A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Childhood Cancer Survivor’

Making The Weak Strong

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

“Even the weak become strong when they are united.”

~ Johann Friedrich Von Schiller

Thank you, Mr. Von Schiller. I agree. Unification, to me, means each individual can bring their own specialty/resource to the group. Unification means strengthening of all our bonds. Most importantly, unification of the childhood cancer community will translate into less suffering and more lives saved.

Oxford Dictionary definition of Unification:

The process of being united or made into a whole

Doctors,hospitals, foundations, please accept this invitation to form a strong fortress of purpose along with this growing list of others.  Peter C. Adamson, M. D., Chairman of Children’s Oncology Group, has since joined this “Dream Team.”

Thomas Jefferson Memorial
Labor Day Weekend with The Truth 365

From The Truth 365 Website

 Arms Wide Open Childhood Cancer Foundation

Awareness Beads

Band of Parents

BASE Camp Children’s Cancer Foundation

Battle For a Cure Foundation

The Brad Kaminsky Foundation

Brooke’s Blossoms

Caleb’s Crusade Against Childhood Cancer

Candlelighters NYC

Children’s Hospital of Philadelphia

Children’s Oncology Group

Ethan Jostad Foundation

Get Well Gaby Foundation

Healing Hunter Foundation

I BACK JACK Foundation

Isabella Santos Foundation

Jessie Rees Foundation: Never Ever Give Up

Kaely’s Kindness Foundation

Kids of Childhood Cancer

Kids v. Cancer

Kyle’s Krew

Melina’s White Light

Memorial Sloan-Kettering Cancer Center

People Against Childhood Cancer – PAC2

Pierce Phillips Charity

Press On to CURE Childhood Cancer

Seattle Children’s Hospital

St. Jude’s Children’s Research Hospital

The Andrew McDonough B+ Foundation

The Coco Foundation

The EVAN Foundation

The Maxwell Lacewell Foundation

The Sierra Rayn Foundation

Tucker Arnold Foundation

United in Grace

Wonder Capes

 More keep adding to the list each day. By uniting all of our “pieces,” we can create a strong, productive “whole.” With The Truth 365 campaign about to begin, this is a brilliant opportunity for the awakening of our communities, our nation, and the world we live in.

Please join in unity.

“Alone we can do so little; together we can do so much.”

~Helen Keller

Could that be a Monument balancing on top of my head, with a car going through it?  Yes, thought so! 

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It Takes Two to Speak The Truth

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

“It takes two to speak the truth—one to speak and the other to hear.”

~Henry David Thoreau

September is National Childhood Cancer Awareness Month. This past weekend, I had the opportunity to participate in a project that is bringing together the entire childhood cancer community– a project I believe will change the future of childhood cancer. I remember my oncologist, Dr. Dan, explaining to me how the cure rates for childhood cancer have improved remarkably, because of the sharing of information through Children’s Oncology Group. I have since learned how there are multiple childhood cancer foundations working hard to raise money for pediatric cancer research, many of them started by families whose own child has fought cancer. By taking a stand alongside one another, we can have a larger impact, and make a greater impact faster. By joining together, we can learn and share The Truth.

The project, The Truth 365, seeks to create “One Voice” for all. In creating One Voice, we can “speak the truth,” creating the opportunity for individuals, private corporations, and for our elected representatives to “hear.” With all of my heart, I have hope that our Voice will not bounce off of numb ears and numb hearts. I want each one to accept a bit of responsibility when they “hear.”

The Truth is, childhood cancer research is overlooked and underfunded. The Truth is, childhood cancer researchers must spend many of their working hours applying for grants. I don’t want brilliant pediatric cancer researchers spending their precious time writing grant applications; I want them in the lab, finding causes and cures. Sadly, in the world of pediatric cancer research, this is The Truth. If funding for research is the greatest obstacle standing in the way of ending the suffering of thousands of children, what are we waiting for?

The Truth is, funding for pediatric cancer research is an extreme, high priority for us as individuals, as a country, and as a world. Let’s stand together for action now. Time is of the essence. Children are dying… seven each day in the United States alone.

This is a pledge to our children of today and a promise to children of the future. We are looking into the face of greatness here– greatness in the form of ending human suffering.

That is, our Baby Humans.

                                                                        Photo/Image by Mike Gillette

 

 

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Discovering the World — Make-A-Wish Hope Tour at the Grand Canyon

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

“Your work is to discover your world and then with all your heart give yourself to it.”


