Frequently Asked Questions

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Who was Greg Jones? 

Greg Jones is my son and the inspiration for me, this blog, and believing in Zebras. Greg loved family, friends, food, history, light rock, dancing, silly comedies, family traditions, and Hawaii. He was diagnosed with melanoma just before he graduated from George Mason University in 2007 at a time when his peers were making plans to start their lives.  He never dwelled on why he had melanoma; only on what he had to do next.  He saw past the disease to integrate the lessons he was learning:  to live in the moment, adapt to the situation, appreciate the little things, seize second chances, let people know that you care, and let other people support you. His love of the show Mystery Diagnosis, which focuses on the zebras, or unexpected things that occur in an illness, inspired a following of Zebra supporters, who Believed in Zebras (and miracles), which gave him strength. One of his favorite sayings was, "I'm going down with my boots on." He integrated this strategy and fought hard to live and truly went down with his boots on.
What kind of cancer did Greg have?
Greg had melanoma.
When did he realize he had melanoma?
In March 2007, during final week at George Mason, Greg told me he had a lump in his right groin about the size of grapefruit. I got him an appointment with our family doctor that day. Greg had a scan the same day. On the following day, he was referred to a surgeon for a biopsy.Within a week he was underwent surgery where they removed the tumor and sent it out for staining. At first, we thought he had lymphoma and that it was something that was highly survivable. A week later we were told it was probably testicular cancer, the same as Lance Armstrong, but the diagnosis wasn't final. About three weeks after the surgery, we got the final word. I remember talking to the surgeon on the phone. The surgeon said, the cancer is melanoma. I said, "Oh, but his chances are good." Then a long silence followed by "No." I told Greg the diagnosis after I got off the phone. We hated the diagnosis but were glad to know what we were up against. That was in April 2007.
What was the source of the melanoma?
We never got a definitive answer on the source of the melanoma. Greg had a purple thing on his right shin that looked like a bug bite or pimple that had been scraped. It was visible for six or so months when he was in high school and it just went away. I never considered it could be cancer.  The general area on Greg's shin was biopsied, but it came back negative.  Some people, like Greg, never know the source of the melanoma. Melanoma can start between your toes, in your sinuses, and other places the sun doesn't ever reach.
Did he have a lot of sunburns growing up?
I was diligent about sunscreen when he was a baby and growing up. Greg had curly bright fire engine red hair and pale porcelain skin. We lived in Hawaii until Greg was five and I made sure to keep him in the shade and slathered in sunscreen. He may have got a little red, but he never had a burn that blistered. When he was in grade school and middle school he liked to swim in our pool in the back yard. He may have had one or two sunburns that peeled on his back. When Greg was in high school, he was a caddy at Lowes Island, he was out in the sun almost all summer, but nothing significant in terms of sunburns come to mind. Sunburns and sun are one possible cause of melanoma. We just don't know whether the sun factored into Greg's melanoma. But I wouldn't chance it, I would wear sunscreen and would tell my kids to stay away from tanning beds.
Was there a family history of melanoma?
There was no family history of melanoma.
How long did he battle melanoma?
Greg had a three year battle (with many victories) that started in March 2007 and ended on March 8, 2010.
What was his treatment plan?
  • March 2007.  First surgery to remove lymph node at Loudoun Hospital in Virginia.  Originally the doctors thought the cancer was lymphoma, then testicular cancer, then finally melanoma.  Greg was scanned after the surgery where suspicious nodes showed up on the scan in of his lower abdomen. 
  • June 2007.  Second surgery in Greg's lower abdomen to remove suspicious nodes. 30 or 40 nodes were removed.  3 of the 4 the nodes removed actually were melanoma.
  • July 2008. Went on high dose Interferon for a month.  
  • August 2007 through July 2008.  Went on subcutaneous Interferon for 11 months.  Greg was scanned every three months – there was no cancer present. 
  • October 2008.  Greg started to feel pain in his abdomen and had a hard time eating. Oncologist in Virginia ordered a scan which confirmed the melanoma was back in his abdomen.  Because of the location, the oncologist and surgeon recommended chemo to shrink the tumor.  
  • January 2009.  Greg had an emergency appendectomy.  There was some confusion about the fluid that was building up in his abdomen being from the appendectomy or the cancer.  Scans had confirmed that chemo was not working.  Surgery was scheduled for 8 February at Loudoun Hospital. 
  • February 2009. Greg learned of a TIL trial at MD Anderson where they harvest the tumor and then use the T-Cells from the harvested tumor to stop cancer growth.  He decided to go to Houston to see if he was a candidate for the TIL trail.  He ended up having emergency surgery because his upper bowel had been perforated by the cancer.  Approximately 10 cm of his upper bowel was removed.  Although the tumor was harvested for the TIL trial, it could not be used because it had been bathing in septic fluid in his abdomen.  
  • April 2009.  Follow up scan after surgery was clear.  Greg was tested to participate in a preventative vaccine trial based on the HLA gene. Greg did not have the HLA gene so he couldn't participate in the trial. 
  • July  2009. During three month scan conducted at MD Anderson, it was was determined the cancer was back.  Because of the location of the tumor and the fact Greg was healing from the major surgery in February, the oncologist and surgeon at MD Anderson did not feel surgery was a good option. 
  • August 2009. Started two cycles of bio-chemotherapy – (Interferon plus CVD) two cycles in Northern Virginia. 
  • September 2009. Went back to MD Anderson for scan to determine if the bio-chemo was working, it was not.  At that time, we learned of a trial that would inhibit the BRAF gene.  Greg was a good candidate because based on tests from the tumor that was removed in February he had the BRAF gene. 
  • December 2009. In mid-December Greg was taken off the GSK BRAF trial. Tumor in abdomen had grown by 20 percent to  8.9 centimeters.  Greg was scheduled for an appointment at MD Anderson to discuss treatment options on 29 December.  When he arrived to Houston on the 28th, he was in so much pain,he went directly to the ER at MD Anderson.  He spent the night in the ER and was admitted to MD Anderson for pain management on 29th.  On 31 December,Greg was discharged. 
  • February 2010. After one round, learned GSK MEK Trial was not working.
Believe in Zebras.  Believe in Miracles.  We do.


  1. very good! you are awesome put this out for everyone! i love you so much!

  2. thanks for this explanation and your day-by-day posts. While some of it is difficult to read, it gives me an understanding of what was going on. You and your family were so strong for Greg, and he himself showed great strength and patience. I think of all of you guys often. Miss you!!