A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Hope Tour’

A Wish Is…

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

A wish is…

 a hope, and a dream, and a leap of faith. One act of love can make it come true.

~Melinda

With summer 2012 fading into the sunset, I find myself with my first two weeks of college behind me. I love it here at Pepperdine! Before time rolls on, I want to complete my Make-A-Wish Hope Tour Story. I believe I left off at the Grand Canyon, which brings us to our time in Phoenix.

I will probably always chuckle when I recall our time in Phoenix. What makes me laugh is remembering waiting for our “shuttle” in the hotel lobby on our very first morning there. Our itinerary showed that a shuttle would pick us up and take us to Phoenix Children’s Hospital. We saw that there was a hotel shuttle out front and then noticed that the shuttle driver was scurrying around in the hotel. As we waited for the driver to finish his business in the lobby, an enormous white limousine—with a big blue star that said, “Make-A-Wish,”– pulled up alongside the shuttle.

Could it be that there is another “Wish Kid” here?

Could it be that that is for me?

Is THIS the “shuttle”?!

I was equally delighted by our ride as by our driver, Modjtaba. What a wonderful man, with a beautiful way, and what an enormous number of children he must have delighted throughout his many years of service to Make-A-Wish!

My “shuttle driver”, Maja

My special thanks go to Jamie, Teri, and Allison at Phoenix Children’s Hospital, and to Rachel and Jennifer from Make-A-Wish.

With Rachel Jimenez from Make-A-Wish

Speaking at Phoenix Children’s Hospital

While I was at Phoenix Children’s, I was able to speak with patients and staff, have visiting time with patients, and was able to take a tour of their brand new facilities. The cafeteria at Phoenix Children’s Hospital wins my personal grand prize (thank you for lunch, Allison, and thank you to Jennifer from Make-A-Wish, Phoenix, for all your hard work!) One more of the many things I love about Phoenix Children’s Hospital, is that they have a therapy dog program! What would I have done without the therapy dogs at Cottage Hospital?!

I love therapy dogs! Phoenix Children’s Hospital

The staff was exceptionally kind and caring. I loved meeting each of them. You would imagine that anyone who would choose the field of caring for children with cancer would have qualities of gentleness and compassion, and this is exactly what I found at each of the hospitals I visited on the Hope Tour. I have within me even more respect, even more gratitude, for each and every worker who helps the children than ever before. Each of their jobs is important in the lives of the kids.

With Teri Lane at Phoenix Children’s Hospital

I want to hug them all! Phoenix Children’s Hospital

Ashton getting ready to go home!

Thank you for what you do!

Hope Tour Video Day 24

Hope Tour Video Day 24 Part II

Day Two in Phoenix brought more surprises. I was very excited for this day. I knew from our schedule that we would be meeting Elizabeth Reich, President & CEO of Make-A-Wish Foundation of Arizona, and David Williams, President & CEO of Make-A-Wish. All I could think about was how I could ever express my thanks to them. How could I ever tell them what Make-A-Wish has done for me? How could I thank them for all that Make-A-Wish does for children with cancer?

These thoughts stilled swirled about in my brain as Mom and I entered the Ritz-Carlton in Scottsdale to meet them for lunch. It’s a good thing my brain was swirling a bit, because I was totally unprepared for what awaited us as we entered the beautiful building. As the doors opened, I noticed the staff was standing on either side of me, forming a path for me to walk through. And they were clapping.

Melinda Food at The Ritz-Carlton in Scottsdale

The swirling of my brain escalated, as we entered an elevator with Elizabeth and David that opened its doors to a room filled with my favorite foods! Really! Chef Jeff (I love saying that!) greeted us and then gave us a tour of the gourmet delicacies that awaited our lucky taste-buds. The food was delicious beyond word-description. It included a frozen yogurt for dessert (with berry topping!) that I swear had to come straight from the cow.

Lunch with David Williams and Elizabeth Reich– Chef Jeff at the Ritz-Carlton in Scottsdale

I loved meeting and talking with David and Elizabeth. I could have enjoyed their company all day long, and if there was room in my tummy, I could have enjoyed the food all day long! I send my sincere thanks to everyone at the Ritz-Carlton for everything! When we finished our lunch, we headed across the street to Make-A-Wish Headquarters. With this stop near the end of my Hope Tour, I had so much to thank everyone for that I could hardly wait.  

With Elizabeth at Make-A-Wish Headquarters

After speaking with everyone and signing books, Mom and I had a tour. I loved meeting everyone at Make-A-Wish. I was touched by the love in everyone’s hearts. I was touched by the photos on the walls of other Wish Kids.

With Frances and Jennifer at Make-A-Wish Headquarters in Phoenix

To anyone who has ever worked for or supported Make-A-Wish, I need to thank you. You helped grant so much more than my wish. You sent love into my heart and into the world.

Thank you!

Thank you Make-A-Wish!

 Hope Tour Video Day 25

 

 

 

 

 

 

 

 

 

 

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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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Make-A-Wish Hope Tour Meets Dr. Josh in Utah and Hope for Talia

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

How do I ever thank

Make-A-Wish?

The Hope Tour was so much more than a wish come true. It is memories to last a lifetime, and seeds of hope planted that I hope– in my lifetime– to see sprout into flourishing research that will bring an end to the suffering of children with cancer. 

