Wednesday, March 19, 2014

Visit to Seattle


As I'm writing this post, I realize that my thoughts are so scattered on this subject.  So, I will do the best I can to tell the story of our past week.  It was an incredible learning experience and I'm still trying to wrap my head around all the scientific definitions that were explained to me just a few days ago.  Now I understand why these scientists get PhD's!  You can't just learn this stuff in a day...or a week.  It takes years.  

We recently took a trip to Seattle because Adam was competing in the Scott Seattle Stairclimb for the Leukemia Lymphoma Society.  I have conflicting feelings about LLS and only because I've heard that the amount designated to pediatric cancer is only $0.02 of every dollar raised.  Granted, this was a statistic from 2007 without much information out there updating this information.  I'm still looking into it so if anyone has any new updates, I'd love to hear them.

A couple of the scientists I met were specifically doing experiments for rhabdomyosarcoma...trying to find out specific markers in the tumors so they can target drugs more specifically.  But the others that I met are using the backbone of general studies to find cures for childhood cancers.  Ok, do you remember hearing about the "HIV injection to save the little girl with leukemia"?  Scientists are using an "HIV backbone... a piece of the virus..." as I was told by Dr. Courtney Crane.   That study, called Cancer Immunotherapy, started with children over 18 years of age.  It's in a Phase 1 study at Seattle and a Phase 2 study at CHOP, where they are starting to use it on children over the age of 1 years old.  What Adam was told when he did the stair climb was that LLS gave $4 million to CHOP to get this into a Phase 2 study.  As for finding anything written about this....I haven't yet.  

What I did find was the LLS 2011 Annual Report.  It does say that the LLS donates 24% to research.  The other percentages go to 36% for patient and community service, 14.8% for public health education...etc. etc.  But if that $4 million is only a portion of the 24%....then that is some big money. I still have much to research and learn.  

(Have I lost you yet?  I know, a lot of facts and numbers.)

Never the less, my most important mission is to fund pediatric cancers and promote foundations that work to develop research and new therapies specifically for childhood cancer. I think awareness for lack of specific funding for pediatric cancer is devastating and I have seen the effects.  The important question is "How much is specifically given to pediatric cancers?".  It is imperative that there are organizations out there like Cookies for Kids Cancer, St. Baldrick's, and Alex's Lemonade Stand that specifically focus on pediatric cancers (and of course Team G Childhood Cancer Foundation).  Not only do they raise funding specifically for pediatric cancer, they create awareness surrounding the issue that these cancers receive less than 4% of the total NCI budget.  Consequently, children are still being treated with archaic medicines of the past resulting in high toxicity during treatment and multiple long term side effects.  

During our Seattle visit, I also learned that government funding only covers about $2,000 to treat each child with cancer. The total costs for each child being treated is anywhere from $4,000 to $6,000.  This deficit is only made up by philanthropic groups like the ones I mentioned above.  

I think its also important to focus on the "statistics" that the world seems to be focused on.  Yes, cure rates have gone up in the last few decades but to say that 80% will survive up to 5 years after diagnoses, doesn't take into account the children that have fought for all those 5 years and who have died at 6 and 7 years.  It doesn't take account that if you break down the cancers by types, you have a huge amount of leukemia's being cured and on the flip side, survival rate for many brain cancers is still very low.  It also doesn't take into the account that "the cure" comes at a very high cost....secondary cancers, late effects on growth and development, organ dysfunction; only to name a few. 


Our visits were set up by the director of the Seattle Children's Hospital Foundation, Mark Ruffo.  We met him at the main entrance of the hospital where we were greeted by Dr. Doug Hawkins.  If you have read some of my blog before, Dr. Hawkins is the Head Chair of the soft tissue sarcoma committee for the Children's Oncology Group and the principal investigator for COG at Seattle.  I saw a recommendation that describes Dr. Hawkins perfectly...."equal parts honest, courageous, brilliant and compassionate."  I'm going to add in there, extremely humble as well.  With him, he had Dr. Erin Rudzinski and Dr. Gail Duetsch.  These doctors are all currently working on an analysis of sarcoma tissues called TMA (tissue micro-array) to target and analyze the tissues for similarities, look for biomarkers of specific genes and propose targets for specific drug interventions.  They can examine these tumors side by side for both general patters and very specific effects. 

In the picture below, Adam is holding a slide which is an example of the sarcoma tissues for analysis.  A "core" is taken out of the tumors, placed in the white block (for lack of a more scientific explanation) and cut into tiny sections to be placed on the slide pictured left.  There are about 50 sarcoma samples in this one slide!  I wonder if Gabriella's tumor is one of them? 

An example of analysis of about 50 sarcoma
tumor samples on one slide! 

