A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘PAC2’

What Childhood Cancer has in Common with Landing on the Moon

IMG_2650We are nine days into September, Childhood Cancer Awareness Month. While I feel thrilled and encouraged by more Gold Lighting victories for childhood cancer awareness, there are times when I realize just how far we have to go before we even come close to becoming societies educated about the number one disease killing our children. One of these times struck me right between the eyes.

I learned, just a day ago, that Neil Armstrong’s daughter, Karen, died of a brain tumor in 1962. Wow.

Given the excitement of this kind of job, why did Armstrong choose to join the space program? Hansen says he isn’t sure, even after all his research, but he pointed to the fact that Neil’s daughter, Karen, died of cancer at the age of two in early 1962. “I think it had a very fundamental effect on Neil’s marriage, on his family, on Neil’s own career,” Hansen said.

“It was only four or five months after his daughter’s death that Armstrong put his name in for astronaut selection. Hansen believes that Armstrong “saw Apollo as a way of refocusing his energies and doing something important, and it was a way for him to really deal with his daughter’s death.”

                                                                ~James R. Hansen, Biographer

Further, I learned that a child who is diagnosed with DIPG—the same type of cancer Karen died from—is treated today with the exact same treatment.

A child diagnosed with DIPG today is treated with the exact same treatment as a child who was diagnosed in 1962!

With the tremendous advances in every area of human life since 1962, it is appalling that this is true.

When Melinda and I were in Washington, D.C. this past June for Childhood Cancer Action Days, we planned extra time to visit museums. Something about seeing the exhibits where people gathered together to stand up for their human rights made me look at the current state of childhood cancer advocacy in a more focused light.

Solving the problems surrounding childhood cancer is not going to happen without a joining together of forces, without establishing specific goals, or without sacrifices. Just like Neil Armstrong refocused, today there are numerous bereaved parents who are “refocusing” their “energies and doing something important.” These parents are heroes. I would love to begin naming a list of them, but I know that is not what they want. They don’t want their names honored; they want their children honored. They want awareness that leads to funding for research that will bring less toxic treatments and cures for childhood cancer.

I won’t name them. History will name them. History will remember them. Your children and your grandchildren, and their grandchildren will have a better life here on Earth because of the sacrifices these heroes are choosing to make today. Someday in the future, I will stand in that same museum and read about these people and the great advances they achieved toward cures for childhood cancer.

The most recent communication I received from PAC2 states exactly where we need to begin to be certain that a child will not be diagnosed with cancer 52 years from now and receive the same treatment as today! After typing “52 years”, I cannot breathe…

Go to the moon challengeFrom: PAC2 https://www.facebook.com/PeopleAgainstChildhoodCancer/photos/a.372700847313.154528.370104237313/10152297179327314/?type=1&theater

#ChildhoodCancerChallenge

#GoToTheMoonChallenge

What childhood cancer has in common with landing on the moon is history. The history of Neil Armstrong’s loss of his precious daughter, Karen, must awaken us. We have been “asleep,” for 52 years while our children have been crying out to us for help. Like Neil Armstrong, we have the opportunity to make history. In order to make history, we must create and carry out specific goals, just like they did in the 1960’s in their quest to land on the moon.

“Actually, with cancer, the end of each day is a goal, and waking up in the morning is a victory.”

 ~Melinda Marchiano, Grace: A Child’s Intimate Journey Through Cancer and Recovery

It’s time to combine all forces on deck. There is not a moment to waste.

History is being made each moment. Take the #ChildhoodCancerChallenge

Commit. Sacrifice. Focus. Act. Adequate funding for childhood cancer research must begin today for quicker cures.

This will be better than any moon landing could ever be! The end of childhood cancer…

Six Year-Old Joseph Maroney one the Today Show 4 -9 -2014

Six Year-Old Joseph Maroney one the Today Show 4 -9 -2014

Guest Blogger: Lee Marchiano

“A Day of Yellow and Gold to Fight Childhood Cancer” Tony and Cole

 

“A Day of Yellow and Gold to Fight Childhood Cancer”

What a world this would be if…

…if we would choose to take care of our children first.

Tony Stoddard is a leader in the world of childhood cancer advocacy, believing our kids deserve the best we can provide. Melinda and I have great respect for this man, his mission, and his brilliant campaign to color our country gold for Childhood Cancer Awareness Month in September. Along with Tony, we honor the memory of his son, Cole.

