A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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

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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Rewinding the Hope Tour to Day 9: Make-A-Wish Surprises in Seattle

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

 

 

 

 

 

 

 

 

 

“No vision and you perish; No Ideal, and you’re lost; Your heart must ever cherish some faith at any cost. Some hope, some dream to cling to, some rainbow in the sky, some melody to sing to, some service that is high.”

Harriet Du Autermont

Herbert the HopeMobile has arrived back in Nipomo after traveling 4, 260 miles around the Western United States. So much was “packed” into the 28 days of my Make-A-Wish Children’s Hospitals Hope Tour that it was impossible to share it along the way. It looks like I left off in Seattle, so I will rewind!

I want to begin with thanking Make-A-Wish AK/WA and Meredith…

Meredith at Make-A-Wish Alaska/Washington

How can I ever thank Meredith and everyone at the MAW AK/WA office? My week in Seattle was filled with opportunities to bring awareness for childhood cancer and HOPE for kids who are fighting. It means the world to me that Make-A-Wish understood my wish; they did everything and more to make it come true! After a tour of the Seattle office, Meredith surprised me!!!

Make-A-Wish AK/WA surprises Melinda!

http://www.youtube.com/watch?v=OKw21slTyzQ&feature=youtu.be

Meredith and Make-A-Wish kept surprising me all week long! 

Make-A-Wish AK/WA Surprise

The surprises included visits with Dr. Sangeeta Hingorani and Dr. Jean Sanders.

With Dr. Jean Sanders

Dr. Jean Sanders

I have a hard time finding the words to explain what it meant to me to be able to speak with Dr. Sanders. It was just hours before her retirement party, but she made time to speak with me, “the Make-A-Wish girl who wants to be a doctor like you!” I feel exactly the same about my time with Dr. Hingorani. I feel fortunate, and I feel blessed, to have spent time with each of them. I wish I could just take one deeeeeeeeeeeep breath and inhale all of their wisdom and knowledge so I could use it to slay the childhood cancer monster. Believe me, I tried! In all sincerity, my time with them made me even more determined about my future. My time with them inspires me to work hard. Again, without the hard work of Meredith, and Make-A-Wish, this would not have happened!

It’s true. I am not going to lie. The Hope Tour set out to bring hope to others, but everywhere we went, we found hope.

I look forward to sharing more about the Hope Tour…

Dr. Hingorani

Thank you to Sheraton in Bellevue, WA, and to Hyatt at Olive & 8th for supporting Make-A-Wish!

Making New Friends at the Sheraton in Bellvue, WA

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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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Oakland Children’s Hospital to Randall Children’s Hospital to the Space Needle on the Hope Tour

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

 

 

 

On Wednesday, June 20th, I visited Oakland Children’s Hospital. Their social worker and child life specialist, Wendy and Suzanne, kindly met Mom and I in the lobby and gave us a tour of the hospital. What will always stand out about my time at Oakland Children’s is the time I spent with Tate and Carina… two very brave and strong children who have just begun treatment. The term “meaningful” falls far short of what it means to me to be able to give back to these children what a survivor named Rachel did for me when I was at the beginning of my treatment. To see Rachel healthy, happy, and radiant, made me realize what my goal was. It made me realize my goal to get well was possible. It made me HOPE that I would one day be able to pass on the HOPE she gave to me. At that terrible time in my life, I needed HOPE.

Wendy and Suzanne at Oakland Children’s Hospital

Day Four Hope Tour Video

http://www.youtube.com/watch?v=nLfCPt6YdJ0

Mom and I hopped into Herbert the HopeMobile when we finished at Oakland Children’s Hospital and pointed him north, in the direction of Oregon. I have never been to Oregon before, so I was excited to see what it was like. We had a long drive through very hot California farmlands before we finally began seeing trees and snow-capped mountains. As we neared the no-man’s-land in the sweltering farmlands, Mom thought it would be best if we made a “Potty-Stop” before there were no more potties to be found. As a rule, we usually avoid the dreaded gas station potties, but when they are the only choice… you have to go for it! The man behind the counter gave me a bit of the willies, but I gathered my courage and asked him for the key. We discovered the bathroom outside, and turned the key with the long pipe attached before entering. Unfortunately, as hard as I tried to pull the key from the doorknob, it would not budge. Can you picture me with one foot on the door, one on the ground, and both hands pulling on the key as hard as I could? We ended up walking back in to Mr. Willie, apologizing for getting the key stuck in the door… and we were off once again.

Happy to be in Oregon!

What a welcome sight Mt. Shasta was, and what a welcome sight Medford, Oregon was, after a long day. In Medford, we had quite the challenge navigating. There were lots of loopy roads! The air was filled with fluffies—I believe they were from trees. The parking lot of the Rogue Regency Inn (who very generously provided our complimentary hotel room) was filled with a huge variety of cars from a car show.