From the left; Dr. Erin Rudzinski, Dr. Gail Duetsch,
Dr. Hawkins, me and Gabriella.  Bridget was hiding behind G.
All phenomenal people and brilliant doctors. 
(Are you still there?  Thank you for continuing to read.)

The next visit was at the Ben Towne Childhood Cancer Research Center, named after a little 3 year old boy who lost his life to cancer.  We met with Dr. Courtney Crane, a brilliant young doctor who is as personal as a friend you would meet for coffee.  The basis of her work comes from Dr. Michael Jensen who is working on reprograming the immune system.  Dr. Jensen's research program placed a strong emphasis on bench-to-bedside translation research and resulted in seven FDA authorized investigations of new drug applications including the first human application of genetically engineered T-Cell specially for lymphoma, neurobastoma, and malignant tumors. This research is incredible taking into the fact that an HIV backbone is used to help reprogram the body's immunity to fight cancer!

Dr. Courtney Crane's investigation includes working with what Dr. Jensen has discovered and applying it specifically to brain tumors, sarcomas and solid tumors in order to program the body to target and kill these cancerous tumors.
A picture of Dr. Crane's lab and some of their equipment. 
Dr. Crane in front of a part of the lab at Ben Towne. 

Adam, Dr Crane, and me in front of a wall of information
I've been trying to understand along with many donations
which will soon include Team G Childhood Cancer Foundations!
(Take a deep breath...)

Mark and I then made our way to the Fred Hutchinson Cancer Research Center where we met. Dr. Scott Diede.  He is currently working on epigenetics and DNA methylation.  I am still trying to wrap my mind around the science behind his studies so this picture is the best way for me to explain his research.  He is specifically working on rhabdomyosarcoma (yay) and finding similarities between the DNA of this cancer so that more specific treatments can be developed.  

Bare with me.......

The last and final visit was also at Fred Hutch.  I met with scientists and Phd's, Andrew Mhyre and Collin Correnti, who are part of Dr. Jim Olson's research staff.  They are working on a project called Tumor Paint, which was developed from proteins extracted from a scorpion...yes, a scorpion.  This venom (called chlorotoxin) has a molecule that acts like a flashlight and has the ability to "light up" brain tumors, which helps surgeons cut out the cancerous video rather than normal functioning cells.   Watch this video.....Dr. Olson explains it much better.  From this discovery, Project Violet was a success of the tumor paint.  

I realize I might have lost some of you with all of these scientific explanations (at least scientific to the best of my abilities).  So, if you are still with me here and are interested in learning more.....continue reading......and thank you for continuing to read.)

Project Violet was named for a little girl (named Violet) who was diagnosed with an inoperable brain tumor.  In essence, scientists are using nature and working on developing a less toxic, more effective class of drugs.  

"Inspired by nature’s medicine chest, Olson and colleagues created an entirely new class of drugs: “optimized peptides” or “optides” for short. These tiny molecules can be instructed to bind to particular kinds of cancer cells, disabling only those cells. They also can be attached to chemotherapy drugs, transforming them into precision therapies that spare healthy cells. Optides are also potentially less expensive and more powerful than other next-generation therapies."

So, guess where these optides are made?!?

RIGHT HERE!!!  The first picture is the machine funded by cancer parents and caring individuals who have supported Project Violet!  The second picture is Collin taking out a sample to put under the microscope to verify the peptides are being made.  The third picture, was the whole screen that "lit up" to confirm the process was actually working.

The cool thing about this machine (.....did you watch the video?......) was that it used to take these guys months to make a few thousand peptides.  Now, with the help of this machine, it takes weeks to make hundreds of thousands!  From here, many more experiments can be conducted!

Behind the scenes for finding a CURE. 
Does anyone know what this is?  

Collin and Drew hard at work with another important
piece of equipment funded by cancer parents in order to
manufacture these proteins.  

 I found this project to be incredibly inspiring.  I'm a visual person and learn by visuals and to actually see these studies happening was thrilling.  The time everyone took to show us their work, explain the science behind it, and tell me this couldn't happen without the help of caring passionate people, was more than the push I needed to continue on this mission. 

The passion that extends throughout these teams of doctors and scientists in the pediatric cancer world is unsurpassed from any that I've ever met.  We've spent a lot of time engaged in this world, making connections across the nation, and meeting very influential individuals.  This common theme holds true and extends across the spectrum for all of these individuals who have been inspired by children fighting cancer.  Whether their involvement is looking under a microscope, dealing directly with patients, or being a cancer parent themselves....that common theme is pure compassion which translates into passion for their work....passion for finding a cure.   It's the thread that holds us all together.  


  1. Hi Kristin! I have a quick question for you and was wondering if you could email me when you have a free moment. Thanks! Hope to hear from you soon. :-) xoxo


  2. Hi Heather!

    I thought I responded to this a few days ago. Please send me an email at and we can chat!