A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Alex’s Lemonade Stand’

National Siblings Day — Alex’s Lemonade Stand and SuperSibs!

 

Phoenix Children's Hospital, Make-A-Wish Hope Tour

Phoenix Children’s Hospital, Make-A-Wish Hope Tour

Today, April 10th, is National Siblings Day. This annual celebration honors the relationships of brothers and sisters. Although Siblings Day is not recognized federally like Father’s Day and Mother’s Day, 39 of our states have official proclamations recognizing Siblings Day. Claudia Evart created the concept for the holiday in 1997, to honor the memory of her sister and brother.

Siblings of kids with cancer have an enormous burden upon them. They live with fear of losing their brother or sister. They watch their sibling suffer in ways that children should never have to witness. They step to the background so their parents can attend to life-threatening issues and provide care  that steals all of their time. They continue with their so-called “normal” life while their sibling and at least one parent are away at the hospital. They try their best to bring joy to their family when their family is falling apart. They sit with their ill sibling just to be with them. To any sick child, this is the greatest of all gifts… time. These kids are SUPER!

Today, Alex’s Lemonade Stand announced it will be working with the organization SuperSibs! in the near future, to provide support for siblings of children fighting cancer.

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From April 2014 Newsletter from Alex’s Lemonade Stand:

“ALSF is going to join forces SuperSibs!, an organization that has worked to support siblings of children with cancer since 2002. SuperSibs! was established when Melanie Goldish’s older son was diagnosed with leukemia, and she was unable to find support services as her younger son struggled to cope. Goldish hoped to fill that void, creating SuperSibs! to focus on the well-being of siblings who may experience fear and isolation as their brother or sister fights childhood cancer.”

To view this new program on their website: www.AlexsLemonade.org/supersibs   

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Today on Twitter, Beads of Courage tweeted a photo of their Sibling Program Guide for kids at Phoenix Children’s Hospital.

https://twitter.com/beadsofcourage/status/454390377772875776/photo/1

Embedded image permalink

Tweet: “This is the Sibling Program Guide for kids at @PhxChildrens with a brother or sister in the @beadsofcourage program.”

Do you know a sibling of a childhood cancer patient? They need us. They need our time. We need to show them they are extremely important. Thank you to Alex’s Lemonade Stand, SuperSibs!, Beads of Courage, and all of you out there taking care of the kids who are taking care of siblings fighting childhood cancer.

Go SuperSib Zach Hofen….. Z-Force!!!

 

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What A Gift to the World

This is International Childhood Cancer Day, a day we can learn to expand our focus on childhood cancer to include not just children in our own country, but throughout the world. For me, the problems of late diagnoses, toxic treatments, late effects, shortages of medicines, and a dire lack of development of new, more effective—less invasive—treatments keep me focused on all we need to do as a country.  We have so much to do. This should not be discouraging, but encouraging. Be encouraged there is a growing army of people who know The Truth about childhood cancer. Be encouraged by becoming an individual who does their part. One way to do your part is to let our elected officials know that childhood cancer research is a top priority.

St. Baldrick’s Foundation has made it easy—like, really, really easy to contact your representatives.

Go ahead…. it takes just a few minutes, and you will know you did something to help!

 http://www.capwiz.com/stbaldricks/issues/alert/?alertid=62399601

 Did you do it yet???

 Please don’t read on until you do!

 If you would like to learn more about World Child Cancer:

 http://www.worldchildcancer.org/who-we-are/our-latest-news/

 One way that we will be able to better treat children with cancer in the future is to gather data on childhood cancer survivors. Alex’s Lemonade Stand is doing just this. If you are a survivor, or your child is, you have an opportunity to provide vital information that will help researchers develop better treatments for kids who come along after us.

Please take the time to help Alex’s Lemonade Stand in this very important mission and pass this link on to others who might be willing to help.

 http://www.alexslemonade.org/treatment-journal

When we do discover those new treatments for more cures…

what a gift we will have to give the world!

We totally fell in love with Kaiden!