– Buddha

 

Without a doubt, one of the great joys of my Make-A-Wish Hope Tour was the opportunity I had to discover the world. I discovered more about the world of childhood cancer, about the patients, those who take care of them, about childhood cancer research, and about our healthcare facilities. I discovered new friends. Traveling by car, and seeing this country we live in, was a breathtaking education in itself! When Linda, my INCREDIBLE Make-A-Wish coordinator, told us that they would have to “put” us somewhere between Salt Lake City and Phoenix over a weekend, I had no clue that the place she would “put” us would be the Grand Canyon!

After a very long day of driving through sight after sight that drew our gasps, we approached the Eastern entrance of the Grand Canyon near the time of sunset. We had been driving through Navajo Land, and the circular huts we kept seeing had piqued my interest enough to Google them. (Yes, Google them!)

Make-A-Wish Hope Tour at The Grand Canyon

We pulled over at the very first look-out point after we entered the park, Desert View. No words or pictures, or anything Earthly could have prepared me for my first view of the Canyon. Rather than try unsuccessfully to re-capture my thoughts and feelings at the time…

Day 21 Video

Grand Canyon on the Hope Tour

We cried. Mom and I cried. We cried tears of joy for this place of unspeakable beauty before us. We cried tears of joy for life. We cried tears of joy for the love we have for each other. God’s presence and His love were overwhelming. Overwhelming.

Thank you again, Make-A-Wish, for giving me the opportunity to discover the world. I promise to give all my heart to it.

Thank you to Grand Canyon Squire Inn for our wonderful stay and for your kind support of Make-A-Wish!

From PA2 Events for September National Childhood Cancer Awareness Month...

http://curechildhoodcancer.ning.com/page/pac2-september-2012-national-childhood-cancer-awareness-event-cal?xg_source=msg_mes_network

 

 

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Hope Tour– Long, Winding Road as we Dance to the Music

 

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

 

 

 

“If you don’t know where you’re going, any road will take you there.” 

― George Harrison

 

 

If I had to choose the most spectacular drive of our Make-A-Wish Hope Tour, it would also be the day of our longest drive. It would have to be our drive from Salt Lake City to the Grand Canyon, a fourteen-hour day on the road. We left Salt Lake City early in the morning, with Herbert The HopeMobile loaded down with our freshly cleaned clothes. Mom and I were excited– really, really excited to see what wonders of nature were waiting for us to explore!

Although Bryce Canyon was a bit out of our way, there was no way we could drive past the sign pointing to the side road without turning. Mom had been there with her family when she was a teenager, and she had told me about the spectacular beauty. As we climbed out of the car and headed up a hill for our first view of the canyon, I had no idea what awaited me on the crest of the hill. It took awhile to fully comprehend that what I was looking at was real!

Bryce Canyon on Make-A-Wish Hope Tour

I watched the teeny-tiny-sized people hiking in the canyon below and wished we had more time here. I felt teeny-tiny. I felt like the whole entire world was spread out before my eyes to behold. I felt blessed to be standing there looking at a sight that appeared way too special to be viewed by mere human eyes.

Can You Hear the Music?

 

 

 

 

“And those who were seen dancing were thought to be quite insane by those who could not hear the music.” Nietzsche

A dear friend sent me this quote. I love it on so many levels that I don’t even know where to begin telling you how much I love it! Taken literally, it is a gorgeous way of explaining why dancers dance. Not only do dancers “hear the music,” but we need to dance when we hear it. Taken figuratively, this quote is a beautiful explanation for why there are growing numbers of people joining together to stop childhood cancer. They are people who “hear the music.” They are people who hear the call to “dance.” It makes no difference what type of “dance” they do, whether it is ballet, modern, lyrical, hip-hop, or jazz, as long as they “dance to the music.”

One extraordinary example of this is 46 Mommas. Someone with little or no understanding about the great need for childhood cancer research would look at these women who shave their heads to raise money for this cause and think that they were “quite insane.” Those who “hear the music” know that these women are not only much more deeply connected to it than the rest of us, but they are “dancing” as gracefully as they can to “the music.” These women who have a very personal connection to childhood cancer also have a clear understanding of the great need for swift, strong action. Their selfless “dance” — raising money by shaving their heads– helps those who are currently “deaf” to hear. It turns The Unaware into The Aware. Thank you to all of the “Mommas,” and to one “Sister,” Leah Mireles, for Shaving for the Brave and for raising money for St. Baldrick’s and childhood cancer research!

