CureFest’s mission is to make childhood cancer research a national priority. The government only allocates 4% of cancer research to childhood cancers, and we don’t think that is an adequate amount for our children.
Friday we got up bright and early and headed to the airport. When we arrived in DC, we took a cab to the hotel, checked in, and decided to take a bus tour of DC. The tour was a nice way to fit in a lot of sites in a short amount of time. It ends at the Lincoln Memorial where you can hop off and see an amazing view of the Washington monument before making your way up into the Lincoln Memorial.
Saturday we met with other Ewing’s families and made signs that we would use during the march to the National Mall. We’re all part of the 1Million 4Anna foundation which helps Ewing’s Families. Anna passed away from Ewing’s Sarcoma and her mom does an amazing job bringing us all together. They’re doing a pretty awesome thing in memory of their daughter. The camaraderie and support is fantastic not only for Parker, but also for myself.
We then met with other families and supporters at Freedom Plaza. We gathered in groups and began our march to the National Mall. We followed the leaders with megaphones and chanted “More Than 4” and “Please don’t look the other way or you’ll be marching with us someday.” Many people watched us and read our signs.
When we arrived at the National Mall in front of the Capitol we took a group picture. We then talked to other families, hugged the people we hadn’t seen since last year, and met new families and supporters. On the walk back, I talked a bit with Tom Mitchell, also known as Tattoo Tom. Tattoo Tom does this crazy thing where he runs ultra marathons and dedicates each mile to a child fighting cancer, including his daughter Shayla who passed after bravely fighting stage 4 Hodgkin’s. Parker, a while back, donated $200 of birthday money to Tattoo Tom and his foundation Stillbrave. Parker is also one of his kids that he will running for in his next race. There will be more to come on that – Parker will have his own fundraising page and we are going to be doing all that we can to help raise money.
After the march, we headed back to the hotel and grabbed a bite to eat. We rested a bit in the room and caught a little of the Iowa football game before heading back to Freedom Plaza.
We met and talked to other families. We even got a little star-struck by some of the kids we follow on Facebook.
They did something new this year with beads, which was quite cool. Parker wore silver beads as he is out of treatment and NED. I wore blue for being his parent and silver. Siblings had a separate color, and parents who had lost children wore white. There were other colors, such as purple for supporters, but I’m unsure of the rest. I noticed people were using the beads as an ice breaker. They started conversations and new relationships. Definitely a good addition.
Saturday night, there were performances, stories, speeches, many moments of pride, laughter, and tears. These are moments that will stick with me throughout the rest of my life. We met one of the speakers last year after Parker gave his speech. She introduced herself and talked about how she too lost a friend she met in the hospital. She recently celebrated 5 years of being cancer free. That all ended when she heard the news that she has relapsed. She’s determined to fight and beat cancer for the 2nd time. She was given a standing ovation, and I stood and cried, amazed at how brave she was. Another one of the speakers is a fellow Ewing’s fighter and is still having complications with her leg, much like Parker did. Their family is incredibly nice and welcoming and her and her sister did a fantastic job speaking and performing.
We ended the night with a walk to the Whitehouse and candlelight vigil. We stood holding up our electronic candles as the group sang Amazing Grace.
We headed back to the hotel emotional and exhausted. It’s the most walking Parker had done since getting his prosthetic leg.
Sunday all events were at the National Mall. Parker opened up CureFest as a co-host with two others – Shannan and Caoilinn. They introduced themselves and then the performers throughout the hour. There were dancers, singers, and speakers. All were extremely talented and blew us away.
When Parker finished co-hosting, we made our rounds. They had set up tents for foundations. Foundations that had helped us through facebook such as Ellie’s Hats and One Million For Anna. Another mom that we had met the previous year started Kate’s Cause in memory of her daughter. Parker thinks the world of Kate’s mom and was thrilled to see her there. Yet at the same time, so incredibly sad knowing the reason she was there. Many booths were passing out wristbands including Kate’s Cause. He grabbed 2 of Kate’s, just in case one broke.
We walked by the tribute wall which is full of fighters, survivors, and those no longer with us. It takes our breath away every year, especially knowing that just a very, very small percentage of childhood cancer fighters are on the wall. There are so many that are not, but it still seems like the wall holds too many.
Two of Parker’s favorite people, Everett and John, were also there. They were even wearing Power for Parker shirts! We met Everett and John when they ran from coast to coast a few years back to raise awareness for Childhood Cancer. John gave Parker a tutu (TUTU much cancer!) and taught him a little yoga – something Parker now wants to do back home. They also started a challenge in which they are going to take turns taking pictures in public wearing their tutus and hopefully answering inquiries as to why they are wearing a tutu – to raise awareness. (It’ll also tie in nicely with an ongoing joke between Parker and my cousin, Ian.)
As events wrapped up, we headed back to the hotel. We decided to take advantage of the few hours remaining and we went to a few more memorials. We even went back to the Lincoln Memorial. We had printed off a picture of a little boy named Lincoln from back in Iowa who had passed away from cancer. His mom spoke at Dance Marathon at the U of IA and Parker wanted to send the picture to his mom.
We met so many great people at CureFest and we’re already looking forward to going back next year. The Truth 365, Mike Gillette and Lisa Luther Shaw do an incredible job organizing this event. They put in so much hard work and dedication into this event that a simple Thank You doesn’t seem adequate. Just know that this event changed our lives for the better. It’s helped us exponentially in our journey, and we appreciate all the hard work you put into it. Thank you, thank you, thank you.
