in the hospital.
     
    I would like to end tonight's posting with two messages. The first message is from my mom. My mom wrote, "This song entitled, "To Where You Are" has special meaning about staying connected to someone who has died that meant more than the world to you. It always makes me think of Mattie when I hear it and I thought you might appreciate listening to it too. In my mind, it produces vivid images of the adorable Mattie when he was with us and makes me want to believe that he is still there only looking down on us in a heavenly more spiritual way!"
     

    The second message is from Mattie's oncologist and our friend. Kristen wrote, "Just a quick note to let you know I am thinking of you. Much love on this Tuesday and everyday."

    June 20, 2011

    Monday, June 20, 2011

    Monday, June 20, 2011

    Tonight's picture was taken in June of 2009, during Mattie's "reptile alive" birthday party. My friend, Christine (Campbell's mom) hosted a party for Mattie and his friends at her home. This was Mattie's last birthday party he ever had, a I know he loved it. As you can see Mattie got a chance to touch and interact with many creepy looking things that day.This snake being one of them! Mattie was fascinated and intrigued and the whole day was full of fun for him and memories now for us. In my mind Mattie will always be 7, and yet if  he were alive today, he would be 9 years old. I can't even imagine that, and yet when I look at how his friends are growing, the reality sets in for me.

    Quote of the day: Relationships take up energy; letting go of them, psychiatrists theorize, entails mental work. When you lose someone you were close to, you have to reassess your picture of the world and your place in it. The more your identity was wrapped up with the deceased, the more difficult the loss. ~ Meghan O'Rourke

    Peter and I had the opportunity to go out to lunch today with a woman who works for a big pediatric cancer association. Since she just started working at that association, we wanted to introduce ourselves to her and talk about ways we can support each other. I try to keep my own personal commentary and insights about other pediatric cancer groups to a minimum. However, during today's conversation I was far more candid. Some people either like and respect my candor, or they don't.

    There are thousands of organizations and foundations focused on pediatric cancer, and I suppose when I entered this work, I had the ideal notion that this community would want to network and work with each other to achieve the common goal. Well unfortunately, just like everything else in this world, the world of pediatric cancer is NO different. There are turfdom issues and in some cases people who are very motivated by what a certain achievement will do for them or their organization. Again, there are days I can put this human instinct into context, and then there are moments when this disgusts me. In those moments, I feel the need to pull away from hearing about these people and groups and instead I remain focused on Mattie Miracle and solely what I feel we can do to help children and their families. At the end of the day, I have to see that what we are doing is helping children and their families directly and immediately! The way to help children and their families with cancer is to focus on the here and now, which means their psychological and emotional needs!

    So many organizations are focused on raising money to fund pediatric cancer research. This is most definitely needed and valuable, however, as a mother who lost a child to cancer, I am also a realist! In the fiscal year 2011, the proposed appropriations from the federal government to the National Institutes of Health (NIH) is $35 billion. Of which, NIH gave the National Cancer Institute (one of the 27 institutes within the National Institutes of Health) $5.1 billion for cancer research. However, here is the shocking part, out of these BILLIONS, only $ 200 million is dedicated to pediatric cancer research. Also keep in mind that the government is the largest funder of pediatric cancer research, however, each year these funds get cut. Now I realize this might not sound bad at all, until you hear the REALITY of the problem. The reality is our children are treated with cancer drugs from the 1950s, 60s, 70s! The LAST new FDA approved cancer drug for children occurred OVER 20 years ago. The only difference with how children are treated today lies in the quantities of drugs given. Children are given dosages at toxic levels, so much so that 80% of children with cancer experience toxicity and a lifetime of health issues and long term side effects.

    I would like to remain hopeful that there will be better pediatric cancer treatments available within my lifetime. But I look at our history in this country and our POOR track record, and realize while we figure out where the money is coming from to create new treatment innovations, while we figure out the technology and the medicine and the COMPLEXITIES OF treating the 12 major different types of pediatric cancer, something must be done NOW. That something is the psychosocial support of children with cancer and helping their families cope with this entire life altering journey.

    I learned about this popular video out there now on You Tube today. A cancer organization called, Make Noise 4 Kids, produced this video. The video illustrates using a PIE (yes like the one you eat!) the inequities of funding childhood cancer research. There are aspects of the video that are quite effective, especially when you see the sliver of pie (or money) remaining to conduct research on pediatric cancer. However, there are other aspects of the video that lose me because it seems more like an academic exercise (focused on fractions and PIE)  than on the real life presentation of the problem. I attached the link below, so you could come to your own conclusion!

    Make Noise 4 Kids: http://www.youtube.com/watch?v=fjp1es04qgE

    June 19, 2011

    Father's Day -- The Dedication of Mattie's Miracle!

    Sunday, June 19, 2011 -- 2nd Father's Day without Mattie

    Tonight's picture was taken in June of 2009, three months before Mattie died. At that point in time we did not even realize his cancer was terminal. We took Mattie to a baseball game at National's Stadium that June. It was a challenging day, because Mattie really did not want to watch the game, and as we wheeled him around, we got more stares and side bar conversations from others. I was so incensed that day that I can still recall the feeling it left with me. 

