Thursday, June 28, 2012

SUMMAH tiiiiiiiime

Gideon's most recent battle with pneumonia has been won, I just brought Brody back from his last day at skateboarding camp, and now we can't seem to sit still due to the INCREDIBLE excitement that creeps in as our approaching trip to Grand Marais draws nearer! We are daydreaming out loud about all of the incredible things we plan to do up there. Speaking of Grand Marais, I would like the town to know that Brody purchased some Captain America costume pieces with the money you sent. He'll model it for you in the 4th of July parade. Gideon bought a glider... That will be sailing over the bay, I am sure. Grand Marais continues to love on my boys, and we can't wait to love on you SOON.

Yes, we are excited. Gideon's emotions are in overdrive since he had his Vincristine chemo on Tuesday and we are heavy into STEROID WEEK. I am hoping that the Gideon I transport for 8 hours up north in the car will be the sweet and loving part of the chemo accordion. I would rather pull over for cuddling and not to restrain him from Hulking-out on his brother. I am nervously laughing right now...hear it?

Ahem. Gideon's numbers at clinic were phenomenal. His cough from pneumonia is almost gone! When he was allowed to get a "poke prize" from the treasure box, he picked UNO. We have UNO, but I soon found out why he chose that game. A bunch of his chemo kid friends were in the treatment room, and he wanted to play with them. He told me after the cancer kid camp (Camp Catch-a-Rainbow) that Kevin is now his best friend. Kevin was one of the boys in the room, as well as beautiful Camrie. Gideon finished in last place, but he smiled and gave his friends high-fives as I sang him the "Losing Song". I am sure you know it: "WAH-WAH-WAAAAAAAAAAH!" He thinks it's a funny song, thankfully, and doesn't mind losing since he gets to sing the ditty with me. Let's see if that attitude stays this week... Crossing my fingers.

(Gideon with his Cancer Fighting BFFs!)

Now... I think with the proximity to the fourth of July, I need to explain what an extreme blessing my trip to Washington D.C. turned out to be. Mary Kay, Emma's mommy and a SUPER amazing friend of mine, was my advocating partner for the trip. We traveled together, visited congressmen/women, and senators. The amount of information we learned was astronomical, but the immensely huge reward of feeling as though we were ACTIVELY changing something in our government in the names of our children...there are no words in our language. That type of honor, privilege, and gift was elevating my soul as a constant balloon that lifted me someplace higher than I have ever been.

We were told that "The Creating Hope Act" was on the five yard line and that our help was needed to push it all of the way through Senate. It passed the House, but was in conference. We needed to convince the Senators to pass the bill as the House depicted it: giving pharmaceutical companies incentives (a monetary carrot in the form of patenting other more money-making drugs longer, so no tax money would be used) to develop NEW drugs for pediatric cancer patients (a new drug hasn't been developed since 1980 because...get wasn't PROFITABLE), but also to fine companies that do not comply with alerting the FDA when life-saving medicine was going to be in short supply (the stick).

Mary Kay, myself, and two other families (including their superhero kids) attended the meetings together. We took turns describing why our "Three Asks" (as seen in the video below) greatly affected OUR children. We shared anecdotes and even tears. What politician could look us in the eyes and say, "No"?

As I walked the Hill from one appointment to the next, a heavy sensation of pride for my country overtook me. It did. Complain about taxes. Complain about healthcare. But guess what? We are ALLOWED to complain. We are granted that freedom. Just like I, a simple citizen, was allowed to lobby for my cause in order to make bills move faster for my beliefs. What an HONOR. When I was in China, a Chinese tour guide smiled and said, when asked, that "The one child law is right and just." Her smile didn't reach her eyes, and when she turned away, the smile didn't just go away, it instantly vaporized into a scowl as she turned her face down towards the ground. Yet another Chinese tour guide actually DENIED there ever having been tanks in Tiananmen Square, and shook his head in confusion of not understanding who this "Tank Man" could have been. I was heading to a sit-down meeting with a man who helps makes LAWS for our NATION. We are allowed to do this. We can make things happen! To be honest, I dreaded US Government class in high school. I simply memorized the governmental roadmap for the test and I didn't really care much more than that A grade. But to BE THERE, to be actively involved in something so much bigger than I have been biten by the governmental vampire and I am thirsty to do MORE, MORE, MORE in order to do something good of our nation.

We are a blessed people. As you can see from the video below, our efforts were not in vain. God Bless the USA, and God BLESS those children with cancer who the government granted a VOICE in our nation (finally!).


  1. Once again, you bring tears to my eyes. What a beautiful movie and sentiment regarding this great land of ours and the fact that these children can fight their fight here where Americans care. Congrats to all of you who made the trip to Washington and gave it your all for the love of this country and the many of children who suffer from this disease. Pat yourselves on the back for all your hard work in not only saving the lives of your children, but for the many children that fight this fight. Bless you, I am glad to call you a friend.

  2. AMAZING, Amanda! What an awesome experience. I also read what Katie Ouding wrote on your wall. I am so glad that you two have such respect for one another. Please let her know that we are all praying for her family and all who knew and loved Christian.
    Love, Katie