A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘cancer’

Awareness for Childhood Cancer and Hope Tour in Kennewick, WA

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

If we truly care about children with cancer, we need to understand—or at least try to understand—what they go through daily. Hearing their stories firsthand, like I had the opportunity to do on my Make-A-Wish Hope Tour, or reading their stories, help us to realize how deep the need is for us to act swiftly, hugely, and boldly toward cures for childhood cancers.
 
Vinny DiGerolamo – in my heart…

From his Caringbridge site:

 ..”On Friday we went back to the hospital for our out-patient chemo, Vincristine, and blood counts. I met 3 newbies there and it never ceases to make me remember the shell-shocked days when we were new. It is amazing how much things have changed on the ward after being there for so many years.. and how many new faces walk the hallways. At one time, I knew everyone there. At one time, I could call to request my own favorite room number, right next to my friend. At one time one room would call the next room on the phone to whisper that a “newbie” had just arrived… and all of my friends in my first circle of friends are gone. Out of nine of us, Vinny and one other Survivor are the last two alive. And Vinny is one of the last few out of my 2nd circle of friends… and now I am somewhere in the middle of making my 3rd round of friends. The other day one of the doctors joked that Vinny is the most popular child they have and everyone asks about Vinny. I said no, Vinny is just the one who has been there the longest…… .and in a way, I am so grateful that he is alive and still is well enough to go in for chemo almost every week… but sad enough to admit that 4 1/2 yrs is a very long time and not such a fun way to live with the constant worry, the stress, the pain, the sadness and fear of the future. 

But we keep making plans and taking baby steps to look forward to little things so we can enjoy what we are given. On Friday I asked again about the breathing… he had been wheezing and breathing hard for 2 days prior to chemo. But Vinny wasn’t breathing hard at the moment that the Oncologist listened to his lungs and chest. There is more blockage, of course, in the collapsed lung with the tumor, and breathing is more clear in the one lung… but nothing we could pinpoint Friday at clinic. 
On the way home from the hospital, we had our usual Sponge Bob Popsicle from Toys R Us (the only place that sells them), and when we got home, I called clinic for blood count results and found out that Vinny’s ANC was horrible, he is neutropenic and not allowed out in public, and can’t be with people until he repeats counts tomorrow. His hemoglobin was great (10.6) but platelets were 23. They transfuse at 20. They said to watch for bleeding, if any bleeding of the gums or nose, we would have to bring him in immediately. Bruising is bad and legs hurt. They were not sure if counts are climbing up again, or going down so we will go to Dr. Rickett’s office tomorrow for more counts and hope that platelets rise so we can skip a platelet transfusion.” 
http://www.caringbridge.org/visit/vinnydigerolamo

If more people knew about Vinny– if more people knew the true, day-to-day stories of children fighting cancer, we would have an army of people supporting childhood cancer research. If people could feel a fraction of the suffering, cures would be right around the corner. I believe this with all of my heart… and so… I am grateful for everyone who takes the time to open their heart enough to take time to learn. With awareness, change will come. I wish we could rewind at the time when “the change” comes, so we could recapture the beautiful lives of the children we have lost to cancer.

I wish this could be true. Since this is a wish that cannot come true, my wish is to make a difference for the children who are now fighting. My wish is to make it so there will be a day– soon– where children will not have to fight. This is why I wished for a Make-A-Wish Hope Tour.

This brings me to another Hope Tour update and another huge thank you to Make-A-Wish AK/WA for our final Hope Tour stop in Washington. Mom and I arrived at Kennewick General Hospital on a Sunday morning. This was not a “scheduled stop,” but Amazing Meredith at Make-A-Wish arranged for this visit. When I walked in the doors of the hospital, it took a moment for what I was seeing and hearing to register. When I saw signs that read, “Welcome Melinda,” and heard the clapping, I realized the warmth and love and welcome was for me! In a billion years, I never, ever, would have expected anything like this! The warmth of the staff at Kennewick General Hospital heated up to a fire-y glow when I walked into their cafeteria and saw a beautiful and colorful cupcake welcome display.

Kennewick General Hospital Welcome

Kennewick General Hospital Cupcake Welcome

I had the opportunity to speak with their staff, eat cupcakes (yum– by the way,) give away books, and have interviews with a couple of news stations. I am always very, very grateful for the opportunity to raise awareness for childhood cancer in the news. The people of Kennewick, WA were wonderful for helping me do this! Thank you to Dan Thesman, KVEW (ABC) and to Jane Sander from KNDU/KNDO (NBC) for your support. 