The next morning, we were up and on the road again, on our way to Portland. It was a beautiful drive. One thing I learned about Oregon that I never knew before is that it is against the law to pump your own gas. Thank you to Make-A-Wish for alerting us to this; there is a $10,000 fine if we pump it ourselves! My cousin, Kylie, lives in Portland. She picked us up after we arrived at our hotel and gave us a tour of the city. Thanks Kylie for all of the laughs and all the fun we had together!

In Portland with my cousin Kylie

We rose early on Thursday morning to meet Kemp from Make-A-Wish and Maegan, Public Relations Specialist from Randall Children’s Hospital in Portland. Randall Children’s Hospital is a brand new hospital that just opened, and I was amazed by all they have done to make the hospital a great place for kids. There were school rooms, little sleigh-like wagons, places for families to gather, and even a work-out room. In my tour of the hospital, I was delighted to meet several pediatric nurses who had recently shaved their heads to raise money for St. Baldrick’s and childhood cancer research. Once again, visiting with the children was the very best part of the day. Maegan arranged interviews with two TV stations and a radio station. I am grateful to the media in Portland for bringing attention the outstanding work at Randall Children’s Hospital and for helping to raise awareness about childhood cancer.

Thank you to Kemp from Make-A-Wish Portland

Randall Children’s Hospital in Portland

http://www.kptv.com/video?autoStart=true&topVideoCatNo=default&clipId=7435535

On June 23, we hit the road again. Herbert the HopeMobile drove through the rain northward to Bellevue, Washington where we checked into our hotel. It was one of those “comfy car” days, where Mom and I decided we needed to wear sweats that were as close to jammies as we could possibly get! Sheraton Bellevue provided our complimentary two night stay.

Thank you to Make-A-Wish and to the Space Needle for a delicious meal with Joey, Jane, Madisen, Chelsea, Mom, and missing Caitlyn and Kim.

The incredible Make-A-Wish of Alaska/Washington has been working very, very hard on my wish. On our first full day in Washington, we dined atop the Space Needle with my cousins, Jane, Chelsea, and Caitlyn, and with long-time friends, Joey, Madisen, and Kim. The Space Needle went all out—not only providing an incredibly delicious meal, but also surprising me with a huge bag of Space Needle souvenirs! I loved our time together, and I am SO grateful to the Space Needle staff for their generosity! After our meal, we went out to the observation deck. We were very, very fortunate to have good weather, with a view that will stay in my mind’s-eye and in my heart for the rest of my days. The fun was not over. Once we descended, there was great entertainment—it was the day of the Pride Parade in Seattle that began and ended at the Space Needle.

View from atop the Space Needle

Before I close for today, I want to thank Kemp and Maegan from Portland, for believing in my wish and for all of their kind and thoughtful support.

I found Ballerinas at the Pride Parade!

 

 

 

 

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Hope Tour– Lucile Packard Children’s Hospital

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

 

 

 

Make-A-Wish Hope Tour brought Mom and I to Lucile Packard Children’s Hospital at Stanford on Tuesday. Each hospital visit is unique and wonderful in its own way, and my visit here is one I will always remember. Their social worker, Analisa, met Mom and I in the lobby and escorted us to a lovely and touching surprise. As we rounded the corner to the auditorium where I would be presenting to staff members, we were greeted with brilliantly colored balloons and a beautiful array of refreshments for the event. As we neared the tables, it became more apparent that the staff had outdone themselves in their preparations for my arrival.  There was a cake that was shaped like a book, and it had a quote from my book written on it! There were dozens of cupcakes that had ballerinas and pointe shoes on top! What a beautiful welcome!

 

Grace Cake at Lucile Packard Children’s Hospital

Ballerina and Pointe Shoe Cupcakes at Lucile Packard

In the auditorium, I had the opportunity to share my story with pictures and video for the staff. After I was finished, there were great questions. It was obvious they wanted to understand as much as they could so that they could better serve their patients. Afterwards, we enjoyed the cake and cupcakes while I signed books for those who attended. When we finished, their Child Life Specialist, Jacob, gave Mom and I a tour.

Speaking at Lucile Packard Children’s Hospital

 We ended the day with a mile hike through the redwoods in Half Moon Bay. What a wonderful day! Thank you to everyone at Lucile Packard, and a special thank you to Linda from Make-A-Wish Greater Bay Area. 

As each day passes on the Hope Tour, I feel more and more blessed.

Gratitude for Life!

 

 

 

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JW House– Hope Tour Day 2

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

 

 

 

During my amazing Make-A-Wish Presentation Party at Panera Bread in Santa Maria, one of my friends, Jenna, suggested I make daily videos on my month-long trip.