Road to the Grand Canyon

The Glory of Nature on the Hope Tour

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Unlocked Doors, Waiting to be Opened and Hope Tour in Boise

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

Everywhere I look I see doors….

and they’re all unlocked,

waiting to be opened 

My experiences of meeting doctors, nurses, social workers, hospital staff members, ChildLife specialists, patients, and cancer researchers during my Make-A-Wish Hope Tour gave me not only a snapshot of life for children with cancer in the present, but a vision of what needs to happen next. The “doors” we need to “unlock,” or in my best of visions, knock down completely, is the lack of funding for childhood cancer research. I realize we live in tough times, where funds for many services are lacking. When we speak about funding for childhood cancer, we are speaking of the number one disease killer of children in our country. We are talking about seven children each day in our country who are murdered by the ChildhoodCancerBeast. 

I was shocked to discover a while back that 3-4% of NCI’s budget is allotted to childhood cancers. From the American Cancer Society, 1 penny from every dollar of public support is targeted toward childhood cancers.

(For more information about childhood cancer–where funding goes and doesn’t go–I recommend PAC2)

What I know:

There are brilliant researchers who will find the causes and cures for childhood cancers, given the funding they need to do their research.

Can you tell that I am advocating for childhood cancer research?!

I believe we can do better for our children. I know we can do better. So why don’t we do better?

There is a serious lack of awareness about childhood cancer.

According to the supermarket tabloids and periodicals, childhood cancer is not something we need to concern ourselves with. If I could shout it from a rooftop—or even better—dance upon a rooftop to bring awareness about the great need for funding for childhood cancer research, I would. There is no known cause for childhood cancers, which means any child, at any time, can hear, “You have cancer.”

It could be your child, your grandchild. We should be concerned. We should be looking for causes and cures like it is the war it truthfully is. This is especially true, because I hear again and again that a cure is within our reach.

With adequate funding, a cure is within our reach…

And now… rewinding to Boise, ID on my Make-A-Wish Hope Tour…

Idaho Shakespeare Festival

Our drive from Kennewick to Boise was a beautiful journey. The Columbia River was a gorgeous sight that kept surprising us along the way. Herbert was feeling peppy, so he HopeMobile-ed us to Boise in about six hours. (I promised Mom I would drink more so I would not get dehydrated, which resulted in more potty stops!) Not long after we arrived at our hotel in Boise, we were back on the road again to attend an outdoor theater, the Idaho Shakespeare Festival where we saw Mousetrap. Go ahead, try to get me to spill the secret of the true murderer! Hee Hee… not me! This was a wonderful gift that Make-A-Wish planned for our Idaho arrival!

St. Luke’s Children’s Hospital

The next morning, Mom and I met Becky Wiskus at St. Luke’s Children’s Hospital. She greeted us warmly, and I had the opportunity to speak with staff and patients, and get a tour of their facility. They surprised me with a very, very special gift. They gave me a calendar made from the drawings of their patients! I don’t think it gets any more special than that!!!

My Very Special Calendar from St. Luke’s Children’s Hospital

At each hospital I have visited, I always love hearing about the unique ways that the staff has of making life better for their patients. At St. Luke’s, it was obvious to me that they see their patients as “whole people,” not just treating the illness, but treating all that the illness encompasses.  I loved my time here, and I hope I get the opportunity to return in the future.

With Colin, the schoolteacher, in the St. Luke’s schoolroom

Feeling the love at St. Luke’s Children’s Hospital

One final Hope Tour adventure filled our day in Boise. Mom and I met Trevor Schaefer from Trevor’s Trek Foundation. Trevor survived a brain tumor as a young teen and has been fighting back against childhood cancer in many ways. We talked about his advocacy, my advocacy, and ways we might work together in the future. One very, very interesting thing that Trevor is working on is “cancer clusters.” I look forward to learning much more about Trevor’s work with Barbara Boxer on locating cancer clusters. I loved meeting you, Trevor! I send you my very best wishes for all you are doing!

Trevor Schaefer of Trevor’s Trek Foundation

Thank you to the Hampton Inn in Boise for supporting Make-A-Wish!

Hope Tour Video Day 16

http://www.youtube.com/watch?v=9GfUdUSse6A

 

 

 

 

 

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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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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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