I was able to visit with a couple of patients; I will always remember our conversations. My time with patients on my Hope Tour is the core of my wish. Wrapped tightly around that core is the desire to help raise awareness for childhood cancer. Thank you to Make-A-Wish and to everyone at Kennewick General Hospital for helping to make my wish come true!

I LOVED meeting everyone at Kennewick General Hospital– Trish– and Jane in the background

Thank you to Lisa Teske and to Nicole for all you did to make my visit to Kennewick General Hospital such an enjoyable and meaningful time!

KVEW TV Kennewick, WA 7/1/2012

http://www.kvewtv.com/article/2012/jul/01/kgh-helps-make-wish-patients-dream-come-true/

Kennewick, WA 7/1/2012

http://www.kndu.com/story/18928222/cancer-survivor-author-visits-kennewick-general-hospital

Kennewick, WA Tri-City Herald 7/1/2012

Tacoma The Tribune News 7/1/2012

http://www.thenewstribune.com/2012/07/01/2201700/make-a-wish-recipient-visits-young.html

When Mom and I left Kennewick, we left filled with all the love that the staff had given us. I left with a new, special knowledge from the patients I had the blessing of meeting. We left with anticipation that the journey ahead would bring new hope. We surely left Washington ready to share the hope in our hearts. When we plopped down on “our” beds that night, we found ourselves in the state of Idaho…

Idaho!

Hope Tour Video Day 15

http://www.youtube.com/watch?v=2hgRg2k0kX0

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Hope Tour at Seattle Children’s Hospital

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

“Oh my gosh. My heart pounded. I could not believe what was happening to me. After suffering so much, I almost felt it was too good to be true, like I didn’t deserve it or anything. My mouth hung open, my breathing was awkward, and my face was hot and red from crying. I lost it—completely lost it. Burying my head in my arms, I cried so hard that it hurt. Never had anything touched me in such a way. To hear encouragement to keep fighting from someone who I admired was breathtakingly unimaginable.”          

Copyright/Melinda Marchiano

After a morning that began with meeting Dr. Sanders and then Dr. Hartwell, how could my thirteenth day of the Hope Tour encompass even more excitement? It could, and it did!

Mom, Meredith, and I left Fred Hutchinson Cancer Research Center and headed for Seattle Children’s Hospital in a light rain that ended before we hopped out of our car at the hospital. Dr. Molly Martyn met us with a warm welcome and led us to a conference room where everything was ready for my presentation. 

Dr. Molly Martyn, Chief Pediatric Resident at Seattle Children’s Hospital

Before I spoke with the residents, we all enjoyed a delicious lunch, thanks to Jayson Levich and Panera Bread in Seattle! Panera Bread has been unbelievably supportive of my Make-A-Wish, and I thank the company and the employees!

Thank you to Panera Bread for supporting Make-A-Wish and the residents at Seattle Children’s Hospital

This was the very first opportunity I have had to speak with a room full of residents. Some of them were at the end of their residency and some were at the very beginning. My time with them was filled with meaning. Their questions showed a true concern for understanding their patients so that they could better care for them. I am grateful to Dr. Molly Martyn, and to Meredith and Make-A-Wish, for this opportunity to share insight that will hopefully lead to better care for children with cancer.

Speaking with residents at Seattle Children’s Hospital

After speaking and signing books for the residents, their Child Life Specialist, Austin, gave me a tour through pediatrics. We suited up in our finest yellow garments to visit Jenna, a cheerful, lovable girl who is recovering from a bone marrow transplant. I loved the signs on the walls of her room… my favorite… “Jenna Rocks!”

Child Life Specialist, Austin, at Seattle Children’s Hospital

 I was able to visit a couple of other children while I was there. Childhood cancer is moment to moment, so I never know until I walk in the door of a hospital if there will be children there who are up for a visit. I… of all people… understand this. I was very happy to meet all of the children I met this day, and I want to share about one more very special boy and his mama that we met. Duncan really did grab my heart and take it away with him! Mom and I talked with Duncan and his mom about love and about faith. It was just minutes of time together, but the heartfelt memories will last forever. Duncan and his mom taught me about love, about life.

