Mattie Miracle 10th Anniversary Walk was an $119,000 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

May 29, 2010

Saturday, May 29, 2010

Saturday, May 29, 2010

Tonight's picture was taken in September of 2008. This was before Mattie had any of his surgeries, and was still able to move around and walk independently. I was playing music off of my laptop computer and Mattie was thoroughly enjoying dancing to the tunes. Clearly being attached to an IV pump did not slow him down! Also notice in the background were several cardboard boxes near the door. Mattie trained the Georgetown Staff early on that all packing boxes should not be thrown away, but instead used to develop a Mattie creation! 


Poem of the day: The Words of a Child by Charlie Brown

The words of a child speak wisdom
For in his heart is truth
He knows the meaning of friendship
In a way that adults have lost
Willing to admit to love
Not worrying about the words
Holding on to the feelings
Knowing death is not the end
So when you have the chance
To attend to the words of a child
Don't dismiss them for their simplicity
But embrace them for their truth.


As is typical with my delayed reaction to things, I am now feeling the after math of having the Walk behind me. Planning the Walk kept me extremely busy, interacting with people, and focused on a goal and objective. With that behind me, I find that I am exhausted and also experiencing grief on a grander scale. For some reason today, I had flashbacks of Mattie experiencing pain, and how Peter and I had to manage this pain with pain pumps attached to Mattie at home. I am not sure why my mind wondered there, but it did.

I spent the entire day doing chores, from laundry to cleaning out one of my closets. When Mattie was diagnosed with cancer and beyond, I let things around me just pile up. My closets are jammed packed with things, and my clothes closets, which used to be so organized, were in shambles. So much so that for almost two years now, my clothes have been stacked all around me. Though Mattie has been gone for 8 months, I hadn't addressed this problem until today. I spent hours on this one project, and though my clothes are back within a closet, there is still so much around me that needs to be organized. But I can only take on one project at a time.

I would like to share five pictures with you tonight that were taken by Jeff, Charlotte's Dad. Jeff was our official Walk photographer and he captured the posters (which were 2 feet by 3 feet in size) which Peter and I developed and were placed around the track. So while walkers were doing their laps, they got to read about our Foundation's goals in a very simplified format. Notice the adorable photos in the "C" track poster. These four children, Mattie being included, ALL died from osteosarcoma in 2009! Sammie, Emma, Keaton, and Mattie suffered tremendously, and now all these families are left with the aftermath of losing a child to cancer.









I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for continuing to share the pictures of the walk with us. As you said the energy level of the attendees, particularly the children comes through very well. I agree with Nancy and Christine that you listen better to children than virtually anyone else I know. That is demonstrated quite clearly by the reactions of the children who choose to share their feelings and confidences with you. True listening honors the teller and the listener; we rarely give or get that gift in our lives as adults and even less so as children since adults tend to dismiss or only half listen to what children say. What we often fail to see is what a gift we are given in return when we take the time to really listen, and not work to prepare our response or our own sharing, but just listening, accepting the words, the feelings and the intentions of the "teller." May this gift never leave you, and thank you for sharing it with us. I hold you gently in my thoughts."

Friday, May 28, 2010

Friday, May 28, 2010

Tonight's picture was taken in September of 2008. Mattie was in his second month of receiving chemotherapy. In the picture, you can see that Mattie is in his PICU bed and his buddy Charlotte, jumped in next to him. Most likely they were watching a Scooby Doo video, while Tricia (one of Mattie's unforgettable HEM/ONC nurses) was flushing Mattie's lines. The PICU environment is hard enough to handle as an adult, so I can only imagine what it must have been like for Charlotte and Mattie's other friends who visited often. I am very grateful that Mattie had friends that came to visit  because the sheer isolation of living in a hospital is hard to endure. My gratitude for these special moments, and special friendships, are quite deep and quite sincere.


Poem of the day: The Tree by Charlie Brown


As we stood in the grass yesterday
We remembered the day you went away
It brought a tear to each one's eyes
As we heard the words and looked to the skies
We remembered how you would laugh and play
And how hard you fought for the right to stay
So we planted a tree in memory of you
An oak tree, standing proud and true
It's here on the grounds of the school you loved
And we hope you can see it from up above.
Your tree standing strong and tall
Shading your friends one and all


I posted four more pictures from the Walk for you to view tonight. I have so many wonderful pictures that were sent to me, and over time I hope to be able to share many of them with you. I tried to capture the crowd and the energy at the Walk.

Left: The crowd assembling in the stands for a group picture and then the commencement of the ceremony.

Right: The Walk beginning.









Left: In this picture is my mom and Karen, along with Tricia (an outstanding HEM/ONC nurse) and Doris (Doris is wearing a shirt with the number 16 on it). Doris is a cancer survivor, and the mother of one of my very talented former students, Theresa. I was so honored to meet Doris, and even more honored that she attended our Walk. Doris joined forces with my mom and Karen, and the three of them walked in unity for Mattie and pediatric cancer.
Right: I love this picture! Mainly because it captures the excitement the children felt! The lead runner is Campbell, Mattie's good buddy from kindergarten.



This evening, Peter and I had the opportunity to go out to dinner with Ann and Dr. Bob. After dinner, we saw a play together entitled, Around the world in 80 days. We actually won these play tickets at the Resurrection Children's Center auction this year. I remember that auction night quite well, and I wasn't even thinking of bidding on these tickets until Ann showed them to me. I am actually happy we won these tickets because it introduced me to a theatre I had never been to in Bethesda, MD.

When growing up, I distinctly remember my grandmother singing the song entitled, Around the world in 80 days. However, I never read the book by Jules Verne or saw the movie. So I truly did not know what the play was about. Nonetheless, I must confess I had this notion that a hot air balloon was involved in the voyage. When I got home tonight, I read the playwright's notes, and he answered my questions. Mark Brown wrote, "There's no balloon! First and foremost. I'm sorry to burst your bubble, but there's no balloon. I can not stress this enough. I've said this from the very first day when several of my friends and I sat around discussing one of our favorite subjects - what novels would make good stage adaptations - and Around the world in 80 days came up. Someone said, It'll be great. We'll follow the balloon from country to country. I piped in with, There's no balloon. I hadn't even read the novel but somehow I knew there wasn't a balloon in it. It's the curse of the movie, really. The first one. The one with David Niven. It won five Academy Awards. The film had a balloon. It's what everyone remembers. But there's no balloon in the book and there's no balloon in this show." Jules Verne's inspiration for Around the world in 80 days was most likely George Francis Train, who in 1870 traveled around the world in 67 or 80 days.

