Hello everybody!! I am back home and getting re acclimated to the altitude and drop in humidity!
Washington DC was a great trip but I must admit I felt a bit discouraged, well, A LOT discouraged with the answers we were given in regards to the 30 million dollars a year that Curesearch and Children's Oncology Group are requesting! Getting any funding for anything right now in our government is less than reasonable. Everybody has their hand out...everybody.
Childhood Cancer, even though it is the leading cause of death by disease in our children, seems to just fit in the bucket of "cancer". That means it is just "there"...very unspecific and overlooked. This is MY opinion.
It has been heard time and time again, that somebody "big" child needs to get cancer to get recognition...kinda like the Lance Armstrong of kids. Who would that be? Our kids are everything to us, our kids are the "big" ones! Does one of Angelina Jolie and Brad Pitt's children need to get cancer (NO, I AM NOT SAYING I WANT THEM TO...SO JUST LISTEN!)? Does the President, himself, have to have one of his daughters to get cancer or a huge supermega sports start like Tiger Woods, or Kobe Bryant? I don't know. I really don't. I do know this...things have got to change and change soon.
I met some remarkable new parents this trip. Parents of angels. Again, except for two other families from Colorado, I was the only one that I know of that had a survivor. Every other friend/aquaintance had lost a precious, precious child to this disease.
We hoped and prayed for answers for those children but it was too late. Shelly Kurtz (Blake's mom from Colorado) was there on the Hill with us and only 6 weeks after she lost her son.
Explain to Julie, Angel, Sandy, Mo, Alicia, Mimi, and so many other momma's (and DADDY's) how their child did not get the "survivor" card handed to them in their treatment plan. How rare tumors are overlooked, how adult treatments are being used in children, how the side effects killed their child-not necessarily the cancer.
I looked around and was just heartbroken. During the rally in the morning of the conferences on Capitol Hill...there was one particular mom who was holding signs up of her son who just passed away 2 months ago. First pic...cute, healthy boy! Second pic- cute, unhealthy, tube out of his nose, eyes closed boy.....Third pic, beautifully cute little boy in a casket in a real firefighters uniform, Fourth pic....closed casket. this is the picture attached to this update. OMG...tears just rolled down my face!
We spent the day on Tuesday in and out of meetings with Reps and Senators which we only got a chance to meet with their aids....but met with Senator Udall in person at the rally in the morning!!!!
I felt angels all around me the entire trip. Many of you know how my pics many times have weird things in them, well this trip was no different. I have some crazy pics with orbs, faces in clouds, unexplained gold ribbons, etc! Us cancer families try to remain upbeat in the face of fear, unhappiness, loss and love...We make the best in every situation. We see life differently than most people. We were able to take a walk down thru chinatown to the White House and back thru National Park...we walked at night to see the lit up monuments, we took a carriage ride, laughed, cried, talked, enjoyed silence (who am I kidding, I was there.....). We took tons and tons of pics....We walked to Arlington Cemetery then took the metro back so we could get to the RED SOX game early! I was able to visit the Women in Service Memorial Monument at Arlington and checked if I was registered. I wasn't so they gave me a form to fill out.
Flying back our plane was delayed both flights. In DC due to mechanical (air conditioning) and in KC due to severe storms in Denver. During that time Michael Jackson died and the TV was consumed with that coverage. Poor Farrah Fawcett's death was put back a bit due to all of MJ coverage but we had a chance to watch Farrah's story on TV and boy was that touching. God, Ryan ONeal LOVED HER!
I went to see my Sisters Keeper today with Tasha, Lalana and Gabby. I cried from beginning to end. This movie was nothing like the book by Jodi Picoult that I read as the ending was completely different but I am happy that childhood cancer is being seen on a big movie screen with all its awfulness. Somebody has to speak out on behalf of these children.
The MIRACLE PARTY is now my focus and great, great things will happen this year. Hopefully, if we are able to get the word out to as many people as possible, this movie and just prayers.....CHILDHOOD CANCER WILL MAKE IT'S MARK ON THE MAP!!!!
THE MIRACLE RIDE IN INDIANA BROUGHT $2,250.00!!! Enough to pay an event planner a down payment and get things started for the September 12, 2009 event!!! Thank you Jimmy Pitts and the riders in Indiana for a great donation!
Kennedy and Kerrigan will be returning from Indiana soon and Kennedy has scans on JULY 14, 2009! HER LAST SET OF SCANS WITH DOCTOR KERRY HERE IN COLORADO! PRAY FOR KENNEDY'S SCANS TO BE CRYSTAL CLEAN!
Grandpa Miller is back in ICU..he had a mishap in the yard...he had heat stroke, heart attack, injured his ankle, both shoulders and has a kidney/urinary tract infection. This man is the strongest, toughest, most resilient man I have ever seen in my life. I thought he would of went to Heaven back in March when his heart function was under 20%. Pray for Grandpa to be pain free and for answers to what we should do after he is released. He made it very clear he wanted nothing to do with a nursing home but right now I do not know what other options there are. If the Sears man would not have found him....he would of died in his yard. He had been laying there and was sunburned as well. I can't explain how stubborn he is and how he thought he could get on his mower. That is an 87, WWII vet for you...right?
My momma (Martha) has a nodule in her lung. She needs prayers not only for her lung but for her knee that soon will be operated on. She had one knee replacement and now this other one is giving her tons of pain. She is still so active and young and wants to do som much more than she is able right now. Pray for her knee surgery, her pain level, her lung....dang, we sound pathetic.
I tell you ....we are so blessed for the health we do have in our family!
We are blessed that KENNEDY IS OUR SURVIVOR, OUR STRENGTH, OUR SUCCESS STORY. We are blessed that Kerrigan, Kaden, Nicole and Mersai are healthy, happy and super children!
I will post pics of the trip to DC...and some from Indiana...I will post new albums on facebook (stacykay68)!
Continue to pray for our friends. For Mallory, Taylor, Taylor, Justin, Isaac, Isaac, Amanda, and sooooooo many more. We love them all and want them to be cancer free!!!! We thank you in advance for your support to all the children. Keep this site growing...keep the awareness alive, keep the FAITH and send GOLDEN KISSES to all.
I will update with prayer requests as I get them....
xoxoxoxox Stacy
