Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 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

Random Shots of Mattie, Family and Friends

September 27, 2014

Saturday, September 27, 2014

Saturday, September 27, 2014

Tonight's picture was taken in November of 2005. We brought Mattie to one of his favorite restaurants and dressed him in red with the hopes of posing him for our cover photo for our Christmas card that year! This was the actual photo that went to all our friends and family in 2005. The reason why Mattie loved this restaurant so much was the man made pond right behind him. In the pond are fish and turtles. When Mattie would get bored eating or when he had enough of sitting still inside the restaurant, he would ask to come outside to look at the fish and turtles. These outside diversion were a saving grace for all of us!


Quote of the day: The greatest degree of inner tranquility comes from the development of love and compassion. The more we care for the happiness of others, the greater is our own sense of well-bring. ~ Tenzin Gyatso


Yesterday I found out I have two more small kidney stones and that did not put me in the best of moods. I am not sure what bothers me more, the actual stones or the total insensitivity of the medical system in which I have to deal with! Frankly just migrating through the system could make you ill. It is one gatekeeper after the other. Forget about talking to a doctor, and I am quite sure that many doctors have to go right back to medical school, because so many of them do not know anything beyond their own specialty area. Simple questions about the kidney send them right out of their comfort zone. So naturally my basic questions need to be referred to a nephrologist! Seems to me since Mattie's death, I have developed a rapport with more specialists than I care to list here! I would say this is truly the aftermath of having a child die traumatically. While Mattie was battling cancer, I was in overdrive and pushed through things without sleep, with a total disregard to my health. Now, I am paying the price for that and also grief has a way of eating one from the inside out. 

In any case, last night I posted a list of 20 things about grief. For the most part the list resonated with me but there are bits and pieces of this list that UPSET me greatly. I was too tired to get into it last night. Of course as Peter read my blog from last night, he started to talk to me about it and I guess he was perplexed by the list and my lack of commentary on it! Since I did not comment on some of the items, I think he thought I agreed with all of them, which worried him! However, he knows me better than that, which is why he verbalized his concerns! I have more energy tonight, so here are my reflections on the list with regards to numbers 1, 9, and 20 (from last night's list). These items need an absolute overhaul! Not only an overhaul, they need to be tossed right off the list to be specific. 

Here are the items:
1. We don't actually get over losses. We absorb them, and they redirect us into a more grounded way of living.
9. Losing a loved one might make you question your purpose and your own goals. That can be a beautiful thing.
20. What feels like the end is often a new beginning.

My commentary about the items:
With regard to number 1, Mattie's loss did not redirect us into a better or more grounded way of living! I can assure you! It instead caused havoc on our lives and has torn us to pieces. We are left shattered and fragmented, and forced to invent ourselves and understand the world around us. So I am not quite sure I share this philosophy. Similarly, with item 9, I do think there are other things in life that we can go through that help us question our purpose and re-evaluate our goals in a less traumatic manner than grief. I agree that taking stock in one's self and purpose are beautiful things, but I greatly question the manner in which one has to experience this! The death of a child seems to be a harsh and extreme reality check, and to me there is no beauty that can come from this. Lastly (item 20), what feels like the end is the end! There is no beginning when your child dies. That is the end of my life as Mattie's parent. It is that plain and simple. We could sugar coat it, paint a pretty picture, but that doesn't help! There isn't a new beginning. I can assure you! I am reminded of this every Christmas, during every celebration, and so forth. Again, I am forced to create a new life for myself, one I did not ask for, but a "new beginning" are two words that don't sit well with me. I lump them in the same basket as "new normal." 

I think overall the list is very helpful, and when I read it most of it did resonate with me, but some words even five years later rub me the wrong way. They can upset me greatly. They can make me feel misunderstood, and worse they can make grief seem simple or make grief seem like a great part of life in which we need it in order to grow, develop, and become better people. Grief happens and we have to deal and cope with it, but I wouldn't wish any one reading this to lose their child. I think you can grow and become beautiful in other ways. 


My friend Ann sent me this photo today of her daughter Abbie and her friends taking part in the Whipping Cream Challenge for childhood cancer. 

There is a new challenge (different from the ALS Ice Bucket Challenge) that is circulating around Facebook. It is the Childhood Cancer Challenge, in recognition of September being Childhood Cancer Awareness month. The challenge is asking friends and family to take the "Whipping Childhood Cancer Challenge." 

