Saturday, September 19, 2015

Saturday, September 19, 2015

Tonight's picture was taken on April 1, 2009. Mattie was in the physical therapy clinic, which for him was exciting since most of the time he was too sick to leave the pediatric floor for therapy. Mattie loved swings and other fun things that were in the clinic, but not on the hospital floor. So the diversions in the clinic almost inspired Mattie to want to move him body and participate in therapy. 

Mattie was used to platform swings, since he had many years of occupational therapy prior to him developing cancer. Mattie loved movement and contrary to his personality (because he had a cautious and practical side), he loved heights, wild rides, and adventure.

Quote of the day: One day, a son asked his father, "Why is it always the best people who die?" The father answered, "Son, if you are in a meadow, which flowers do you pick? The worst ones or the best?" ~ Unknown Author

We are half way there...it is day 6 (out of 12) of the WTOP Click-For-A-Cause Contest. As of today we have received 420 votes..... THANKS TO SO MANY OF YOU!

We know that 12 days of a contest seems TOO LONG! But in a way it helps to keep the momentum going and for our supporters to help spread our message..... letting others know that we are one of the only childhood cancer foundations that focuses on the psychosocial needs of children with cancer and their families. Without addressing the psychosocial needs for the child and the family, the medical care is not as comprehensive or effective!

Please help us keep the votes coming by sharing this post with friends and family! We can't do this without you!

To vote, go to: http://wtop.com/contests/click-for-a-cause-voting/?char=m

Peter and I attended special interest group meetings today for the Coalition of Childhood Cancer. The Coalition is an organization which is comprised of 82 non-profit organizations, of which Mattie Miracle is one of them. Literally we attended four hours worth of meetings today, but the time went quickly because the topics were very engaging and there was a really collaborative process followed. Because childhood cancer is so personal for all of us, this can be a blessing and a curse when asking people to work together. Therefore when we experience venues in which people are motivated to work together for a common cause, it is inspiring and empowering. 

Mattie Miracle attended the Curefest Opening Reception tonight. CureFest unites the childhood cancer community and the general public as one voice against childhood cancer. We are proud of be bronze sponsors of this National Event! An event which continues on Sunday on the National Mall. The event entails a program, a three mile walk, entertainment, and foundation tables. Mattie Miracle will have a table and tent on the National Mall to bring awareness to the community of our work and mission. 

Pictured in front of the Angel Quilt are six Momcologist! We moms are participating in a National Project, to write a book together on our cancer fight, the lessons learned, and the hope that our cancer work inspires.

The angel quilt is absolutely beautiful and meaningful. Keep in mind that every photo on this HUGE quilt depicts the life of a child who died from cancer. I found it visually moving and shows what a crisis this is for our society. The quilt has inspired me to contact its creator so she can add Mattie's photo to this creation. 

Friday, September 18, 2015

Friday, September 18, 2015


Tonight's picture was taken on January 17, 2009. Mattie had just gotten back home after we took him on a trip to New York City to start his experimental immunotherapy. One of the items he brought home with him was an erector set of the Empire State Building. Peter and Mattie spent that day together assembling this structure. Which was no easy feat. However, this building still sits in Mattie's room on display. 







Quote of the day: We bereaved are not alone. We belong to the largest company in all the world -- the company of those who have known suffering. ~ Helen Keller

Have you voted? It is day 5 (out of 12) of the WTOP Click-For-A-Cause Contest. As of today we have received 409 votes..... THANKS TO SO MANY OF YOU!

Please help us keep the votes coming by sharing this post with friends and family! We can't do this without you!

All the funds that Mattie Miracle raises goes to meeting the psychosocial needs of children with cancer and their families. Which is why winning a WTOP prize would be so vital to helping us fulfill our mission!

To vote, go to: http://wtop.com/contests/click-for-a-cause-voting/?char=m

It is almost midnight and I am just sitting down for today. Peter and I were on Capitol Hill most of the day attending all sorts of events. Literally we never stopped moving. We attended the 6th annual Childhood Cancer Caucus this morning, which was followed by a luncheon, then a White House briefing, and then finally a reception. We are both worn out tonight and the only problem is there are two more intense days ahead. 