 

Jenna, I love your idea, so…

 

 

 

 

Hope Tour Day 1

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

As Mom and I approached our hotel destination on our first day of travel, we began passing signs that I have seen a gagillion times before on the 101. “Winchester Mystery House” Every time we drive by, there is never time to explore “the mystery!” This time, we realized we actually had time to stop, so we did. I had heard stories of how Mrs. Winchester continuously added on to her mansion. There are doors and stairways to nowhere that were built to confuse “spirits” that were haunting her. She believed it was caused from all of the people who died from Winchester rifles.

The highlight for me of the tour was not seeing the house (although it was quite mysterious,) but the highlight was meeting a boy named Steven in our tour group. Steven is an adorable boy who just had a heart transplant; he was wearing a surgical mask and a Make-A-Wish t-shirt! This was truly remarkable that we should end up in the same tour group—Steven with his Make-A-Wish shirt and Mom and I with our Make-A-Wish buttons!

My Wish Buddy Steven

Day one of the Hope Tour continued to be remarkable. After we arrived at our hotel, we began a search for dinner. After an exhaustive search of neighborhoods and viewing restaurant menus in San Carlos, we decided on a restaurant named Town. It was a very busy place, with no available tables for an hour… that is, unless, we wanted to sit at the bar and order food there. Next thing we knew, there we were, bellied up to the bar and ordering food. Mom got up from her seat and took a picture of me from the other side of the bar. The man next to her kindly offered to take a photo of both of us. She thanked him, and came back to our seat.

When the time came to pay our bill, the waiter told us, “The man across the bar paid for it.”

We were close to tears. This gesture of kindness touched both of us deeply. Before we left, we thanked him.  I learned something from this man; I will always be grateful for the lessons he taught me with his actions. His name is Tim Leary.

Ann Marie and JW House

Day Two of the Hope Tour brought more surprises. We went to JW House in San Jose. What an amazing place this is for families who have children at Kaiser Permanente! This incredible oasis for children and families who are going through horrible times was developed from the dream of a boy named JW. JW fought leukemia at four and passed at fourteen from a brain tumor. What an incredible person! We loved our time there with all of the volunteers, and we felt especially blessed to meet and talk with JW’s mom, Ann Marie.

                                                                    http://www.jwhouse.org/

After our time at JW House, we went to the pediatric floor at Kaiser and visited with Jennifer and Natalie, two of the pediatric oncology patients, and got a tour of the pediatric ward.

Hope Tour Day 2

http://www.youtube.com/watch?v=pHndDgEBk5g&feature=youtube_gdata_player

JW… I look forward to meeting you— when the time comes– on the other side…

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Children’s Hospitals Hope Tour- My Make-A-Wish

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

 

 

 

 

Last Tuesday, Panera Bread in Santa Maria generously hosted my Make-A-Wish presentation party. When I walked in, there were beautiful decorations, a lot of delicious food, and loving people who were there to help me celebrate my wish. Thank you to everyone at Panera, to Cal Poly Sorority Chi Omega (they adopted my wish and raised money,) and to all of the staff at Make-A-Wish for your love and support.

                               

Staff at Panera Bread in Santa Maria, California

Thank you for hosting my Make-A-Wish Presentation Party!

Make A Wish Party Panera Staff

 Chi Omega from Cal Poly, San Luis Obispo, thank you for all of your fundraising work!

I want to send out a huge thank you to Linda from Tri-Counties Make-A-Wish for believing in my wish, and for your hours of work in support of my heartfelt wish to help children with cancer. Linda has believed in my mission, and has been working on my wish for a very long time. More to come on Lovely Linda…

Thank you to Chi Omega Sorority at Cal Poly San Luis Obispo!

Mom and I picked up our rental car on Saturday and began the loading process—boxes of books for the children, cases of water for the road, and just a few belongings for our month-long journey. Last year, we named our rental car Hugo the HopeMobile, so this year, of course, we needed to name our travel vehicle. A car name is not something you can pick out before you “meet” the car. So, after we had driven about thirty miles, up the Atascadero Grade, “his” name came to us. It fits perfectly. Our vehicle has been lovingly named, Herbert the HopeMobile. When we are feeling especially affectionate, we call him Herbie the HopeMobile. Herbert is adorned with childhood cancer awareness signs—he is one decorated box of hope!

 Yesterday was our first day of the Hope Tour. We left home at 9 a.m. on the dot, and as we turned the corner off of our street and onto my Gramma and Poppy’s street, there was something we could see up ahead of us. As we made out what it was, we began to laugh… Poppy was standing by the side of the road holding a sign, “Go Car of Hope!” What a great surprise, and what a beautiful and loving send-off my grandparents gave us!

Poppy and Gramma give us a surprise send-off!

Poppy and Gramma with loving send-off wishes for the Hope Tour!

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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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