Mattie Miracle 2021 Walk was a $125,000 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: 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, 2010

Friday, June 25, 2010

Friday, June 25, 2010

Look at this face!!!! Can you guess when this picture was taken? Well it was taken in July of 2009. Right after Mattie's speedy recovery from his sternotomy and a month before we learned that Mattie's cancer spread everywhere. It is hard to believe that in this picture was a very sick little boy, who we were pushing to do physical therapy. Despite cancer taking over Mattie's body, he fought! He fought to regain his strength and to try to walk again. Naturally as July 2009 wore on, Mattie's energy decreased significantly and he was unable to breathe without the use of oxygen. Tonight as Peter and I were walking home, Peter told me to look up in the sky. There before me was the most beautiful moon. It was breath taking, and all I could think of was my Mattie moon. Just as the moon lights our night's sky, I thought the energy in tonight's picture captured the light that Mattie brought to our lives each day.

Poem of the day: Spirit Within by Charlie Brown

I saw the tree they planted
In memory of you
And I suddenly realized
That you were here too
A quiet presence
But very much here
Radiating serenity
With nothing to fear
I have to be open
And willing to see
What my heart already knows
You're always with me
I carry you inside
As I did once before
But this time you stay
Within, evermore
I'll see you again
On that "other side"
And until that time comes
I'm here for the ride.

I had a very social day today, and as I sit to write tonight's blog, I find that I am very tired physically and emotionally. I met two of my former students for lunch. One of my students, Charlie, my blog readers know quite well. Charlie and Theresa were students of mine when I believe I was pregnant with Mattie. It was a long time ago, and life seemed very different back then. It was nice to catch up with both of these women, and Charlie told us some funny stories about how she met and married her husband. Theresa and I learned another side to Charlie today, which is ironic, because just when you think you know a person, there is always more to learn. At lunch we also talked about cancer defining a person. I do think as much as others in our lives may want us to get over our cancer experiences and become whole or "normal" again, I think it is safe to say that this isn't going to happen. From my perspective it can't happen, especially since, talking about cancer is what keeps Mattie's memory alive. It is what has altered my world, my views, my feelings, and my future. Not allowing others to know I am a cancer survivor is equivalent to me denying that I am a woman. Yes there are other parts to me, such as an educator, counselor, advocate, and wife, but I will always be a mom who lost her only child to cancer.

Later in the afternoon, I had the opportunity to spend some time with Ann and her children. Katie, Ann's older daughter, and Katie's friend, Lexi, attended a cooking class all week (in the picture: Katie is on the left and Lexi is on the right). Each day they learned to cook popular foods from different parts of the world, such as Italy, Mexico, Japan, and Germany. So this afternoon, they were very excited to be preparing dinner for their family. They planned out the menu, and while I was there, I was helping them with a potato recipe. These girls are 12, so I am learning to adjust my level of participation with their level of need. Remember I am used to working with a six or seven year old, so I have a learning curve for understanding the pre-teen. In any case, when in doubt, I just asked them if they needed help. The recipe called for them to boil potatoes, but I wasn't sure they knew how to test the potato to see if it was soft and ready to come out of the water. So unlike how I would react to Mattie, which would be rather hands on, I just discussed the technique from where I was sitting and reading my book. When I sensed that they really wanted my help, I got up and assisted, but I do think it is important to empower girls at this age, and therefore try not to hover. Any case, in the short amount of time I spent with them, I got a kick out of helping them.

I met Peter and his colleague, Heidi, for dinner tonight. We had a wonderful time getting to know each other. Heidi has spent a significant amount of time working in Africa and we talked about her experiences living overseas and the quality of life she had there. She talked about the complexities of living in places like Rwanda long term, and I found it very interesting and insightful. She highlighted the level of social isolation she felt at times and also described the lack of freedom to move about and do things, a freedom which we take for granted in the United States. I rarely connect with Peter's colleagues from work, so meeting Heidi was a wonderful opportunity. Because in meeting Peter's colleagues, I learn more about how Peter is perceived as a professional and how people feel about him at work. I clearly am biased because I was aware of Peter's numerous talents at the age of 19, when I met him in college.

I am packed and ready to go on this one night beach adventure. Because of beach traffic, we are going to leave at 7am. Wish us luck getting there, because Ann and I are both directionally challenged individuals! As I told her tonight, "Lucy, Ethel doesn't like getting lost." I did not think it was possible to have a zanier duo than Lucy and Ethel, but Ann and I do come close. I will miss the blog for a night, but I know it is in good hands with Peter.

My mom sent me a You Tube link today, and she entitled her e-mail to me, "There should be more of this." I wasn't sure what to expect, but when I opened up this video and watched it, it somehow made me smile. I hope it does the same for you!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It was lovely of Ann's children to donate their time and efforts to the car wash/fundraiser for Mattie. The generosity of children continues to impress all of us and reminds us in turn to be generous with others. It is nice that you got to go out to dinner with Debbi; I know how much keeping in touch with the people who helped Mattie (and you and Peter) means to you. Since you mentioned the book, "The Walk," by Evans, I picked it up but have not yet started it. However, I do have some thoughts based on what you wrote about it. Giving up one's innocence and facing life's realities is never easy. I do understand why you and most others would rather be "life huggers." Life is to be treasured especially because it cannot be taken for granted. That's the paradox we live with. To appreciate life we have to face the reality that life as we know it is not permanent but that either casts a shadow on our time here, or alternately helps us to make decisions about what is really important. As an adult, one can only pick the way you choose to spend the limited time you have; we don't have the ability to "create more." You know how precious time is now and although you would rather have remained with that knowledge in your subconscious, you face it every day. That's one of the reasons you have yet to figure out what it is you want/need to do going forward. You don't want to spend that un-reimbursable asset on something that is not worthwhile. As I practice today I will send you my energy to help you as you continue your search for where you need to take your life next. I hold you gently in my thoughts."

