averagelog - November 4th

Sunday, November 04, 2012

It’s been quite a journey.  As I look at the clock, it’s 8:47pm on Friday night.  November 2, 2012…it’s been 9 months since Chris and I began our averageman training, and only recently have I really begun to understand what we’ve really been doing this for.

I had the pleasure…no, HONOR…of interviewing two special people who receive the financial benefit of the Morgan Adams Foundation.  The doctors who receive MAF funds are moving mountains with their research, and I’d like to share just a moment of their significantly more important journeys today.


Dr. Jean Mulcahy-Levy is a pediatric oncologist and instructor in the Center for Cancer and Blood Disorders at University of Colorado School of Medicine.  As she described her research to me, past and present, it sounds quite unique.  One of her research points studies a drug fighting the tumor’s “autophagy” – a starving cell’s ability to break down some of its own machinery for energy. Clinical trials of this drug are underway with adult brain cancer patients, but none for children have been awarded to date.  She has led investigations where patients in clinic are found to have a genetic marker for brain tumors, and while some tests fail (think Sir Isaac Newton), the data compiled can be used for other testing.  It’s a great start, but it’s only the beginning. 

Before treatment begins, Dr. Jean also wants to foresee how a child patient will respond to aggressive treatment.  She can review their chromosomes down to the single DNA nucleotide to identify and determine a patient’s ability to learn…how to lose less learning skills, therefore determining how aggressive the chemotherapy and radiation will be.    Ultimately, she’d like to make long term outcomes the best they can possibly be for each kid.  It’s pretty amazing when you can get that specific with each kid.

One overlying theme Dr. Levy’s research surrounds is designing new strategies to block positive tumor responses to treatment, and combining survival drugs to both reduce chemo and reduce toxins, as well as to make the “cocktail” work better.  She was recently awarded a large grant to continue he research, and has relied on MAF to get as far as she has.  Congratulations on this honor, Dr. Jean, and averageman will follow your progress!


Dr. Jacob Gump was born in Denver, and went to CU-Boulder, then graduate school at UC – San Diego.  We went to do research in between with Dr. Steve Hunger, head of Cancer Research at Children’s Hospital.  After grad school, he returned to Denver to pediatric medicine and researching general cell biology.  While he and his wife were vacationing in New Jersey over New Year’s 2009, they got the news.  Their two-year old, Eli, had been diagnosed with a craniofrangioma tumor.  He had a massive seizure due to fluid buildup in the brain, and nearly died.  His surgery to reduce the swelling was followed by two more over the next year and a half.  As Dr. Gump stated, Eli’s tumor is unique in that it doesn’t grow quickly and doesn’t metastecize.  But because of its slow growth, it doesn’t respond well to treatment, and the tumor itself (being a “hollow cyst”) can build up fluid quickly, growing huge in size.  The Gumps decided against radiation as long as possible, until Eli was 4 years old, injecting chemotherapy directly into the tumor in the meantime.  One of the many things I didn’t know before this is that the brain grows the most up the age of 6, where personality and cognitive traits are learned.  Messing with the brain during the early stages subjects the child to severe quality of life risk. 

Naturally, Dr. Gump has wanted to be close with his son and the disease, but there are only 5 or 6 metro areas around the nation that can parlay university studies and a children’s hospital into a career opportunity.  So Dr. Gump really needs to keep his research more broad in order to provide for his family.  Working in his own lab, he focuses on cancer biology and how cells respond to chemotherapy.  To get a professorship, the employer usually will require him to work on underlying biology issues that aren’t related to Eli.

So how does this relate to Morgan Adams Foundation?  There are NO clinical trials comparing approaches to the research of Drs. Gump and Mulcahy-Levy.  Because these brain tumors are rare, more money goes to larger scale disease.  What this particular science needs is a “multi-institutional consortium”, Dr. Jacob explains…a bank of knowledge to share ideas and practices to kill these tumors, and there’s very little money to do so. 

My thoughts are of Eli’s quality of life.  Eli’s tumor has destroyed his pituitary – the “regulator of all hormones” – growth, adrenal, hydrocortisone, testosterone/estrogen, sex hormones and more.  At 4 years old, he takes 4 drugs orally and a growth hormone shot daily.  When his age reaches that of normal puberty, they will begin administering testosterone.  This treatment will occur for the rest of his life, but without it, Dr. Gump says, he’d die within a week.

This would be more than most of us could handle, but it’s just the beginning.  Damage to the hypothalamus leads to weight gain.  I ask why.  The hypothalamus initiates signals to the brain such as the switch that goes off after we’ve eaten.  Poor Eli lives in a constant state of hunger.  As a result, he is held to a very restricted diet of 800 calories per day.  Why so few calories?  The hypothalamus also controls metabolic rate…even though the body thinks it’s starving, it puts on weight.  It’s unthinkable to a strong eater like me.  Dr. Gump notes they could be worse off…a fellow parent who shared stories of his son wasn’t as strict.  His son at 4 ½ years old is morbidly obese, and they’ve stopped sharing pictures. “What do you do when they’re 15 years old and you can no longer tell them what to do?”  Jacob asks. It literally breaks my heart.

It doesn’t end there.  With this cancer affecting a geographic area of the optic nerve, vision is rarely a sense unaffected.  Eli is legally blind in one eye and 20/40 in his good eye…he lacks peripheral vision, as if looking through a telescope.  There are cognitive and intellectual issues as well.  Eli is fortunate, being in a normal school receiving the additional help he needs.  Others have rage disorders and severe social disorders. 

It all comes down to the research and the dollars to support it.  Many docs want to help, but they haven’t found a way to collaborate.  At least now there is a “tumor repository” – tissue to test.  This will have a direct effect on future kids’ quality of life.  There is a new grant to establish the first foundation of these consortiums. The more we fund, the more docs can conduct the necessary research, and Dr. Nick Foreman believes that there will be a cure by the time he completes his career. 

I hope this short look into these special people’s worlds leaves a lasting impression.  Help us help them…they’re truly changing the world and saving lives.