 What we really need, and really want, is an end to this…

“( ) passed away on January 25, 2011 from a glioblastoma multiforme brain tumor. He fought cancer for 3 years and 7 months. He was known for his compassion and kindness. He was once asked, “What would be the greatest super power that a person could have?” Ben’s response was simple, but powerful – “Forgiveness.”” 
“Even though he is nearing the end of his earthly life, he hangs on for the love of his family. Please keep them in your prayers and thoughts. No one parent should be in this position. No child should have to fight to live and especially not for 5 years, only for modern medicine to have still failed him. We Need A Cure! Too many families, too many children- It doesn’t make sense”
“Surgeon just came out for a break ( ) is doing great. Her tumors were a lot worse than they thought but praise God she has been able to remove the most difficult ones so far. The vascular surgeon is in there now reconstructing her iliac artery. She will finish removing the rest of the tumors and then reconstruct her ureters. Then she will apply the hot chemo wash to her entire abdominal cavity.”
 

Pediatric Cancer Research Revolution

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

I bring you updates on Lane Goodwin today. From Lane’s mom:

 Prayers for Lane Goodwin

“Oh My heart is smiling! I got to see my sweet boy walk! He demanded to go to the bathroom so we picked him up & took him in the wheel chair. He then demanded to walk & did with assistance on 2 occasions!! He says he is in no pain & is currently only on seizure & anti-nausea meds. I noticed him just starring at the ceiling. I asked what he was doing & he said “God is showing me my past.” We continue to pray for a miracle & also continue to reassure him if God says it’s time to go home that it’s ok to go. We are completely in shock about how many people are praying, loving & following our sweet boy’s journey. Thumbs up for Lane is absolutely unbelievable!! We told Lane about all the people, professional athletes, news channels, schools, celebrity’s, radio stations across the country that are posting Thumbs up pictures & he smiled the biggest smile 🙂 Thank you to everyone for loving our family!”
 Lane’s spirit has touched many people– so many that Thumbs Up for Lane is becoming big news!

Story on MSNBC

http://www.msnbc.msn.com/id/49105190/ns/local_news-louisville_ky/t/viral-campaign-gives-boy-fighting-cancer-thumbs/#.UFutAY2uaSo
 The unimaginable hardship and gut-wrenching pain that these families endure has to stop. Our world lost a beautiful soul to childhood cancer recently, in Taylor Filorimo. “Pray for Tay” was the motto while she fought so bravely. Tay’s mom, Maria, continues the fight against childhood cancer with a new motto, “Live for Tay.”

 Maria Coleman Filorimo, Tay’s mom:

 “I promised you “My Voice” will never Go Away. YOUR GOLD Project will be known by All, We will bring Awareness, I LOVE YOU.”

 “It’s not just Riverdale.” Tay, “You are the destiny of change.”

 http://www.dnj.com/videonetwork/1828225843001/Maria-Filorimo-talks-about-her-daughter?fb_action_ids=4321123873658&fb_action_types=og.recommends&fb_ref=videoplayer&fb_source=aggregation&fb_aggregation_id=246965925417366

My friends at Alex’s Lemonade Stand Foundation asked me to share this link for childhood cancer patients. This is a very helpful tool—please check it out!

From Alex’s Lemonade Stand

 https://www.childhoodcancerjournal.com/

 I also want to share this link from Alex’s Lemonade Stand Foundation about the recent Childhood Cancer Symposium in Washington, D.C.

 News from the Childhood Cancer Symposium Via Alex’s Lemonade Stand Foundation

 http://www.alexslemonade.org/campaign/symposium-childhood-cancer/2012-resources

 One more bit of great news from Alex’s Lemonade Stand Foundation by way of PAC2:

“Our annual kudos to our friends at Alex’s Lemonade Stand Foundation for another round of Bridge & Springboard Grants. Bridge Grants are intended to keep scientist’s projects on track while they reapply for NIH funding to ensure novel childhood cancer research projects are not compromised. Springboard Grants are in response to cut-backs in NIH funding of new applications. The Springboard Grant is designed to jump-start new projects with high impact potential for childhood cancer research while other funding is sought.”

 http://www.alexslemonade.org/grants/bridge-grants

 While I am sharing, this WONDERFUL photo came to me via Twitter:

AnnaBell

pic.twitter.com/8EMXrBN

Dear God, I don’t want to puke.   Love, Bree

 Finally, I would like to share this…

The Truth 365 Day 7 Preview Laura Thrall President and CEO CureSearch

http://www.youtube.com/watch?v=rXil2qnMFkM&feature=youtu.be

Did I hear Laura Thrall say, “We are not competing?”

