A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Children’s Hospitals Hope Tour’

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

 

 

 

 

 

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!

Children’s Hospital of Atlanta, Aflac, and Carl Edwards

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

The wild storm held off just long enough for us to reach our hotel in Atlanta before it busted loose with strong winds and buckets of rain. The drive from New Orleans seemed to go quickly as we drove over Lake Pontchartrain; it was enormous and beautiful in the early morning sun. The hurricane damage to the trees is still very evident in areas around the lake. Before we knew it, we were already through Mississippi and on the tree-lined interstate driving through Alabama. One very odd thing we noticed about Alabama was there was not one bird in sight. They must have been hiding in the trees!

Georgia was a surprise. I did not expect the beautiful streets that had tree branches laden with leaves covering them. It felt cozy and comfortable.

We met Jessica from Children’s Healthcare of Atlanta early in the morning. We discovered that parking around children’s hospitals can be challenging, but Jessica very kindly met us out in front to offer us up-front parking. We discovered that kindness is just one of Jessica’s qualities as she proceeded to give us a terrific, informative tour of their children’s hospital. Aflac is a huge support to CHOA… if you would like to see how they help: http://www.choa.org/childrens-hospital-services/cancer-and-blood-disorders/about-us/how-aflac-supports-us

With Jessica at Children's Healthcare of Atlanta

My brother, Nicholas, is a huge racing fan. He is a senior who is studying mechanical engineering. He is on the Hornet Racing Team at Sacramento State where he helps to build and design their race car that they bring to competition each year. I have become educated about racing through Nicholas, and one of the NASCAR drivers who has become my favorite is also a huge supporter of CHOA. Carl Edwards has devoted his time and money to help. For those of you who are not familiar with NASCAR, Carl does a back-flip each time he wins a race. After one win, he took out the Beads of Courage necklace that a cancer patient had given him and placed it around his neck. There is a photo of this in one of the art rooms for children, along with the trophy he won from this race.

Thank you again, Jessica, for the tour of your amazing children’s hospital. Thank you to Aflac; may you be an inspiration to many other corporations!

Carl Edwards, you were already my favorite because of your warm spirit. I guess that now you must be my Ultra-Favorite!

Carl Edwards Photo at Children's Hospital of Atlanta

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