June 24, 2010

Thursday, June 24, 2010

Thursday, June 24, 2010

Tonight's picture was taken in May of 2009. Mattie was undergoing one of his last treatments of chemotherapy. Things seemed optimistic for us back then. This is before we knew that Mattie's cancer had spread everywhere. Linda (Mattie's childlife specialist) gave Mattie star and planet glow in the dark stickers to place on the wall near his bed. He loved them! Then Mattie got into a goofy mood, and had Peter blowing up rubber gloves. In fact, Mattie got the PICU nurses involved as well, which explains where the purple gloves came from. To make a long story short, that night Mattie was surrounded by rubber glove balloons, and he even attached one to his remote controlled car. He had me write the following message on the balloon, "I Love You Ashley" and then he remotely drove the car down the hallway of the PICU. Ashley was one of the fantastic PICU nurses who we had the opportunity to meet over the year. Ashley was from Boston, went to Boston College (like myself), and wasn't only a competent nurse, but was warm, empathetic, and understood Mattie. Needless to say, Mattie transformed rubber gloves for me that night! By the way, Ashley was very touched that night, and if I recall she came into the room with a tear in her eyes to thank Mattie.

Poem of the day: Saying Goodbye by Brenda Penepent

Go now, my child, the time has come.
All tasks today are done.
There are others waiting there for you,
And songs yet to be sung.
Go quietly, go softly,
Leave all pain and fear behind.
Today has left a part of you
In our hearts, our souls, and minds.
I’ll remember you, my dear one,
As I lay down to sleep.
I’ll remember that you made me smile,
Although, it makes me weep.
As you go to face your future,
As you go to touch the sky
Know that God makes all things possible,
Angels never die.
Go now, my child, the time has come.
All worldly tasks are done.
There are others waiting there for you,
And songs yet to be sung.

I finished the Evans' book, The Walk, which I told you I was reading a few weeks ago. Unlike his other books, I was very disappointed with this book for many reasons. However, toward the end of the book there was a passage that caught my attention. Mainly because after Mattie's death, I have been questioning my religious beliefs of whether there really is life after death. A concept I never challenged growing up or even in my adult years. However, post-cancer, everything and anything is up for debate in my mind. Here is the passage that had me stop and wonder...........

People who have near death experiences, that's what they called them, have trouble keeping jobs or staying married. I guess we just get bored with what's here. Normal people don't know anything else, so they live as if this life is everything. It's like Mrs. Santos, down the road at the Delgado ranch. The farthest away she's ever been from home is Seattle. She has no idea what's out there. She can't even comprehend the mist rising off Sun Moon lake or the way the Italian sun gilds the Chianti vineyards. In a way that's the way the life-huggers are. I made this word up. They're people who hang on to this life because they think this is it. But they're fools, thinking they can hold on to this life. Everything in this world passes. Everything. You can't hold on to a single thing. But God knows they try. Some people even freeze their bodies so they can be woken again at some future time. Fools. All they have to do is look around and they can see that nothing here lasts. There's evidence of the other side everywhere. Just ask anyone who works with death - like geriatric doctors and hospice workers. Any of them will tell you what happens when someone dies. How often it is that someone dying looks up and greets a visitor from that other side. It's the rule, not the exception. But no one ever talks about that. They don't even talk about death, as if not talking about it will make it go away. How can you understand life if you don't understand death?"

This passage from the book is powerful to me because it captures many things I have observed and felt over the course of this year. After experiencing Mattie's horrific death, I think if you asked Peter and I about death, we most likely would say, we no longer fear death. We intimately saw what it looked it, and facing death head on enables you not to fear it. With that said, I rather have not had this education, and would prefer to be a life hugger. After cancer though, I am no longer a life hugger. In addition, it is not only doctors and hospice workers who know what happens with someone dies. Peter and I observed that a few hours before Mattie died, he tried to raise his weakened body and looked at the door of his PICU room. By this point Mattie was having trouble breathing and also was for the most part incoherent. Nonetheless, I could tell he saw someone, and he was sure someone was standing by the door. It was a very eerie feeling, because he was adamant and wanted us to see it too. I have no idea what he saw that night! Scientifically I am sure if we asked some folks in the medical profession, they would have a very logical explanation for Mattie's sighting and behavior. However, having a spiritual side, I do believe that this was a message and a sign to Mattie and to us. Evans' passage made me re-evaluate whether my initial notions of life after death are really correct. I have no conclusions, but I do know what I distinctly observed with Mattie. I also agree that to understand the purpose and true meaning in life, you have to experience death. Death has opened my eyes to what is important. The analogy Evans' is trying to make is that death is similar to having an adventure or a visit to a new country or culture. Such a visit transforms you. It opens your eyes to perhaps a new way of communicating, it exposes you to different foods, traditions, and attitudes about life. Similarly, death also can have this profound impact. So in essence, I may not have traveled anywhere during the last two years, but cancer and death did introduce me to a new world and a new culture.

I went with Ann today to the lower campus of Mattie's school. She was picking up her girls from summer camp, and I remained in the car. I was staring at the playground, and in the distance something VERY green, a new greenish color, caught my attention. Sure enough it was Mattie's tree. I had the strangest feeling come over me at that point. Seeing the tree almost took my breath away, but at the same time, it made me feel like I was visiting Mattie. I have no idea why, but seeing that young but strong tree standing there, seemed very symbolic of Mattie. The irony is I did not think about how I was going to feel by coming on campus today, and was open to any feeling that I had. In that state of openness, I felt I was in the presence of Mattie.

I had the opportunity to be at Ann's house for the car wash today. Though it was as hot as it could be out and it looked like rain, there was an level of excitement in the air. The kids were really motivated to do this car wash, and I literally got a chuckle at watching them running around and spraying each other with water. Things started out slow, so I gave them my car to wash. In all reality, they did a great job, and I snapped some pictures of the process for you to see. In total, I would say they did five cars. Of those that stopped by, some we knew and others we did not. Some people just drove by and stopped to donate money to the Mattie Miracle Foundation. I had the pleasure of meeting Coach Howell from Mattie's school, SSSAS. I asked him how he knew about the car wash, and he told me his wife is an avid blog reader. I was very touched, so I have to say thank you Cathy for sending Jerry by!

In addition to the car wash, there was a table set up with cookies, chips, and drinks. With a donation, people could help themselves to these items.

The car wash team! From left to right is: Lexi, Abigail, Alice, Michael, Katie, and Michael.

The car washing team hard at work on my car! Mattie would have loved this activity! The idea of spraying water would have been up his alley.

Tonight, I went out to dinner with Debbi (our friend and Mattie's sedation nurse angel), and our friend, Tanja. Tanja's daughter is having a surgical procedure in July, and she wanted to discuss some sedation options with Debbi. It was lovely to see Debbi and I really value her input as a professional and friend. A friend who saw Peter and I undergo one of the worst things that can happen in one's lifetime. The beauty of Debbi is she simply understands where Peter and I are and always normalizes it. As we were talking about surgery and sedation tonight, I couldn't help but reflect back on Mattie's treatments. It was as if they just happened yesterday. I recall some things so vividly. We had a lovely dinner and I was happy to connect Debbi with Tanja, because Debbi has a way of handling stressful situations and making them more manageable.