Basically the challenge asks you to have someone throw a whipped cream pie in your face and make a video of it and post it on Facebook!!! Then challenge 7 people to do the Challenge and consider donating $7 to the childhood cancer charity of your choice. Your friends and family have 46 hours to complete the Challenge or they can donate $46 instead. The reason for the numbers 46 and 7 is because 46 children are diagnosed with cancer every day and 7 children lose their battle to cancer every single day. 

The Challenge was actually started by a mom whose child survived cancer and she wanted to raise awareness for the disease:

http://www.myfoxorlando.com/story/26454029/whipping-childhood-cancer-challenge-taking-social-media-by-storm

http://www.whippingchildhoodcancer.com/

I was very touched to see this photo today! Though as Mattie Miracle's president, I shy away from promotional and viral events on Facebook such as this that promote childhood cancer in this light. Nonetheless, I do support the fundraising efforts and thoughtfulness of Mattie's friends.

This afternoon, Peter and I went to the fourth annual EVANfest sponsored by the EVAN Foundation. Evan lost his battle to Neuroblastoma in 2010, at the age of 7. His parents, Gavin and Wendy created their Foundation in Evan's memory. The Foundation is dedicated to supporting research that will foster new therapeutic options for kids currently in treatment. Thanks to their efforts they have supported several new clinical trials for Neuroblastoma, they have advocated for new drug development, and also volunteer at Children's Hospital in DC and supply a Treats and Treasures cart at the hospital. In fact this October, Mattie Miracle will be supplying some of our Post-Halloween candy to their Treats and Treasures cart at Children's Hospital. 
http://www.theevanfoundation.org/



After EVANfest, Peter and I visited one of Mattie's favorite restaurants. The one from the photo up above! As you can see I snapped a photo of one of the turtles out on the rocks. It was a glorious weather day!







Peter took this photo of me. This was the exact rock Mattie was sitting on above. I just took the photo of Mattie from a different angle, so you couldn't see the building! But in my mind this will always be "Mattie's rock!"

September 26, 2014

Friday, September 26, 2014

Friday, September 26, 2014

Tonight's picture was taken in September of 2007. Mattie had just come home that afternoon from kindergarten and his after school construction club. In this construction club, they would take everyday objects and build with them. As you can see Mattie's masterpiece used tape, paper towel tubes, boxes, plastic containers, and then he colored some of the items with markers. Literally each week Mattie would come home from school with different items from his club, and he did not like parting with any of them. Finally as things would begin to accumulate, we had an agreement with each that I would photograph his art before saying good-bye to any of the pieces. Mattie's time in construction club was actually crucial because when Mattie developed cancer, he took the skills he learned in construction club and transferred them into his hospital life. In the hospital he collected boxes and other found materials and literally built with all these great things! The possibilities were endless and in a confined space this was ideal.

Quote of the day: Ring the bells that still can ring. Forget your perfect offering. There is a crack. A crack in everything. That's how the light gets in. ~ Leonard Cohen


My friend Charlie sent me this list of "20 things I wish someone told me about grief." This is a list which I find quite meaningful and now that Mattie has been gone five years, I feel that this list makes a great deal of sense to me on an emotional level. Losing Mattie to cancer has been beyond tragic and has altered our lives forever. Feeling so absolutely lost, our compass has been the Foundation for the past five years. Instead of nurturing Mattie, we are nurturing his proxy. Something that embodies his name, his spirit, and his memory. But this investment is just that, it is grounded by love and it requires time and a great deal of energy. So in death, you land up seeing the profound role that someone played or could have played in your life. When that person is no longer there, it leaves an incredible void, and sometimes that void can never be filled. Such as in the loss of a child. 

When Mattie died, I learned a lot about my support networks, and those I could and couldn't count on. People I thought would always be there for me, surprisingly weren't! Even people I knew for decades. I can't quite explain how this happens, but it does. Such losses of social connections and friendships are quite painful to face, and frankly I would say that is one of the biggest eye openers about loss and grief. It is a continuous journey of multiple losses. The death of Mattie, produced a cascade of other losses in my life. Which when you sum them altogether, it becomes downright perplexing and overwhelming. 

Yet somehow even in the darkest moments of grief, there are those who give us strength. Those unexpected earthly angels who are there for us, give us a smile, an email, a text message, and let us know we are thought about, important, and not forgotten. To these angels...... they will never be forgotten. It is amazing how a kind word can transform even the darkest of days. 