The beauty of this play is it stars ONLY four actors and one actress. Yet these 5 individuals play over 39 different parts. It is almost hilarious to watch their costume changes and hear their different accents. It is indeed a comedy, however, it is a play with a moral message at the end. The lead character, Phileas Fogg, is a proper English man, who one night while at his men's club, wagers a bet with three other men that he can traverse the world in only 80 days. Throughout the play you see that Phileas is a man of precision, mathematics, and logic and reasoning. Emotions do not necessarily influence his decisions. Along his journey he meets a woman who he saves from being sacrificed by a tribe in India. This woman is indebted to Phileas and feels a special connection to him. However, Phileas tells her it was his "duty" to save her and he also had the "time." He was ahead of schedule along his voyage and he made his rescue of her some trite. However, in the end, Phileas learns that whether he wins the bet or not, his greatest accomplishment was he found love. The love of a woman. There was a lot of sighs and ohs and ahs in the audience over this conclusion. It may sound sappy I suppose, but the reality of the message is indeed very powerful. Without love, you have nothing. 

I would like to end tonight's posting with four messages. Typically I do not forward messages I receive from one friend to another. But my friend Nancy's message was so meaningful today, I forwarded it to Christine, Campbell's mom. Below you will see Nancy's message, and Christine's response to Nancy's message. I wanted to share it with all of you tonight, because the essence of Mattie truly affects so many of us, and despite our geographic distance from one another, these stories unite us, as it did for Nancy (who lives in NY), and Christine (who lives in Northern VA).

The first message is from my friend, Charlie. Charlie wrote, "Thank you for the continuing information about Sunday's walk. Your words and pictures help bring it to life for those of us who unfortunately could not be there. It seems as though all the children had a really wonderful day and that Mattie was remembered the way he would have wanted; with his friends enjoying all sorts of events he too would have loved to participate in. The tree planting was beautiful and the pictures are very special. I can tell that Mattie's friends will remember him as they pass by his tree or have the opportunity to sit under it and enjoy it's shade as they play. What a beautiful tribute to your boy. As I practice today I will work to help you find the energy to keep moving in a positive direction. I hold you gently in my thoughts."

The second message is from our friend, Danelle. Danelle wrote, "I wanted to tell you one other reason why an oak was such a great choice for Mattie’s tree. A friend of mine had the City of Alexandria arborist come out to her house (just up the street from me) and check out some of her trees. He told her that he is concerned because so many of the oaks in this neighborhood (basically the same neighborhood that SSSAS is in) are near the end of their lives and people are not replacing them with new oaks when they come down. They are choosing faster growing trees, or other trees for other reasons. He said over time, the oaks will all be replaced at this rate. I am so glad that Mattie’s tree is one that will help reverse this process. It seems fitting."

The third message is from my friend and colleague, Nancy. Nancy wrote, "I find myself reading the blog with a renewed energy. The poetry, the pictures from the walk, the explanations of all that went on that day filled my heart with HOPE for all of you. I was enchanted by Campbell's conversation with you. Oh, if we mere adults, could listen to our children as beautifully as you listened to Campbell, I don't think we would be facing all these horrible political and war agendas in the world. Children are our future and often they have answers on how to treat others. Campbell clearly loved Mattie and thinks of him, intensified, by the tree ceremony. What a leap he made to find the other tree! He is having an opportunity to see death as a happening and maybe not be as afraid to feel his feelings around the loss of his friend. It is a tribute to Mattie and all his wonderful energy as he endured so many painful days in a giving way. This reminds me of a recent reading about the way that terminal children often respond to their imminent death. They appear to be better able to go in peace than their 'older and more experienced' adult family. I think passing the HOPE necklace on is a fitting way to extend the message of the foundation. You are providing hope to families and the children facing this disease! If you decide to keep it, I believe it is still an important symbol of your hope with the Foundation. Either way, you will make a good decision. I trust that. Finally, I am not surprised that you've received so many messages from parents whose children attended. Although the walk was 'in memory' of Mattie, it gave the children a venue where they could be together with Mattie and others involved in the healing process. It gave them a safe place to learn from grieving and as we know children learn best from play and good vibrations in their universe. A brief digression about the initial picture of Mattie, you , and the PICU day. Dancing Queen is a personal favorite too and I had the best mental image of the people on the floor enjoying this upbeat sound. Like laughter, music gets to the soul easily and quickly. So much still left to learn and teach others about the grieving process and the living process. I end with a reminder of a wonderful quote that sits on our computer desk at home:"ENJOY LIFE - this is not a dress rehearsal. I wish you a peaceful and gentle weekend."

The fourth message is from my friend, Christine. Christine wrote, "I read your blog entry yesterday. I didn't know that Campbell found the other tree memorial. I feel choked up right now and am not sure why. I think it is the fact that, as Nancy pointed out, you really take the time to listen to children. It's not always easy to stop engaging with adults to have a meaningful conversation with a child. You never have a problem doing that. It reminds me of your skills as a parent and educator. I hope that you will always stay connected in some way to Campbell. I know that he feels a connection to you. By the way, the ceremony yesterday was very meaningful. Mattie's oak tree is really beautiful."

