A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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

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

Three Lessons about NYC from the Empire State Building’s Refusal to Light Gold for Childhood Cancer

The capacity to care is the thing which gives life its deepest meaning and significance.

~ Pablo Casals ~

Since I live on the opposite side of the country from New York City, my impressions of the city are mainly what I see and what I hear. It’s funny how humans establish pre-conceived ideas and formulate judgments about what we really know nothing about. We notice when things are different than what we are used to. I can still feel the odd stares from people Melinda and I would encounter the further we traveled from California on our Hope Tours. We were a “California Oddity”!

Likewise, New York City has its very own identity. Some see it as exciting and others see it as cold-hearted. However any of us have perceived New York City in the past, the recent refusal of the Empire State Building to light gold for pediatric cancer awareness has opened the door for the world population to conclude the entire city is heartless.

If we look closer, we see this is far from the truth.

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Lesson 1

New York City establishments care deeply about children with cancer, and they are willing to take action to show it.

As childhood cancer advocates choked and gagged on the initial response from the Empire State Building, other New York locations began stepping up to fill the hole. The world famous Coney Island Parachute Jump jumped in, Times Square said they would go gold, 1 World Trade Center and 230 Park Avenue will be lighting gold. The New York Stock Exchange invited childhood cancer foundation, Frankie’s Mission to ring the bell yesterday!

https://www.youtube.com/embed/HHH2tCb03gY …

For a complete, updated list of those going GOLD, the best place to visit is Tony Stoddard’s “A Day of Yellow and Gold to Fight Childhood Cancer on facebook. https://www.facebook.com/yellowandgoldforcole

“The fallout or should I say “The GoldOut” from the Empire State Building’s refusal to light gold continues! 230 Park Avenue is the Crown Jewel of Park Avenue and it has joined Times Square in announcing it will be lighting gold in September…” for Childhood Cancer Awareness Month. New York City is going all out for our kids!

~Tony Stoddard

Lesson 2

New York City citizens care deeply about children with cancer, and they are willing to take action to show it.

One example of these citizens is a man who happens to be a reporter from Fox 5 New York.  This man has done wonders for helping spread awareness for childhood cancer. He has relentlessly sought to educate the public and to enlist the help of people who might assist in influencing decisions that will bring awareness to childhood cancer. His name is Joel Waldman.

Please follow him on Twitter and thank him for the generous contributions from his heart.

@joelwaldmanFOX5

One of Joel’s tweets:

“One World Trade Center is going gold and Shelby Huff could not be happier. #OneWorldTrade #TallestBuildingInWesternHemisphere #TimesSquare #HelmsleyBuilding #ConeyISland #BayRIdgeBrooklyn #WhoIsNext ? http://www.myfoxny.com/clip/10498073/go-gold

 Melinda Marchiano @1ballerina · Aug 22

@joelwaldmanFOX5 wondering if you know how long the #ChildhoodCancer community has prayed for a reporter with your #Gold heart? #GoGold

Lesson 3

New York City political leaders and major league sports personalities care deeply about children with cancer, and they are willing to take action to show it.

New York Giants coach Tom Coughlin spoke with Joel Waldman about a former player of his who died from childhood cancer. In this same interview, Joel speaks with New York Giant Mark Herzlich about his survival from Ewing’s sarcoma and his puzzlement over why the Empire State Building won’t light gold for a night to recognize childhood cancer awareness in September.

http://www.myfoxny.com/clip/10518032/giants-to-esb-go-gold

New York City Councilman Vincent Gentile Deputy Leader (43rd District, Democrat) has also taken action.

One of his tweets tells about it:

Vincent J. Gentile @VGentile43 · Aug 26

I am introducing a resolution calling on the Empire State Building to GO GOLD for kids with cancer http://www.myfoxny.com/Clip/10511854/go-gold#.U_ysSRtTpm4.twitter … @joelwaldmanFOX5

Speaking with @joelwaldmanFOX5 about my resolution calling on the @EmpireStateBldg to go gold for kids with cancer.

One more New York City Councilman and former NYC public school teacher, Mark Treyger, helped influence the decision for the Coney Island Parachute Jump to light gold in September.