I was telling Debbi that I am going to the beach for one night this weekend to visit Ellen's family (Ellen is Charlotte's mom). Ann actually asked if I wanted to go with her, since she is taking her girls to Ellen's house on Saturday. In my entire married life, Peter and I never did separate trips (other than work related trips of course). At first the idea of leaving Peter behind did not seem right, but as I was talking to Debbi tonight, I realized that it is okay, or actually better than okay, for us at times to spend time a part. Peter and I need different things to cope with our grief. This has been a hard realization, but one we accept and understand about each other. So I am alerting my blog readers that on Saturday, Peter will be doing the blog, and you will get the original author back on line! Which I am happy about. I am not sure how I will handle one day away from the blog, because this will be a first for me!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Another full and emotionally laden day for you and yet it sounds like you handled it well. Crying or not crying is not the test of whether you are strong enough to handle your grief contrary to what some people think. What is an indicator is whether you are able to get up and go on and do the things you need to do. Just like laughter or smiles or a flash of anger, these are outward manifestations of what we are feeling and not our ability to get things done. Unfortunately, some people don't understand the difference and judge by the emotions they see (or think they do) and not by the person's past and present activities and accomplishments. I am waiting to see the article by Rick (in the Post) and I know others are as well so please make sure that you let us all know when that will appear. I am sure, knowing you, that the sessions with the photographer will be interesting as well and he or she will probably be recruited to the cause! It sounds as if your meeting with Carrie was very productive and helpful to you both. I know that you will be a great addition to the board at Georgetown. Maybe you will finally be able to get the issues with admissions fixed! I want to share something that came up in practice yesterday with one of the teachers whose class I really look forward to. She is getting married and leaving the immediate area and she said she is having challenges deciding what to take with her and what to leave behind. In many cases, she said she couldn't even figure out why she had brought this item into her life while in others, she found herself examining her relationship with an item and trying to decide if she had moved beyond it. Yesterday's practice both physical and mental was about examining what we carry with us and how in order to make room in our lives for some new things, some new growth, we have to examine and leave (or give away) those things which no longer fit and continue to fill up our space. So today as I practice I send you my energy to help you continue to examine your ongoing and future roles and decide what it is that you want to do and what you do not. I hold you gently in my thoughts."

June 23, 2010

Wednesday, May 23, 2010

Wednesday, May 23, 2010

Tonight's picture was taken in January of 2009. Julie, one of Mattie's fantastic babysitters (a former student of mine), came over to play with Mattie, so that Peter and I could take a break. Julie knew Mattie when he was healthy, so she had a history with him, which I think helped. Despite the major physical and emotional changes Mattie dealt with, he still related to Julie, and I was so happy about that. As you can see from this picture, Mattie most likely asked Julie to take a picture of both of them together. So Julie was holding the camera over their heads and snapped a picture. I always wonder how Mattie's babysitters feel about Mattie's death! After all, these university students were of a tender age themselves when they worked with Mattie, and I remember when I was in my 20's, I thought anything was possible. I had the wonderful ideals that come with youth, and a part of me wonders how Mattie's death impacts their world views.

Poem of the day: Bridging by Charlie Brown

It was fall and the leaves turned colors
But I did not notice
Then it was winter and the world turned white
I looked but did not see
Spring came and the flowers bloomed
I saw but my heart stayed cold
Summer comes, and yet
I cannot celebrate it without you
People work and play
The year progresses
Mother Nature paints her seasons
And yet, I am deep in the mourning colors of grief
Life goes on without me
I am not yet ready to join
A flow of events that make no sense
When you are not part of them
How does one "make meaning" when
The reason for meaning is gone.
I am constructing a bridge
Of words and deeds
That will link my past
To your present 8
Will you meet me halfway?

Peter and I had the wonderful opportunity to continue our interview from yesterday with Rick Rojas, a staff writer from the Washington Post. Rick is clearly interested in Mattie's/our story because he feels like we will give others a very realistic window into the world of pediatric cancer, the struggles, the battle, and how our lives have been transformed by Mattie's death. In a way, I am honored that Rick feels we are newsworthy and I continue to be impressed by his thoughtful questions and his ability to listen effectively. We met at a Starbuck's near Peter's office today, and we talked for about 90 minutes. In fact, if I did not have a lunch appointment, I most likely could have talked with Rick for hours. In a way, he felt bad that he had to bring up certain topics, but in all reality talking about Mattie and our struggles felt good (in fact, for me, it is therapeutic). Peter and I both answered Rick's questions, and at one point, Peter joked with Rick and I. Peter said to Rick, "do you notice how I answer the questions first, and then Vicki follows up?" Peter said, "this is Vicki's strategy, so while I am talking she is thinking, which is why her responses are so on target." Peter wasn't trying to say I was doing a better job than he was, because I wasn't, but he knows me well enough to know that when you ask me an emotionally laden question, I sometimes need time to process it and come up with a sound response. So I think one thing today's interview proved is that Peter and I are a good team, and we balance out each others statements. At the end of the interview, I told Peter that he is, and forgive the original Star Trek analogy, Captain Kirk and I am Dr. McCoy ("Bones"). Dr. McCoy was all about emotion and feelings and Captain Kirk was able to balance logic and reasoning with emotions. Peter got a kick out of this analogy as he was walking back to work.

Rick covered many topics with Peter and I. We talked about how our religious beliefs have changed once Mattie developed cancer and died. We talked about the impact of cancer on a marriage, we discussed the isolation of living with cancer, and how our priorities have been changed because of Mattie's death. In all reality, I told Rick that Mattie's death made me see that our materialistic priorities in this Country are very off base. That the real purpose to living is to connect with other people in a deep and meaningful way. It is through these connections that I believe true happiness can be achieved. Rick wanted to know how comfortable I have been about sharing our personal life on a blog for two years. I explained to him that I have NEVER kept a diary or a journal in my life, and before Mattie's cancer, I was a rather private person. I did tell him that writing the blog was easier when Mattie was alive, and my main purpose for writing back then was to keep Mattie's communities connected to him while he spent his days isolated in the hospital. However, my writing has changed with Mattie's death and in a way, it is harder and more painful to write each day. Sharing personal information on the blog is important to me because I feel this is my way of educating others about the grief process associated with a child's death, but I would be dishonest if I said that my honesty on the blog doesn't back fire on me, and cloud some people's viewpoints about what I am capable of. Naturally this deeply hurts me, and I wonder before others judge me, whether they could imagine how they would be handling their own child's death if this happened to them. I will keep you all posted about the article, but apparently the Post wants to take professional pictures of us to include with the article, so that may take a few weeks.