May 27, 2010

Thursday, May 27, 2010

Thursday, May 27, 2010

Tonight's picture was taken in March of 2009. Mattie was doing physical therapy in the hallway of the PICU. Naturally though, with Mattie therapy was NEVER boring. This particular day, Linda was playing ABBA's Dancing Queen, and literally all of us were moving about. Even people passing us by couldn't help but smile. Mattie brought a level of fun and humor to a very serious place. In fact, one woman came up to me about an hour after our performance and told me that we cheered her up, just hearing the music and watching Mattie's buddies singing and dancing through the hallway. I have no doubt the PICU most likely hasn't and will never experience a force like Mattie again. Pictured in the front row from left to right is Meg (one of Mattie's favorite childlife interns), Mattie (who is beating on a drum), Brandon (Mattie's best hospital buddy), and in the second row is Jenny (one of Mattie's art therapists), Kathleen (one of Mattie's favorite HEM/ONC nurses), Mary (one of Mattie's favorite childlife volunteers), Vicki, and Elizabeth (a social worker intern, who was kind enough to make an ABBA CD for Mattie to play at the Hospital).

Poem of the day: What Is It Like To Die? by Alice J. Wisler

What is it like to give up the body
so the soul can soar high
Far to that place of complete solace
no human eye begins to see
What is it like to be with the One
who holds the sunset in the sky?
What is it like to see the Giver of Life
when your body has breathed its last
Precious child, born from my body
what is it like to die?
Engulfed in seas of sadness
death has crushed my core
But for you, a triumphant occasion—
beauty in glistening warmth
Freedom from pain, exempt from sorrow
continuous Love and Light
Standing where the stone holds your name
my eyes scan the heavens
Shaded from the answer I cannot grasp
what is it like to die?

I have the pleasure of telling you about Mattie's tree dedication ceremony on the St. Stephen's/St. Agnes lower school campus today. However, before I share this special moment with you, I wanted to highlight the wonderful kid activities that were offered at this year's Walk. Particularly, we would like to thank Debbie Keefe and Sue Whitney for coordinating these creative, fun, and memorable activities. They knew Mattie was very fond of butterflies, so they had a whole tent dedicated to butterfly crafts. The kids had the opportunity to make their own butterfly houses, and then as a group they were able to create water colored butterflies to hang on a collective tree. That was only one of the stations available to the kids. In another tent there was face painting and balloon animals, and in the field there were old fashioned games. Seven of them to be exact, to match the 7 highest summits that Sean Swarner had climbed on each continent. I hope you enjoy these pictures!

Left: This year's Walk theme was "No challenge is too great, no climb too high." Therefore in honor of Sean's presence at our Walk, we decided to have a climbing wall for kids. This wall was 26 feet tall. This was a very popular attraction!

Right: In this picture Meredith, one of our great SSSAS volunteers, was placing a hand tatoo on a little girl.














Right: In this picture, you can see our George Washington University volunteers hard at work. They were in the "butterfly crafts" tent, and were helping children make a butterfly and write a wish on it to post on the tree.


Left: Here is a picture of the butterfly wishes attached to the tree.

Right: You can see Debbie, one of our kid activity coordinators overseeing the kids, and clearly this young fellow in front of her is fashioning his balloon hat.














Left: This was just one example of the seven field games that Debbie and Sue created for the Walk. These activities kept the kids busy, entertained, and happy! I have had many parents write to me after the Walk was over, letting me know that their children had such a good time and they want to know when the next Walk will be.







At 4:30pm, Peter and I had the wonderful opportunity to attend Mattie's tree dedication ceremony. A beautiful oak tree was selected and Peter and I want to thank the second grade (the grade Mattie would have been in) parents for their generosity in making this tree a reality. Particularly we want to thank Ann Bailey for spearheading this event, and naturally the school for understanding the importance of such an event.

Bob Weiman (aka the Magic Man), the head of the lower school, and I joked with each other today, because over the course of the last two weeks we have seen each other three times. Which is quite nice. Bob worked hard on developing the beautiful program for today's dedication. It was a very nice ceremony in which Joan Holden, the head of the school, delivered a beautiful greeting, as well as Bob Weiman, and Rev. Beales. Rev. Beales presided over the ceremony, and even had us water the tree as a symbolic blessing. This is a tree that Mattie would have loved. Oak trees were one of Mattie's favorites. For two reasons. The first is they produced acorns, and Mattie loved acorns and particularly loved looking for the perfect acorn with its attached cap. The second reason was Mattie loved to collect tent caterpillars, and the only leaves these fellows like to eat are oak leaves. So it seems quite fitting that an oak tree be placed on the campus as a remembrance of Mattie in a spot Mattie loved to play in (right near the sandbox).

After the ceremony, there was a reception with cookies and lemonade which the children enjoyed. Campbell, one of Mattie's closest kindergarten friends came up to talk to me during the reception. In fact, when I saw Campbell at his house for the first time last week, he came up to hug me and began talking. Naturally I remember Campbell from two years ago, and it is amazing to see his growth and maturity in two short years. Campbell wanted me to know that he watched the grounds crew planting Mattie's tree this week. He explained how the tree was carried to its spot, and how it was planted. He then went on to tell me that he is letting everyone at recess know this is Mattie's tree, and Mattie was his friend. Campbell also explained to me that he observed another memorial plaque on campus this week. He told me that a boy named, Tim, lost his life in the 1970s, and he asked me if I had seen that tree. I told him I hadn't, but clearly these plaques had made an impression on Campbell. In fact, Campbell's entire conversation made a huge impression on me. What Campbell is showing me is that children are very aware of their surroundings, they understand the concept of death to some degree, and can also reflect on the fact that Mattie is no longer a part of their lives, and yet they wonder what does that mean? Does it mean that Mattie is still their friend? Where is Mattie and is he happy? Does he feel lonely? These are just some of the questions I have heard children discussing this year. Which tells us, children do need to process the loss and if we do not help guide this discussion they will come to their own conclusions, which could actually be worse than the actual facts (which are bad enough!).

As Bob was delivering his message during the program, I was watching the children and their reactions. Bob spoke about Mattie's energy and interests, and I could see several children nodding their heads because they agreed with Bob's observations and messages.