Mattie Miracle was one of the sponsors of the Luncheon held on Capitol Hill today. 

At the luncheon, Peter snapped a photo of me with Lee (from California, whose daughter is a cancer survivor), Tony (from New York, and he lost his son to cancer), and Neal (from Canada, and he lost his son to cancer).

A photo of us at the White House Briefing. We are pictured with Dr. Peter Adamson (the chair of the Children's Oncology Group: a clinical trials group, and the world’s largest organization devoted exclusively to childhood and adolescent cancer research), Ilona (the co-founder of the Chris Lantos Foundation), and Rebecca Kirsh (formerly the quality of life director at the American Cancer Society). 

Cancer moms:
Lee, Vicki, Camille, Ellyn, Ilona, Angie, and Beth Anne

Thursday, September 17, 2015

Thursday, September 17, 2015

Tonight's picture was taken on March 18, 2009. Mattie was out of the hospital between treatments and we received special box seats to see the circus. I have to admit this was Mattie's first time visiting the circus. Of course seeing them removed from the chaos of the crowds was perfect for Mattie, since he did not like crowds even before cancer. Mattie's big buddy Brandon (a cancer survivor at that time), was also at the circus and Mattie enjoyed connecting with him and purchasing all these fun circus items to make the experience memorable. These two items (the sword and the twirling elephant) still sit in Mattie's room today. 


Quote of the day: An important way to cope with grief is having an outlet, be it interpersonal, be it artistic, that will allow you to not have to contain your grief, but will give you an opportunity to express it, to externalize it to some degree. ~ R. Benyamin Cirlin

It is day 4 (out of 12) of the WTOP Click-For-A-Cause Contest. As of today we have received 362 votes.

Thank you for voting! WE STILL NEED YOUR HELP sharing this post and encouraging those you know to vote. We can't do this WITHOUT YOU!

Thank you for helping us with this Mattie Miracle, and by voting you are showing your support for our passion to help children with cancer and their families!

To vote, go to:

http://wtop.com/contests/click-for-a-cause-voting/?char=m

After Peter painted his two big toes GOLD, for the "Be Bold, Go Gold Challenge," I decided to paint my nails gold today. We are going to a Gold Event tonight, and we were asked to wear GOLD. So this is one of my colorful contributions, as well as other items I will be wearing. 

We were invited to a Golden Toast event tonight in honor of Rep. Mike McCaul (R-TX) and Rep. Chris Van Hollen (D-MD), the co-chairs of the Childhood Cancer Caucus. We were told to dress in GOLD for the event. It is hard to tell, but my sweater has gold sequins in it.

At the event, Peter snapped a photo of me with Lee Marchiano and Kathleen Ruddy. We met Lee in March with her daughter, Melinda, who is a cancer survivor at the Institute of Medicine's workshop. Though Lee lives in California, we have been in communication ever since. I am reading her daughter's book about her cancer journey, and I am very impressed with her candor and psychosocial journey. 
As for Kathleen Ruddy, Peter and I met her in September of 2014. Kathleen is the CEO of St. Baldrick's. Which is a very large childhood cancer non-profit dedicated to funding the most promising research to find cures for kids with cancer. 

Congresswoman Jackie Speier (D-CA) posed for a photo with Peter and me. Rep. Speier has always been supportive of Mattie Miracle's mission and was at our symposium on Capitol Hill in 2012, when we launched our vision for a national psychosocial standard of care. We enjoyed our conversation tonight with the Congresswoman, because we feel she understands loss very well and were very appreciative of the fact that she understands the challenges of what we do each day in Mattie's memory. 

Wednesday, September 16, 2015

Wednesday, September 16, 2015

Tonight's picture was taken on March 12, 2009. At that point in time we were getting ready for Mattie's chemo regimen to end in about 3 months or so, and the goal at that point was to work on rehabilitation of Mattie's arms and legs with the hope of him returning to school in the Fall of 2009. Of course that never happened. As you can see here, Mattie was doing one of his favorite things..... building with Legos. The year Mattie was in the hospital, we must have built every possible Lego kit available. We still have some of Mattie's creations fully assembled in our living room.