Duncan Stole My Heart

As we left the hospital, it was time to say good-bye to Amazing Make-A-Wish Meredith. This was very, very hard to do; Mom and I wanted to pack her up in HerbertTheHopeMobile and bring her along for more Hope Tour adventures. It’s hard to say bye to someone who has given your life experiences that you have only dreamed of. It’s hard to say bye to someone who has worked her tail off out of the love in her heart. I miss you already, Meredith! Thank you, and thank you to your entire office at Make-A-Wish Alaska/Washington for making my time in Seattle unforgettable.

Bye Meredith!

 Thank you for cooking up a huge batch of Hope while I was there in Seattle!

Day 13 Part II Hope Tour Video:

http://www.youtube.com/watch?v=dO0i3V0twZ8&feature=youtube_gdata_player

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Hope Tour Receives Hope from Dr. Lee Hartwell

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

Will someone please find a cure for cancer? Will someone please discover the cause for childhood cancers? 

Meeting Dr. Lee Hartwell on the Hope Tour at Fred Hutchinson Cancer Research Center was a time that filled me with hope! I won’t ever forget thinking about how much time and how much hard work this incredible man has put into his life work. I will always be inspired– for the rest of my life– from my gift of time with him.

From Wikepedia…

“Leland Harrison (Lee) Hartwell (born October 30, 1939, in Los Angeles, California) is former president and director of the Fred Hutchinson Cancer Research Center in Seattle, Washington. He shared the 2001 Nobel Prize in Physiology or Medicine with Paul Nurse and R. Timothy Hunt, for their discoveries of protein molecules that control the division (duplication) of cells.
When cells with nuclei divide, they divide in phases called G1 (growth), S (synthesis), G2 (growth), and M (mitosis). Nurse, Hartwell and Hunt together discovered two proteins, cyclin and CDK (cyclin dependent kinase), that control the transition from one stage to another. These proteins are called checkpoints, because they check whether the cell has divided properly. If the cell doesn’t divide correctly, other proteins will attempt to repair it, and if unsuccessful, they will destroy the cell. If a cell divides incorrectly and survives, it can cause cancer and other serious diseases.
Working in yeast, Hartwell identified the fundamental role of checkpoints in cell cycle control, and CDC genes such as CDC28, which controls the start of the cycle — the progression through G1.“

Dr. Lee Hartwell!

Time with Dr. Lee Hartwell–

It was no everyday conversation… it used common words in an uncommon way.  I sat across the small conference table from Dr. Lee Hartwell.  His humble demeanor and heartfelt warmth somewhat disguised the fact that he is an extremely highly respected researcher and Nobel Laureate.  However, his brilliance and deep, careful thoughts revealed just why he is so highly noted.  He is a man whose gentle, yet strong, presence I felt from the moment he walked through the sliding doors at Fred Hutchinson Cancer Research Center.  It was in a small conference room where I received the honor of talking with him for about 45 minutes. 

Fred Hutchinson Cancer Research Center and Dr. Lee Hartwell

I was in awe to be speaking with a man of such wisdom, humility, and yes, grace.  Starting off with genuine words about my book, Dr. Hartwell explained how much it meant to him and how it had impacted his current thinking.  Wow….to influence someone of the caliber at which he thinks is truly a remarkable privilege.  After a short time, the conversation shifted.  I couldn’t resist asking him about his research, which I had read about in detail the night prior.  I was curious about what the accomplishments in his studies meant to him personally.  I was enlightened and inspired by his reply.  He talked about the joy of “getting lost in the woods”…that is, the journey of his life and research as opposed to an end goal. 

I thought of my cancer journey, my future, and it all clicked.  The joy of traveling, not reaching….the joy of discovering, not knowing….the joy of wandering in the “woods” and loving every second of it.  I left that room spiritually encouraged, excited, and inspired.  I will have Dr. Hartwell’s tender, wise words with me always.

Hope Tour Day 13 Video Part I

Loving our time in Seattle on my Make-A-Wish Hope Tour!

 

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New Day Northwest for the Hope Tour

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

What a great day in Seattle today! Hope Tour Day 10 brought an opportunity for me to talk about childhood cancer on New Day Northwest. Mom and I met Meredith, a truly lovely lady from Make-A-Wish, at King 5 Studios.

Thank you New Day Northwest for the opportunity to raise awareness for childhood cancer!

