The Little Nonprofit That Could

A note… I apologize for the length of this post (I read somewhere that blog posts are supposed to be short) but I believe our relationship with the Carbone Cancer Center is important to share and I wasn’t sure what part to leave out.   Here’s our story that starts with a question. 


Does “We Believe in Katie” (aka “The Little Nonprofit That Could”) Really Matter – Especially as it Relates to Cancer Research?

Shortly after we decided to create a nonprofit in Katie’s name to raise money for causes that were meaningful for Katie and us, I soon realized that raising funds and determining the best use of those funds is a daunting task.  There are many factors to consider; are we honoring Katie and her personal story, will we have an impact and are we using the hard-earned dollars of our friends and family in the best ways possible.  While I felt pretty confident what we were doing was important there was always this nagging thought, “Do our relatively small monetary contributions really matter and are we being true to our intentions?”  

Over time, it was becoming more and more important to actually see the benefit of our fundraising results and share specific outcomes with our supporters.


I Knew I Needed Tangible

Granting wishes for sick children made sense.  We could actually see where our money was going, experience the joy of our efforts and share those tangible pictures and stories with all of you.    

However, our desire to contribute to cancer research was a lot bigger, felt a lot less personal, and the results were certainly more “intangible”.     I remember an academic researcher I know commented that unless we have really large sums of money to donate our efforts really wouldn’t have much impact.  I was told by other “fundraisers” that to really make a difference we would need a large platform (like celebrities have)  or millions of dollars and we don’t have either of those.    I often felt that maybe what the researcher said was true and our relatively small contribution wouldn’t matter much in the larger scheme of cancer research. 

But, at the same time, there was this tiny voice inside that was urging me to consider another way of thinking about this.  Maybe what I was hearing (and feeling) wasn’t accurate.   Perhaps in our small way, our efforts did matter.  But I needed more.  Could I find something tangible at a large and daunting organization like the Carbone Cancer Center?  Could contributing to something so big help make sense of Katie’s life and her death?  

Over the course of the past 15 months this is what I’ve experienced on behalf of all who support, “We Believe in Katie” and it feels pretty amazing.


The Carbone Cancer Center is Made of People Who Really Care

From the beginning the Doctors, researchers and fundraising personnel at Carbone talked to us – at length.  They gave us tours of their labs, invited us to Carbone events and, in turn, attended our events.  It was obvious from the very start they care.    

Over the past several months Dr. Mark Juckett, Dr. Aric Hall and Dr. Howard Bailey have met with us and described where our money would be applied.  Last year’s funds went toward a preliminary bone marrow transplant research/protocol that was in its infancy stage.  Now, it has progressed and is nearly ready for implantation.  What is so very exciting, personal and tangible is how it connects to Katie and Rayce. 


Background Information About the Cancer Research Study/Protocol We Will Help Fund – The Tangible

This gets a bit technical so please bear with me as I attempt to explain this protocol in understandable terms as they were so patiently explained to me. 

First, a bone marrow transplant (BMT)  is a procedure to replace damaged or destroyed bone marrow with healthy bone marrow stem cells to attack the cancer /blood disease.  However there are side effects, with the most common being Host versus Graft Disease where the immune cells from the donor attack the patient’s healthy tissue.

As the doctors explained there is always a very delicate balance between suppressing the patients immune system (via immune system suppressant drugs) so as not to attack the new bone marrow while at the same time not suppressing too much to keep the new bone marrow from attacking the cancer or fighting an infection.  Both Katie and Rayce had received BMT but, sadly, neither were successful.  


The Actual Protocol/Study

The official name (there are two parts or branches): 

1.Alpha/beta T-cell depleted peripheral blood stem cell transplantation for bone marrow failure disorders

2.Alpha/beta T-cell depleted peripheral blood stem cell transplantation for high-risk myeloid malignancies

This new BMT technique, which was developed in Germany, is where the antibodies that could cause rejection (attacking the new bone marrow) are removed from the bone marrow before it is infused in the patient.   The goal is to introduce a “ready to work” immune system via this new, engineered bone marrow.  It eliminates rejection, and in essence doesn’t “wait” for the new immune system to take hold.   The positive effects of the new bone marrow is much more immediate – especially important because time is of the essence. 

The Doctors from Germany have been collaborating with Carbone Doctors for the past year to create a lab at UW to replicate this technique.  It has the potential to treat high-risk leukemia patients – especially young adults (like Katie) and children.  The second “branch” of this study/protocol uses this same technique to treat non-cancer diseases like Aplastic Anemia, which is what plagued Rayce.   Dr. Inga Hoffman, Rayce’s Doctor will be implementing this branch of the protocol.  Although I have not met her yet I will soon. 


Another Katie and Rayce Connection

When I met Rayce’s mother, Jess, last November and invited her (and her family) to become part of our benefit I had no idea how this research study connected Katie and Rayce – yet again another uncanny connection.   The funds our two families together with all of you, will raise at this year’s benefit will be directly applied to this cutting edge protocol/research.   Our dollars may pay a salary of a statistician or data collection staff member, help purchase a piece of equipment or perhaps cover other lab costs.    Our funds will also be combined or matched with other funding sources to support this protocol right here at the Carbone Cancer Center in our community.  That feels pretty powerful, and personal to our story. 

I know and feel in my soul our “little nonprofit that could” is making a difference and our efforts do matter.   John and I KNOW that there is a “Katie” or a “Rayce” who will have a much better chance of surviving and thriving because of the efforts at Carbone, specifically this protocol/study.  All of us have a tangible part in giving hope and making a significant difference. 

 I’ve Also Learned That the Intangibles Are Just as Important

The money is important, for sure, but that’s only part.  It’s about the people we’ve met, the stories we’ve heard, and the heartfelt compassion these really smart people feel towards the Katie’s and Rayce’s they encounter each and every day.   It’s about the chills we get when another uncanny coincidence occurs, it’s the sincere gratitude we’ve received from the Carbone Doctors who truly value what we can contribute and it’s knowing that with your generous help we are doing something meaningful in the face of such tragic loss.   None of this would be possible without your help. 

So, are we making a difference?  Do we matter?  A resounding Yes!  It’s all about how you look at it. 

Thank you

From the bottom of our hearts we thank you for being our friends, and believing in what we’re trying to do.  Know that you are part of something much bigger than “our little nonprofit that could.”   You are making all the difference…in so many, many ways. 


 One more thing…please join us on April 27th!