Our friend Alison came up to me to chat at the reception. Alison always seems to find just the right little memento to capture the sentiment of the day. Alison handed me a bag. Inside the bag were wishing stones. On the stones was written, "miracle." In light of the name of our Foundation, I thought these stones were meaningful and clever. In fact, I can almost see us giving out these stones as we visit families in the hospital. Goodness knows when battling cancer, you hope for a miracle. I think it would be very symbolic for a family to be given such a stone to carry with them through treatment. The stones made me reflect on the "hope" necklace Alison gave me in September of 2008. Alison, I believe, gave me this necklace on her first trip to visit us in the hospital. She literally took the necklace off from around her neck and gave it to me. Most likely because I needed a great deal of hope to make it through the battle ahead. That necklace meant a lot to me, so much so, that each day Mattie battled cancer, I wore this necklace. I only stopped wearing it once Mattie died. I told Alison that I need to give her the necklace back. You see Alison's middle name is Hope, and therefore, I believe the necklace should go back to its righftul owner. However, Alison said that I should hold onto the necklace and give it to another parent who is battling pediatric cancer. I am giving her idea some thought, and perhaps "hope" is a symbol our Foundation can pass along to other moms. I would like to share some wonderful pictures of today, so you can see what the tree and the gathering looked it.

Left: Here is a picture of Mattie's oak tree. It is about 12 feet tall right and it has a memorial plaque in front of it.

Right: Pictured from left to right is Peter, Joan Holden, Vicki, Bob Weiman (notice he is wearing a red tie, most likely because it was Mattie's favorite color), and Rev. Beales.








Left: Peter and I watering Mattie's tree as Rev. Beales was delivering a blessing.

Right: The children also got to water the tree. In this picture you can see Mattie's buddy, Kazu, watering the tree.













Left: The reception table. Notice there are butterfly napkins, beautiful programs, and purple petunias (a flower I happen to love).

Right: I gave my camera to Mary today. Mary was Mattie's technology teacher, and over the course of Mattie's illness, Mary became an integral part of our lives. Mary snapped this moment today in which myself, Junko (Kazu's mom), and Kazuko (Junko's mom), were standing in silence. Periodically crying. Though this event was special and had many moments of happiness, there was also great sadness over why we needed the event in the first place. Junko and Kazuko understood and sat in silence sharing my pain. Not an easy place to be, but I felt their genuine love and concern. 



















 Left: The children enjoying the refreshments!













Left: Pictured with Mattie's tree is Joan Holden and Vicki

Right: Pictured with Mattie's tree is Kazuko, Vicki, Mary, and Junko


























Left: Pictured with Mattie's tree are Christine (Campbell's mom), Vicki, and Alison.

Right: Peter and I together in front of Mattie's tree.



























I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thanks for the lovely pictures of Mattie and Abigail. True friendship is such a precious gift; often we take it for granted. It doesn't always come in expected packages; oftentimes I wonder at the combination of people who are friends and those who look like they should be but are not. I appreciated your questions about resiliency. I often wonder about that myself. I see students from many places, often with terrible situations in their backgrounds and yet, they are upbeat and positive that things will work out well in the end. Others, with everything one would ask for, family support, sufficient funds, good health, seem to have all kinds of issues, often self generated. It's hard to know what makes the difference. I agree with you that Mattie's story has spread far beyond our expectations and has impacted so many people. He was a very special little boy and inspired many but it is also your ability to tell his story that has moved it past the local group of people who knew him. You and Peter have managed to bring Mattie's story out in a way that touches the hearts of people who have never had a chance to interact with Mattie. That's a special gift as well. During practice, the instructor reminded us about both masculine and feminine energy within each of us and the need to balance them to be successful. I think you and Peter are a wonderful example of that balance in your work and another reason why the foundation will be successful. As I practice today, I send you the energy to keep working on that balance. I hold you gently in my thoughts."

Wednesday, May 26, 2010

Wednesday, May 26, 2010

Tonight's pictures were taken in June of 2009. Mattie had his first and only sleepover. He stayed at Ann's house, and for two days he had a great time. Last night, Ann sent me an e-mail. The subject header of the e-mail was "friends." When I opened the e-mail, she had attached pictures of Mattie and Abigail together from their famous sleepover weekend. I selected two to share with you tonight, because they spoke to me. The one on the left was taken in Abigail's room. Mattie and Abigail were looking at a book together, and Mattie clearly seemed very comfortable and focused. The picture on the right, with Mattie and Abigail sitting outside, is simply charming to me. We can't see their faces, yet somehow in this position, there was a story to be told. Despite not knowing exactly what they were talking about, it is very clear to me that both of these pictures speak to the beauty of friendship. Abigail always treated Mattie as Mattie, not Mattie, the boy with cancer. I suppose that is the beauty of their relationship which continues to capture my mind and heart. Mattie and Abigail showed me what friendship is about, in that, all moments shared together are special regardless of the circumstances.

Poem of the day: Remembrance by Brenda Penepent


Tears fall from my eyes
As softly the memories flow
With tears, salty on my tongue.
I miss you so much.
Tomorrow is frightening
Except for the thought
Of seeing you again,
Another time, another place.
I hear your voice;
In my dreams you come.
We talk and laugh
About silly, important things.
Each day without you is less:
Less bright, less full…less.
I feel your love with me,
Yet, I want you to hold.
Faith in God eases the pain
For moments, sometimes days.
Still, I cry, but not for you,
For the loss I feel in me.

This morning I met up with Ann to go walking in her neighborhood. I remember walking with Ann one other time, when Mattie was in kindergarten. I met her one morning and we walked with two other women. I recall that morning two years ago, because it left a lasting impression on me. Ann is a power walker, and can really walk at a fast clip. Back then, though I don't comfortably walk at that pace, I could keep up with her without a problem. I was in better shape and was more physically fit. However, now, after many months in a hospital, and now dealing with grief, my lifestyle is anything but active. There were many times today I had to get Ann to slow down, because I honestly couldn't keep up. She adjusted to me, and did not make me feel inadequate for my clear lack of ability. Nonetheless, I couldn't help but reflect on the amazing physical toll Mattie's cancer and death has placed upon me. I am not the same person physically or mentally that I was when I entered this ordeal back in July of 2008.

