Meet Christopher

  • Favorite foods: Spaghetti O’s and Pizza. Plus candy! 
  • Favorite teams: Raiders, Sharks, the A’s, and Cowboys.
  • Favorite things: his family and friends. Visiting the pediatric patients on appointment days. 

Things started for me in December 2008, three days before my 22nd birthday I was diagnosed with Cancer.  A Sarcoma tumor, I was told it was a very aggressive and fast growing cancer. It had been found in August but by the time we were seen, the lump had grown to a tennis ball size. 

Trying to stop the rapid growth, the Doctors asked me to do a very aggressive Chemotherapy immediately.  I spent one week in the hospital on IV chemo drips and three weeks home for 3 months. The tumor did not respond so In March 2009 they did the first surgery of many to remove the tumor which was now the size of a softball.  They removed the tumor and my right bicep. The radiation afterwards basically caused me to lose all function of my right arm with the exception of my hand.  I underwent Physical therapy for three months trying to stop the Lymph edema (which is pain and swelling). 

From June 2009 to October I did chemo again.In December 2009 I received the best news, 4 days before my 24th birthday. I was told that all my tests were clear. This only lasted my birthday, Christmas, and New Years. 

Then bad news hit again.  On January 13th  2010 my doctor called to tell me I had another tumor in the same arm just above where the other one was.  My life changed even more on March 1st, surgery was done to remove the tumor.  They were not  able to do that because the tumor had embedded itself into the main arteries and nerves in my arm and hand.  By even trying to remove it they had already lessened my chance to use my hand again.  

They closed me up and told me the bad news the following day.  They gave me an option to “die” rapidly because it was such an aggressive tumor, or to have a full four quarter amputation.  

My choice resulted in surgery the following morning.  The surgery was a success, I was told.  They felt they were able to get all of it by the extreme amputation they did.  One week later, I went home.  It was difficult not having my dominant arm and learning how to do everything all over again.  

In June 2010 my first CT scan after my amputation was again a shock of bad news.  I was told that I had 8 tumors in my lungs. On July 1 st  2010, I had surgery to remove the tumors.  They removed 5 tumors from the left lung and three from the right. After one week in the hospital and the most painful surgery of all, I am in the process of recovering at home with a tube left in my lung to drain each time I feel the pressure and pain.  

In 3 weeks I will see the doctors again and decide if at all to continue any type of therapy.  As you can see the past 1 ½ years have been filled with doctors, tests, surgeries and much more.  I have remained strong and full of hope throughout my journey so far.  

This ends Christopher’s journal…and mine begins.

My son Christopher passed away three weeks after writing his journey.  On August 27 th , 2010, my son was admitted to the hospital only to find out that he had yet four more tumors in his lungs.  He was not able to have any more surgery so soon in his lungs.  The tumors were so aggressive they were just multiplying faster than the doctors knew what to do. He was told three days later that he was dying.  As my son lied there incredibly strong, he said “I don’t want to know how long I have.  I don’t want to count down the days on the calendar.” 13 days later my son passed away on September 11, 2010.  

This horrible battle took his life from the beginning of the dime size tumor to his passing in 21 months.  He was the strongest man I have even known.  He asked me specifically to be his voice and continue to educate people about NF. 

Christopher was an organ donor and that was very important to him. He NEVER had a “Poor me” or “Why me” attitude. He would look at the children at UCSF each visit and say “Why them?”. He was so compassionate and had the biggest heart for his friends and family.