    Quote of the day: There's a fine edge to new grief, it severs nerves, disconnects reality--there's mercy in a sharp blade. Only with time, as the edge wears, does the real ache begin. ~ Christopher Moore

    I wanted to get Peter something for Father's Day, but it is hard to know how to acknowledge this day since Mattie died. What I decided upon was to have a star registered in Mattie's honor. So I presented Peter with the specs on "Mattie's Miracle" today. It is my hope that we can always look at the night sky and know that Mattie's Miracle is up there and shining down on us. If you would like to see what the star looks like, you can go to the link below and plug in the star's registration number!

    Registration number: SAO 335007
    Star Name: Mattie's Miracle
    Right Ascension: 120.8456656
    Declination: -30.6592526
    Dedication Date: June 19, 2011
    https://www.starnamer.org/cgi-bin/starorder/findyourstar.cgi

    Today, 99 of our Mattie Miracle Cancer Foundation Supporters were at National's stadium watching a father's day game. We can't thank the Gehrs family (Charlotte's parents) enough for donating these tickets to us which we gave away at the Foundation Walk on May 22, to contributors who made an on-site donation to the Foundation. Though a part of me wanted to join our friends and supporters at the game, I knew based on our circumstances that we did not fit in. It would have been impossible to be surrounded by families all celebrating Father's Day. Yet it isn't a good feeling knowing that we no longer can do things with our friends or participate in "normal" activities. In fact such a realization makes me feel further depressed and sad.

    In the midst of how I was feeling, I received two emails around 3pm. The emails contained a photo of the National's Stadium scoreboard. As you can see from the picture below, the Mattie Miracle Cancer Foundation was acknowledged on the board. We thank our friends Peter and Christine for sending us photos and making us feel as if we were part of the experience today with them.



    Peter started his day by walking on Roosevelt Island. This is a weekend tradition for him. Peter had MANY wonderful sightings today, actually too many to post. But I will highlight a few of his wonderful pictures which he shared with me. The first picture is of a Great Blue Heron. This heron actually blended right into the foliage, but fortunately Peter was standing at just the right angle which revealed this regal bird in all his glory. I am in awe of Great Blues because to me they do not look real, or perhaps they look like something from prehistoric times.
    The next photo Peter took was of a Mother Duck with all her ducklings. This would have been a sight Mattie and I would have greatly appreciated with each other.
    Though there are deer on Roosevelt Island, they are virtually impossible to see. However, this morning two deer were out and eating, and Peter got to have this sighting. Actually Peter had all sorts of natural sightings, which made me feel as if Mattie was indeed connecting with him.

    This afternoon, Peter and I went to the DC Aquatic Gardens together. At this time of year, the Lotus flowers are in bloom. These are an absolutely breathtaking sight. There were many visitors to the gardens today trying to capture these flowers from all sorts of angles.
    A close up of one of these glorious Lotus flowers. Seeing these flower in their various stages is an indescribable sight!
    In addition to the Lotus flowers, the Water Lilies are also in bloom. There were lilies of various colors, shapes, and sizes!
    What a color, and I can really see why Claude Monet was intrigued by these flowers!

    Along our journey we saw these two Turtles and thought of Mattie!
    Then we spotted a Frog, and thought of Mattie!
    Next we spotted a Dragonfly, which also made me think of Mattie and his LOVE for bugs!
    Our final nature sighting was this Butterfly, one of the symbols I have attached to Mattie's memory! So throughout our day, we thought of Mattie and absorbed all these signs from nature of his presence in our lives.
    On our journey home from the gardens, we had to pass National's Stadium. Not a good plan for me! All I could think of when I looked at this Stadium was the last time we took Mattie there. I hated watching people staring at Mattie's frail body, sick existence, and thinking of how different he was from them. That image will always remain with me. In addition, today I also imagined many of our friends sitting inside that stadium, and yet the visual seemed too much for me to handle. It was an illustration of just how isolated our world has become. We are true outsiders in every sense of the word. For when you no longer can fit in and enjoy special occasions with friends this indicates just how much we have lost. Mattie may have died over a year ago, but the loss and grief from this death is experienced everyday, some days it is subtle and other days it is quite profound.

    I would like to end tonight's posting with a message from my mom to Peter. My mom wrote, "You were Mattie's support when he needed love, understanding, encouragement and a dependable, devoted dad to help him endure the pain and suffering of cancer that an unkind fate dealt him without hope of remission or a chance to grow up and lead a normal life. Though you had little time together, you made his brief seven years of life on earth the happiest that any little boy could possibly hope for and that is a record that you can be proud of. He loved you dearly beyond earthly calculations and you can take pride in the strong bond between you that not even death can destroy. Although this cannot ever be a happy occasion, you are a good dad, one of a kind, and your devotion to Mattie is alive and well in the establishment and the achievements you have directed to the Mattie Miracle Cancer Foundation!"