 

 

 

 

 

Su from New Day Northwest and Meredith from Make-A-Wish

Everyone there was warm and welcoming. We sat in the audience and watched the beginning of the show while waiting for my spot—last for the show. I loved watching all of the show! In particular, I loved the part where nurses brought in organs to demonstrate how our decisions about what we put in our body can make a huge difference in the health of our organs. When the taping was over, I had the chance to put on gloves and handle brains, lungs, livers, tongues and throats.

The Lungs of a Smoker

Did you know that teenagers who put alcohol into their bodies are “cooking” their brains? They placed an egg in alcohol to show how it “cooks” our brains because they are not yet mature.

The host of New Day Northwest, Margaret Larson, is sharp, witty, kind, and likeable. It’s hard for me to put into words how grateful I am for the opportunity that New Day Northwest gave me to talk about childhood cancer.

Margaret Larson — New Day Northwest King 5

One of the facts I really wanted to share—and had the opportunity to share– is the difficulty many cancer children face getting a diagnosis. When children are diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults. Our society’s general lack of awareness about childhood cancer means that children are dying who could be living.  We need change now.

New Day Northwest King 5 Seattle 6-26-2012

http://www.king5.com/new-day-northwest/18-year-old-cancer-survivor-doesnt-anything-stand-in-her-way-160375855.html

 

 

The drizzling rain didn’t stop us from walking around Seattle this afternoon. Mom and I walked through Pike Place Market and visited the aquarium.

Pike Place Market

An email arrived around this time that was a huge surprise. Dawn McMillion, owner of That’s Amore Italian Café, had seen the morning segment on New Day Northwest, and she generously offered to give us a complimentary dinner at her restaurant! She has a personal connection to childhood cancer. Mom and I were touched by her offer of kindness, and we really wanted to meet her. Guess where we ate dinner tonight? That’s Amore! Guess where I ate the very best pizza I have ever had in my life? That’s Amore!

Thank you to Dawn and That’s Amore

Tomorrow… Amazing Make-A-Wish Meredith has arranged a meeting for me with a pediatric oncologist who also does research! This is exactly what I want to do, and I cannot wait to be able to talk with her.

Thank you New Day Northwest, Su, Margaret, Meredith, and Dawn, for a fantastic day!

Hope Tour Day 10

http://www.youtube.com/watch?v=OsS0ZSLfMoY

 

 

 

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Why I LIVESTRONG

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

“The goal of ours has never been the biggest. It’s to have the most significant impact. We can’t do it without you”  ~Quote from @LIVESTRONG Twitter Page

I find myself in Austin, Texas today. I am here to attend a LIVESTRONG Leader Assembly. Two hundred leaders (serious cancer ButtKickers!) from around the world have gathered here. It is no secret that I am focused on doing all that I can do to end childhood cancer; I also know that the mission of LIVESTRONG is one I absolutely need to support.

When people hear the word, “LIVESTRONG,” most know the organization has something to do with Lance Armstrong. The last middle school I spoke at, the kids had no idea of who Lance Armstrong is! I was excited to tell them who he is, what he has accomplished, what he has created, and to give them yellow LIVESTRONG wristbands. They were then excited to go tell their friends about Lance and LIVESTRONG.

What I have learned about LIVESTRONG has given me a great desire to help them achieve their goals. I have tremendous respect for the respect they have for their fellow humans. I find that compassion, understanding, intelligence, commitment, dedication, tenacity, and guts define LIVESTRONG.

Rather than attempt to summarize the LIVESTRONG Manifesto, I will copy it in full below. If you know someone who has just been diagnosed with cancer—someone searching for treatment options— calling LIVESTRONG is an excellent place to begin gathering information. This is just the tip of the iceberg for the help they have to offer.

The LIVESTRONG Manifesto (from www.livestrong.org )

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is LIVESTRONG.

We kick in the moment you’re diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. Your healthcare team. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You’re in the fight of your life.

We’re about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that’s what it takes.
We’re about preventing cancer. Finding it early. Getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It’s your life. You will have it your way.

We’re about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It’s knowing your rights.
It’s your life.
Take no prisoners.

We’re about the fight.
We’re your advocate before policymakers. Your champion within the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is LIVESTRONG.
Founded and inspired by Lance Armstrong, one of the toughest cancer survivors on the planet.

I am grateful to have been chosen as a 2012 LIVESTRONG Leader. I look forward to using everything I learn here to truly make a difference in this world for people fighting cancer.