------------------------------------------------------------------------------------------------
20 Things I Wish Someone Told Me About Grief by Shannon Kaiser 

1.          We don't actually get over losses. We absorb them, and they redirect us into a more grounded way of living.
2.          You'll discover depths of your love you never knew existed.
3.          Never regret loving the way you did. Love is always worth it.
4.          People may say hurtful, stupid things. Don’t take it personally. They are often just trying to help.
5.          There isn’t always a spiritual aha moment or a reason. Sometimes, it just is what it is.
6.          Know you did the best you could with the time you had. Forgive yourself. There is nothing more you could have done or said.
7.          Anger is normal. Feel it. Embrace it. Allow it to work through you.
8.          Death brings out the best in families. It will also bring out the worst. Be prepared.
9.          Losing a loved one might make you question your purpose and your own goals. That can be a beautiful thing.
10.       You will find comfort in the most unexpected places.
11.       Sudden bursts of emotion are part of the process. Allow yourself to be fully present in them.
12.       There is no such thing as normal when it comes to grieving. Be patient and kind to yourself.
13.       People will show you who they truly are. When times are tough you will see others true colors.
14.       You will never go back to being your “old” self.
15.       There is no timeline for grieving.
16.       Losing a loved one reminds us of what matters most in life. Don’t lose perspective.
17.       Experiencing great loss is an opportunity to drop the ego and live more from your heart.
18.       Numbing the pain will make it worse. Don't procrastinate the process. Feel your feelings.
19.       Your life was richer and more wonderful because of the love you had.
20.       What feels like the end is often a new beginning.

September 25, 2014

Thursday, September 25, 2014

Thursday, September 25, 2014

Tonight's picture was taken on December 22, 2008. Mattie was sitting on the floor of his PICU room playing with a tub of water and toys. Instead of getting up, his favorite nurse, Tricia got down on the floor to flush his central line. By that point, Tricia understood Mattie very well and had gone through a great deal with us. Tricia was one of the first nurses I met on the floor and I will never forget the time during his first week of chemotherapy when Mattie had an outburst. He literally threw me against the door and started hitting me. Then he told me he hated me. It was not a pretty scene in our room. I was stunned and so stressed out and exhausted. Tricia could have easily walked out of the room and left us to battle this one out alone. But she did not! Instead, she told Mattie that he did not mean what he was saying and said we both needed rest. She walked each of us to Mattie's bed and tucked us in together. I of course was in tears because I was hurt, I did not know how to help Mattie, and I was absolutely worn out from living in a hospital room. It was that special moment that Tricia spent with us, that enabled me to see the stuff she was made of, not only as a nurse but as a compassionate person. Tricia understood not only Mattie, but my whole family and advocated for all of us throughout our entire time at the Hospital. This is a person I will always be indebted to. 


Quote of the day: If you could only sense how important you are to the lives of those you meet; how important you can be to the people you may never ever dream of. There is something of yourself that you leave at every meeting with another person. ~ Fred Rogers 



Mattie Miracle went to the Georgetown University Hospital today to make its annual contribution to the Mattie Miracle Child Life Program Fund. The Foundation chooses the month of September to make this large donation for two reasons. The first is September is National Childhood Cancer Awareness Month and second and most important to us.... Mattie died in September. We honor Mattie's memory and his battle with this contribution. Though Mattie died at Georgetown, we are very aware of the fact that his team worked hard to try to give Mattie a chance at survival. In the process, so many of Mattie's health care team members became a very important part of our lives. In the photo with Peter and I are two of our board members: Dr. Aziza Shad, the Chief of the Pediatric Oncology Division at Georgetown and Ann Henshaw (our friend and Former Team Mattie Coordinator).

This Spring, Peter and I met with Dr. Richard Goldberg, the President of Georgetown Hospital in his office to discuss our Foundation. Dr. Goldberg was kind enough to join us today at our check signing party. Dr. Goldberg thanked us for our contribution and all that we have done for the Hospital in Mattie's memory. 

Pictured from left to right: Dr. Goldberg, Ann, Vicki, Linda Kim (Mattie's Child Life Specialist), and Peter


As Peter joked with me..... No, he is not singing here! Dr. Goldberg surprised us by entering the room while we were talking. So I started to smile and literally Peter was caught mid-sentence.