@MarkTreyger718

 Melinda Marchiano @1ballerina · Aug 17

@MarkTreyger718 Wish more elected officials would open their hearts & roll up their sleeves like U! Thank you #ChildhoodCancer #EmpireGoGold

Melinda Marchiano @1ballerina · Aug 20

Huge thanks @MarkTreyger718 for your commitment to #GoGold for #ChildhoodCancer #ConeyIslandParachuteJump http://www.nydailynews.com/new-york/coney-island-parachute-jump-highlight-childhood-cancer-article-1.1907877#bmb=1 … #WhosNext

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It looks from my end of the country that just about everyone in New York is stepping up to make this September a year that we will remember in the childhood cancer community as ground-breaking in raising awareness that will lead to research funding and cures.

New York, I love you! The lessons you have taught me make me adore you. The Empire State Building has chosen to be a Black Hole, but it is crystal clear that the rest of the city has an enormous capacity to care. Not only do you care, you are willing to take the action steps to show it. 

Don’t worry, I am not going to let one bad apple ruin it for the rest of the Big Apple.

It’s time now to click the Frankie Rings the Bell link again and play it over and over. Is it just me? I swear I hear the sound of children laughing and playing.

808

 

 

 

Guest Blogger: Lee Marchiano

 

 

Childhood Cancer, The Empire State Building, and King Kong

Empire State Building ResponseDear Empire State Building,

It’s true we have had our differences recently. It’s true that “an individual” did request a “tower lighting for childhood cancer awareness.” (Thank you, Tony Stoddard! A Day of Yellow and Gold to Fight Childhood Cancer https://www.facebook.com/yellowandgoldforcole?ref=br_tf.)

What is missing from your statement is the fact that The Empire State Building not only turned down Tony Stoddard’s request, but refused requests from multiple childhood cancer foundations who all applied “responsibly.” What other conclusion is the childhood cancer community to make—other than the obvious? How can we help but conclude that you simply do not care about children with cancer?

You lit The Empire State Building for the release of an Alicia Keys album.

“Wait Til You See My Smile”
When the wind is blowing in your face
Sometimes in life you don’t see straight
Pray to Him, He will show
When your head is in a certain place
Nobody around to make you safe
Stand strong and you will grow
Could it be? Could it be that “the wind is blowing in your face” and you can’t “see straight”?

Or… could it be that you are simply uneducated about childhood cancer? Could it be that your lack of  awareness is the real reason for your refusal? How ironic it is that your lack of awareness is exactly what could be causing the blockade to more awareness! Please, click on this link to learn vital facts about childhood cancer from The Truth 365.

http://www.thetruth365.org/cancer-facts/

Class dismissed.

Would you now please reconsider your decision?

Without a doubt, what would make you change your decision in less than a heartbeat would be for you to actually meet a child fighting cancer. Their utter innocence, their unabashed courage, and their inner strength would melt you. Did you know that current treatments for childhood cancer are equivalent to torture? Did you know that while these children battle for their lives, they are always thinking of others around them and how they are feeling? Have you ever seen the face of a child who looks to you for hope?

Here’s the thing.

You have the ability to bring joy and happiness to these suffering children. You have the ability to shine a light of hope over New York City and our country. You have the opportunity to save children’s lives through awareness that leads to research funding. Imagine—you could be like Santy Claus when these kids see that the Empire State Building has given them a brilliant, shiny, gold gift of hope. You could be a shimmering mirror that reflects the beautiful light that shines inside of these kids.

“Wait til You See My Smile”

As other New York establishments announce that they will be lighting gold for pediatric cancer awareness month in September, like the Helmsley Building, Times Square, Coney Island Parachute Jump, and 1 World Trade Center, I ask you to do the same. A change in your decision will not mean you are weak and crumbling under pressure; it will mean you are strong and growing.

“Stand strong and you will grow.”

If you consider all of this and your decision to light gold for childhood cancer awareness month is still, “No,” then will you please book King Kong to climb up the side of the Empire State Building to spread gold glitter all over New York City in September? #EmpireGoGold

With hope for a world without childhood cancer,

Lee Marchiano

Step up

 

 

 

 

 

 

“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

untitled (3)

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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!

 

 

Hairless or With a Head Full of Hair

I have been unable to focus on much else this week, but my upcoming shave for St. Baldrick’s/Pediatric Cancer Research tomorrow at Oakland Children’s Hospital. Friends are asking if I am nervous, and all I feel is excitement! I can see faces cringing back at me in horror, as they ask themselves (yes, faces ask themselves questions all the time,) how can this terribly deranged girl feel such a thing?

Any family who has been touched by childhood cancer knows why I am excited; they know exactly why I have chosen — this time– to go bald. When I read of another child who passed today, from childhood cancer, I fought back tears. Then, I decided I would let them go. I decided I would let that feeling of pain and torture and loss and helplessness and hopelessness penetrate my soul.