Yes, Mom and I were “those crazy people” at the side of the road who stop to take photos at the state sign. Hee hee, we would try to anticipate the sign coming up, and we were only disappointed one time. Although we looked and looked, there was no sign that welcomed us to Washington. How could this be, when Washington was so welcoming for the Hope Tour?! We did drive right past one state sign and decided to turn back for a photo. No, it was not this one, it was Arizona!

Utah!

By the time Day 17 of the Hope Tour rolled around, I admit I was sleepy… really sleepy after the drive from Boise. As we got closer and closer to Salt Lake City, we could see there was a big fire in the mountains ahead. When we arrived at our hotel, we turned on the news to discover that the fire we had been watching develop was being called “The Quail Fire.” Really? Did you know that my nickname is The Quail?

I managed to extract myself from the bed that was calling my name to make…

Day 17 Hope Tour Video

The Quail Fire Greets us as we arrive in Salt Lake City

Fourth of July in Salt Lake City Hope Tour Video Day 18 Trying to show you fireworks!

Hope Tour Video Day 19 You never know who you will meet!

Salt Lake City is the home of Dr. Josh Schiffman. Dr. Josh was my “substitute doctor” for my fourth round of chemo at Cottage Hospital. I will never forget how he stepped into the unknown path of what he would face with Melinda and how he was genuine, caring, and he even went to the place of MelindaSilliness that I really, really needed at that time. Dr. Josh even wore a crown for my last hospital chemo party. Yep. What a guy! When I thought about who would be the very best person who could write a foreword for my book, my mind immediately went to Dr. Josh. Dr. Josh survived Hodgkin disease as a teenager. Dr. Josh is a pediatric oncologist. Dr. Josh is doing incredible research at the Huntsman Cancer Institute that is looking at genetic factors involved in, not only curing childhood cancers, but in detecting pre-existing conditions that will tell us if a child is more at risk for certain types of cancer. It’s horrifying when I hear over and over and over again how late cancer is detected in children. Can you imagine if we could actually have preventative tests and diagnostic measures to nip cancer in the first place? 

I left Dr. Josh’s house with my mind full of possibilities for the future of treating children with cancer, with my heart full of new-found loves after meeting Dr. Josh’s adorable children, and with my belly happy from a delicious meal prepared by Dr. Josh’s gracious wife. 

With Lily and Dr. Josh in Salt Lake City

My Mom’s Uncle Bruce had a wise and wonderful talk about The Dirty Laundry Pile of Life. It was his way, as a minister, to advise my mom and dad before marriage about life not being A Bed of Roses all the time. Well, life was no different on the Hope Tour. After over two weeks on the road, The Dirty Laundry Pile of Life was taking over Herbert the HopeMobile. Yes, I really did do a daily video from Liberty Coin  Laundry in Salt Lake City. Not only did I do a video from this lovely location, but Mom and I also called Poppy and sang Happy Birthday to him. The raised eyebrows from those waiting for their own laundry were more of an amusement than a deterrent!

Hope Tour Day 20 Part I Yes, I am doing laundry!

Liberty Coin Laundry in Salt Lake City

No, not Santa Claus

 

 

 

 

 

 

 

 

Day 20 Part II Time with Dr. Josh and family

I cannot end this post without fast-forwarding to the present to tell you about Talia. 

“Talia is a 12 year old girl who loves fashion, dancing, her family & her doggie Bella. She is fighting Neuroblastoma Cancer.”

From Talia:

 “Okay so I have two cancers in my body at once. Well pre leukemia wich is a start of leukemia in my bonemarrow. There are not realy any treatments for it. Its very rare to have neuroblastoma and leukemia at the same time. The doc wanted to do a bonemarow transplan but they said it will be the hardest thing I have done. Also we could do a vacseen. But all of these are very very low chances of me surviving. In the mean time while we wait to find the next step they r puttin me on a low dose of oral chemo to make sure my cancer doeznt grow. The docs gave me the option of doing treatment or dont do the treatment and just live life for the time remaining. Having cancer has been an amzing yet horrible journey but ever journey has an end. Im tired of doing shit to my body, my friends, family, nabers, pets… I will enjoy every minute I have with the world. Docs said maybe a couple mounths to up to a year left of preshious life. I told both parents I dont want them to hold anything bak if u they something tell me. Doesnt mean I aint scard as fu**! I love u guys ♥”

As those who love and support Talia read this post, we do not want to believe this bad news. If you have not liked her Facebook page yet, “Angels for Talia,” please do!

https://www.facebook.com/angelsfortalia

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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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Awareness for Childhood Cancer and Hope Tour in Kennewick, WA

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

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

From his Caringbridge site:

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

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

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

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

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

Kennewick General Hospital Welcome

Kennewick General Hospital Cupcake Welcome

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

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

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

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

KVEW TV Kennewick, WA 7/1/2012

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

Kennewick, WA 7/1/2012

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

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

Tacoma The Tribune News 7/1/2012

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

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

Idaho!

Hope Tour Video Day 15

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

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Hope Tour at Seattle Children’s Hospital

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

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

Copyright/Melinda Marchiano

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

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

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

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

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

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

Speaking with residents at Seattle Children’s Hospital

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

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

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

Duncan Stole My Heart

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

Bye Meredith!

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

Day 13 Part II Hope Tour Video:

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

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Hope Tour Receives Hope from Dr. Lee Hartwell

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

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

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

From Wikepedia…

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

Dr. Lee Hartwell!

Time with Dr. Lee Hartwell–

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

Fred Hutchinson Cancer Research Center and Dr. Lee Hartwell

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

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

Hope Tour Day 13 Video Part I

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

 

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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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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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