We had the opportunity to thank everyone for coming this morning. I explained what our $30,000 donation would be used for this year. A NEW initiative!!! Weekends are very isolating in the hospital for children and families in the in-patient units. In so many ways, the hospital is like a ghost town on Saturdays and Sundays, and the child life playroom is locked up, families do not have access to the toys and items inside the playroom, and there are no child life specialists on hand during the weekends to help break up the the long and tedious hours. Therefore, we are committed to hiring a child life professional who will cover weekends at the hospital and provide support to families who are in-patient. This is a much needed resource and thanks to our supporters this is all possible!!! 



I entitle this photo, "Our Georgetown Family." From left to right are: Katrina (a wonderful PICU nurse, who helped Mattie numerous times), Mary (HEM/ONC social worker), Denise (Mattie's social worker, and Mattie Miracle supporter), Vicki, Peter, Debbi (Mattie's sedation nurse angel and our friend), Linda Kim (Mattie's Child Life Specialist and the person we raise funds for!), Tricia (Mattie's favorite HEM/ONC nurse and Mattie Miracle supporter), Jess (Child Life Specialist), Ann (Mattie Miracle Board Member and our friend), and Katie (Child Life Specialist).

When I brought these cupcakes through the hospital hallway and up the elevator, I had several people stop me and ask me where I sell these cupcakes. I had to laugh! They thought these cupcakes came from a bakery! I then told them I baked them myself and a nurse on the elevator said they then were "baked with love." She got that right and she did not even know me! As I told the group today, I bake these cupcakes because they were Mattie's favorites. Cupcakes were used as incentives to get Mattie to do his physical therapy (which wasn't easy when you have three prosthetics and for the most part were confined to a wheelchair). These cupcakes remind me of Mattie and because he loved them so much, I bake them each September when we donate a check to the Hospital, a place he loved so much that he chose to die there. To me there could be no other treat we could possibly serve that would be more appropriate. In addition to the cupcakes, I brought two of Mattie's plastic bugs, a butterfly, and a photo of Mattie when he was healthy. 



After I spoke, Peter shared some highlights and updates about our Standard of Care project. Then Tricia said a few words. I would actually say these were tender moments
being shared, because Tricia wanted us to know that not a day goes by when she doesn't remember Mattie and she also acknowledged Mattie Miracle and all that we do for the Hospital. Tricia has and continues to be on this journey with us and her understanding of our family brought many of us to tears. 








As we left the hospital today, we took two photos! This is the sign that greets people to the fifth floor of the Hospital. The fifth floor is where all the pediatric units are located. You will notice that in the upper right hand corner there is a red footprint. That footprint belongs to Mattie! I remember one day in the clinic, Jenny and Jessie (Mattie's art therapists) were designing this sign. They asked Mattie if he wanted to help with it and he wasn't interested in it at all. The only thing that interested him was getting messy and painting "George" (his left foot). I am not sure Jenny and Jessie originally wanted hand and footprints on their sign, but they went with it! The footprint belongs to Mattie and the hand print belongs to Baby Morgan, who is no longer a baby, she has to be five years old now!



































This second photo was taken on the first floor of the hospital. I am thrilled that this poster is still in the Children's Art gallery. Now five years later! Mattie created this story, during a time period when children and parents were asked to design and create their ideal hospital room. We could write about it, draw it, create a model, or do with this project as we pleased. Mattie wrote a story and also created a Lego model of his ideal hospital! Mattie's ideal hospital had an outdoor component for kids to play in! Which is why one of my ideas for Georgetown has always been to create an outdoor play space. But I haven't gotten too far with selling this idea to the administration, but for Mattie and I escaping the inner confines of the Hospital and getting fresh air were vital for our physical and mental health and in a way this need for freedom was captured in his story and in his Lego model.

September 24, 2014

Wednesday, September 24, 2014

Wednesday, September 24, 2014

Tonight's picture was taken on September 3 of 2007. This was the first day of school for Mattie. Kindergarten to be exact. It was a big day for him and for me. It was all day school and the first day Mattie and I were going to be separated from each other for six hours. I wasn't sure how he was going to like school, his teachers, the other kids, and of course I wasn't sure if he was going to be able to advocate for himself. I was used to being Mattie's fieriest advocate, that in a way I was a bit lost when he went to kindergarten, and I was worried he wouldn't know how to stand up for himself without me. But we both managed in our own way. I remember an incident that occurred while Mattie was in kindergarten. It occurred in the middle of the school year. Mattie was pushed on the playground by one of his classmates and pinned down to the ground. Mattie in turn actually hit the boy with a shovel, right in the face, in order to break free. Mattie was a non-violent child by nature, but if provoked and cornered apparently he knew how to set things straight. Naturally I was upset to learn what had transpired, but the irony was Mattie's school seemed to know their players and they assessed Mattie as a non-trouble maker. Which was good because otherwise, I am sure we could have easily been sitting in the head of the school's office discussing the next steps on Mattie's behavior management. As I look at this photo, I always reflect on the fact that I never would have guessed at the time that this was going to be our first and last first day of school picture ever! 


