A Remembrance Video of Mattie

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am 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 have stopped writing on September 9, 2010. However, like my journey with grief there is so much that 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 me, and most importantly thank you for keeping Mattie's memory alive.


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



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."

May 23, 2010

Mattie Miracle Cancer Foundation's 1st Annual Walk

Sunday, May 23, 2010

Tonight's picture was taken in the summer of 2009. Mattie was reaching the end of his cancer journey, and our friends gave us a bunch of beautiful flowers. I believe the flowers were meant for my mom, but Mattie claimed them instead. Peter snapped this picture of Mattie, and we use this picture quite often in our Foundation materials. If you look closely, you will see Mattie is surrounded by Legos! Since today represented our first public event to raise awareness for pediatric cancer, I thought this would be a very appropriate picture to post.

Poem of the day: Along Grief’s Journey by Ferna Lary

I hear little children laughing
and the sound brings my soul such pain.
Yet I know in my heart that life goes on
and I must learn to live again.
Some days I stay so busy
I don’t even realize you’re gone.
Then there are all of those other days when
I feel like I can’t go on.
Sometimes I think I dreamed you…
that you never existed for real.
You’ve been gone so long and I’m just not strong
for my life has become surreal.
They tell me it’s time to let go
and build a new life without you.
But the builder is weak and I can’t even speak
and I don’t know what else to do.
How long will this pain last, Lord?
How many tears have I already cried?
It seems like forever since my world fell apart
when my loved one died.

The Mattie Miracle Cancer Foundation's first annual pediatric cancer walk was a GREAT success! In all estimation we had close to 400 people in attendance. The amazing part was the weather. It was raining all morning, and then just in time for the event set up, things began to clear. Ann and I discussed where the Walk should be held, inside or outside, and I very much wanted it outside. Within minutes, teams of volunteers mobilized into action and the baseball field at the St. Stephen's and St. Agnes School was transformed. What can I say about our volunteers? Other than we would be lost without them, and that you make our lives far better and richer. We want to especially thank the following people:

Tamra Bensten, Liza May, Dave Holm, Johnny Rivera, and Mary Rivera for their incredible logistic support! What an amazing team, and I couldn't have asked for better coordination. Mary, Mattie's video was SO touching and I am happy we had this special memorial present at the Walk.

Christine Cooper for her outstanding level of organization at registration. She made the process run very smoothly and effectively for all attendees!

Debbie Keefe and Sue Whitney for their outstanding efforts and creativity with children's crafts and games! I know they made many children happy today! A special thank you to Debbie for helping to transport tables!

Caroline Coker and Mary Doane for their amazing work on the raffle. The raffle was a VERY popular stop at today's event, and it is due greatly to this team's incredible organization and dedication.

Ellen Gehrs for lining up and coordinating over 80 volunteers today at the event. We needed all this support to run every activity smoothly!

Margaret Sharkey and Susan Scharf for their creativity, passion, and enthusiasm as they represented us at the Foundation Table!

Danelle Fortune for reaching out to the community and securing 10 local vendors at the event. The vendors donated at least 25% of their proceeds to the Foundation.

Patty Tilch and Junko Funahashi for their amazing food displays and service. Servicing a large crowd is no easy task, and this team out did themselves this year. Also MANY, MANY thanks to everyone in the community who donated food items to today's walk!

Marisa Tordella for her  beautiful bake sale display, and for treating me with lots of goodies during the walk!

Larry Jenney for his outstanding ability to effectively manage and coordinate the rock climbing wall at the Walk.

Tanja Mayer Harding for helping the Foundation from 8am until we were all done with clean up! Her efforts were greatly appreciated!

A special thank you to all the GW, SSSAS, and TC Williams students who volunteered today! Your presence was greatly appreciated.


Last but certainly not least, Peter and I want to thank Ann Henshaw, our Walk Chair for her tireless efforts. For listening to all our goals and desires for this event, and making them a reality!


It was a very busy day for us. Peter and I arrived at the walk location at 7:50am. Peter was interviewed by Fox 5 TV, and the interview was LIVE. Many of our attendees had the opportunity to see this telecast, and I was VERY proud of Peter for what he was able to accomplish on the air in a short period of time. He represented the Foundation in a very professional, eloquent, and passionate way. Mattie would have been proud of him! Later on in the day, Fox 5 came back, and interviewed me. We can't thank this network enough for their interest in our story, and their support for pediatric cancer awareness.

There were SO many special highlights of the event. Which I hope to share with you over the course of the next couple of days. The first was Sean Swarner, our featured speaker. Sean did a wonderful job sharing his life stories with us, and I particularly loved his analogy between battling cancer and mountain climbing. I had never thought about that before, but it made sense. You can't climb further up a mountain until your body is physically ready. Similarly you can't continue the cancer battle and receive more treatment until your body is ready with the appropriate white blood cell counts. Sean captured the attention of both young and old, and I had many parents come up to me and tell me how Sean's story caught the attention of their children! Excellent, and music to my ears, because pediatric cancer awareness doesn't only pertain to adults.

