A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Isaiah Alonso Foundation’

Skipping and Squealing with Squeaky Shoes On

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

 

 

“Snowflakes are one of nature’s most fragile things, but just look at what they can do when they stick together.”

Unknown 

 

 

Something that never ceases to amaze me, with the more I learn about the children and families affected directly by childhood cancer, is the sheer multitude of them who become passionately involved in ending the suffering of children with cancer. This alone speaks volumes. My heart breaks for the families who no longer have their child by their sides. And here they are, fighting for our kids of the future… making sure that no child has to face what their child faced.

If people could see how hard they are working, or even feel a glimpse of their pain and loss, all of humanity would step up as an enormous support system to help them in their mission– and to honor and recognize the bravery of their childhood cancer heroes. 

At the very top of our “To Do List,” as a World, Country, and as People, is to help fight for the children who have no voice. Children fighting cancer are too busy fighting to have a voice, and too young to articulate their needs to the adult world. Somehow, these kids make the world brighter, even though their own world is falling apart. I want to recognize them and honor them. I saw a little girl and boy skipping and squealing through a store with their Squeaky Shoes on, and I thought…

“That’s what I want for all kids.” 

If you want this for all kids, there are many things you can do to help get rid of the Childhood Cancer Monster. 

Alexa Nawrocki 

My mom and I had the honor and great pleasure of meeting Joann Nawrocki of Alexa’s Foundation during the Hope Tour of Summer 2011. Alexa lost her battle to cancer, but Joann has worked tirelessly to bring Alexa’s love and light to other children fighting cancer. We love you Alexa! We love you Joann!

Joann Nawrocki
Alexa Nawrocki Pediatric Cancer Foundation

Someone else Mom and I had the honor of meeting during that time is Ali McDonough, and her father, Joe. Please vote for Ali McDonough B+ Foundation. She is up for an award, and she really, really has earned it. After the loss of her brother, Andrew, she has turned her loss into hope for children with cancer. Thank you Ali!

http://www.nascar.com/promos/bettyjanefrance/vote/thank_you.html

Please take a moment to vote for Ali– B+Foundation!

Another way you can support these families and honor the children…

The Isaiah Alonso Foundation Chase Community Giving and Ethan Jostad Foundation

(You can vote for two! Just a moment of your time!)

https://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=ein|38-3818833

https://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=location|/charity/view/ein/45-3049472

If you have not seen them yet, here are the first two previews for The Truth 365

Day one Preview of TheTruth 365

http://www.youtube.com/watch?v=URnulziqMNA&feature=plcp

The Truth 365 Day 2 Preview Campaign

http://www.youtube.com/watch?v=djGaTAlfrXE&feature=youtu.be

This includes The Truth 365 Interview with Talia… before she knew her dream to meet Ellen would come true!

One more thing I want to share with you today is the inspiring story of childhood cancer survivor, Sabrina Cannella.

http://www.yorkregion.com/news/article/1502520–people-we-love-sabrina-cannella#.UFO__k_ooO8.mailto

I am in awe of what families and survivors are doing for our kids of the future. I imagine what can happen with the support of our communities, businesses, and government. I know there can be a day when all kids can skip and squeal, with their greatest care at that moment being that their shoes light up and squeak.

 

 

 

 

 

 

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Life is one Breath Away From Death

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

“The whole of life is but a moment of time. It is our duty, therefore, to use it, not to misuse it.”

~Plutarch

This quote has extra special meaning to me right now, as I squeeze every drop of time from each day. I love knowing that “the whole of life” is “but a moment of time.” If we could see our lives as a whole more often, I believe mankind would include many more people of action. Something about the pace of our lives makes us view it all too often through the Zoom In Button. We see the teeny-tiny picture, but have no clue where it fits into the great scope of life.