One thing CureSearch told Rick yesterday was that new cancer foundations sometimes start out with a bang, but then do not have the momentum to keep going and growing. Rick asked us how we felt about this. Peter explained why we are committed to the Mattie Miracle Cancer Foundation and I responded that I could understand CureSearch's viewpoint. When parents lose a child, they need to do something. Anything! So I imagine many new foundations get started out of this need. However, foundations are hard to maintain for various reasons. If the child with cancer is still living, the child could relapse and therefore it is impossible to run a foundation when a family is battling cancer. Or if a foundation is created because of the death of a child, it is possible that at some point, running the foundation may become too overwhelming and the need to separate from the world of cancer takes over. I told Rick, that for us the Foundation is a tangible extension of Mattie. We no longer have him in our lives to nurture, grow, and develop, so this passion and energy needs to be redirected. So I think the Foundation holds a very deep meaning for us. The Foundation is Mattie, and abandoning the Foundation in my mind is equivalent to abandoning Mattie's memory. We feel very fortunate to have met Rick, and hope to keep him posted on our Foundation's progress.

After the meeting, I drove out to Tyson's Corner for an interview lunch. I met with the Georgetown University Hospital Parent Advisory Board chair. Her name is Carrie. Carrie and I had a wonderful lunch together in which we chatted for two hours about our losses. Carrie did not lose her two children to cancer, but to another disease. Despite the differences in the deaths, we had a lot in common, and our lookouts on life are pretty similar. It was actually refreshing to hear someone else struggling with the same issues as I am. The irony is I found today's lunch much more meaningful than the support group I attended back in November of 2009. After we shared our stories, we then spoke about the parent advisory board and its mission and goals at the Hospital. I found out about an opening on the board at the Sean Swarner event we held at the hospital. A member of the board came up to me and asked whether I would consider being a part of the board. So I applied, and today was a follow up interview to my application. If the board votes me in, then I will begin working on this board in September. One of the roles I would be considered for would be to serve as the Family Centered Care Committee Chair. Below you will find the mission of the Advisory Board along with the vision of the Family Centered Care Committee.

The Georgetown University Hospital's (GUH) Pediatric Parent Advisory Board (PAB) was established in August of 2002 to provide family/professional collaboration and community support on issues of concern to hospitalized children and their families. PAB members represent a cross-section of parents of formerly and currently hospitalized pediatric patients as well as leading pediatric GUH physicians, nurses, and staff.

The vision of the Family Centered Care Committee is to educate staff and families on family centered care while improving the patient/parent feedback loop to GUH. All areas should be able to be analyzed and deemed action oriented.

Last night, I received a lovely e-mail from our friend, Mary. Mary's children went to the same preschool as Mattie. Mary's daughter, Abby, wrote about the Mattie Miracle walk in her kindergarten journal, and Mary wanted me to see it. I was very touched that this Walk should mean so much to Abby. What you need to understand is that Abby did not know Mattie very well, yet she and her sister, Emily, always refer to Mattie as their "friend."

Mary wrote, "Today was Abby's last day of kindergarten. She brought home a journal that she has been writing in all year. It was really amazing to see the progression of her writing. I took a photo of one of her journal entries,
and it is attached. It was an entry that mentioned that she was getting ready to go to Mattie's March on Sunday, May 23. She must have really been looking forward to going. In her picture, she drew herself, Gavin (Carolyn's son), Ellie (Carolyn's daugher), and Emily (her sister)."

Ann sent me a flyer today announcing a car wash and bake sale tomorrow in her driveway. The money raised from the bake sale is going directly to the Mattie Miracle Cancer Foundation. So if you are looking to get your car washed, and while waiting having a baked treat, come by and see us.


Thursday June 24th from 4 to 6pm at The Henshaw Driveway

For the location and more information, contact Ann at

Come get your car sparkling clean while you enjoy home baked goods. There are two kinds of washes, the Basic and Deluxe.

Basic: $5
*Two washes and rinses

Deluxe: $8
*Three washes and rinses
*Tire cleaning

**Donations for baked goods are greatly appreciated and will be donated to Mattie Miracle Cancer Foundation.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am exhausted just reading about what you accomplished yesterday. So many people to meet and speak with and the variety of responses to your stories and appeals. One has to wonder about the young staffer who appeared not to "get it" at all. Was she so young that she really did not have memories of 9/11 and no significant losses in her family? Or perhaps she is someone who has distanced herself from all of these kinds of discussions because of some personal pain? Sometimes it is hard to know what causes people to respond in what appears to be an inappropriate, uncaring way. I am glad that given her response, she is a "staffer" and not a representative and that she hasn't chosen to work in a caregiving profession. I love your mom's writing about the "blog of life". What she says is so true. So many have read it and now have a deeper appreciation of what they have in their lives. Many understand about letting the small things go and focusing on the important; the time with those we love. Remembering to say and show that love because we never know what will happen in our lives. When clients come in upset about something that seems very minor I often ask them if they will remember it tomorrow or next week? If the answer is "no" I ask why they are wasting their emotional energy on something that is clearly not really important to them. Your blog reminds us about that on a daily basis and does so in a very compelling way. I am glad that the day while exhausting was more productive than Monday was and I hope that Rick can help spread the word through the media about the importance of funding this critical cause. As I practice today, I send you my energy to help you continue to advocate for those who cannot speak for themselves. I hold you gently in my thoughts."

June 22, 2010

Tuesday, June 22, 2010

Tuesday, June 22, 2010 -- Mattie died 40 weeks ago today.

