A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Children’s Miracle Network’

LoveBug, Legislation and Beaver Dams

Grace: A Child's Intimate Journey Through Cancer and Recovery

I met one of my heroes. I will never, ever forget it.

I met Braden Hofen.

It was even more inspiring than my wildest dreams could have imagined.

Why?

Because he is Braden!

Are there ever times in your life where you really want to do something, but then those creepy doubts and negative thoughts take over, and you choose to accept them over what your heart is telling you to do? Well, this time, our hearts won. Mom and I cannot even describe what it means to us that we were able to travel to Kansas for Braden’s Run! There were so many highlights, I won’t name them all, but I will tell you that meeting others who are passionate about the fight against childhood cancer—while kicking cancer’s patootie—was awesome, awesome, awesome! I mean… what better inspiration and motivation to keep advocating for the children, than to look straight into the eyes of others who feel just like I do? Memories of spending time with Braden, his family, Christine (Hello–tremendous friend who was inspired by Braden and Deliece to start the Oprah, Please Do a Show on Childhood Cancer Facebook Page,) Lauren, Rachel, and Patrick will always be warm inside of me. I even got to meet two of the amazing 46 Mommas! Ms. Cheryl, I will never forget the surprise blessing of meeting you!

Back to six-year – old miracle boy Braden…

I am still filled to the tippity-top with the love and support that surrounds him. He brings out the very best in people by being the Lovebug he is. His family, his friends, and the people of his town and surrounding communities came to Braden’s Run to show their support in a great big way. The Kansas City media and the Kansas City Chiefs honored the event with their support as well. Braden’s Hope Foundation raised a lot of money for pediatric cancer research.

What if?

What if the money raised last weekend funds the exact research needed for a cure?

Seriously… what if?!

Doesn’t it make your mind spin… thinking of what you can do to multiply the odds of funding research for a cure??????????

Speaking of funding, thank you PAC2, for your update on the Caroline Pryce Walker Conquer Childhood Cancer Act:

From PAC2  4-22-11

We have all wondered why this Act, which had 100% bipartisan support, would NOT be fully funded.   Interestingly enough, so did the House of Representatives Appropriations Committee, who said this to National Cancer Institute (NCI) in the FY 2010 House of Representatives Report 111-220 (Page 109):

“Pediatric Cancer — The Committee urges NCI to intensify pediatric cancer research, including laboratory research, to identify and evaluate potential therapies, preclinical testing, and clinical trials through cooperative clinical trials groups. This research should include research on the causes, prevention, diagnosis, treatment, and late effects of pediatric cancer. The Committee also requests that NCI report to the Committees on Appropriations of the House of Representatives and the Senate by June 1, 2010 on the actions it has taken to implement the research-specific portions of the Caroline Pryce Walker Conquer Childhood Cancer Act.

Why is funding for research critical NOW?

Noah.

Another child lost to cancer. Another family with broken hearts. Another lost future.

One less beautiful soul in our world. We need beautiful souls.

We cannot wait—children are not like roads that can wait to be repaired. I see our tax dollars regularly appropriated for road repairs and expansions. I am not suggesting that roads are unnecessary, just wondering why this type of funding seems to flow like a river while there are endless “Beaver Dams” blockading the swift flow of funding for critical research that will save children’s lives. We need to prioritize right now because the number one killer of our children is cancer.

It won’t go away by itself. The facts are– it is becoming more prevalent. Most childhood cancers have no known cause. Let’s find a cure; let’s find the cause. Imagine not only a cure, but prevention—whoa!!!

This discovery will not come cheap. I wonder how many will give of their time, give from their hearts, their wallets and their guts to be able to one day be certain that not one more child will suffer as Noah has.

It’s time for all of us to put on the fighting gloves and fully fuel up. The Monster is getting bigger, meaner, and stronger– and it is making me really, really mad.

Anyone ticked off? Want to do something about it?

Please pray for Noah’s family.

Please remember there are 40,000 children fighting cancer in our country right now. Please know that they need us. Over 200 children were diagnosed with cancer in the United States this past week, and this statistic continues each week that comes and goes.

Every chance you get to give to pediatric cancer research is an opportunity to be a part of the end of the suffering. Every little bit matters… every single bit.

I want, with every speck of my soul, to be a part of ending the suffering.

As of yesterday, a new website launched…  www.melindamarchiano.com

Please direct people who want to buy my book to this site…

*** We (Happy Quail) chose a merchant processor with a Give Back program to benefit Children’s Miracle Network—Children’s Miracle Network Hospitals are where the vast majority of childhood cancer patients receive their care.

*** Each month, we will choose a different childhood cancer organization to donate proceeds to. The first foundation we have chosen is Braden’s Hope For Childhood Cancer.

*** If you would like your book signed, I would love to…

Now, I need to thank each of you that are doing your part. I realize that sometimes it seems like we are all trying to make it across a violent sea with a row-boat and only one oar… but please, please keep doing what you are doing.