The Georgetown University Hospital nurses, doctors, and staff attendance was impressive. I am so happy the nurses had a table at the event, and the childlife model magic table was an immense success! Having these wonderful individuals with us today, made the event very special for me. Since many of these women became like family to me!

The spirit and energy of today were contagious. You have to stop and be in awe of the people we are surrounded by. In many respects I feel as if many people would move mountains for us if that were possible, and their commitment to us is humbling. Mattie's story has affected not just us, but our community, and when I am in doubt of that, I must reflect on today's event. I appreciated every conversation I had today, every hug, every story, and the chance to hear that you feel we are making a difference. I particularly loved hearing that you learned something from the Walk!

As we were talking today, I noticed out of the corner of my eye a familiar face. Who was it? But our graphic artist, Kristen Johnson. Kristen did all her work for us pro bono, and seeing her at the walk today was very powerful to me. It further confirmed that we selected the RIGHT person to work with us. This was NOT just another project to Kristen, this was personal. I shared in Kristen's excitement to see the beautiful LOGO everywhere. I am so happy she could see it displayed so well, since this really was the logo's official debut.

I loved seeing Peter's Arthur Andersen and Voxiva colleagues and so appreciate their steadfast support! I also enjoyed seeing all the children! Mattie would have loved this event, and I know he was looking down smiling today, because once the event started we DID NOT receive ONE drop of rain. In fact, the sun came out! My Mr. Sun came out to say, "hi mom, thank you for keeping my spirit alive!"

Below is the first set of photos I will be posting! Enjoy them, and THANK YOU all for your incredible support!

Left: The arrival of the 26 foot rock climbing wall.

Right: Inside the Foundation Tent, where many of Mattie's items were on display! Including a small framed print of Mattie's Mr. Sun painting.


Left: Margaret and Susan working at the Foundation Table. For today's event only, with a donation, free gifts were available!  


Left: Peter (our Foundation Treasurer), Sean Swarner, and my Dad.
Right: Karen, my lifetime friend, taping posters down, so they wouldn't fly away with the wind and rain.


Left: Annie came up to me today and showed me her face painting. One cheek said Mattie and the other was painted with the word miracle.

Right: Debbie, Mattie's art teacher, designed very special cookies for the walk's bake sale. Praying cranes! Mattie would have been the first one to eat this cookie. He would have loved the shape and the fact that it wasn't chocolate!




Left: Pictured from left to right is CR (one of Mattie's wonderful HEM/ONC nurses), Jim (Brandon's dad), Toni (Brandon's mom) and Jenny (one of Mattie's wonderful HEM/ONC nurses).

Left: Pictured from left to right is Hannah (Jocelyn's sister), Jocelyn (Mattie's very good buddy from the Lombardi Clinic), and her fiance, Brian.




 
 
 
 
 
 
 
 
 
Left: SSSAS fifth graders performing during the magic show. I had to take a picture of the famous Mattie Brown Peanut Butter Booger Trick! Mattie no doubt was smiling over this.



Left: Lesley (one of Mattie's favorite Childlife Interns), Brandon (Mattie's great buddy), and Whitney (one of Mattie's favorite Childlife Interns).
















Left: Pictured from left to right is my mom, Kelly (Tricia's daughter), Nicole (Tricia's daughter), Tricia (a HEM/ONC nurse that Mattie loved), Vicki, Kyle (Tricia's son), and Katherine (Georgetown University Hospital's HEM/ONC nurse educator)

Right: Pictured from left to right is Karen, Amany (Vicki's good friend from the George Washington University), Maya (Amany's daughter), and Tarek (Amany's son).

















Left: Maya (Mattie's good friend from the Lombardi Cancer Clinic) and Ann! Ann just announced that Maya won a raffle item. A sailing excursion, Maya was thrilled!

Right: Ann giving Susan Sestak (the wife of Rep. Joe Sestak, D-PA) the raffle item she won! We deeply appreciate Susan's support!



Left: Vicki with several of the George Washington University Volunteers!
Right: Pictured from left to right is CR (short for Cecelia Rose), Vicki, Tricia, Katherine, Peter, and Jenny.



I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was so disappointed to see that it is still raining this morning. Although the forecast is for rain for the next few days I hope it takes a break this afternoon in time for all the Mattie Walk events. You and all the Mattie supporters have dedicated so many hours to making this event happen; I pray it goes even better than you hope it will. In any case, I hope it gets lots of positive media attention, and raises both funds and awareness of pediatric cancer and particularly osteosarcoma. As I practice today and go through the necessary meetings I will be thinking of you and sending you my energy to help you and all who are there supporting you, to have a day in which you accomplish all you set out to do. I hold you gently in my thoughts and pray for your success."