Now, I ask you to do the same. Imagine our most precious, most delightful humans on Earth suffering and dying from cancer. 

I ask you now, “Would you not do the same to help them?”

Childhood cancer will continue its terror unless many, many of us do something. The “something” I can do tomorrow… through the help of many thoughtful and generous friends… is raise money for research that will help strangle the enemy called cancer.

Oh yes, cancer is my enemy. I will happily let those hairs fall to the floor tomorrow. As each individual hair falls to the floor, each one carries with it a prayer for the end of childhood cancer and a commitment to do all I can–hairless or with a head full of hair.

http://www.stbaldricks.org/participants/mypage/579474/2013/

IMGP3142 113

I just hope I don’t scare anyone… especially Debbie!

From Grace:

Mom and I were on our way home in the car, and we slid to a stop at the giant blue mailbox in front of our post office. Rolling down my window, I stretched out like a giraffe reaching for a leafy dinner. Plop!

The envelopes fell in and disappeared. Just then, a lady who works at the post
office, who we have known for years, came strolling out with a large container
to collect the pile of mail.

My first thought was, “Look! It’s Debbie!”

But then I recalled that my appearance was slightly different from when I’d seen her last.

“Oh crap! I’m bald!” I cried, fumbling for my beanie.

She neared the box—everything seemed like it was National Geographic slow. Not wanting to explain my whole story in my exhausted state, I scrambled, found my hat, and jammed it in an awkward way atop my head. Mom found an opening in the traffic, and we zoomed away. I felt like Mrs. James Bond.

Scream laughter erupted from Mom and me. That was a close one. There were times when we cried together, there were times when we laughed together, and there were times when we laughed and cried together. This was one of those moments.

 

 

Ben Franklin’s Doo and Cindy Lou Who

 

 

 

I remember talking with my mom about the impending  loss of my hair when I was beginning cancer treatments. We both wondered how it would happen. I mean, would it all fall out at once? Would I wake up one morning with a huge “nest” on my pillow? Would it fall out in clumps here and there? As we imagined different circumstances, we would end up laughing until our bellies hurt. Never did we imagine what actually happened… and never, ever did we imagine it would be so funny that we would laugh about it for years to come!

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

Dad nearly collapsed , and his eyeballs bugged out from his head. I guess that was the first time he ever really noticed the progression, or shall I say regression, of my hair loss. What occurred was quite fascinating. I had expected for hair to fall out everywhere, leaving patches of hair and no hair until all was gone. But instead, my one-eighth-inch part grew wider and wider until a stripe of a little over an inch created almost a “freeway” on my head. Hmm . . . Route Baldo . . . kinda has a ring to it. Anyway, each attempt to brush my hair resulted in more lanes being added, my own personal “tax dollars” at work. I needed some cones to set out.

A bit further on in Grace:

The mirror was a visual aid in grasping the reality that I had just about as much hair as a naked mole rat. My male-pattern baldness was most prominent where my part once stood. From there on out, the forest became slightly thicker. The near crop circle on my head was disturbing, yet hilarious. The phases went from top to bottom, and looking into the future, I saw myself with almost a “curtain” of hair along the side of my head, but nothing on top. I laughed so hard that it hurt. 

“Mom,” I shouted, still in a slur of giggles, “I’m gonna look like Ben Franklin!”

We laughed until our bellies hurt, our eyes were watering, and we were nearly
peeing in our pants. And then . . . we laughed some more.

As my crop circle continued widening to the extent of covering my entire head, I would gather the few strands into a tiny pony-tail on top of my head. My mom called me Cindy Lou Who… “who was not more than two!”IMGP2601 006

After this photo was taken, I returned home to the razor…

From Grace:

With Mom on one side and Nicholas on the other, we crawled down the hallway, as if preparing for launch. My hand grasped the metal hair buzzer on our bathroom counter. I was ready. With a “click,” I fired it up . . . all eyes watched my steady hand. As though using my own personal, mini-lawn mower, I executed a perfectly straight line from the center of my forehead to the crown of my head. 

I paused. It was an epic moment, and I knew it . . . everyone did. The now free hair floated elegantly down to the waiting floor as I began to form a parallel row. Feeling the cool air on my bare head, I giggled. It was something virtually no one experiences, let alone a thirteen-year-old girl.