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“This past September I was mired in grief at the loss of my precious five year old son Cole. He passed away from neuroblastoma cancer on January 20th 2012. I created my page “A Day of Yellow and Gold to Fight Childhood Cancer” to honor the memory of my son Cole and all children who have faced the monster that is Childhood Cancer.
I am determined that we will never go through another September without the gold of Childhood Cancer Awareness shining everywhere. Without awareness childhood cancer will remain underfunded and ignored, leaving many thousands of children to continue to suffer through antiquated treatments and to have less than the best chance to survive this monster. I am unwavering in my attempts to see gold each September on town buildings, on the White House, on the fields of the NFL and MLB, on ribbons worn by celebrities, politicians, and media personalities. I want to see as much gold in September as we see pink in October! Our children need and deserve this!”
                                                                                                                 ~Tony Stoddard, Cole’s Dad

  (From People Against Childhood Cancer (PAC2) website)

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I am not sure where or when the motto, “Women and children first” went out of style. I have a sneaky suspicion it left the moment our nation decided money is paramount. I have suspicions it left because treating children with cancer is not a profitable business, unlike treating adult cancers. I suspect it left because we have lost ourselves in adult selfishness.

Today, I ask you to take a stand with Tony for Cole. Take a stand with Tony for all the children who have fought, have suffered, and have taught us that they are worth every bit of “guts” we need to spill to see they receive a much different future. Tony is right. Without awareness, kids with cancer will continue to be treated with “antiquated treatments,” and funding for research will remain frighteningly low. If you haven’t already, please like Tony’s page to color our country yellow and gold. While you are there, tell him how much you appreciate what he is doing for our children. Tell him his heart and the “guts” he is spilling for our dear children are making a difference. Steer your heart under Tony’s wings and help his mission to end childhood cancer soar!

https://www.facebook.com/yellowandgoldforcole

https://twitter.com/smilesforcole @smilesforcole

Smile, Be Happy (Cole’s Song)

https://www.youtube.com/watch?v=ZSn2WcSo9fc

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Advocacy Opportunity!

Please give a few moments of your time to be an advocate for kids with cancer.

From Kids V Cancer Facebook page today:

#endchildhoodcancer “Please post this pic and put the hashtag #endchildhoodcancer on your status. For every photo shared Hyundai will pledge another $1 to AACR Pediatric Cancer Programs, up to $5,000… as many times possible until Wednesday!”

https://www.facebook.com/kidsvcancer?hc_location=timeline

Can you say "Viral"?

Can you say “Viral”?

 

 

 

                   Ready, set, go!

 

 

 

 

 

Guest Blogger: Lee Marchiano

Melinda will be back soon!

 

 

“Failure Is Not An Option”

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

 

 

 

 

 

 

May the children suffer no more….may parents forever have their children…may all who turn a blind eye and think that this will magically happen by itself have their minds and hearts opened to who will actually propel change- them…us…you…me… ♥ ~Melinda

 

This is an excerpt from PAC2’s interview with Kathleen Ruddy, the Executive Director of the St. Baldrick’s Foundation.  This year, St. Baldrick’s has raised over $32 million dollars for pediatric cancer research. I cannot mention fundraising and St. Baldrick’s without giving a huge shout-out to ladies I love with all my heart, the 46 Mommas. I love how Kathleen Ruddy compares the mission of winning the “war” on childhood cancer to previous U.S. ambitious missions, like going to the moon…

In 1961, when President Kennedy challenged America to send a man safely to the moon and back by the end of the decade, he didn’t say, “but only if we stay within a certain budget.”  The goal was the moon, and the reason to shoot for the moon was to expand human knowledge, extend man’s exploration, and advance science.  He also acknowledged it would be hard and expensive.  We have no less ambitious a mission, and probably a more difficult one.  It’s also more precious as our children’s lives depend upon it and with them, our future.  

The notion of shared sacrifice is something our organization was built upon.  The World War II generation understood that each citizen must work and sacrifice together to achieve victory.  Our country came together again to win the space race.  It’s time we pull together again to finally win the war on cancer, and ensure that children fighting cancer not only survive, but thrive. 

This excerpt makes me think of a lot, including my brother Nicholas. When he was ten years old, someone asked Nicholas what his favorite movie was.

He quickly answered, “Apollo 13.”

(Yes, the person’s jaw dropped as he pondered the uniqueness of this ten-year-old’s choice in movies!)

