A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Make-A-Wish’

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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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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Share Dreams and Wishes with Kevin and Owen

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

As thoughts of Kevin McGuire and his second battle with leukemia raced through my mind today, I also thought of Taylor Swift and her incredible act of kindness in asking Kevin to attend the ACM Awards as her date. I am still awestruck by how fast word spread through Facebook, and I want to thank each one of you who took the time to like his page and pass on the request. I admit that I rarely watch TV, opting to dance every night instead, but I will be sure to have myself plunked in front of the television on April 1st so that I won’t miss a moment of “Kevin & Taylor” coverage!

Along with thoughts of Kevin today, I also thought about Owen McMasters. Owen and Kevin have something in common. They are both in need of the drug methotrexate for their treatments—the medicine shortage we have been so very concerned about.

Owen and his parents spoke with Sanjay Gupta on CNN about their concern over the shortage of methotrexate.

Owen has decided for his Make-A-Wish to wish that children will be able to receive the life-saving drugs that they need to live. What a heroic, loving, and generous wish! Yet, there is something very, very wrong when a child needs to use his Make-A-Wish so that children can get the medicine they need to live.

Shouldn’t this supply problem already be taken care of by responsible adults?

St. Baldrick’s gives us an update on the current shortages of drugs used to treat childhood cancer.

When we are speaking of a child’s life or death need for medicine, we must ask ourselves, who is responsible for making certain that each child who needs medicine will receive it?

Let’s all take responsibility; let’s make Owen’s wish come true.

“But how?” you ask.

Let’s make Owen’s wish come true the same way that everyone helped make Kevin’s dream date come true…

Please speak up and spread the word!

Owen McMasters

 

 

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Will the Real “Santa” Please Stand Up?

When people tell me, “I hope you get everything you want for Christmas,” I know they mean well and that their words come from love. What I really, really want is not a thing. And I know all of you who follow my blog know exactly what it is that I want. Could it be the same as my Make-A-Wish?

Today, in Panera, I noticed a collection box for Make-A-Wish, and it was stuffed with bills and coins. It made me smile to think how eager people are to support Make-A-Wish for all of the work they do to help children with life-threatening illnesses. It made me think about how there is no amount of money that people can give to Make-A-Wish that will make my wish come true.

My wish depends upon the answer of one person– Oprah.

What I want more than anything is for Oprah to help educate people about childhood cancer. With one show, she could save many children’s lives… it may just lead to a cure.

My “Santa” looks exactly like Oprah. It’s okay that I don’t know what is in the big bag yet.

I am praying… praying for that Christmas miracle to come true.

Cottage Hospital Gingerbread House

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Barry Eva Chat and Magnificent Make-A-Wish

I enjoyed chatting today on Blog Talk Radio with Barry Eva. I absolutely love his voice and the way he speaks! What a lovely and gracious host he is; I had such a good time! He obviously took time and effort to prepare for the interview so that he was able to ask great questions. I hope that listeners learned something about childhood cancer, and I hope that Barry enjoyed meeting me as much as I enjoyed meeting him. I think I might have to start working on my own radio show so that I can invite Barry to have a chat with me! I would like to ask Barry some questions of my own:)

http://www.blogtalkradio.com/across-the-pond/2010/12/02/a-book-and-a-chat-with-melinda-marchiano

 Guess who called yesterday with an update? My amazing Make-A-Wish person, Stefanie, called! I realize that my wish will take awhile to process before I will hear anything, and Stefanie is very thoughtful to let me know that they have not received an answer yet. I truly appreciate the kindness of Make-A-Wish Foundation in helping make this passionate wish of mine come true.

With all of my heart, I know that if my wish is granted, at least one child’s life will be saved.

At least one life. That one life is worth everything I am working for and more.

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