A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for June, 2012

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!

 

 

 

 

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!

 

 

 

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…

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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