 My brain dinged and chimed with quotes from Apollo 13 as they spun like pin-balls and connected to the world of childhood cancer…

 ***Funding for pediatric cancer research is critically low. Children have NO VOICE.

 “Houston, we have a problem.” ~Jim Lovell

 ***Far, far too many children are being tortured and taken away…

 “So long Earth. Catch you on the flip side.” ~Jack Swigert

***Kathleen Ruddy is correct. If our country will pull together with meaning, purpose, focus, and sacrifice, we can win the war against childhood cancer.

“With all due respect sir, I believe this is gonna be our finest hour.” ~Gene Krantz

***With seven children dying each day from cancer in the United States, it absolutely must be time—right now—to pour money, time, sweat, and guts into ending childhood cancer. We must treat this reality with the urgency it requires. Because…

“Failure is not an option.” ~Gene Krantz

Failure really is not an option. Warriors, like Lane, continue to fight while we either decide to act, or stand aside.

United States Flag for Lane Goodwin

Update for Lane:

“This morning has been a little better. Lane is a lot more lucid & calm 🙂 God is working really hard through Lane, us & others to bring awareness/funding/ cure to Childhood Cancer! We had a wonderful visit with Congressman Ed Whitfield, District Director Michael Pape & Field Representative Edward West. Lane was sleeping but he was excited to get the US Flag that was flown over the Capitol in Honor of him. We will have a big announcement this weekend :)”

Please feel free to copy, paste, and tweet!

We call the #NumberOneDiseaseKillerOfChildren in the U.S. #Rare #SoundsPrevalentToMe #ChildhoodCancer #FundPediatricCancerResearch

 

 

Can You Feel the Heartbeat?

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

 

“Lane’s night has been a lot better than his morning. He has actually ate some food. God please hear the Prayers across the World for a Miracle for our sweet boy!”

 

 

Today, on launch day for The Truth 365 Childhood Cancer Documentary, I bring you The Heartbeat of Childhood Cancer. Today, Lane Goodwin continues fighting as Thumbs up For Lane grows beyond everyone’s expectations. While I absolutely love hearing of all the communities and celebrities who are joining the army of support for Lane, I can’t help remembering the children who are fighting and dying in silence… without worldly support. I send my love and Thumbs Up For Lane on this day, along with love for all other childhood cancer heroes.

http://now.msn.com/cancer-patients-facebook-page-surpasses-100000-likes

http://www.14news.com/story/19610403/community-gathers-in-support-of-lane-goodwin
 https://www.facebook.com/PrayersforLaneGoodwin

 The words, thoughts, and feelings from families of our heroes capture The Heartbeat of Childhood Cancer…

 Prayers for Will
‎”3:00 am this morning our beautiful boy passed away after the bravest, most courageous battle with brain cancer. Our ‘Iron’ Will exemplified an unbelievable ‘Will’ power that left our family humbled and inspired. Yesterday morning his breathing was so shallow he was unable to get the words out but even so would mouth the words from time to time he loved us. Several times throughout the day, evening and night our family gathered around him to be with him as his heart would beat so faintly and his breaths so shallow we knew it was his time. After a few minutes of hearing our voices his heart would pump and his breathing would increase and he would rally the fight again. By early morning our nurse who has cared for so many patients in their last hour was completely baffled and said she had never seen anyone as strong, brave and courageous as Will fight such a battle and be so concerned to the end of worrying about his family. He didn’t want to leave us. After watching him suffer we were praying for him to go on his journey. Tears flowed down his precious face as breaths and heartbeats faded away….and then peace. His eyes opened and you could see him looking for a time…and then he was gone. Our family gathered around him and Jake prayed that Heavenly Father would be there to greet him and comfort him as he left his earthly family behind, how thankful we were for the privilege of knowing and having this precious boy in our lives and the examples he set for us. It was a spiritual experience our family shall cherish. This afternoon Allen and I will start making arrangements and we will update you. We still have much to share, our hope is you will continue to travel with us on this journey and embrace the legacy of our Iron Will. God Bless. Keep the Faith and never like Will let life defeat you. Enjoy the Journey. Trena and Family.”
 Support for Rylie
“My daughter was diagnosed with ALL this past April. My husband is a Navy pilot and was deployed on the USS Abe Lincoln in the Persian Gulf at the time. He was flown home immediately and we were reunited at the hospital. A few later we were amazed to learn that his squadron painted my daughter’s name on his jet along with a ribbon bearing her name. All the pilots also added the orange ribbon with her name to their flight helmets. Throughout the duration of their deployment the jet with Rylie’s name flew combat missions in Afghanistan”
 “So results are in. We learned that (her) cancer is small cell, and harder to treat. We learned that there are other cancers that share the same cells. We also learned that there simply are no more treatment options. We learned that to exhaust all standard treatment, surgery options, radiation treatments, and oh maybe 8 Or so (lost count) trials takes close to three quarters of a decade. We learned that our fears are now what we know. I still pray every day for that one researcher in a lab somewhere to holler “EUREKA!!!, WE FOUND THE CURE!!!” I hold that hope, gripping it tight, knowing all the while that funding is dismal at best, and osteosarcoma is an orphan cancer. That one tiny beam of hope is why I am able to get out of bed every morning, and I won’t let it go. Telling me to stay positive won’t make me un-know what I wish I didn’t know. It’s crazy, Im crazy, and it all sucks. If I ever hit the lottery,,, well, maybe somebody else’s daughter would have a fighting chance. Even if a miracle happened today, (she) has permanent damage to her bones, spine, organs… I have just been so heartbroken. That little beam of hope that shines on me like a flicker of sunlight through a storm cloud sure has a big job to do. Peace and love, (  ) Mom”