Friday we got up bright and early and headed to the airport. When we arrived in DC, we took a cab to the hotel, checked in, and decided to take a bus tour of DC. The tour was a nice way to fit in a lot of sites in a short amount of time. It ends at the Lincoln Memorial where you can hop off and see an amazing view of the Washington monument before making your way up into the Lincoln Memorial.
Saturday we met with other Ewing’s families and made signs that we would use during the march to the National Mall. We’re all part of the 1Million 4Anna foundation which helps Ewing’s Families. Anna passed away from Ewing’s Sarcoma and her mom does an amazing job bringing us all together. They’re doing a pretty awesome thing in memory of their daughter. The camaraderie and support is fantastic not only for Parker, but also for myself.
We then met with other families and supporters at Freedom Plaza. We gathered in groups and began our march to the National Mall. We followed the leaders with megaphones and chanted “More Than 4” and “Please don’t look the other way or you’ll be marching with us someday.” Many people watched us and read our signs.
When we arrived at the National Mall in front of the Capitol we took a group picture. We then talked to other families, hugged the people we hadn’t seen since last year, and met new families and supporters. On the walk back, I talked a bit with Tom Mitchell, also known as Tattoo Tom. Tattoo Tom does this crazy thing where he runs ultra marathons and dedicates each mile to a child fighting cancer, including his daughter Shayla who passed after bravely fighting stage 4 Hodgkin’s. Parker, a while back, donated $200 of birthday money to Tattoo Tom and his foundation Stillbrave. Parker is also one of his kids that he will running for in his next race. There will be more to come on that – Parker will have his own fundraising page and we are going to be doing all that we can to help raise money.
After the march, we headed back to the hotel and grabbed a bite to eat. We rested a bit in the room and caught a little of the Iowa football game before heading back to Freedom Plaza.
We met and talked to other families. We even got a little star-struck by some of the kids we follow on Facebook.
They did something new this year with beads, which was quite cool. Parker wore silver beads as he is out of treatment and NED. I wore blue for being his parent and silver. Siblings had a separate color, and parents who had lost children wore white. There were other colors, such as purple for supporters, but I’m unsure of the rest. I noticed people were using the beads as an ice breaker. They started conversations and new relationships. Definitely a good addition.
Saturday night, there were performances, stories, speeches, many moments of pride, laughter, and tears. These are moments that will stick with me throughout the rest of my life. We met one of the speakers last year after Parker gave his speech. She introduced herself and talked about how she too lost a friend she met in the hospital. She recently celebrated 5 years of being cancer free. That all ended when she heard the news that she has relapsed. She’s determined to fight and beat cancer for the 2nd time. She was given a standing ovation, and I stood and cried, amazed at how brave she was. Another one of the speakers is a fellow Ewing’s fighter and is still having complications with her leg, much like Parker did. Their family is incredibly nice and welcoming and her and her sister did a fantastic job speaking and performing.
We ended the night with a walk to the Whitehouse and candlelight vigil. We stood holding up our electronic candles as the group sang Amazing Grace.
We headed back to the hotel emotional and exhausted. It’s the most walking Parker had done since getting his prosthetic leg.
Sunday all events were at the National Mall. Parker opened up CureFest as a co-host with two others – Shannan and Caoilinn. They introduced themselves and then the performers throughout the hour. There were dancers, singers, and speakers. All were extremely talented and blew us away.
When Parker finished co-hosting, we made our rounds. They had set up tents for foundations. Foundations that had helped us through facebook such as Ellie’s Hats and One Million For Anna. Another mom that we had met the previous year started Kate’s Cause in memory of her daughter. Parker thinks the world of Kate’s mom and was thrilled to see her there. Yet at the same time, so incredibly sad knowing the reason she was there. Many booths were passing out wristbands including Kate’s Cause. He grabbed 2 of Kate’s, just in case one broke.
We walked by the tribute wall which is full of fighters, survivors, and those no longer with us. It takes our breath away every year, especially knowing that just a very, very small percentage of childhood cancer fighters are on the wall. There are so many that are not, but it still seems like the wall holds too many.
Two of Parker’s favorite people, Everett and John, were also there. They were even wearing Power for Parker shirts! We met Everett and John when they ran from coast to coast a few years back to raise awareness for Childhood Cancer. John gave Parker a tutu (TUTU much cancer!) and taught him a little yoga – something Parker now wants to do back home. They also started a challenge in which they are going to take turns taking pictures in public wearing their tutus and hopefully answering inquiries as to why they are wearing a tutu – to raise awareness. (It’ll also tie in nicely with an ongoing joke between Parker and my cousin, Ian.)
As events wrapped up, we headed back to the hotel. We decided to take advantage of the few hours remaining and we went to a few more memorials. We even went back to the Lincoln Memorial. We had printed off a picture of a little boy named Lincoln from back in Iowa who had passed away from cancer. His mom spoke at Dance Marathon at the U of IA and Parker wanted to send the picture to his mom.
We met so many great people at CureFest and we’re already looking forward to going back next year. The Truth 365, Mike Gillette and Lisa Luther Shaw do an incredible job organizing this event. They put in so much hard work and dedication into this event that a simple Thank You doesn’t seem adequate. Just know that this event changed our lives for the better. It’s helped us exponentially in our journey, and we appreciate all the hard work you put into it. Thank you, thank you, thank you.
RSS Feed