Quote of the day: If you aren't willing to fight for what you believe, do not cry about what you will lose. ~ Unknown


Tomorrow Peter and I are going to Georgetown University Hospital to donate $30,000 to the Child Life Program. This year we are supporting a new position, the creation of a weekend specialist who will work with in-patient children and families. The weekends are very isolating times within the Hospital and having a child life specialist on hand will truly make the environment more tolerable for the pediatric units. When we present our check, we always bring with us Mattie's favorite cupcakes. It is our tradition, in honor of Mattie. Peter and I worked as a team today to make these tasty treats! I baked them and Peter frosted them!



When Mattie was battling cancer, I used cupcakes as incentives for him to comply and do his physical therapy. If he did what Anna asked him to do, he basically earned a cupcake. In many cases, we would give Mattie cupcakes for just about anything because we were desperate to get him to eat and to give him calories. Nutrition wasn't at the top of my list and if you saw Mattie, who was skin and bones, you would understand why a balanced diet wasn't the priority. Calories and anything he could tolerate were! Which is why the cupcake is a special symbol to me! 

On check presentation days, we could bring in a cake or have cupcakes from a bakery. But it wouldn't have the same meaning. When we present the check, we are in essence giving Georgetown a gift. A gift that ties to the incredible work they did trying to save Mattie's life, and we want to support their ability to meet the emotional needs of other children and families within their Hospital. But the cupcakes are my personal symbol of my love for Mattie. This is what I did in those last final months and weeks to try to give Mattie strength to help him along. 

I think about it this way..... 
we present the check in the Hospital Mattie was treated at, 
we present the check to Linda, his child life specialist, 
the check signing ceremony takes place in the child life playroom (a room Mattie played in often)..................................................................

therefore the sweetness of Mattie's cupcakes somehow completes this whole picture! These tasty treats keep us grounded and remind us of who brought us to Georgetown in the first place and what continues to keep us focused on our mission and the work we are doing.  

September 23, 2014

Tuesday, September 23, 2014

Tuesday, September 23, 2014 -- Mattie died 263 weeks ago today.

Tonight's picture was taken in September of 2007. That particular weekend, Peter took Mattie out in a row boat on the Potomac River to go fishing. They had many adventures like that together. As you can see Mattie caught a catfish. Well long enough to snap a photo of it before they threw it back in the water! Mattie always came back from one of these fishing trips with a full report for me. These times on the River were special moments he had with his dad, but on occasion I would be invited along, and I got to see exactly what Mattie was learning. The art of catching a fish, rowing a boat, learning to be comfortable on the water, and just appreciating time conversing and being together.  



Quote of the day: Character can't be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. ~ Helen Keller




I am happy to share this photo tonight of the teddy bears that were donated to Georgetown University Hospital on Monday. At Curefest on Sunday, I met the CEO and Founder of the non-profit, Along Comes Hope, based in California. Jenny was looking to donate her "Hope" teddy bears before heading back home. I suggested Georgetown Hospital and helped her make the connection to our friends in the Child Life department. The rest is history! These bears are unique because they have a device inside them that allows children to record audio messages inside the bears! 


This afternoon, I started to feel ill again and am running a fever. I have my CT scan scheduled for Thursday. I can't seem to stay away from scans and tests! Of course the last time I had a CT scan, the results revealed questionable masses that introduced me to my own set of oncologists, in which I had to be monitored monthly for over a year. Another experience I could have done without. Therefore more issues now only exhausts me further.

September 22, 2014

Monday, September 22, 2014

Monday, September 22, 2014


Tonight's picture was taken in September of 2007. This was one of my fun photos of Mattie that I took of him by the Potomac River. One weekend the Swedish Embassy had an open house and they featured all sorts of fun and creative things for kids. Right outside the Embassy was this giant chair. Of course that practically drew Mattie right into the space. Who wouldn't want to sit on this chair?!!! Mattie hopped right on up and of course I snapped a photo! I practically spent Mattie's childhood glued to the camera. I am not sure why I knew to do this, but I just had the instinct!  Thankfully I did!