Tonight's picture was taken in August of 2009, a month before Mattie died. I did not know if I was coming or going back then. The intense stress of Mattie's prognosis was unthinkable and hard to come to terms with. Peter must have snapped this picture, as I was trying to rest, and Mattie was snuggled up against me. Behind us, was our life line...... the call button to our amazing HEM/ONC nurses. I will never forget that red button! As I was selecting this photo for the blog, I had a tinge of regret when I saw it. I regretted that I closed my eyes for a minute, rather than spending it more engaged with Mattie. I now have a lifetime to rest, but only had a finite amount of time with Mattie. When I happened to text message Ann about this today, she responded with a reality check. I normally don't quote Ann, since many of our conversations are between us, but her response was, "Good God you were amazing and took almost zero breaks from him, you pushed yourself beyond belief and should have no regrets." Though on some level I know this, I do need reassurance and validation at times, and in those moments my Angel of Hope is always there for me. As I focus upon time tonight, I have attached a link to a song, by Clint Black entitled, Spend my time, that is very meaningful to me.

Poem of the day: While Life Goes On by Brenda Penepent

A drop of dew on the rose
Outside my window
Greets my morning eyes
With a promise of new beginnings.
Sunlight softly steals a path
Along the floor of my kitchen;
Reminding me that time will pass,
With or without me.
Animals awaken from slumbers
And busy themselves with the day.
People in cars pass by
While life goes on.

This poem, While life goes on, captures the feelings and thoughts of someone experiencing grief. I know I am always amazed to think that my world has changed dramatically, and yet as I observe others around me, life moves on as usual. Cars pass by, people head to work, children enter school and go on vacation, and the list goes on. As today marks the 40th week of Mattie's passing, I can't help but reflect upon the time passing by. It is just that, it is only time. The feelings, thoughts, and memories of Mattie are alive and well in my heart and mind, and no amount of time will erase the horror Peter and I lived through.

Unlike yesterday, today was a very empowering day. Maybe because if I was born to do something, then today I had a glimpse as to what that actually was.... which is to advocate for those who can't do it for themselves. I naturally do this, which is probably why I became a mental health counselor, but my role and experiences have evolved thanks to the lessons I learned from my best teacher, Mattie. Living in Washington, DC and being involved in many professional counseling associations, I have had numerous advocacy training opportunities and visits to Capitol Hill to educate and advocate for the counseling profession and the clients we serve. I am thankful to the American Counseling Association and the American Mental Health Counselors Association, who taught me so well. Thanks to these organizations I am very comfortable lobbying on mental health related issues, but I never had to speak about something very personal and close to home for me, such as childhood cancer.

Peter and I attended a CureSearch rally this morning.  At the rally I met some wonderful and dedicated individuals in the world of pediatric cancer. We want to thank Cynthia Duncan, the executive director of Hope Street Kids (a private foundation started by Congresswoman Deborah Pryce, in honor of her daughter Caroline who died from Neuroblastoma) for inviting us to this Reach the Day event, and for personally helping us schedule our visits on the Hill today. I had the distinct honor of meeting Congresswoman Pryce today. Peter met her last year, but I never had the pleasure. Deborah and I immediately connected, most likely because we share something VERY important in common. We lost our only child to cancer. We cried together in the middle of a park, and we both discussed how our lives are profoundly changed. Deborah talked about how childhood cancer destroys marriages and I told her I could see that happening easily, especially since no two people respond to grief in the same way, and therefore this can provide great stress on a married couple. I enjoyed meeting Deborah, I admire the outstanding work Hope Street Kids has done and continues to do, and I find the fact that grieving parents talk the same language very comforting.

Before I share some pictures with you from our day's event, I also want to mention that Rick Rojas, a staff writer for the Washington Post, was with Peter and I the whole day. Rick did an article on Mattie last year, and is no stranger to our story, after all he too is a blog reader. Rick was a trooper today, because we were out in the hot sun for the rally and then walked from one congressional office to another. Anyone who has been on Capitol Hill knows that you can get great exercise just walking from one congressional office to the next. Some offices are in different buildings, and no matter how often I visit the Hill, I always get lost. Once inside, each floor and corridor looks exactly the same to me. Fortunately I had Peter with me, so I paid no attention to where we were going, but instead had the opportunity to talk to other parents and Rick who were trailing around with us.

I found Rick's observations and questions very meaningful. Rick first interviewed Peter and I in the park where the rally was, and one of his questions was how did I survive the ordeal of Mattie's cancer diagnosis and death? My most immediate response, and it is true, was the incredible support of Team Mattie. I explained to him for over a year, I NEVER had to cook a meal, I NEVER had to buy a toy, and I always had someone to talk to. I told him that I have to find meaning in Mattie's death, and knowing that people read the blog each day makes me feel as if my message is being at least read and perhaps internalized by others. I want to think that our profound loss is a life lesson for others, and that we are making a difference. Rick watched us go from one congressional visit to another. We did four visits in total for today, which may not sound like a lot, especially when I consider that I have done maybe 8 visits in one day with counseling organizations, but FOUR was A LOT! It was a lot because of the content we were talking about. We all shared our stories of childhood cancer with the staffers we met, and some of the stories brought me to tears, and I cried right in the middle of a meeting at Senator Mikulski's office. Peter and I visited the following offices today: 1) Senator Mark Warner (D-VA), 2) Senator Barbara Mikulski (D-MD), 3) Rep. Chris Van Hollen (D-MD) --- We actually met him and took a picture with him!, and 4) Rep. Joe Sestak (D-PA).

Rick could clearly see that each time our group came out of a staffer meeting, our reactions were different. Some of the staffers were more receptive to the issues we were discussing than others, naturally, that is human nature. But one staffer shocked me completely. She heard us share very emotional stories about our children, and her affect remained FLAT throughout each story. Two of the moms we were with had issues with the staffer's demeanor, and began to assert themselves even more. I understood their frustration, but I think their style only further distanced our case with this staffer. One of these moms told the staffer that she did not feel as if this young individual understood or could relate to what we were telling her. In fact, this mom asked her to take a step back and asked her to remember where she was on September 11, 2001. The staffer said she COULDN'T remember. Shocking as that sounds! The mom then asked her if she knew how many people died during 9/11. Again the staffer had NO idea! So we educated her, but here is the connection that the mom was trying to make. She asked the staffer whether the Senator would try everything in her power to prevent another 9/11 attack? Thankfully the staffer answered, yes. She got that answer correct. The mom then said, that in 9/11 around 3000 people died, however, each year around 3000 children die from cancer. So unlike 9/11, which thankfully was an isolated attack, cancer is here to stay, and she wanted to know what legislation the Senator supported that would look out for the well being of our children with cancer. It actually was a great analogy, and I am not expressing it as well as it was delivered. However, in great disappointment the staffer did not know how to answer our question, and in all reality, she made it seem like the welfare of our children is not her Senator's priority. The whole interaction was down right shocking, and if I were this Senator, I would be embarrassed by the way this staffer represented the office.