“We are not in competition, we are in cooperation.”

https://gracemelinda.com/2012/09/18/were-not-in-competition-were-in-co-operation/

(Is there an echo in here???!)

Aggregating for Efficiency…

I will call this the

Pediatric Cancer Research Revolution

September Childhood Cancer Awareness Month

Wait a Minute… I AM Somebody!

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

“I wondered why somebody didn’t do something. Then, I realized I am somebody.”

~Author Unknown

One of the most disturbing facts surrounding childhood cancer is the lack of development of new therapies over the past couple of decades. Yes, I mean decades. While a multitude of technological advances, ahem– such as the worldwide web—have seen an explosion of growth, the treatment of childhood cancers is burdened with shortages (methotrexate) and the absence of new therapies. The bottom line here seems to be money. Producing drugs that are needed to fight childhood cancer is not profitable. The factories and labs that were in top shape in the 1970’s are now run-down and outdated.

It’s easy for all of us to think that the economy is bad, or childhood cancer will never affect me, or believe someone else will step in to take care of it all.

The Bottom Bottom Line is we need to act now to provide a life insurance policy for our children of the future.  If money for research is what it takes, then we need to show our care for children by taking responsibility for developing new targeted therapies. Imagine a vaccine that prevents cancer. Imagine.

The truth is we do not even know what causes childhood cancer.

Shouldn’t every one of us want to know what causes it? Every day brings newly diagnosed children, and every day brings death. I want to thank Amy Baldwin and Jordan Smith for allowing me to use Jordan’s photo collage in my post yesterday. Of sixty-six children in the collage, twenty-six children have passed. One third.

Supporting Alex’s Lemonade Stand, CureSearch, and St. Baldrick’s will help us find cures for childhood cancer faster. This is a race, and this is war. I want all of us to be the Navy Seals who put an end to the tortuous reign of childhood cancer.

Your “Navy Seal” opportunities of the day:

Hold a lemonade stand to raise money for Alex’s Lemonade Stand & pediatric cancer research

If you enjoy walking, join the CureSearch Walk in Raleigh N.C.:

Or… give to St. Baldrick’s in memory/honor of a child who has fought cancer… for example, Ethan Jostad

I see two choices here.

1) Be ostriches with our heads buried in the sand (scared you, didn’t I?)

2) Believe, “I am Somebody” and act accordingly.

What a smile, Ethan!

Gold Ribbons

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

September is Childhood Cancer Awareness Month.  It has been officially declared by President Obama over a year ago.

http://www.whitehouse.gov/the-press-office/2010/09/10/presidential-proclamation-childhood-cancer-awareness-month

I have yet to see a single Gold Ribbon in a public place this entire month.

We are tragically unaware.

I am not suggesting Gold Ribbons will cure childhood cancer; I am wondering why there are no Gold Ribbons.

What crawls up the back of my spine is that I know that lack of public knowledge about childhood cancer is costing lives.

Costing children’s lives….

To me this means war.

And so, from my own little corner of this World, I write, speak, raise money, and journey in HopeMobiles.  I know that my contribution to the war is a little drop in the bucket.  I also know that I am not alone. I love knowing others who have joined to help the kids in many different ways.  I want to thank you, everyone, for all you are doing. I need to give you one great big group hug right now!

Can you breathe???????

So, little itty bitty Melinda will keep doing my MelindaThing and please, everyone else keep doing your Thing too!

Maybe next year, we will see Gold Ribbons.

Gold Ribbons are great; the real victory will be a cure.