When we hit the Zoom Out Button, the Grand Scope of Humanity comes into focus. We are able to see past the dirty laundry pile, into the external world that is calling for our help. From that external world is where I hear children’s voices calling to me. When I look to see who is calling, I hesitate knowing there is someone in need. Will I be able to help? What if the problem is way too big for me to handle? What if I allow this calling to change me? What if try my best to make a difference and fail?

“The fact is, that to do anything in the world worth doing, we must not stand back shivering and shaking at the cold and danger, but jump in and scramble through as well as we can.

~Robert Cushing

Action. What we need in order to stop childhood cancer is action. We need not be concerned about what is the right way or wrong way—just to make a way. I agree with Robert Cushing; it’s okay if we “jump in and scramble through as well as we can.” Even though finding a cure for cancer seems like an enormous and out-of-reach goal, we all better jump in and start “swimming” toward the goal of raising money for research that will lead to a cure.

Oh yes, there will be those who shake their heads and wonder why you would ever “waste your time” working toward a goal that is unattainable. There will be those who wonder why you have chosen what you have chosen to do to be of help. There will be those who scoff and snort and mumble when they see you working hard for a cause.

“Great spirits have always encountered violent opposition from mediocre minds.”

~Albert Einstein

But then…

There are people who dream big and work hard to create reality out of their vision. May I please introduce you to someone I learned of this past week?

The Andrea Rizzo Foundation (@DreasDream on Twitter)

http://www.takepart.com/photos/exclusive-carrie-ann-inaba-use-her-dance-skills-inspire-kids-cancer

Andreas dream and spirit live on through the joy children receive from this foundation.

I leave you with two opportunities for Childhood Cancer Advocacy with only a click…

Yes, if you click, it means you are a person of action!

Journey for a Cure— Ipads to cancer kids in the hospital

http://pep.si/rN6Mjf

Wet Will-E Water Balloons on Facebook

Please like this page and type “Isaiah Alonso Foundation Please!”

https://www.facebook.com/wetwillewaterballoons

Each one of us needs to become a person of action. If we recognize our lives as the gifts that they truly are, we become people who use, rather than misuse, our lives.

Life really is one breath away from death.

Thank you Anna! I agree!

Mission Possible

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

Your mission, should you choose to accept it, is to click to help make this happen…

The Isaiah Alonso Foundation has been nominated to win a free brand makeover, ad campaign and website, provided by advertising agency Chimpanzee.  https://www.facebook.com/chimpmybrand

Voting runs until midnight EST on September 30th. Every single vote really matters!

 

https://www.facebook.com/questions/10150294239110172/

Please vote. It will only take a minute of your time.

There are many others who are dedicating their lives; I know we can take the time for a little clicky-poo to help The Isaiah Alsonso Foundation. Did you know that one of the 46 Mommas is Cheryl Alonso, Isaiah’s mommy?

                                                                                                                                                                                          Mrs. Jodie Nunn is someone I look up to and admire.  She has taught me  things about life… and I have never even met her. Jodie and her family      make me look for how I can do more to help stop childhood cancer. If  more of us become just a bit more like the Nunn’s, the Mission to stop  childhood cancer is certainly possible.

 Ms Cheryl, Ms Jodie, and all of the 46 Mommas make me know we can all  do more. We can all give more. 

 Yes… until there is not a speck of hair on our heads… if that is what is  takes.

 From Mr. Tom Nunn to his beautiful wife (and 46 Momma) Jodie:

 “I look up to Max‘s Momma more today than I thought was possible. I  am so sorry Jodie that you had to do today what you wanted to do that  I wish no Momma will ever have to do again some day. You made Lilly  and I so very proud and added even more meaning to Max’s life and  legacy than I ever imagined possible. I still hurt the same as you do too  but we have taken one more step forward to ending the monster                           little c.                  I Love You Jodie.”

 

46 Momma Jodie Nunn

Millions of Mini-Lights

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

Amid the turmoil and chaos that is childhood cancer there are millions of mini-lights. By mini-lights, I mean moments of intense joy and happiness. Today, I am so happy, I feel like the lights are more like a beacon!

