A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘cancer clusters’

Make-A-Wish, May my Wish Bloom and Grow

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




“Every End Is A New Beginning”



I will admit that this post is a difficult one to write. Wrapping up my Make-A-Wish Hope Tour Story is not easy to do. Like I quoted in my last day video, “All things must come to an end.”

I am discovering more each day that the mission of the Hope Tour has not ended, but instead, it has just begun. Meeting people with similar hearts for helping children with cancer has already given me the opportunity to connect people together for the common good of the kids. For example, I met Trevor Schaefer of Trevor’s Trek Foundation in Boise. Today, he is in Washington D. C. to meet with representatives about spectacular work he is doing to pass legislation that will help us learn about cancer clusters in the U.S.

It takes just a moment to sign the petitions:

Trevor’s Law:


While you are signing petitions for our children:

The Truth 365:


It’s true. The mission of the Hope Tour has only begun.

Make-A-Wish planned a very fun day for our final day in Los Angeles. Mom and I went to Universal Studios, with front of the line passes! Having concentrated on my health, my book, my studies, scholarship and college applications, and speaking/advocacy work the past four years, this was an entirely new concept to us! Oh my gosh– we laughed and laughed and loved our time there! Dracula tried his best to scare me in a gift shop. Little did he know that I have already faced the Real Monster!  I think he was a bit disappointed he was not able to rattle my cage. Hee hee, I think I rattled his instead!

Dracula was hungry!


Finally Met SpongeBob!!!

One of the things we did that we have never done before is have a caricature drawn. Mom enjoyed watching the artwork form, as I posed with my big Make-A-Wish button. “Yes, please include my button in the drawing!”

Caricature at Universal Studios

During our time at Universal, Mom took her usual “Jumping Photos.”

Hope Tour at Universal Studios


Hope Tour at Universal Studios

Hope Tour at Universal Studios

Hope Tour Video Day 27

Hope Tour Video Day 27 Part II (too funny!)

The final day of the Hope Tour arrived on July 14th—28 days after we left home. I had so many emotions inside me that day. I was sad. I was happy. I felt like this was what I am supposed to be doing, and it felt odd to have it end. I agonized over the location of my last Hope Tour Video, and then it came to me… right off the freeway on the way home… Cottage Hospital!

Final Hope Tour Video Day 28

I didn’t know then what I since have learned. All of the people I met, and places I went, are a part of me now. No one, and no thing, can ever take that away from me. I am grateful. I am truly, truly grateful. Now, I can take all that I have been given in my wish and transform it into help for the children I love so much.

Make-A-Wish made my wish much, much more than I ever wished or dreamed. May all that Make-A-Wish has given me grow and transform into the ultimate wish come true—saving children’s lives.

Location of my “Last Chemo Day at Cottage Hospital” photo

Thank you to Make-A-Wish!






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







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