Did you know that LIVESTRONG has a program called LIVESTRONG At School? http://www.scholastic.com/livestrong/

If you are an educator, you can have a huge impact in the life of a child by sharing this information.

Now, more meetings… more knowledge… more cohesiveness… more hope!

For these reasons and many more… I choose to LIVESTRONG !

 

 

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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!

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Where Have You Gone, Mr. Rogers?

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

Since my post yesterday, I am still scratching my head, trying to figure out why even highly educated people in our society are grossly unaware about childhood cancer. An even more important question surfaces next… how can we change this?  

“It’s easy to say ‘It’s not my child, not my community, not my world, not my problem.’ Then there are those who see the need and respond. I CONSIDER THOSE PEOPLE MY HEROES” 

~Fred Rogers

 Could it be that there are people who are saying, “It’s not my child, not my community, not my world, not my problem”? No wonder it was always such a nice day in Mr. Roger’s neighborhood!

 What I aim to accomplish with this little ol’ blog of mine is to let the world know that, even though I am technically still a child myself, I consider these children my children. Their problem is my problem.  I see their tremendous need and I must respond.  These incredible children fighting cancer are my heroes. I aim to keep telling people of their heroism.

 Quote from the mom of a brave Warrior Princess:

 “My warrior princess is kicking butt this morning! She guzzled down her first prep in record time-like less than 10 minutes flat! Her IV went in smoothly with little fuss, and now her second prep is going down-a little slower, but she’s working on it! Next up-CT scan-and she’s a pro!!!! ♥”

 Quote from Patrick Doughtie, father of Tyler:

“Seven years ago, almost to the minute, I lost one of the most important persons in my life… my son, Tyler. As I reflect on how beautiful of a person he was, his gorgeous smile, his athleticism, his love for God, his family and people he met, I find myself smiling and thanking the Lord for the time that I did have him. I know he had a purpose here and he served the Lord well then was called home. So many things have changed since that day, some I regret but I find myself in a happy place today. I know that without going through what I did with my son, I wouldn’t be the person I am today. Though it was difficult getting to where I am, it’s been worth it knowing the lives he changed through his life and even through the movie God allowed me to share. I’m waiting for the day I’m able to join him, though I pray I have many more years upon the earth to do God’s will for my life!”

 If you have seen the movie, Letters to God, you know Tyler’s story.

 Each child’s story is unique. Each child’s story matters.

 These are our children. This is our problem.

 Who will choose to be heroes for them?

 Hero opportunity:

 Send emails to your Members of Congress to support specific legislation:

HR 3737 the Unlocking Lifesaving Treatments for Rare Diseases Act or ULTRA
S 606/HR 3059 the Creating Hope Act
Rare Disease Congressional Caucus

Each Child has a Story that Matters

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Intelligence and Awareness– Two Different Things

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

“If we are to teach real peace in this world, and if we are to carry on a real war against war, we shall have to begin with the children.”                                                                                                                          ~Ghandi

 Each time I speak at a book club, I learn something new. Last Friday’s Book Club for AAUW (American Association of University Women) was no exception. This is one thing I learned: if a woman is highly educated, it does not necessarily mean that she knows anything about childhood cancer. One woman admitted to me that she had wiggled and struggled to get out of reading my book because the subject of childhood cancer is not one she wants to explore. She then admitted she was very glad she did read it. She went on to ask excellent questions, even giving me multiple opportunities to explain that when children are diagnosed with cancer, 80% have advanced stages of the disease. They were dumbfounded when I told them that this figure is only 20% in adults—because adults are much more aware and those who treat them are as well.

Their intelligent minds went on to develp another important question, “What causes childhood cancer?” I will bet that most Americans can tell you what causes cancer in adults. I will further bet that most Americans cannot tell you what causes cancer in children.

Top medical professionals cannot tell us what causes cancer in children, so how would anyone else know? I answered their question by telling them the truth, “We do not know what causes any of the twelve major types of childhood cancer. We just don’t know.”

This is one huge reason why we need to pour money and time into childhood cancer research. I learned yesterday about Gabrielle Sassin, who is raising money for St. Jude Children’s Research Hospital in honor of his sister, who is a survivor.