Happy 7th Birthday Braden!

My buddy, Braden Hofen, turned seven years old today.  Not one of us can come close to imagining the battle he has been through. Braden may be only seven years old, but I look up to him. He helps me be who I want to be and who I need to be.  It’s easy to get our thoughts twisted around by the routine of living our daily lives—and then—someone brings us back to reality. Braden has taught me about reality, about loving, and about courage.

Today, Big Bear, as your adorable mom, Deliece calls you… I send you HUGE Big Bear Hugs.  Please hold onto them because I will be coming to collect them soon.

I want to share with you all of you the elation and joy we feel along with Braden’s mom on this day that many believed would never come… 

Deliece shared these feelings today:

*** So today is all about celebration and happiness!  Today is a day that I’m wearing my HOPE shirt and shouting “TAKE THAT cANCER” as loud and long and to as many people as I can!!  TAKE THAT cANCER!!! You DID NOT get today!! Braden wins this one!!!!

*** Thank you LORD for this day…truly a miracle! I was driving home from Price Chopper where I picked up his John Deere cake for his friends party tomorrow and was smiling and laughing so much I was bawling and had to pull over to get it together! Happy through my entire SOUL! Thank you Lord, thank you!!

Does anyone have any Kleenex nearby? Why is it that tears of joy feel so good?

Braden’s victories makes me want to work harder so that the day we find a cure will be closer. If we all work as hard as Braden has to fight cancer, I don’t see how the illusive cure cannot be right around the next corner. If Braden  can work this hard– remember he is still a kid–what excuse can we possibly have as healthy adults not to do all we can to stop childhood cancer?

Braden, lead the way my little buddy…

Braden’s Hope for Childhood Cancer

Happy Seventh Birthday Braden!

Isaiah Alonso Foundation asks us to “Like” this page:

Please “like” this page. LaFontaine Hyundai will donate $1 to childhood cancer research through Hyundai Hope on Wheels for every like!

https://www.facebook.com/LaFontaineHyundai?sk=wall

 

Dear Mr. or Ms. BIG NAME Fashion Designer

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

I am sitting here in my soft, long-sleeved, pink “Team Max” shirt and ideas are bouncing around in my brainola like ping-pong balls. I love my Team Max shirt! I love not only its softness, but most of all that I am able to raise awareness of childhood cancer every time I wear it. I even have the opportunity to answer people when they ask, “Who is Max?” This is my very favorite part; I love having the chance to tell people about one of my biggest heroes. Max set a goal of raising $100,000 for St. Baldrick’s and pediatric cancer research, inspiring multitudes to give with his motto, “Two bucks, I mean it!” At only seven years old, Max knew all about giving and helping others. Last Thanksgiving Day, Max’s family learned the pain of saying good-bye to him. They are now carrying on Max’s mission to raise money for pediatric cancer research, and I have no doubt they will surpass Max’s goal.

Now for the “Bouncing Brainola” part…

I admit that I am “fashion challenged,” and have little knowledge of “what is hot.” Those name brands that have sky-high price tags just because they have a Hot Fashion Name puzzle me.

What if…

What if Team Max, Braden’s Hope for Childhood Cancer, B+Foundation (“It’s not a grade, it’s an attitude!”) Alexa’s Pediatric Cancer Foundation, Arms Wide Open, Isaiah Alonso Foundation, et al suddenly became popular high fashion? What if everyone suddenly needed fashion gear that not only covers their body and keeps them warm, but it fights childhood cancer every time it is purchased?

Maybe there is someone in the Hot Fashion Designer Name business who would like to give their name to help raise money for childhood cancer– just by lending their name, their brand.