Can you feel it?

This is the Heartbeat of Childhood Cancer.

Go Gold Childhood Cancer Awareness

 

Opportunity to take Action from PAC2:

People Against Childhood Cancer (PAC2) via Van Andel Institute
“It takes action to fight childhood cancer. Researchers research. Doctors doctor and nurses nurse. Advocates advocate. And the parents and kids….well, you know what they do. 

Today we ask PAC2 Facebook members to take action to raise $10,000 to fight childhood cancer. No cost except two minutes of your time.

Dell Services will donate up to $30k to our friends at the Van Andel Institute for every view of the video link below. So far they’ve raised $20k. 

If each and every PAC2 member watches you will have raised $10,000 to fight childhood cancer.”

 

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

Stand Up 2 Cancer and Taylor Swift, Turning Tears Into Hope

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

“And we wept that one so lovely should have a life so brief.”

~ William Cullen Bryant

“One so lovely”…

The attention to childhood cancer in last night’s Stand Up 2 Cancer production was HOPE for my spirit. Stand Up to Cancer has partnered with St. Baldrick’s to create a Dream Team; research means HOPE in so many ways. There are children who need treatment options now, right now.

PAC2 brought me this great news in my inbox today! I could not summarize this or explain it any better:

“Headed into last night’s show, while SU2C had funded some childhood cancer specific research, it had yet not formed a Pediatric Dream Team (i.e., larger, higher-dollar, multi-institutional research projects).   There are seven existing SU2CDream teams.  

But yesterday’s show and the collaborative efforts of St. Baldrick’s and SU2C are going to change that.  It almost seemed like the majority of the show was focused on kids!  Having Julia Roberts caution viewers that cancer “kills a child every four hours in this country.”  Having Justin, St. Baldrick’s Ambassador Kid, featured so prominently, having Taylor Swift dedicate her song to Ronan, and the hearts touched by Avalanna’s story are all giant leaps forward for childhood cancer awareness!!  Reaching a nationwide audience no matter what channel you tuned in!!  Leveraging our ‘normal’ audience an order of magnitude, or two!! 

 Hopefully a prime example of Awareness–>Funding–>Research–>Cure”

Thank you to PAC2 for always bringing us updated news!

Taylor Swift’s song to Ronan:

http://www.youtube.com/watch?v=1ITrd7fM6aY

When we see the faces of childhood warriors, the youngest among us who fight cancer, they seem to always, always have a smile, even when their suffering is great. While they suffer, they think of others. They don’t want others to be sad because of their suffering. They don’t want to be their suffering.

“People know me for my happiness. I don’t want people to think of me for sadness.”

~ Jack Bartosz (August 24, 2012)

And so these brilliant spirits among us teach us strength. They teach us about courage and about what is truly important in our lives. They teach us not to be petty, or mean, or frustrated. Instead, their characters lead us to better ourselves. They lead us to the paths of compassion, gratitude, acceptance, and pureness of love.

I love them. I love these children with every speck of my heart. For this reason, I am one very happy Melinda! Stand Up 2 Cancer has stepped up to the plate for the kids!

SU2C, YOU ARE AWESOME!

Taylor Swift…

I keep searching for the words to thank you for your beautiful song, but it’s hard for me to see the screen while I type– and there are no words. If you could see the tears falling over my cheeks, you would instantly know the extent of my gratitude. Tears of the gratitude type speak volumes. Thank you!

To all of my AMAZING nurses, and to all the others… Thank you!

Did you know you can Be a Part of The Cure?!

 

 

 

 

 

 

 

 

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