“My son is participating in the math-a-thon to raise as much money as he can for St. Jude in honor of his big sister a cancer survivor and many others just like her. He only has 2 more days left, Will you please help him in his effort, each day he comes home from school he asks me to check his page, it would be really awesome if I told him he made it to $300 today:) Here is the link to his page, if you cannot donate anything please share his link, at least go check out his page because he feels very important and cool to have a page of his very own. Here is the link….”

https://waystohelp.stjude.org/sjVPortal/public/displayUserPage.do?programId=551&eventId=288156&sectionStyle=subMenuTwo&userId=792250

This reminds me of how Lily Nunn shaved her head to raise money for St. Baldrick’s to honor the memory of her brother, Max. When I see young children acting for the benefit of other children in need, it gets me. It really, really gets me. Instead of claiming their “right” to be a carefree, self-centered kid, they decide to turn the care in their hearts into more than just care.  Instead of being carefree, these special children give their care freely.

When I see children leading the way to work for good, creating hope, and shining like brilliant examples of goodness, I feel blessed. Kids like this give the rest of us a good rep!

Thank you to all the Little Hope Creators.

 

I think this doggie needs to be a Therapy Dog!

 

 

 

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Spark Lighters

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

“There can be no keener revelation of a society’s soul than the way in which it treats its children.”                                                    

~Nelson Mandela, former president of South Africa

 It is a good thing when we are reminded of the importance of human life and the importance of living our lives the best we can live them. Daily life has a way of running us into ruts where we discontinue maintaining our concern for other humans. Then, we lose a bit of our own humanity. It takes a spark to get our humanity back. Gradually, we see our fellow humans clearly. We see their needs, their sorrows and their suffering. Because we have that Spark, we see our part, our purpose, and we move forward with purpose to make change.

One huge Spark in my life has been a seven year-old boy (who should have turned nine on February 6th) named Max Nunn. The day I saw his face and heard how he was bravely fighting brain cancer, I fell in love with his heart. I fell in love with a little boy named Max. I watched how, at seven years old, Max raised money for St. Baldrick’s & pediatric cancer research, “Two Bucks” at a time. I don’t think a day ever goes by that I don’t think of Max.

Following a child who is fighting cancer on Facebook or CaringBridge helps educate us about what kids and their families are facing. There is so much we can learn. Our hearts will grow, not shrivel.

Some Facebook sites:

Braden’s Army

Emmalee’s Angels

1,000 Candles for Baby Reef

Anjali’s Army

The Spark can even spring moments of laughter from where there is utter chaos.

In this video, a toddler with cancer laughs for the first time after chemo. I am grateful for the Spark someone lit inside of him!

I believe when you watch the video… this little boy will light a Spark inside of you.

Oh yes, he lit my Spark, he did, just like my buddy, Max.

I love this photo of Max. The SPARKle in his eyes gets me every time!

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What if I’m Not Taylor Swift?

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

With all of the excitement this past week about Taylor Swift asking eighteen year-old cancer patient, Kevin McGuire, to be her date for the ACM Awards, I hope that our excitement will lead us all to look inside ourselves and ask what we have, personally, to give. I mean, what if our mere presence does not elicit the excitement that Taylor’s does?

What if I am not Taylor Swift?

I am so happy you have asked. We can do plenty. Remember the four-year old boy named Kyle who needs a bone marrow transplant and is looking for a match? If having an opportunity to directly save a child’s life appeals to you, please register with Be The Match. 10,000 patients need transplants, and only one half of those patients will receive one. The very generous woman below is in the process of donating.

Amanda Simas Giving Someone Life


 

This next story will inspire you; I bring you the example of Sean. Sean is not yet an adult, yet he is raising money for St. Baldrick’s in honor of his twelve year-old cousin, Maeve, who is fighting osteosarcoma. St. Baldrick’s funds more in childhood cancer research grants than any organization except the U. S. government.

Sean’s St. Baldrick’s Fundraising Page

For good measure, I am delighted—truly delighted– to bring you the final option I will suggest today.

You can fill a child fighting cancer with pure joy by making it snow!

http://triangle.news14.com/content/top_stories/654306/family-creates-snowy-scene-to-make-memories-with-young-leukemia-patient

How terrific it is to know we don’t have to be Taylor Swift in order to truly bring joy to children fighting cancer.

Time to get going now… to make it snow!

https://www.facebook.com/pages/Blake-Jordans-Miracle/140550415991818?ref=ts

Blake Jordan needs a miracle kidney

 

 

 

 


 

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