Quote of the day: Sometimes the smallest things take up the most room in your heart. ~ A.A. Milne

It is DAY 3 of the WTOP Click-For-A-Cause Contest! We are going strong at 315 votes, but continue to need your help at posting this message and encouraging others to vote! The competition is fierce and some non-profits have over 700 votes now. We thank you for your support!

To vote, go to: http://wtop.com/contests/click-for-a-cause-voting/?char=m

It is a very busy week for us, filled with many childhood cancer awareness meetings and events. We attended a five hour long meeting today, and heard about the state of affairs with drug development and research and the role advocacy groups are playing to provide children with cancer improved assess to medications. Tomorrow is more meetings and an evening reception, but it doesn't stop there. We are busy through Sunday. On Sunday we are participating in the largest rally for childhood cancer in which we will have a tent set up on the National Mall promoting the Foundation from 10am to 3pm. 

Tuesday, September 15, 2015

Tuesday, September 15, 2015 -- Mattie died 314 weeks ago today.

Tonight's picture was taken on January 12, 2009. We took Mattie to New York City for a second time to visit Memorial Sloan Kettering. In addition to standard therapy, Mattie also went on a trial for an experimental immunotherapy agent. In order to participate in the trial, he had to first start it in New York, where the primary investigator was located. While we were at Memorial Sloan Kettering, the child life staff gave Mattie cardboard boxes to create with on his arrival. They knew to do this since Linda, Mattie's child life specialist at Georgetown clued them in. I have to admit the child life staff at Memorial Sloan Kettering were perplexed with Mattie and had no idea how he could transform boxes into structures. Here was Mattie's final project..... a beautiful blue plane. I want you to know that this plane took a taxi ride back to our hotel too and it took great convincing to get Mattie to leave the plane in NYC, rather than to transport it home to DC. Not that I did not love the plane, but our home had already been transformed into warehouse from all the things we had been accumulating since Mattie got sick. 


Quote of the day: An important way to cope with grief is having an outlet, be it interpersonal, be it artistic, that will allow you to not have to contain your grief, but will give you an opportunity to express it, to externalize it to some degree.

~ R. Benyamin Cirlin

It is DAY 2 (out of 12) for the WTOP Click-For-A-Cause Contest! Thank you for helping us get 198 votes yesterday!!! We STILL need your help..... please share this posting with friends and family and encourage them to vote and share this post. Winning this contest takes a Grass Roots effort, and we thank you for your support!

My cousin today posted this message on her Facebook page in Italian and sent it to our relatives in Italy! We are hoping to make voting global. 

To vote, go to: http://wtop.com/contests/click-for-a-cause-voting/?char=m

Recently Peter and several other cancer dads created and have been taking part in a GOLD challenge. First the challenge involved painting their big toes GOLD, in honor of childhood cancer awareness month. However, as the challenge has been going on, they have upped their game... painting all their nails, one dad painted his whole body, another wore a gold colored kilt, another dad set up all his DeWalt power tools behind him (which are boldly yellow) and now we have the King of the Facts! These dads are amazing examples of what parents do for their children to bring awareness to a vital cause.

To see the Gone Gold for Childhood Cancer video, click on this link: https://www.youtube.com/watch?v=oDJAwtFn1lk

This is the last tie for Orange Tie Week (Tuesday of last week to today!). Today's tie has fish and seaweed on it! Clearly Tim has a sense of humor and of course this would have been a tie Mattie would have LOVED! 

Monday, September 14, 2015

Monday, September 14, 2015

Tonight's picture was taken on September 7, 2008. It maybe unclear as to what you are looking at, but Mattie was in his hospital room dancing. He was dancing to a song that was composed for him by Peter's colleagues in Peru. The title of the song was, "My Little Child." Mattie loved the song so much that the music took over and he started to sway and dance to it. It was a moment not to be forgotten! With a large IV pole and tubes attached to him, Mattie still decided to express himself. You may also notice stacks of cardboard boxes behind the door. These weren't for storage, they were boxes that the hospital staff collected for him, so he could create and design with them. One of his favorite past times.  