Quote of the day: A pearl is a beautiful thing that is produced by an injured life. It is the tear (that results) from the injury of the oyster. The treasure of our being in this world is also produced by an injured life. If we had not been wounded, if we had not been injured, then we will not produce the pearl. ~ Stephan Hoeller


Somehow today got away from me. It was one thing after the other, after the other. Answering emails, dealing with what seemed like one issue after the other, and doing everything but concentrating on what I should be doing.... which is writing a chapter! It takes great discipline to write, and I don't have it right now. But I better find it soon! In the midst of everything else I had a kitchen sink that decided to leak and had to be fixed, at one point it looked like Niagara Falls in the kitchen! But my trusty helper, John, was on the scene and I really appreciate his assistance with all the issues we have around our home.

I snapped this photo of these two trees today! One is a rubber fig and the other is a dracena! I received them from my friend Christine, soon after Mattie died in 2009. So that is five years ago! We have nurtured these plants all these years. When Christine gave them to me, they were tiny. Not even knee height! I sent Christine a photo of them today and she couldn't get over how well they are doing! These two friends come inside every winter! 


Yesterday during Curefest as I was visiting the other exhibitor tents, I happened to bump into a little boy. He couldn't be more than four years old. In his hand he was carrying a little painted stone. The one you see here! He opened his hand and told me it was a special painted magic stone and he wanted me to have it. He said he painted it himself! I asked him if he was sure he wanted to give up something so special and he was sure. When I got home, I put the stone next to Jocelyn's memorial card by my deck. It seemed like an appropriate place. I think Jocelyn would have liked this little boy's spirit, energy, and humor. I just wish that Mattie and Jocelyn were alive and could have participated in Curefest, or better yet, I just wish that cancer never touched our lives at all. 

I do think, unlike what is expressed in tonight's quote, I could have "produced a pearl" in some other capacity than having experienced childhood cancer. 

September 21, 2014

Sunday, September 21, 2014

Sunday, September 21, 2014

Tonight's picture was taken in September of 2007. Mattie was in kindergarten and this was our PRE-cancer days! We had no idea how normal our lives were back then and how lucky we were to just live in the moment without having the heavy weight of childhood cancer on our minds. Mattie loved going on the Potomac River with Peter and that weekend they invited me along on their adventures. They were rowing and I was snapping photos.... documenting the occasion. I am so glad I did! 

Quote of the day: Pit race against race, religion against religion, prejudice against prejudice. Divide and conquer! We must not let that happen here. Eleanor Roosevelt


Peter and I had ONE full day! It started at 5:45am with getting ready to participate in an event on the National Mall. We had many signs from Mattie today, showing us that he was with us. We woke up to a smiling Mattie Moon for one thing! 

Because we were advised that traffic was going to be heavy around the Mall today, we decided to walk from our home to the event and back! Round trip that was close to 7 miles of walking! Fortunately we have a cart to lug all of our items that we needed to set up our exhibit booth! But needless to say, just from the physical stand point of the day.... it was long. Then when you factor in the emotional component of the event.... it felt like we put in a week's worth of work in four hours!


There was great energy at Curefest today. To be quite honest I wasn't sure what to expect with regard to today's event, so I level set my expectations. That way I wouldn't be disappointed. In the past I have been very disappointed in my interactions with other cancer groups and for my own mental sanity have had to disengage at times from these interactions. As a result, I have learned to remain focused on Mattie Miracle's mission and try not to get distracted or swayed by outside negativity. But the beauty of today's event was that the people we talked to were parents and family members. People directly touched by cancer. Not people necessarily running organizations, but people wanting to share a story, wanting to tell us about their child, their battle, their memories, and most of all wanting to connect and relate as PARENTS! In so many ways, what today felt like to me was ONE BIG SUPPORT GROUP! It had a therapeutic component. But of course when hearing such tragic stories and sharing your own for over fours hours..... it is draining!


Now check out this photo! I missed this Mattie sign, but I am so happy Peter captured this on camera for me. First off, I have NEVER seen a butterfly like this. Ever!!! But this fellow landed right on the letter 'A' of our SIGN. Apparently this butterfly didn't just flutter by, he parked himself on the sign for quite some time. He was a conversation piece, as if to tell people... "I'm here, come check out my booth!!!"