Children's Mercy Hospital

 The more we join together, the faster we will get there…

Directory of childhood cancer organizations

http://curechildhoodcancer.ning.com//page/childhood-cancer-directory

Alex’s Lemonade Database Project

http://www.mychildhoodcancer.org/?LQID=1&origin=facebook

46 Mommas Shave for the Brave at Union Station

http://www.stbaldricks.org/events/46mommas2011

The Truth Is, It Takes Sacrifice

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

“A man never stands as tall as when he kneels to help a child.” ~ Abraham Lincoln

 “If our American way of life fails the child, it fails us all. ~Pearl S. Buck

“Children are one third of our population and all of our future.”  ~Select Panel for the Promotion of Child Health, 1981

“Children are the world’s most valuable resource and its best hope for the future.” ~John Fitzgerald Kennedy

“It is easier to build strong children than to repair broken men.” ~ Frederick Douglass

In recognizing this month of September as Childhood Cancer Awareness Month, I am happy to share these quotes about children.  Today, and every day (believe me!!!!!) I want to give an outpouring of loving thanks to the people who work with and treat childhood cancer patients.  I have heard people say over and over again, “How can anyone do that… work with very sick children?” Right now, at this very moment, I want to express my sincere gratitude to everyone who “is able” to work with sick kids. Thank you for choosing the path you have chosen so that I – and many other children—are able to be here today.

I want to personally thank Dr. Dan, Dr. Gonzalez, Dr. A., Dr. Keshen, Dr. Pickert, and the entire staff at Cottage Hospital.

When I imagine the sacrifice it takes, not only to achieve the needed education, but to live each day with the great emotional impact of their occupations, my respect and admiration grows for everyone who has stepped into the “ring” of fighting childhood cancer.  What would we do if no one sacrificed?

The quotes above remind us that “our” children are more than worth sacrificing for. Giving now to help stop childhood cancer will certainly act as an “Insurance Policy” for our children in the future. You don’t need to get a medical degree, or work in a hospital, or even work with sick children… we all have something to give. 

Sharing from Max’s Facebook page:

600 CHILDREN get DX with cANCER a day 365 days a year. 200 children die from it each day 365 days a year. Is your child safe? $$ = Protection for children. Please buy a policy from www.curesearch.orgwww.stbaldricks.org orwww.alexslemonade.org and treat your children’s future like you would your auto. Are your Children’s future in good hands? No restrictions apply, valid worldwide. STOP CHILDHOOD cANCER!

“The child must know that he is a miracle, that since the beginning of the world there hasn’t been, and until the end of the world there will not be, another child like him.” ~ Pablo Casals

46-7 Stop Childhood cancer

 

The Child First and Always

Wheeeeeeeeeeeeeeeeew!

After nearly 7,000 miles, visits to 15 children’s hospitals, cancer centers, and childhood cancer research labs, I am overflowing with HOPE. Our visit today to Primary Children’s Hospital/Huntsman Cancer Institute in Utah was our final visit. Here, I had the unique opportunity to speak to a room filled with patients, hospital staff, and physicians. I want to thank Elaine Pollock and Dr. Josh Schiffman for their help and support to make this incredible day possible. Having this time to share my story and offer personal insights on how we can better help children fighting cancer makes my heart fill to the top. Being able to tour Dr. Josh’s lab, having him show me the research he is working on, and hearing his perspective on how we can stop childhood cancer by preventing it through genetic studies makes my heart leap to the point of skipping beats! I absolutely love how he believes research begins with the patient and then moves to the lab, rather than the other way around. I need to thank Alex’s Lemonade Stand for believing in the work he is doing– for the research grant they have provided for his studies. At the same time, I want to encourage other childhood cancer foundations, corporations, and individuals with bulging wallets to consider supporting his work. 

Finally, I need to encourage people who truly care about stopping childhood cancer to give as generously as they can. Research costs money– plain and simple. Research like Dr. Josh is doing will cure childhood cancer by preventing it in the first place.

What a remarkable goal. 

Let’s believe. Let’s give. 

It’s all about loving the children. As the sign outside Primary Children’s states boldly…

“The Child First and Always”

 

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