Quote of the day: The reality is that you will grieve forever. You will not "get over" the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to. ~ Elisabeth Kübler-Ross

Mattie Miracle is participating in a facebook contest hosted by WTOP. This is the second year that WTOP is hosting a Click-For-A-Cause contest, that allowed qualified non-profits in the Washington, DC area to compete for votes. Like a popularity contest in a way. The non-profit who gets the most votes wins $12,000. Which is why Peter and I have generated a facebook and twitter campaign today. This was the first photo we posted on all three of our facebook sites. There will be a new photo for each of the 12 days that the contest runs. Our goal is to get our supporters and their friends to vote for us and then share the link to vote with family and friends. We need a chain reaction, or a grass roots campaign for this to work. I noticed that the top non-profits getting votes so far all have to do with animals! 

To vote, please go to the link below and tell others about it!

http://wtop.com/contests/click-for-a-cause-voting/?char=m

Our friend Tim Mooney sent us this photo today in honor of Day 6 of Orange Tie Week! I love this tie because it reminds me of Nemo from the Disney movie, "Finding Nemo." A fish that Mattie happened to like!

As for the update on the construction project on our deck...... it isn't over yet! I just called the foreman today, who promised that it would be done last Friday. Well guess what, it will be ANOTHER WEEK until it is over! That is two weeks dealing with this nonsense and I have had just about enough. Between the dust, noise, and lack of privacy, this was truly an awful time for them to do this project.  

Sunday, September 13, 2015

Sunday, September 13, 2015

Tonight's picture was taken in September of 2007. Mattie was five years old and Peter introduced Mattie to going out on the Potomac River in a row boat and fishing very early in life. This was something Mattie enjoyed doing, maybe for the adventure, but also because it was an activity that the "boys" did together. Most weekends I stayed home in the morning when they did this together, but that particular day, Mattie asked me to come along because he wanted me to watch him fish and to experience this with him. So I was in boat doing what I did best.... snapping photos of Mattie. Mattie caught several catfish that day, of which I would then take a photo of the fish before Peter threw it back in the water. 


Quote of the day: When someone you love dies, and you're not expecting it, you don't lose her all at once; you lose her in pieces over a long time -- the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers. Gradually, you accumulate the parts of her that are gone. Just when the day comes -- when there's a particular missing part that overwhelms you with the feeling that she's gone, forever -- there comes another day, and another specifically missing part. ~ John Irving

Peter and fellow dads and cancer advocates, developed the "Be Bold Go Gold Challenge" today. A challenge that is taking place on Facebook! Basically these dads are being challenged to paint their big toe GOLD with nail polish. Not something men typically do, but when motivated to bring awareness to childhood cancer, you would be amazed at the response! You can see the video Peter created today and posted on his Facebook page:
https://youtu.be/GNu-loIbRhM

Our Facebook friend, Tim, created another wonderful tribute to Mattie and sent it to us today. Tim picked the photo himself and when I saw it cropped into this piece, it took me only minutes to remember the context it was taken in! 

I can recall this day as if it were yesterday. Mattie was sitting on our kitchen counter and beside him sat his large birthday cake, to celebrate his fifth birthday! Of course you can't see any of this content when looking at the photo here. But since I took the photo and remember that very rainy day in which we celebrated Mattie's birthday at the zoo it is etched in my mind. 

We went for a three mile walk today around Huntley Meadows. A beautiful nature preserve near Alexandria, VA. As we entered the boardwalk that traverses over the swampy area, this glorious butterfly came to greet us. 

Typically this area pictured here is covered with water. But given the near drought conditions, because of our lack of rain, all the water has dried up. I have never seen the swamp looking like this. 

Fortunately there is some water around, and of course where there is water, there is wonderful life. Turtles
were up on a log sunning themselves and they were a sight to see. Many people stopped to look at this line up. 

A beautiful Great Blue Heron

A White Heron

I know a lot of people are not in love with Canadian Geese, but I happen to love them. I like how devoted they are to one another, their team work 
and cohesiveness. This was a mother goose with her grown up babies behind her. They were a thing of beauty to see them gliding through the water. If Mattie were with us, he most definitely would have commented about this mother goose. Mattie was intrigued by mother animals and their babies and would always compare them to him and me.