Rick was able to see the frustration on our faces, as well as hear the screaming through the conference room door while we were meeting with this particular staffer. So therefore, when the meeting was over, he asked us all some questions. He wasn't allowed in the meetings with us, because many of the offices refuse to allow media in unless their communication's person sits in on the meeting. Rick asked us to compare our meetings in Senator Warner's office versus Senator Mikulski's office, and clearly we had a night and day experience. What I appreciated about Rick, is not only was he covering our story, but he was really participating in the process with us. He helped us talk through our feelings and I appreciated his thoughtful questions.

The two champions in today's visit were the offices of Rep. Sestak and Rep. Van Hollen. Both of these individuals are HIGHLY supportive of pediatric cancer issues, realize much more funding is needed, and their staffers are not only empathetic, but proactive, and very responsive. In fact, Rep. Van Hollen actually attended part of the meeting we had, and he was not only supportive of our mission on the Hill, but was gracious with his time. Ironically, Rep. Sestak's office and Rep. Van Hollen's office were the only two offices that acknowledged our immense loss and the courage to come speak about it only 9 months after Mattie's death. Their sensitivity caught my attention, because I know the tight time lines they work under in a given day. Peter and I are excited about the opportunity to continue to work with Rep. Sestak's office, with the upcoming Pediatric Cancer Caucus meeting in September.

As we said our good-bye's to Rick today, he asked us whether we would meet with him tomorrow. He wants to continue the interview and hear more about Mattie's amazing story. I was actually honored by this invitation, because CureSearch told us that Rick was going to profile four families from today, but in essence that did not happen. I do think Mattie's story is compelling, and I feel honored to be able to tell it.
As my mother says in her posting tonight, the blog is "a bridge of words that connects others more fully to Mattie’s life and its significance and not just to his death."
Here are some pictures I took from today's event!!!!!!

Former Congresswoman Deborah Pryce (R-OH), who also established the Hope Street Kids Foundation, delivered an empowering message to parents today at the rally.

The next speaker at the rally was Dr. Peter C. Adamson. Peter is a pediatric oncologist and leading scientist at The Children’s Hospital of Philadelphia Research Institute, has been selected to lead the Children’s Oncology Group (COG) in its efforts to find cures for children with cancer. We had a meaningful conversation with Peter today, and he agreed with us that the treatment for osteosarcoma is still barbaric (when you think of the limb salvaging surgeries that are involved). Peter was very familiar with all of Mattie's doctors, especially Dr. Shad and Dr. Henshaw.

The next speaker was Adam Axler who is the Health Legislative Assistant in Joe Sestak's office (D-PA). We met with Adam later in the afternoon, but he delivered a powerful message of support in the morning.

Peter and I in front of Senator Barbara Mikulski's (D-MD) office. Two other moms joined our group.
Peter and I pictured with Rep. Chris Van Hollen (D-MD). Also during that meeting, we had the pleasure of talking with Ray Thorn, Legislative Assistant.

My mom wrote to me today and the title of her message was "The blog of life." It is a very powerful message and I told her when I read it, I cried. It makes me feel as if Peter and I are making a difference, and somehow hearing this message from my mom made a big impact of me. I hope you find the message just as meaningful.

The Blog of Life by Virginia R. Sardi

An old Yiddish tale that has always stuck in my mind tells the story about a group of people sitting around a table privately lamenting their troubles when one of them suggests that they each put their troubles upon the table so that they might exchange them for someone else’s. In the end, each of them decides to take back his problems because the others on the table appear to be far worse than any of their own. You, in openly discussing the inner turmoil an illness like Mattie’s can cause a family, have given others a new perspective on their own lives. The Blog of Life taught them that they like the people sitting at the table would gladly take back their own troubles when they realized the enormity of having a child with a terminal illness. Despite the worries and concerns that confront people in the modern world, your blog has given many a yardstick by which to judge the normalcy of their own lives and an opportunity to appreciate their blessings of good health and abundance, often taken for granted. You have given your readers a much needed reality check which in the electronic age of sound bites and video images gets lost in the daily rat race to stay ahead of the curve. Through revealing your own heartaches in the blog, you have awakened your readers to the uncertainties inherent in life that is a sober message to them to get their priorities right given that the future they envision may never come. It is a great gift to your readers because it opens their eyes to the possibilities they may have overlooked to reinforce or create bonds of love and respect with those closest to them that are the building blocks of good future relationships as the family evolves and children become independent adults. By setting a wonderful example of parental devotion in tough times, you illustrate that the role of a parent is a sacred responsibility and that the opportunity to parent wisely is a function of quality time that is both finite and precious and should be a top priority in a successful life!

I refer to your blog as the Blog of Life because even though it was motivated by Mattie’s illness and death, you have written it with spirit and love as a detailed testament to Mattie’s character and your bond with him. It’s a bridge of words that connects others more fully to Mattie’s life and its significance and not just to his death. It is a thoughtful celebration of his life in words and pictures. In your daily postings of pictures and the recounting of treasured remembrances, you make his passion for life very real for your readers so they can better understand the heart and soul of what made Mattie the special unforgettable child that he was. Through the Mattie Miracle Cancer foundation, an expression of your deep commitment to his memory, Mattie’s determination to live will be remembered by your efforts to help other children stricken with cancer to increase their odds of being cured, a goal that Mattie would wholeheartedly endorse! If you sometimes wonder what keeps people coming back to read your story about what happened to Mattie, you and Peter, it is really very simple. It is a story about the depths of despair, the agony of loss, the soaring of the human spirit in times of trouble and the love that bound two devoted parents to their precious child in life and beyond. You inspire others by the depth of your compassion for the sick and lonely and by your observations about life and love, to always stay in touch with their better angels!

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I wish I knew the right words to say as I type you these messages each Tuesday.... I can only say I admire you more and more each day for your advocacy and tenacity and your true love of Mattie. Thinking of you this Tuesday and every day."

The second message is from my friend, Charlie. Charlie wrote, "Thank you for sharing the information about CureSearch. Yesterday had to be an incredibly challenging day for you. As you said, surrounded by parents whose children survived while Mattie did not. And also to be "confronted" by the physical presence of many of those children. I am surprised you made it through the day. I know I would be thinking if the funding had happened as promised, would there have been more options out there when this disease struck Mattie and how many more children will be in the same situation with few or no options because the funding isn't there to do the research. Keep us all posted on the progress and let us know if the Post writes any more about the foundation and/or your and Peter's story. As I practice today I will be thinking of you and sending you the serenity I gain to help you keep in balance as you meet your challenges on the second day of this event. I hold you gently in my thoughts."

