So much to update here - so much is happening behind-the-scenes! Most important, how is Cannonball? We continue to do speech therapy and occupational therapy with our baby boy. Cannon turned 3 on August 10th and still doesn't talk so we were suggested to have an educational psychologist evaluation. I did wonder if Cannon was autistic. We have been working with the psychologist to push Cannon forward. Cannon now claps, sometimes waves bye (though not often), points to things and babbles and is getting stronger in his legs and arms. Can I just say this - Cannon is HAPPY!! Cannon is a really HAPPY BOY!!! He is a miracle to me even if he never talks!!! I know he will. I can't say it's not hard having him not talk. Cannon and I have Wednesdays 9-1 to ourselves every week and we often go to the bookstore. This week when we were there a little 5 year old boy was playing aside him trying to talk to him and Cannon was babbling. The boy was like "why doesn't he talk properly?" and "why doesn't he talk?". The truth is Cannon was diagnosed at a year and a half old and was on a feeding tube many times and as a result he is more at a 18 month old age speech-wise. I am told he is developmentally and language delayed to which I respond "He is alive!! He is a miracle!" Oh and did I mention.... Cannon is a happy, happy, happy BOY!!!
Down to business now!
One of my roles within the foundation (jack of all trades, master of none) is to vet charities. What does that mean? Well, just because you have a big name behind you doesn't necessarily mean that your work is what is going to change the face of pediatric cancer, right? As a result I have made it part of my mission to thoroughly vet the big names before presenting that $100,000 check ("cheque" to my UK friends) we hope to give at our one year anniversary (June 2015). Someday they will be $1 million dollar checks!
On Monday, my husband and I went to Memphis and went to St. Jude Hospital. My husband and I paid for this from our own pockets. I don't say that for a pat on the back but rather I want people who donate to CKc, a research organization, to know that we try with all our might to ensure that as much of that penny in the dollar goes to actual lab research for pediatric cancer. That's so important to us. With that said, we also appreciate there are times where you need to spend money to make it. Running a foundation is very much like running a business. My husband has over 25 years of managing and being a founding partner in a law firm so I feel like we're in good hands ;).
You know I'm an action person and not just words so what am I doing in a practical sense to ensure funds are going to go to the right people and places?
1. I visited with St. Jude, met with an oncology doctor there and did a tour. They are sending me information I requested and we will go from there.
2. St. Baldrick's has asked us to partner with them. My understanding is that they do that a lot with new and young foundations. I have heard mixed comments about St. Baldrick's. Again, I am putting my personal feelings aside (I love them) and truly asking detailed questions, not only on where the research dollars go but the vetting process for that and results-to-date. You can give more money to pediatric cancer than any other foundation but that doesn't mean you are the best at moving cancer research forward. I am assuming nothing from ANY organization.
The same applies to Arnie's March. Last year our foundation wasn't set up and we as a family set up a CKc team and raised almost half of the total amount raised from the whole event. That doesn't mean that we as a foundation will do the same. I have requested a meeting with Arnie's March and a detailed account of EXACTLY where the funds go. I believe next week I will get the opportunity to meet with them. Again - I , WE are assuming nothing. Our mission at CKc is very clear and we can't participate if funds go to services such as bringing a meal or blankets to families. Let me be clear: those services are needed and were so appreciated by my family when we were in crisis. There are many amazing organizations that focus on that form of outreach. But our mission is crystal clear: education and research to ultimately find a cure for pediatric cancer, so one of my jobs is to make sure that we remain true to our mission!!! Again, keeping personal feelings aside (I LOVE APH), but these kids deserve the best and I plan on trying to FIND that.
Next week I head back to Washington, DC. I will go myself as Michael has to work (we have four kids to support including one about to go to college - aghhhh!). The purpose of my trip is two-fold. I will be attending the CureSearch symposium on pediatric cancer, researching and scouting where we could put funds but also meeting with CureSearch since they have suggested a partnership also. The second part will be meeting with two lobbyist attorneys. One is a former Congressman and the other worked on Capitol Hill for 15 years. I can't wait to get as much information as possible. I am hoping to truly understand how Congress works (really works) and how or IF I can increase funding for kids!!! I will also meet with a Congressional aide that I met earlier this year. I know it's going to be hard work but that's what I thrive on!! Nothing worth having comes easy - right?!
I am dedicated to CKc and our cause, leaving Cannon, the kids, my husband and home for days to work on where to place funds. I'm trying to educate myself and educate you. I hope it is a true testimony to my dedication and also shows you that we are truly serious and committed to changing the face of pediatric cancer. This is not a pipe dream!!! Change is coming!!
The book "Thankful For The Fight" is complete on my end (the writing) but we are at a standstill. We need someone with INDESIGN expertise. If anyone is able to help us that would be so, so, so appreciated. My email is now Melissa.firstname.lastname@example.org.
We are also beginning to apply for grants, so any volunteer who has any experience with grant writing please email me.
Sadly, the "4%" T-shirts didn't all sell! I think it was a bold T-shirt and maybe when more people are educated, more will be sold!
I also wanted to express HUGE appreciation to Cannon's godmother Ryhan and her husband Jay. They have truly been incredible through this journey. Ryhan's family owns ABC Bus company and guess what??? Well, 40 buses in Washington, DC, Virginia and New York have been driving around with pediatric cancer facts on the bumper!!! Yes, that's right... 40!!! Can you imagine how many new people just learned that pediatric cancer is the number one killer of children in the US? Wow!! Thank you ABC Bus company and Ryhan your passion for kids cancer is amazing!! Love it!
Written by Mumma-Bear
Cannonball Kids' cancer
Thankful For The Fight
143 Days No Evidence of Disease
No Relapse Ever