I spent a good portion of the day outside in Ann's garden. It was a very hot and humid day today, but for the most part, I thrive in this temperature. Therefore for me working in her garden was quite nice. Over lunch today, we had a very philosophical conversation about what happiness means, how to achieve happiness, and what makes people resilient. Clearly we know that two people can be faced with the same set of circumstances, yet they may react completely different and thereby cope very differently. The question is why? We know that some people are more resilient than others, but again why?

I will post more Walk pictures tomorrow night. Tonight, I decided to post three pictures from tonight's fundraising event. Our friend, and Peter's colleague from his Arthur Andersen days, Wasfi, was a guest bartender at a wine bar, called Twisted Vines in Arlington, VA. Wasfi is not a professional bartender, but he took on this role so that whatever tips he generated tonight could go to the Mattie Miracle Cancer Foundation. It was a very clever fundraising venture, and it was so wonderful to see so many Arthur Andersen buddies in attendance. It felt as if we had a mini reunion in a way. But it speaks to the character of Andersen employees. Enron may have dissolved the company in 2001, but the spirit of the company and most importantly the relationships between colleagues are very strong and alive today. It was very evident tonight at this fundraiser, and I wanted to share some pictures with you!

Left: Wasfi, our friend, was the guest bartender. He is holding up his tip container, and all tips went to the Foundation tonight.

Right: The Andersen family. From left to right is Dan, JJ, Tom, Sybil, Josh, Susannah, Wasfi, Chris, Peter, Jason, and Vicki.






Left: While Peter was reconnecting with his Andersen family, I had my own reconnection experience. Leslie, Mattie's kindergarden teacher, came tonight, and we sat and chatted for hours. It was very nice to have this opportunity to share stories and to learn more about each other. It was very special to have this time with Leslie, and I am so happy she joined us tonight.

I continue to be in amazement by how Mattie's story has impacted the lives of others, and I am especially thankful for our community's continued support.

I would like tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "You had a very typical "letdown" after the march and the visits; I am glad you recognized your exhaustion and gave yourself some much needed rest. Right now you are working from "event to event" and as each one comes to a conclusion there is a sense of loss and confusion as there is once again no clear goal nor a solid routine to fall back on. Tomorrow is Mattie's tree dedication ceremony; I am sure that will be a lovely and meaningful one for all who can attend and I look forward to seeing some pictures on the blog. I think soon you are going to be ready to put some sort of "work routine" into your life; perhaps beginning with some kind of part time position. You may have to try some different things to figure out what will be meaningful for you; you have so many gifts and talents that I know you will have many choices. As you search for your new direction, I send you the energy of my practice to help you find your way. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I just checked out Emily's photos and loved the clip with MMCF beads. What a great idea! Everything that your group is coming out with is terrific and shows their commitment to Mattie, Peter, and you. Your Foundation is a blessing and a gift to all the families that struggle with this disease now or who will be affected by it in the future. I'm glad that you rested after your emotional morning. Even the beans were a gift for and from Mattie. You have taught so many how to be in the moment. I know that you don't always feel like you are doing this,yet, your blog is very focused and current. The pictures illicit the emotion and help to tell your story. I am glad that Karen and your folks were with you and it was great to see new pictures of them. I have enjoyed your Mom's writings too. They did a wonderful job raising you and you have taken their lessons to a new height. Today will be a hot one in NY as I suspect it will be in DC so please remember to drink plenty of water and pace yourself."

The third message is from one of Mattie's favorite HEM/ONC nurses. Kathleen wrote, "I am so glad that the walk was so successful!! I just watched the news clip about it, it was great and so inspirational. I am glad that you were able to raise awareness and inspire others. You two are remarkable people!! I wanted to share a quick little story with you. I waited until we moved out here to Kansas City to plant my Mattie forget-me-nots. Unfortunately we lost track of time and had our seeds soaking in water longer than the desired amount of time. So for weeks and weeks I kept waiting for the flowers to sprout, and Tony would kindly remind me that they might not grown because of soaking them too long. He's kindly say we could pick out other flowers to plant in memory of Mattie, but I kept on saying we just had to wait a little longer. On Sunday we were sitting out on our patio and were talking about your walk. I was saying I hope you had better weather than us (it was dark and dreary out) and that I hoped you had a great turn out. After talking I decided to water our plants and sure enough, Mattie's flowers had sprouted! I just knew it was a sign! I wish I could have been there on Sunday, but please know that I was thinking of you both and was there in spirit. As was your beautiful son, Mattie!! Take care Vicki and Peter. And please stay in touch!!"

May 25, 2010

Tuesday, May 25, 2010

Tuesday, May 25, 2010 -- Mattie died 36 weeks ago today.

Tonight's picture was taken in November of 2008, after Mattie's second major limb salvaging surgery. During that surgery, Mattie had part of his left humerus removed, part of his right femur (leg) removed, and a portion of his left wrist. It was a huge surgery and Mattie was in the operating room for about 10 hours. About a day or so after surgery, I snapped this picture of Mattie. Despite his other three limbs hurting, you couldn't keep a good boy down. "George," which was the name of Mattie's left leg, was always curious, and compensated for what the other parts couldn't do. Mattie's left leg and particularly his toes worked as well as fingers. Mattie gave us all a good laugh that day, because in between managing the pain, we all needed this comic relief.

 Poem of the day: Lost by Brenda Penepent

Am I lost, God?
How sad for me if it is true.
I feel so empty at times.
The pain of separation is too much.
My heart aches for the sight of [his] face,
just once more.
I wonder if I have become
Too much a part of that other time
And less a part of this world.
I know You are watching me struggle
Reaching out to send messengers of comfort
When my strength fails and I cry.
Yet, there is something
intangibly familiar about this feeling
I can’t quiet describe.
Perhaps of some half-forgotten times
When angels held me softly
Stroking my hair.
Then for a just a moment,
the pain and empty ache
Have fallen away from my heart.
So, Father, even in my grief, I’ve known
That You are walking with me
And I am never lost for long.

Today marks the 36th week that Mattie has been gone from our lives. My mood seems to reflect how I typically feel on Tuesdays, however, somehow today I feel it in a more pronounced way. Maybe because my parents went home today and Karen left yesterday. I am not sure, or the simple fact that I have been working non-stop for the last three weeks toward the Walk, and now that it is over, I feel a bit lost again.