June 21, 2010

Monday, June 21, 2010

Monday, June 21, 2010

Tonight's picture was taken in June of 2003. Mattie was over a year old and very curious. We took him to Great Falls, VA., and Mattie wanted to touch and explore his surroundings, as is evident in this picture! In fact, if he could have sprung out of Peter's arms he would have in order to grab a leaf, except Mattie wasn't walking yet. Even when Mattie was unable to walk or talk, he had an excellent way of getting his needs met ALWAYS.

Poem of the day: Father's Day 2010 by Charlie Brown

What do I do
What can I say
This is the first Father's day
Since you went away.
I see the children
And all their fun
Going through cards
To pick the right "one"
I thought my heart broken
But it breaks again
When I compare life
Between now and then
Celebrations and laughter
Kisses and hugs
Building legos with Dad
Or hunting for bugs
That's not this year
But Dad has your gift
A memory of you
Helps span the rift
Though you're not with us
You are in my heart
And through memories and love
We will never be apart

I spent a good portion of today at the CureSearch, Reach the Day event on Capitol Hill. When I got there, I met up with our friend Tamra. Tamra officially introduced Peter and I to staff members of CureSearch last year. Tamra and I had an opportunity to connect for a few minutes today before the event got started and I was telling her I was having a rough couple of days, with tears in my eyes. So I began the event on shaky ground and unfortunately the day did not get any better. It is very hard to be surrounded for the most part, by fellow parents who also struggled with cancer, but their child survived. Naturally I am thrilled their children are alive and attending the event, but it is a bittersweet reminder to me of what I actually lost. In fact, I was a bit surprised to be surrounded by children at such a training event. I understand the sentiment of why children are there, since this is about children but it just caught me off guard. Especially when the little boy behind me was screaming for his mom, literally I heard him saying, "I  WANT MY MOMMY." It was a line I was all too familiar with, and therefore got lost in thought after hearing it.

I attended all the sessions today, and even got to see one of Mattie's doctors, Dr. Jeff Toretsky, give a brief overview of his targeted therapy research.  For my long term blog readers, you may recall some of the issues I had to contend with when Jeff was managing Mattie's case. Despite my feelings, I listened to him objectively today, and I could see why he appealed to the audience. He makes information digestible, humorous, and yet interesting. So I can appreciate his work as a researcher, and was also happy that he acknowledged his team of doctoral and post-doctoral students working hard within his lab. Jeff came over to greet me when he arrived and hugged me when he left. I believe in all reality he wanted what was best for Mattie, but our styles were simply different.

Today's training session was to give the attendees some information about CureSearch as well as highlight the major issue we will be lobbying on tomorrow on the Hill. Here is some information on Curesearch that you may find of interest: "CureSearch funds the lifesaving, collaborative research of the Children's Oncology Group, the world's largest, cooperative pediatric cancer research organization, essentially a cancer center without wall. CureSearch manages a grant from the National Cancer Institute and distributes the funds, along with private philanthropic and non-governmental funds, to the more than 230 Children's Oncology Group member institutions in North America and around the world to support clinical trials. The Children's Oncology Group treats 90% of children with cancer in the United States, providing the unmatched combination of global expertise and local care."

The Children's Oncology Group (COG) "receives its primary research funding from the National Cancer Institute (NCI; NCI is one of the 27 institutes that comprise the National Institutes of Health). When the COG was established in 2002, the NCI estimated it would need $55.7 million per year to fund research and clinical trials.The COG has never received that level of funding from the NCI. The funding from the NCI for research and clinical trials support is not only insufficient, but also has remained flat for almost a decade (it has in fact decreased when adjusted for biomedical inflation). Due to funding shortfalls from NCI, the COG must, on an ongoing basis, evaluate studies to decide which studies to open and which will have to wait or never open."

We are lobbying for the full funding ($30 million/per year, over 5 years) for fiscal year 2011 of the Caroline Pryce Walker Conquer Childhood Cancer Act. As you may know, "The Caroline Pryce Walker Conquer Childhood Cancer Act is named in honor and memory of Former Representative Deborah Pryce's daughter, Caroline, who passed away in 1999 at the age of nine from Neuroblastoma. This authorization bill enjoyed bipartisan support, passing the House unanimously 416-0, and passing the Senate by unanimous consent. The House Appropriations Committee included $10 million for this authorization in the House-Passed FY10 Labor-HHS Appropriations Act, however, only 4 million was included in the consolidated appropriations act."

So in essence the bill was signed into law in 2008, however, it is up to Congress each year to determine how much it will actually appropriate to the bill. Sadly in 2009, only $4 million (of the proposed $30 million) was given to the Caroline Pryce Walker Conquer Childhood Cancer Act. The act has three components to it: 1) to enhance, expand, and intensity pediatric cancer research, 2) to enhance and expand infrastructure to track and locate patients to facilitate study of the epidemiology of pediatric cancer through a nationwide registry of actual occurrences of pediatric cancer, and 3) to provide informational services to patients and families affected by childhood cancer. The message given to congressional staff tomorrow will be that research cures childhood cancer. However, such cures are in jeopardy because funding has declined for pediatric cancer clinical trials over the past six year. Therefore, it is imperative that the Caroline Pryce Walker Conquer Childhood Cancer act be fully funded so that children have a fighting chance against these deadly diseases.

In summary, if this Act is passed, then Congress would mandate that the NCI allocate $30million to pediatric cancer research. CureSearch would then apply for and manage this large grant, whose funds would then be distributed to the 230 Children's Oncology Group member institutions (remember the COG is responsible for clinical trials, of which 90% of children in treatment participate in). If it sounds convoluted, it is! It took me over an hour to put these pieces of the equation together.

Facts to remember:

1) Cancer is the #1 cause of death by disease in children
2) Nearly 13,500 children and adolescents are diagnosed with cancer each year
3) 1 child out of 5 who is diagnosed with cancer dies
4) 3 out of 5 children who survive cancer suffer devastating, long-term side effects
5) more than 40,000 children are undergoing treatment for cancer each year
6) there are more than 350,000 children's cancer survivors in the U.S.