Like I admitted before, I am fashion challenged; my knowledge in this area is slim to none. Please Mr. or Mrs. Fashion Designer with a BIG NAME, step forward into the light so I may see you and welcome you to the most noble of worlds you can live in… the world of helping children in great need.

Max, Mighty Leader and my Hero

 

 

 

 

 

 

 

 

TwitterLand People, please copy, tweet this, and vote to help raise money for Isaiah Alonso Foundation!

Pls RT & vote #kidsmatter 50k from #pepsirefresh http://t.co/P6M3zFg @The_IAF is #kickasscause@socialvest!

 

 

 

 

 

 

Even if our Wallets are Empty

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

I haven’t written much about Twitter since the Twitter Police nearly nabbed me almost a year ago. I was busily tweeting childhood cancer “please help us” tweets when @1ballerina (me!) received a TweetWarning from someone who believed I was Spamming; he threatened to “report me.”

Since then, I have been behaving myself on Twitter, even though I never did find a Twitter Manual to describe to me in detail what is okay and what is not okay. I have met some incredible people through Twitter, and I just never know who or what will be the next surprise. (Happily, I don’t receive Twitter Police threats anymore!)

One wonderful surprise this week, was meeting @AFreeBirdOrg  They describe on their website what they do to help children with cancer—

“Our mission is to empower each bird to fly free.”

A Free Bird aims to provide the opportunity for children diagnosed with cancer to continue to explore their artistic passion, and to give them the strength and power to fight their disease.”

I am grateful for people/organizations that recognize this kind of need and then act upon it! I hope that by sharing my story on http://www.AFreeBird.info that people will understand how crucial it is for children fighting cancer to be able to continue their artistic passions because it truly helps bring healing.

http://afreebirdorganization.tumblr.com/post/8888955643/melindamarchiano

Speaking of Twitter and ways you can help fight childhood cancer by giving just a speck of your time, please tweet this to help raise money for Isaiah Alonso Foundation:

 @The_IAF and @SocialVest for #kickasscause NOW! We can win $ for #childhoodcancer. Please RT!

(Just copy the whole thing, paste it in your What’s Happening Window, and tweet!)

One more Click-of-A-Button way for you to be an advocate for childhood cancer this very day is to vote here for Journey for a Cure:

 http://www.vivint.com/givesbackproject/charity/1262?state=1842d89f75e0db34bd61e511d9b7efd0&code=AQAa8EkA-d9fBg-oXgy86KiGgOcmSU0-ODhjEdU-tjhoHikbMHzT8KoEVqdGMVLzUb9hBw8px2hT_Gr_M5EOW0sITXrEwoxzbvt9kl86yuswNDt501xXuI987DLaF69l2gux5lIrWCCyVLWDL9Z18MhKJNIr2dCgppd_FfGkbqvXEQrm4O34bcGoBScIMEKhG0S_8zZxG59dO2MDTvfDvady

Finally, I want to thank Mr. Tom Nunn for his great idea of asking everyone to pass on a childhood cancer story…

There are so many ways we can be childhood cancer advocates, even if our wallets are empty.

I loved this special doorway for kids at Dell Children's Hospital!

Calling All Heroes

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

As each week flies by faster than the last—especially this time of the year—I need to place many things at the top of my priority To-Do-List.  School is important, dance is extremely important, and one priority that constantly remains critically important to me is raising awareness for childhood cancer.

Keeping my room clean is not so important…

I say this not to ease my guilt as I type these words, but to let you know that rubble can wait… children fighting cancer cannot.  I would love for everyone to see that we don’t have time to mosey around. Please join me today in taking action; please join me in ignoring the messiness of life for a moment to choose to do any or all of the following:

Please click on the link below and vote for the Isaiah Alonso Foundation.  This is seriously easy, my friends!

http://bit.ly/iGuo4m

PAC2, always one of my favorite sources of information, is asking us to contact our elected representatives to help bring increased funding for pediatric cancer research.

http://acurechildhoodcancer.ning.com/forum/topics/pac2-initiative-support

Specific Instructions from PAC2—including contact help links:

“Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) are spearheading a bi-partisan effort to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012.   

