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I am now en route to Washington, DC. I can't recall the last time I traveled without my partner in crime (hubby Michael) or Cannon, Olivia and the twins.
Cannon and I traveled a lot together during his treatment. As I sit at the terminal gate waiting to board my flight I am excited about the next days to come. There is no moment of time unaccounted for - the days begin at 8am and will end at 9/10pm. Prayers for the most productive and educational trip.
When Michael and I attended DC in the summer for the Alliance For Childhood cancer conference and our Congressional meetings, I mentioned I wasn't sure what would come of it. I realize progress takes time... I do. But the problem is that as we take time time, new kids are being diagnosed, more kids are dying (7 every day), and more are developing secondary cancers.
I want to take a moment and ask for prayers for our buddy Ethan ("Yellow For Ethan" on Facebook). Cannon and Ethan were on the 4th floor (oncology) at Arnold Palmer Hospital for Children together many times. His parents and I would sit and chat while Cannon napped and Ethan played video games. Ethan beat Ewing's sarcoma and was NED for four months. The problem with his treatment is that he was told he could develop a blood disorder called MDS. After four months NED he did IN FACT develop it. Sadly, this then turned into leukemia. In his last bone marrow test he had 69 percent blasts of leukemia! This is awful for Ethan, who is missing his freshman year of high school and his sisters and parents! I've blogged before about the impact on entire families. Michael and I carry great guilt over our time away from Olivia and our twin boys while we fought for Cannon.
The financial impact on a family is awful, too. Many go bankrupt and many divorce. Michael has lost clients who thought "well, he is too busy with Cannon he can't help us now", even though he is working full time. Some clients still think that. Of course that doesn't phase my husband who will never ever give up and keep working his butt off like he always has and still does! The same is true for Ethan's family and many more, sadly! Around 50,000 kids are currently in treatment - that's a huge number of people impacted.
If I could ask for prayers for Ethan and please go to his page "Yellow For Ethan" and pray for his family! They are truly amazing people and deserve as many prayers as possible as Ethan fights a new cancer.
So as I think sad thoughts of being away from my four kids and husband for four days, I also think about Ethan and I know that my kids will someday say "You did the right thing, Mumma bear". At least I hope they do! ;)
I am going to DC for kids like Ethan! It's not acceptable to me or to our team at CKc that the treatment Ethan received made him develop a blood disorder and then secondary cancer. It's not okay!!!! It's not acceptable and it's simply not necessary.
My first meeting today is with a former Congressman who is now a legislative lobbying Attorney at a prestigious firm and also another Attorney who worked on Capitol Hill for 15 years. The short version: What I hope to achieve is their inside scoop on how Congress really works and is there a chance for change at that level.
You see, I have wondered why more childhood cancer foundations don't lobby more. Is it because change is almost impossible? Even when bills are passed... and they are passed... they often make no real change financially in the end, much to the sadness of families and foundations who work so hard.
Our foundation's mission and one of the reasons for this trip is: where should the money go? Should it be in lobbying or should it be in actual research or perhaps both? I don't know the answer to that question but WE are getting closer to it!!!
We want the money spent as wisely as possible as if it's investing in our future but truly it's investing in the kids of the future!!!
We hope in our first financial year to raise $100,000. St. Baldrick's told me this week that's what they raised in their first year and now they give around $25 million a year! Yes, $25 million!! Wow!! What a gift they are to kids' cancer.
Please pray for Ethan.
Please pray Cannon remains NED and that all urine tests come back in normal range and no tumor growth!
Please pray my trip is successful and CKc makes choices that help these kids in the best way possible.
Sorry I am in a demanding mode. I went into mumma-bear business woman mode as I entered the airport. ;)
Thank you to everyone who prays and shares our blogs.
Written by Mumma-Bear
Cannonball Kids' cancer
Thankful For The Fight
148 Days No Evidence of Disease
No Relapse Ever