I followed the contour of my head. I had never really known what shape it was. The tiny, delicate hairs slid down the back of my shirt, making me itchy. Carefully, I formed a giant circle on the top of my head, trying hard to make it as even as possible. The circle grew larger, just as a crop circle mysteriously forms in cornfields at 3:00 a.m.

Suddenly, I stopped and stared at the stranger reflected back at me. I had purposely ceased midway to, truly, be the one I resembled. I was Ben Franklin. With only straggly hair running around the majority of my head’s circumference, I depicted the founding father perfectly! Laughter erupted, and I found a chuckle that squeezed shock, excitement, embarrassment, and joy right out of me.

IMGP2607 032

 I am thinking I should Bring Ben Back– even for a few moments on my shave day– this Saturday, March 30, at Oakland Children’s Hospital for St. Baldrick’s Foundation.

http://www.stbaldricks.org/participants/mypage/579474/2

Kids need fun. Adults need fun. 

Cancer is no fun.

Let’s stop cancer together. 



 

One Happy Bald Head

With less than a week to go until my Shave Day for St. Baldricks  and pediatric cancer research, I want to share my feelings when I discovered I was going to be bald… the first time…

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

This is what Dr. Dan spoke of. This is also the first time he used the word “chemotherapy,” his New Jersey accent giving it a unique sound. My heart, a hair-raising roller coaster, plummeted down and did a double loop before finally ascending to the top again. Suddenly, that “medicine” that “melted the mass” revealed its true identity. I was totally and completely taken aback. Me. Chemo. It was unreal, like a fairy tale . . . actually a nightmare. 

I looked to my dad, his eyes seemed watery. Instantly, I could see it hit way too close to home. His dad, my grandpa, had received chemotherapy for a very rare blood disorder, but sadly, he passed away that June after a long, grueling battle. My dad’s face read, “Oh no, not my daughter, not her too.” 

It was quiet . . . too quiet for my comfort, and way too long for my comfort.

Breaking the silence, I asked, “Will I lose my hair?”
“Yes,” Dr. Dan confirmed.

Whoa. What a concept. I pictured myself resembling ET more than my own family. The positive, comedic side of me could not help but break through the layer of seriousness that coated me.

“Well,” I chimed, “I won’t have to put up my hair in a bun.” 

That brought a much-needed laugh to the dismal room, with Dr. Dan’s deep chuckle making me laugh uncontrollably. Once our momentary silliness ceased, we got back down to business. I had one more inquiry that was haunting my mind.

“Will I still be able to dance?” I questioned, my eyes donning a soul-twisting, puppy dog look.

The answer somewhat surprised me.

“For the most part, yes,” he replied. “We have a young man who played football through treatment.”

That’s all I wanted to know. I was set . . . content, a whole and complete person.

Imagining myself bald as a newborn, dancing in class, I wondered how the other girls would react. I pictured shocked faces the first time I returned to dance, no one being able to concentrate with me in the room.

IMGP2689 054

This second time, my bald head will laugh when it feels the wind tickling its barrenness. This time, my bald head will know it shines like a dome for the kids. My bald head will smile, knowing it gave up its crop for the purpose of ending the suffering of children with cancer. I am going to have one heck of a happy bald head!

Thank you from my heart to each of you who has supported my efforts with your donations, your encouragement, and your kindness.

Beyond the Cure, Beyond those Dreams

 

 

The National Children’s Cancer Society

“We serve as a financial, emotional, and educational resource for families that can’t make ends meet when their child is diagnosed with cancer. Since our inception, we’ve provided more than $57 million in direct financial assistance to more than 33,000 children nationwide, and we work closely with over 300 hospitals and pediatric oncology units throughout the US.”

 

There is no way I can count the times in these past months of my freshman year at Pepperdine that I look around, take in where I am, and then gasp– realizing how blessed I am. For anyone who has visited the campus, you know there are many long, steep staircases for students to navigate from one place to another– as Pepperdine is built into the Malibu hillside that looks out over the Pacific Ocean. There was a time, not so long ago, that I dreamed of being strong enough to just walk across my room. This not-so-distant memory creates a strong context for the world I now see around me. Being healthy enough to notice what is around me, being healthy enough to take part in the world around me, and being healthy enough to use my life to maybe help someone else’s is “Beyond” my wildest dreams of those days I was flattened on my bed.

