A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for August, 2012

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

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

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

 

 

 

 

 

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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