Later on in the day, Peter and I had the opportunity to meet and chat with the CEO of CureSearch, John Lehr. John is new to CureSearch, but it sounds like while he was at the Cystic Fibrosis Foundation, he raised incredible private funds, and he has many good ideas to try to unify the pediatric cancer community.

Peter was contacted today by the Washington Post staff reporter, Rick Rojas. Rick did an article on Mattie last year in the Washington Post. Rick will be following us and three other families around Capitol Hill tomorrow to hear about our stories and learn about our lobbying efforts.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I'm so glad Peter is home safe and sound. His trip gives you some wonderful things to talk about and share and that's great. I know that yesterday was bittersweet for you both; your first Father's Day without your boy. Your gifts were well thought out and well received. I hope that as time goes on, the pain recedes while the memories remain. I've heard about the Reach for the Day event but don't know much about it so thank you for including the link and I know you will keep us posted with a personal view of what is transpiring. As I practice today, I send my energy to you to help you as you participate in this event. I hold you gently in my thoughts."

June 20, 2010

Sunday, June 20, 2010

Sunday, June 20, 2010

This picture was taken on Father's Day in June of 2007. Almost a year before we learned of Mattie's cancer diagnosis. Mattie and I took Peter on a DC Duck's tour of Washington, DC to celebrate Father's Day. Mattie was intrigued by these tour buses because they can drive right into the water, and go from a land to a water tour. It was a hot, yet memorable day.

Poem of the day: What Is Grief? by Michele Young

What Is Grief?
Who really knows?
How to do it—and—how it goes
Grief I’m told is letting go
Be it right or be it wrong
Words and feelings to our own song.
Memories flood the tears in our eyes
Do you think our loved one hears our cries?
And how the heart aches to no end
Even knowing that our loved ones’ peace will send.
To feel so lonely and filled with fear
I wonder if the Lord does truly hear?
So our days go by hour by hour
As we smile and carry on with all our power
We stay busy, sometimes too busy to see
And notice in God, we truly need thee.
Our nights are filled with restless sleep
Even knowing you’re in God’s keep
We wake from slumber in the early morning light
To weep our loved one, now, out of sight
We toss and turn and try to pray
Please Lord help us through another day!
And on the day where silence was once cherished
This too, has somehow perished.
Alone we fight the pain, the loss, the sorrow
While waiting for a bright tomorrow
We try to understand words that feel so cold
We try to forgive, we try to be bold
We smile that smile
We walk that walk
We love unconditionally as we feel the pain of their talk.
We do desperately grieve inside
And try to live as God abides
For our pain and sorrow runs so deep
So deep that no one can see us weep.
So grief they say, as they point their finger
Get over it, it’s done, don’t let it linger
But “we” know it doesn’t matter how many days go by
Our hearts will always know how to cry.
So tell me, what is grief and who really knows
How to do it and how it goes?

As soon as the cat woke me up this morning, I checked my e-mail. I wanted to confirm that Peter landed safely in Brussels, which he did. In my mind, I thought Peter was arriving in Virginia at 3:30pm, but I was off an hour. At 2:00pm, he text messaged me that he was at the airport and going through customs. I was absolutely in shock that I had the time wrong. So I quickly put away the groceries I bought, and jumped back into the car, and headed out to the airport. Ironically, the time it took Peter to get through customs gave me enough time to actually drive and park at the airport. Go figure! So it all worked out well. When I saw Peter coming through the customs gate, I actually started to cry. Clearly I was happy to see him and to know he was back safely. Peter traveled for 29 hours straight! Needless to say he was exhausted, and couldn't wait to get home to shower and change his clothes.

When Peter got into the car at the airport, I handed him a vanilla shake. I told him that Mattie would have wanted him to have this in honor of Father's Day today. Peter was speechless, but clearly touched by this gesture. To all the fathers out there reading this blog, we hope you had a very happy Father's Day!

On Peter's arrival at home, Patches (our cat), was thrilled to see him. Patches has a very tight bond with Peter, and frankly I am thrilled that she will now turn to him rather than me at 3 in the morning! I gave Peter two gifts today. Both gifts were framed pieces of art. One was a piece of Mattie's artwork that he created with Peter at the Hospital one evening, and the other piece was the Sumie painting of a camellia flower I painted a few weeks ago. I wanted Peter to know that both Mattie and I were thinking of him today.

We had a nice dinner together on our deck and talked about his trip, all the people he met, and what he was able to accomplish. Peter brought home a couple of Rwandan pieces of art. One is a carved sculpture of a man. Peter titled it "Little Joe." This of course is an inside joke. The last time Peter went to Africa, he came back with this huge sculpture of a man, wearing what looked to be like a hula grass skirt. Mattie and Peter titled this big sculpture, "Smokey Joe." Smokey, because the wood smelled like it had been burned somehow in order to form its shape. It literally smelled like a BBQ. So today's gift made us laugh, because Mattie would have definitely appreciated the title, "Little Joe!" I put Little Joe by one of Mattie's lego structures today.

On Monday and Tuesday of this week, I will be attending Cure Search's Reach the Day event. Here is some background about the event, "Reach the Day marks the 10th annual mobilization of the children’s cancer community in Washington, DC to stress the need for Federal funding for children’s cancer research. In September 2000, at the invitation of Congresswoman Deborah Pryce of Ohio, a small group of parents descended on the nation’s Capitol to provide testimony about children’s cancer to members of Congress. This event took place one year after the death of Congresswoman Pryce’s 9-year-old daughter, Caroline Pryce Walker, from neuroblastoma. Mrs. Pryce, now retired from Congress, continues to be an inspiration to the families who come together for Reach the Day." For more information, you can click on this link:

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I watch you challenge yourself and I sometimes ask myself if I would have the courage to do the same in your position. Being in an environment full of children just before Father's Day had to be so emotionally stressful; I think it is a wonder you managed as well as you did. As your neighbor proved, what is on the outside is not necessarily reflective of what is going on inside you. Some people wear their grief on their faces; their entire demeanor tells you that they are suffering. You don't do that but it doesn't mean you grieve any less; in fact, I think because you work so hard to look together, you sometimes grieve more. Today is Father's Day and I want to let you know that I admire and respect you and Peter for your role as parents; you did an amazing job in Mattie's time here with us. You will always be Mattie's parents to any of us who knew you in that role; that will not change. So Peter, I say thank you this Father's Day for being a great Dad and a role model for others. I hold you both gently in my thoughts."