I drove my parents to the airport this morning, and after a long flight, I am happy to report that they are safely home. I had several chores to run in the morning, and then met up with Ann for lunch. We have been receiving a lot of positive feedback about the Walk. In fact, a good portion of the feedback we are getting is that the walk raised attendees' awareness of pediatric cancer, and that people found the posters very informative. Wonderful to hear! I am also thrilled that attendees enjoyed the actual Walk, and were inspired to earn a bead per track lap completed. The beads were strung on backpack clips to spell out....MMCF (Mattie Miracle Cancer Foundation).

I spent a good portion of the rest of the day in bed. I was just too exhausted to function, and I realized how tired I was when I was having a hard time driving. Before Peter got home, I did get myself up and decided to weed and water my own garden, which is doing beautifully! Peter planted green beans from seed, in honor of Mattie this year. This was a Mattie/Peter tradition to plant beans. In any case, tonight I picked two large hand fulls of beans and cooked them for dinner. We thought of Mattie tonight while eating, and I know he would have enjoyed seeing these beans. Mattie actually loved vegetables and was a very healthy eater. This was not something I enforced, it just came naturally to him.

I would like to share some more pictures of the Mattie Miracle Cancer Foundation Walk with you tonight. Hope you enjoy them!

Left: Sean Swarner is pictured with my nephews and niece. From left to right are Nat, the Manogue boys (friends of my sister-in-law's), Sean, Will, and Sydney.

Right: Vicki and the Magic Man (Bob Weiman).




Left: Peter, Mary (Lead Social Worker at the Georgetown University Hospital Pediatric Lombardi Cancer Center), Dr. Shad (the director of the Pediatric Lombardi Cancer Center), and Vicki


Left: The first lap was led by family and special guests. Our special guests were Sean Swarner, Maya (she is wearing a pink visor and is holding the banner), Jocelyn (who is next to Maya), and Brandon (who is also holding the banner and is next to Peter). These were three of Mattie's closest friends in the Hospital. In addition, the HEM/ONC nurses of Georgetown University Hospital were also walking the first lap with us!

Center: Dr. Bob captured a great picture of the crowd as the Walk began!

Peter and I were fortunate to receive a link to more pictures of the Walk that were taken by Mattie's very first babysitter, Emily Goodstein. Emily and Alyx were in attendance at the Walk. Alyx was also one of Mattie's babysitters, and none of us would have thought that the cute toddler they worked with would now be taken from us due to cancer. Emily is a very creative photographer, and I truly enjoyed receiving her pictures. I hope you enjoy seeing them too!


I continue to be very moved by the support that others are so generously offering to us. Wasfi and Peter worked together at Arthur Andersen, and is a friend of ours. Wasfi sent us a message today, which I posted below. I welcome you all to attend Twisted Vines on Wednesday in support of the Mattie Miracle Cancer Foundation. Thank you Wasfi for this creative fundraising idea! 

==========================================================
 A MATTIE MIRACLE FUNDRAISER

This Wednesday May 26, 2010, Wasfi will be guest bartending at Twisted Vines, which (if you don't already know) is a great wine bar in Arlington recently opened by our friends Josh and Sybil Robinson. Wasfi will be donating all of his tips to the Mattie Miracle Cancer Foundation…So tip away! Wasfi will start bartending right around happy hour time (5:30PM - they run out of wine).

Info on Twisted Vines can be found on their website (and their food is SO GOOD):
2803 Columbia Pike
Arlington, VA 22204-4411
(571) 482-8581
==========================================================

I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist, our friend, and NEW MOM. Kristen wrote, "I hope you are well. I'm excited to read the blog (perhaps tomorrow) to hear about the walk. After just 6 days of parenthood, I admire your strength, courage, and advocacy for Mattie even more. You are amazing parents. Thinking of you on this very busy and tiring Tuesday and every day."

The second message is from my friend, Charlie. Charlie wrote, "Thank you for sharing the wonderful and inspiring words you spoke at the walk with the rest of us. It is clear that the walk and the entire day was a huge success and how wonderful that you were able to follow that up with a visit to Georgetown with Sean Swarner yesterday to connect with and give all those children battling cancer an injection of hope. Of all the medications we have that fight disease, hope is by far one of the strongest we have and Sean of all people knows this very well. I am so glad you were able to visit with so many of the professionals who helped Mattie in his fight including Dr Shad, Denise and the nursing staff. I am sure that your visit made a very difficult day seem like Christmas for many of the young patients in the hospital; giving and caring are clearly two of your greatest strengths. I do realize that today is Tuesday and that on top of the usual angst of the day, your parents are headed back to California, many of the out of town guests are headed home and you are exhausted from all the planning and preparation. Therefore, when I practice today, I will send my energy to you to help you find a new balance moving forward. Please give yourself some of the love and care you gave so freely to others over the past few days. I hold you gently in my thoughts."

The third message is from my friend and colleague, Nancy. Nancy wrote, "As I just returned from a morning walk, I wanted to check in on the blog from the last two days. Kudos to everyone on Team Mattie and the great success of the 1st Annual Walk. Charlie's poem was beautiful and captured the feeling eloquently. You continue to reach out of yourself even when you don't feel like it. Your greeting was passionate and resonates on paper as it did when you gave it. It is what made Mattie able to endure his treatment and show everyone how to fight, even when the results aren't as one would have hoped. Peter and you will do much with this Foundation and I'm sure that many more vendors and supporters will become aware of this dreaded disease and its effect on families. I plan to watch the video clips later today! I am glad that the sun came out for the walk. Although, I'm not surprised as your Mr. Sun was watching everything that was happening. Enjoy your success and care for yourself over the next few days. It is good that Karen and your parents are still here to balance this after time. Be well and know that you are in my heart and mind today."