I want to help put the butterfly into context for you. The photo up above features our Foundation logo, which belongs on top of our collapsible banner of Mattie! It seems to me the butterfly was looking directly at Mattie! 
















Our friends in cancer, Ilona and Attila had an exhibit tent right next to us and they came over and snapped a photo of Peter and I! Our booth featured the following: 1) placards with psychosocial cancer facts, 2) a research poster regarding our National Standard of Care project, 3) FREE t-shirts, 4) an e-newsletter sign up sheet, 5) gold awareness stickers, 6) Mattie Miracle brochures and business cards, 7) rings and toys for kids, and an opportunity to 8) donate. 


The event featured a memory wall of children who died from cancer. Mattie was on the wall!












This was what one of the Memory Walls looked like!










The event featured speakers, entertainers, exhibitors, and a Walk! Peter and I both tried to capture photos of people walking. There was wonderful energy in the air and I got to see a lot of it especially when the crowd passed by our booth! Several people waved, one person told me he LOVED our booth, and the comments just kept coming throughout the day!


Naturally the nature of Curefest is to raise awareness for the biological disease of cancer! Many of the foundations and organizations present today raise money for a "cure." Certainly Mattie Miracle supports the endeavors of these groups, but finding a cure is not part of Mattie Miracle's mission. Our mission centers on psychosocial support, which makes us a VERY unique exhibitor. It also makes us a very unique Foundation. As we interacted with countless attendees today, the number one comment from everyone who came into our tent was that our Foundation is VERY NEEDED and the beauty of those we interacted with was we did not have to explain our tagline. They understand it right away because they know it all too well, childhood cancer is "NOT JUST ABOUT THE MEDICINE!" Any one who has cared for a child with cancer knows immediately that it is the day to day management, worries, and care that stresses children and families out. Cancer is a more complex problem than its physical treatment and unfortunately until you are confined to a hospital room and caring for your own child, I think this is hard for medical professionals to truly appreciate. But today Peter and I could see that we were talking the same language to everyone around us, which was refreshing! 


This was my view as people were walking by!














In fact, the young lady with the yellow hat is Michelle! Michelle is the whole reason I came to Curefest and had an exhibit booth. I met Michelle at Georgetown University in the Spring when I did a guest lecture at the School. Michelle graduated from the University and decided to do some volunteer work for Curefest. She reached out to me and suggested that I may want to participate in today's event. I am glad she suggested it!


This is a full picture of our booth. You can get an idea for all we had going on. I can't tell you the countless stories Peter and I heard today! Some of them were incredibly touching and moving. Several of them were traumatic and I wish I could have advocated for these parents or intervened on their behalf. But unfortunately many of the children have already died. The recurrent theme however of those who lost children is that they are NOT the same, they do not see their lives ever being the same, and many of them are lost, broken, and trying to figure out what to do with their lives! This is a recording in my head that I know quite well, one that others in the outside world do not understand, but the people in this world get very well. Funny how we are surrounded by strangers today who understand us better in this capacity than those who have known us for years! 

Throughout the event I went to visit other exhibitors. One exhibitor, all the way from California, is the CEO and Founder of Along Comes Hope. Jenny and I got to talking and we hit it off. Jenny will be delivering 30 Teddy Bears to Georgetown University Hospital tomorrow. Then I met Shelia from Fighting Cancer with Poetry! As Shelia was talking, she told me she lost her son, Justin, to Osteosarcoma. Justin wrote poetry and she publishes his poetry and her nephew's poetry and donates the proceeds to cancer research. In any case, as we kept talking to each other we realized that we indirectly knew each other through Mattie's big brother, Jey, at Georgetown Hospital. Jey was Mattie's CT tech! Jey always referred to Mattie as his little brother. Jey was very close to Mattie, so much so that when Mattie died, Jey had to stop working in the CT department. Shelia knew about us, as I knew about her and her son Justin! So we were destined to meet!

I end tonight's posting with a photo of me with the co-founders of the Chris Lantos Foundation and their two friends, Joanne and Ildi. The Chris Lantos Foundation just received their 501c3 status, which is well timed as Chris' 14th birthday would have been on September 29. As I told Ilona, this was her first exhibit table and she did an outstanding job! Exhibit tables are very hard to plan and set up for, and a first one is close to impossible!