 Senator Reed’s office has asked that the community engage our grassroots in supporting this effort.   Specifically,getting advocates to ask their 2 senators to sign-onto the letter.

HOW YOU CAN HELP……..

  1. 1.     Please call your two senators in Washington and ask the receptionist for the email address for the senator’s health care legislative assistant.  Identify yourself as a constituent  when you call.
  2. 2.     If you do not know your senators phone numbers, they can be found here:http://www.senate.gov/general/contact_information/senators_cfm.cfm
  3. 3.     Once you have the legislative aides’ email addresses, please send separate emails to them that contain the attached correspondence (download here) from Senators Reed and Isakson.
  4. 4.     Include a brief note in the text of your emails, that;
  • makes clear you are constituent,
  • conveys why you are involved in the pediatric cancer community,
  • specifically asks the  senator to sign-onto the letter in support of funding for pediatric cancer programs.
  • you reference the attachment from Sen. Reed and Isakson which has all the details the aide will need
  • you close by asking to be kept apprised of the senator’s decision.   Include your home address in your message.
  1. 5.     Please note — This is a letter for senators to sign.  Please do not contact Senator Reed or Isakson’s office and ask that your signature be added to the letter. 
  2. 6.     The deadline for senators to contact Senators Reed and Isakson to sign-onto the letter is June 8th.  Offices will need some lead time to consider this request so please act today!

Thanks!”

Some very exciting news this week came from Alex’s Lemonade Stand with their announcement that Toys R Us has joined them in the fight against pediatric cancer.

http://www.toysrusinc.com/press-room/releases/general/2011/toysrus-inc.-joins-alexs-lemonade-stand-foundation-in-the-fight-against/

This gives me hope that more corporations will awaken to act in very large ways to help stop childhood cancer.  Congratulations to Alex’s Lemonade Stand for this major partnership that will without a doubt save children’s lives.

I think it’s a great thing that Toys R Us cares about children who may be too sick to even play with toys. I admit that I look at many corporations with skepticism about their motives and disgust for their greed. Show me wrong, corporate America, show me wrong! Would you like to line up behind Toys R Us and form a nice, long train that will chug up the childhood cancer hill to a cure?

Get your couplers ready for hook-up!

And what is the reason for all of this effort?

Because stories like the one below are common in the world of childhood cancer. It’s easy to get caught up in foundations and fundraisers, but all of this effort is about each individual child. It’s about the children who have suffered and died. It’s about the children in the midst of their battle. It’s about letting everyone know by our actions that their lives matter.

Let’s change that word “common” to “extinct.”

From a friend…

First and foremost…we have a friend who desperately needs our help.  Our buddy, Santos, is fighting a second relapse of his brain tumor.  They are wishing to do some experimental treatment, BUT insurance will not pay for this treatment.  Without $20,000 to begin, they cannot get him ANY treatment…we all know what that means.  He needs a hero, and my thinking it that all of combined can be heroes to this little boy–we can give him HOPE!  He is a sweetheart and he and Braden had a grand time one day when they came up to the hospital to visit.  Santos and his family are very faithful, softspoken, courageous, warm, loving, and wonderful people–I really can’t say enough good things.  I know there are many things that we all are asked to consider contributing to, but this one could give Santos more time on Earth with his family–I don’t think there’s a greater gift.  PLEASE consider helping and spreading the word to others so they can help–no donation is too small, every dollar counts and helps! Please help us find heroes for Santos—he is most certainly one of ours!  You can make financial donations to:

Industrial State Bank
Att: Santos Arreola Treatment Fund
Account # 130000794872
P.O Box 6007
Kansas City, KS 66106

Perhaps donating two bucks to Santos will be the greatest gift you ever gave yourself.

Calling all heroes…

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