May 24, 2010

Monday, May 24, 2010

Monday, May 24, 2010

Tonight's picture was taken at Butler's Orchard in Germantown, MD. Mattie and I loved this farm during the fall season, because you can take a hayride out to a pumpkin patch and pick a pumpkin right off the vine. This picture was taken when Mattie was 5 years old. It happens to be one of my favorite pictures. I love it because it captures Mattie's excitement over picking out just the right pumpkin. Mattie and I could spend 15 or 20 minutes easily on such a pumpkin quest! When I look at this photo, and particularly look at Mattie's hands and arms, it is hard to believe this was the same child after being transformed by chemotherapy and surgery. After his cancer treatment he was a shell of his former self, he was fragile, extremely thin, and the color of his skin looked sallow and pale.


Poem of the day: Mattie's Walk by Charlie Brown


Were you with us?
Are you proud?
Your friends were here
We had quite a crowd.
Your artwork
It was on display
With your photos
It was quite a day!
I heard laughter
And there was magic
We shared your story
And the end, so tragic.
Sean Swarner came
And he shared
About his battle
And those who cared
And then before the day
Was done
We all joined in
To have some fun
We raised money
And awarness too
Of childhood cancer
And the loss of you
We made the news
So more people know
And the foundation
Continues to grow
You would have loved it
Your friends had fun
The only thing missing
Was you, my son.

Over the course of this week, I will be posting links and photos to the blog, so that you can see some memorable moments captured at this year's Walk. The picture below was taken about 30 minutes prior to the Walk beginning. Ann, our Walk Chair, convened the Team Lead volunteers together for last minute instructions and directions. Our Team photographer, Jeff Gehrs, captured the group and the excitement present before the activities began.

Front row: Ann, Vicki, Larry, Mary, Peter, Dave, and Marisa
Second row: Debbie, Sue, Ellen, and Christine, Leslie, and Leslie's husband
Third row: Katherine, Bernie, Patty, Carolyn, Peter, Bob, Junko, Tad, Mary, and Tamra


Today was another big day for the Foundation. The Mattie Miracle Cancer Foundation brought Sean Swarner to the Lombardi Pediatric Cancer Center at Georgetown University Hospital. Two TV networks were present, Fox 5 and WUSA 9. Fox 5 covered yesterday's Walk as well as today's event at the hospital. Fox 5 has been absolutely wonderful to work with, and I feel they truly value the work we are trying to accomplish, and this came across in their actions to be present for interviews both yesterday and today. Peter and I are very thankful to Marianne Worley, the director of public relations at Georgetown University Hospital for contacting these stations on our behalf. We feel quite lucky to have this connection with Marianne.

When we arrived at the Hospital, we set up our banner, photos of Mattie, and posters about pediatric cancer facts. Soon there after, our friend Alison arrived. Alison is well versed in the area of media communications and I felt very happy and less stressed out that she was there. Alison is calming and unassuming, however, I have no doubt if things weren't moving in the right direction for us or the Foundation, she most definitely would have stepped in. It is wonderful to have a friend like this behind us!

At the Lombardi Pediatric Cancer Center, Dr. Shad (the director of the Center) welcomed all attendees, and then Peter and I gave a greeting. Sean Swarner spoke to the children and their families for about 15 minutes. Little ones were sitting in tiny chairs right at Sean's feet, and they were glued to his stories and his messages of hope. One little boy later stated that if Sean could survive cancer twice, so could he! This little boy's name was Ryan and he is only 6 years old! Ryan is a RED SOX fan, and immediately identified with Peter. Ironically I have come in contact with the organization that Ryan's mom and her friends started called, "Just Tryan it." I was introduced to it by the "Magic Man," (Bob Weiman). If you want to learn more about Ryan, and this non-profit Foundation's upcoming triathlon, please visit http://www.justtryanit.com/.

Peter and I felt very supported today by all the Hospital staff and nurses. Denise, Mattie's social worker, was dressed in a beautiful red dress to capture Mattie's spirit today. She knew red was Mattie's favorite color. After Sean's talk, I had the pleasure of interacting with many of the children and their parents. I spoke to many moms, and many of them were in shock over the fact that Peter and I lost Mattie around 8 months ago, and here we were in clinic trying to help others. I appreciated their acknowledgement, and one mom was so overwhelmed by our story, that she hugged me for minutes. It is hugs like that, when I usually land up crying. I cry because I can feel that the person holding onto me gets my pain. I connected with that mom today, and so many others.

As Denise accurately observed, I couldn't help but take my camera out at the Hospital. It is almost by instinct. So I snapped a few pictures.



Left: My mom, Karen, Toni (Brandon's mom), and Brandon. Brandon and Toni came purposefully to the Hospital today to support us! We so appreciate their support, and Mattie would be so happy his "best" buddy was there. Toni also brought me a flower pot with forget me not seeds that were blooming. Toni planted Mattie's butterflies from his celebration of life ceremony, and wanted me to have them, since none of mine were sprouting out!




Left: You can see the little cutie in this picture is holding a Foundation gift bag. Her name is Fatou. Fatou and Mattie were in the PICU for treatment during the same time. Some of my readers may recall me mentioning Fatou's mom, and her struggles in the blog. Fatou and her mom were in the hospital for about five months straight and Fatou was on life support. It is miraculous that she is here today. However, Fatou's mom never forgot the help and friendship I offered her while we were both living in the PICU. So she purposefully came to the event today because she wanted to see me. There is something to be said about being bound together by cancer.

Right: After Sean's presentation some of the children went back to playing. Pictured here are Ryan (in red), his brother, Sean, and Tracy (the director of the art therapy program at the Hospital).



Dr. Shad graciously offered everyone a beautiful buffet lunch during the event. After which, we packed up and moved the event up to the fifth floor of the hospital, which is where the three pediatric wards are. We took Sean around to the transplant unit, the PICU, and the HEM/ONC unit. We were quite a troop. Since it was Peter, myself, my parents, Karen, Alison pulling the little red wagon filled with Foundation gifts, and Mary (the head HEM/ONC social worker). Peter and I had the opportunity to see many wonderful nurses and doctors we had come to love over our 15 months at the hospital. I can't quite explain it, but going to Georgetown is like going home. One particular story I wanted to share is we learned about a boy in the HEM/ONC unit today who was having a rough day. It was his 17th birthday, and he did not want to celebrate it, nor did he want to talk to anyone. However, after some coaxing by Mary (the social worker) and Dr. Gonzales, he allowed Sean in. Sean spent about 20 minutes with him. When the door opened back up, I could see this teenager smiling! Because I believe it is important to respect a patient's privacy, I did not take a picture, but imagine the feeling of seeing this beautiful smile! A smile on a face that was so upset only 20 minutes ago. Peter and I felt like we accomplished a lot today by bringing Sean to the hospital and delivering 35 gift bags to children!