Now, outside my dorm room, there is a view that… well… the vast, blue, expansive Pacific!  I love the students, dancers, professors, and the atmosphere here!  I love learning here. Before I began attending Pepperdine, I never even imagined a college where I would be able to combine my curiosity to learn Bio-Chemistry, my passionate desire to continue to DANCE, and my deep need to grow in my faith. I have all of that; I am so happy here I could scream… or cry… or both!

Without scholarships, my education at Pepperdine would be out of my reach. I am thankful to Pepperdine University, and also to one other organization that has helped me tremendously. The organization I am speaking of is the National Children’s Cancer Society and their Beyond the Cure Scholarship Program. I am very, very thankful to be a recipient of a 2013-2014 Beyond the Cure Scholarship.

http://www.beyondthecure.org/scholarships-2012-2013

I want to let my fellow student/cancer survivors know that the 2013-2014 Beyond the Cure Scholarship Program is now accepting applications. If you are younger than 25 and have been accepted to an accredited educational institution, and you are a childhood cancer survivor (diagnosed before age 18,) then I encourage you to apply.

Application

http://www.thenccs.org/Document.Doc?&id=219

Renewal Application

http://www.thenccs.org/Document.Doc?&id=220

Beyond the Cure Scholarship Information

http://www.beyondthecure.org/scholarships

NCCS

“The Beyond the Cure Scholarship Program awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation. A total of $125,000 was awarded to 38 childhood cancer survivors for the 2012-2013 academic year.”

Application deadline is April 1, 2013

I am sending this off with great love and respect for my fellow survivors of childhood cancer. May you receive all the help and support that you need to reach for your wildest dreams…

… and don’t be afraid to reach even further… “Beyond” those dreams!

Go Waves!

Go Waves!

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.”
 
Video

I Want to Make All of Them Full

Grace Cover ARC Ray Romano

Definition of “Full”

Containing or holding as much or as many as possible; having no empty space

 

This past Friday night, I had the honor of dancing at Wish Night for Make-A-Wish Tri-Counties. I had the honor, and the great pleasure, of dancing to Becca Solodon’s original song, “Through the Fire.” Becca was diagnosed with cancer when she was sixteen, and she lost one of her legs to the beast. I have known Becca for a few years, through the Teddy Bear Cancer Foundation where she now works. The most accurate way I have of telling you who Becca is…. is to tell you her photo belongs next to the word “SWEET” in every dictionary. She has dedicated her life to making a difference for kids with cancer.  She has an unsurpassed special beauty in her voice and in the music she writes and performs.

Make-A-Wish Hyatt Teddy Bear Lift

 

Topping off the musical talent of the evening was Wish “Kid” Jessica McKenzie, who has studied voice at UC Berkeley. Her gorgeous vocal performance had everyone on their feet clapping when she was finished.

I was overjoyed to be there! The whole evening, I kept envisioning all of the kids I have met who are fighting for their lives. Looking at the people in the room, I gave thanks for their hearts. Some of the people there were Make-A-Wish volunteers, like John MacFadyen, who was the fabulous MC for the evening.  

Some were Make-A-Wish employees, like Shanna Wasson-Taylor, CEO of Make-A-Wish Tri-Counties, who was honored for seventeen years of service. I must also mention Linda McKenzie, my most incredible Wish Planner! The others were those who had paid to come, people who gave more money for auction items, and people who raised their hands to personally choose and fund a portion of a child’s wish. 

After several wishes were funded, there were no more hands raised, and John asked one more time.  We all looked at the bar graph showing there were some children whose wishes were not fully funded– and there were some that were not funded at all.  

There was a man who raised his hand…

“I want to make all of them full, ” he offered. 

Poor John, I think he nearly fell off the stage. He was speechless. The entire room of people stood and applauded this man’s generosity. It was an incredible moment! 

Full… “no empty space” 

This generous man left “no empty space” in the hearts of the children. He made them all full. With this kind act, he left no empty space in his own heart either.

…  I can “see” the kids everyone helped that evening. I “see” the moms and dads and siblings who will be blessed. 

Hope and Joy and Love are beautiful things to share; this is what Make-A-Wish does as their specialty!

Gramma & Poppy, always supportive, were at Wish Night!

Gramma & Poppy, always supportive, were at Wish Night!

http://www.youtube.com/watch?v=2SZ0hJpwZMw

Childhood Cancer survivor Becca Solodon rehearses her original song, “Through the Fire” before Wish Night for Make-A-Wish Tri-Counties. It was an honor to be there… to dance to Becca’s beautiful music, and to help make more wishes come true.

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