46 Mommas & St. Baldricks—please keep shaving

Alex’s Lemonade—please keep selling that lemonade

CureSearch—please keep walking

Others… you know who you are… please keep on.

Let’s keep inspiring and motivating each other. It makes us stronger. The love we share among us is creating a cohesive bond of hope.

Where there is love, there is hope.

Hope… for each child… every single one is precious. Every one. Oh gosh… do we need hope!

People of Kansas and Missouri… I have been blessed to meet you!

Braden and HOPE!

Advertisements

Logjam

Grace: A Child's Intimate Journey Through Cancer and Recovery

When I miss communicating with you for a few days, I get all messed up. It’s like all of the things I want to share with you get plugged up like logs in a logjam. Then, in order to share my “logs” in an orderly fashion, I have to straighten them out of their tangle before they will proceed with any recognizable order.

Let’s see… Log #1 out of the gate…

Did you hear that Lance Armstrong has retired from professional cycling to dedicate his focus to fighting cancer? Most of you know how much I admire Lance and how much he inspired me during my treatment and recovery. I have seen stories in the news recently of Lance visiting children’s hospitals… can you guess where I am going with this? I sure would love to see LIVESTRONG expand their STRONG ARM in order to devote more of their efforts to combating childhood cancer. I think it’s great that they have the very unique LIVESTRONG at School where teachers can download age-appropriate materials to help their students learn about cancer. Did I tell you that I applied last month to be a LIVESTRONG Leader? Giggles… I forewarned them that I would be “infiltrating for the advancement LIVESTRONG’s childhood cancer subdivision!”

Log #2… untangling…

My mom and I have been working with a great guy, Benn, who is designing a new website for me where people can buy Grace: A Child’s Intimate Journey Through Cancer and Recovery. The site is www.melindamarchiano.com

Log #3… straightening…

We did some research before we chose a merchant processing system and we are very excited to tell you that we decided on a Give Back program that benefits Children’s Miracle Network Hospitals. Cottage Hospital is a Children’s Miracle Network Hospital and the people there saved my life… we love this choice!

Most importantly of all, I am thinking of and praying for all of the children who are fighting cancer and recovering from cancer today. I am thinking of the families who love their little warriors and who would go to any lengths to help them in any way. I am thinking of those brothers and sisters whose hearts are crushed by the site of suffering.

And for the moms and the dads who keep pouring out your love… till it can only come out in a drip… may God bless you and fill you up to the top again with His Living Water.

Prayers for Savannah

 

Tommy Hilfinger and Alex Garfield PSA

It makes me happy to see that many people are reading my blog.  This isn’t because I have a secret ambition to be Master Blogger of the Universe, but because it means people are learning more about childhood cancer. I know I’ve been a little tough on you lately, expecting you to click “Likes” on Facebook pages and sign petitions and take surveys. I am really, really grateful for your participation!

Today, I will just do a little reporting and give you a tiny break till tomorrow:)

Fashion has never been one of my interests, but it just became an interest when I saw what Tommy Hilfiger and Alex Garfield have done to help raise funds for childhood cancer research– it’s called “Connor’s Heroes.”

http://www.youtube.com/watch?v=re17LbQtH4k

When I ask, “Is anybody out there,” I hear Tommy and Alex say, “Me!”

There is one other person to tell you about. I met a beautiful woman named Katya last Saturday at the Children’s Miracle Network event who had painstakingly, lovingly, and artistically created a work of needlepoint that she donated for the live auction. I cannot even imagine the time and energy she devoted to this brilliant artwork, and I imagine that it must have been very difficult to part with it. Whenever we put our heart and soul into something we make, it seems like it becomes a part of us. She must have felt like she was giving a piece of herself. Well, it is people like Katya– who give from their souls– who have made it possible for me to be living and breathing today. That she would care about sick children who are complete strangers is something we can all aspire to. That she would give such a big piece of herself… this will make me a better person.

If you would like to see her blog and photos of her incredible needlework:

http://astitchingtime.blogspot.com/2010/09/rancho-vino-event.html

Thank you Katya, Tommy, and Alex…

Children’s Miracle Network Telethon

Today and tomorrow, the Children’s Miracle Network Telethon is going to be broadcast nationwide. The hospital where I was treated, Cottage Hospital, is a Children’s Miracle Network hospital. You can imagine why this cause is so dear to my heart. Money donated to Children’s Miracle Network goes to your local Children’s Miracle Network hospital. I am extremely grateful for the care I received and that Cottage Hospital has the staff, the equipment, and the facilities to give their patients the best health care possible.

You may not think that $5 or $10 is much of a donation, but imagine 500 people giving $10! It will add up and every single donation makes a difference.

If you live in the Santa Barbara area, my Children’s Miracle Network vignette will play tonight between 9:30 and 9:46 and tomorrow between 3:46 and 4:00 on KEYT Channel 3. Thank you for considering supporting your local Children’s Miracle Network hospital!

Tag Cloud