Below you will find some links to Fox 5's interviews. I appreciate one of my former students, Marie, e-mailing me to let me know she saw us and the Foundation on TV! It is such a nice way to document the beginning of Mattie's Foundation!

 
Cancer Survivor Sean Swarner Climbs Highest Mountains
http://www.myfoxdc.com/dpp/health/cancer-survivor-sean-swarner-climbs-highest-mountains-052410

Mattie Miracle Cancer Foundation
http://www.myfoxdc.com/dpp/news/web_links/mattie-miracle-cancer-foundation-mmcf


For those of you who were unable to attend the walk, and would like to know what I said in my greeting to the attendees, I copied it below. I hope you find it as moving as it was intended to be.
___________________________________________________

Vicki's Greeting at the Mattie Miracle Cancer Foundation 2010 Walk

I am Mattie's mom. A title and role I loved and never took lightly. Mattie was my seven year old son who fought a courageous battle with multifocal Osteosarcoma. It is ironic that last May, I was standing almost in the same spot on this beautiful campus, delivering a message to our loving community. Last year, sitting to my left, while I was giving my greeting I could see Mattie out of the corner of my eye. He was watching the crowd and soaked in all the attention, support, and love you all bestowed on him. Naturally standing in front of you this year is a bit harder and much more bittersweet. It is sweet because Peter and I are charged with the calling to help other children and their families battling cancer. However, it is also very bitter because, in our own battle with cancer we lost our precious and only child.

Before I continue, I want to acknowledge our special guests today. Seated in the reserved section with our families are Brandon Johnson, Jocelyn Sweet, and Maya Goldberg. These were three very close buddies of Mattie's from the Georgetown Pediatric Lombardi Cancer center. In addition, several of Mattie's outstanding nurses are also there, along with Dr. Shad, the director of the Lombardi Cancer center, and Dr. Bob Henshaw, Mattie's incredible surgeon. We are honored to have these individuals with us because through Mattie's cancer, they became and will always be a part of our family.

As Mattie's mom, I know there must be a reason for Mattie developing cancer and dying. It is a pain that I hope none of you will ever experience. But when I look around today, I am reminded what Mattie was able to create in seven short years............ Mattie lived to create just this! A community who can come together and rally around pediatric cancer. Mattie made pediatric cancer real for so many of us. It is no longer an issue we only see covered on television. Through this amazing unity you helped our family in extraordinary ways, and your support and strength is now being channeled through the Foundation to potentially help countless children and families with cancer.

As many of you know, Peter created Mattie's blog in July of 2008. For almost two years now, I have posted a blog entry each and every night. I have never missed a posting regardless of my circumstances. The blog evolved over time, from a mass communication platform to convey Mattie's diagnosis and treatment, to an emotional account of our family's internal struggles with cancer and the death of our child. On any given day, 300 people read the blog. You may read it because you have an emotional connection with us or because you have or know someone else who has a child with cancer. I imagine what keeps people coming back to our story is the sheer need to understand the unthinkable..... which is how do you survive and cope with cancer and the death of a child? Our children are supposed to outlive us, to be happy, and healthy. But what happens if one day a doctor sits you down and tells you your child has cancer? Better yet take it one step further and imagine hearing that there is nothing else left to do, there are no more treatment options available for your child because the cancer has spread everywhere? How do you take in this kind of news?

As human beings we have a very strong desire to understand what makes us resilient, and I know many of you ask yourselves daily, what would I do if I were in Vicki and Peter's shoes?! I do believe that Mattie touched the lives of all of you and by sharing his story, I think it has had a profound impact on others. It has caused you to grapple with life's fragility and uncertainty, it causes you to re-evaluate your priorities, to hug your children more, and to simply spend more time truly being engaged with your children. Cancer simply stated, is a wakeup call!

Mattie and our community have been our greatest teachers. Through Mattie's cancer journey, we learned what types of support families need in order to cope and survive the endless treatment process. Peter and I were fortunate to have you to turn to. I have quite a good memory for emotional content, and I assure you, I will never forgot each of the hand written letters, e-mails, meals, or toys you gave to us. Some days these tokens of kindness were the only things that sustained our hope. However, I observed in the hospital that not all families are as fortunate as us to be the recipients of such love and community support. Through the Mattie Miracle Cancer Foundation, we are committed to providing other children and their families with the opportunity to experience this type of support and assistance.

Your presence today makes a difference. As a community we were not able to save my Mattie, but with your continued support, I have no doubt we will be able to make a difference in the lives of other children touched by cancer. I have learned the hard way that fighting cancer is not only about the outcome or the end result. It must be about the humane and compassionate treatment and support that is received from the time of diagnosis, through treatment, and beyond. Thank you for having the faith and the confidence in the Mattie Miracle Cancer Foundation to follow our passion and vision to help children with cancer and by doing so ultimately keeping Mattie's memory alive.
____________________________________________________
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for the wonderful pictures and for sharing with those of us who could not be there yesterday. I know I was praying for the sun to show up yesterday afternoon and I was so happy and relieved when I saw an end to the rain. I am sure that along with the hopes of all who made the event happen, Mattie was there making sure the sun shone down on you all. So many thanks to all who put in the countless hours to make this event such a success, from all the walk volunteers to the Georgetown staff who were able to come and be a part of things. And special thanks to Sean whose inspiring words reached children and adults alike. Hopefully, this will be a touchstone on the road to solving the tragedy of osteosarcoma. I am so glad the event was a wonderful success and that you can build on that for the future of the foundation's work. Remember, after something tremendous like this event, there is often a natural letdown. Give yourself time and space to recover your energy. I hold you gently in my thoughts."