The First Second Opinion

July 3, 2014
7 Comments

Simon’s local oncologist encouraged us to get second opinions because every facility offers their own clinical trials or experimental treatments.  We’re realistic that this cancer isn’t curable (by man – God can cure it if He wills) but have been told there are options to slow it down.   So I called City of Hope to add them to our list of second opinion facilities.

City of Hope and I did not get along at first.  Yesterday, I spent an hour on the phone getting Simon registered and talking with four unhelpful agents.  After that full hour, it was time to speak with THE NURSE who would set up the appointment and help us navigate the process. She was so sweet as she introduced herself and asked for Simon’s Gleason Score.  His what?  I know most of the terminology and numbers of what we’re dealing with but Gleason?  She clarified, “You know, for his prostate cancer?”  Um, nurse lady, either you know something I don’t or we just wasted an hour.  It was the latter.  Two more unhelpful people called.  Seriously.  But then, BUT THEN, Nurse Barbara called. SHE was legit. She apologized for the hot mess I dealt with earlier. She knew exactly who we needed to see and snagged us a cancellation for a next day appointment!

We met with the head of Gastrointestinal Oncology.  He reviewed Simon’s case and confirmed much of what we already knew – it’s too advanced for chemo, radiation, or surgery.  He did give us more detailed information on the one FDA approved drug that can be effective at slowing and sometimes shrinking Simon’s specific cancer.  Not a cure, but if it works, we could buy time and possibly improve Simon’s quality of life. That will be our plan if no other options seem better.

The doctor also shed some insight on clinical trials.  Let’s talk clinical trials for a sec.  Trials come in three phases.  There has to be some sort of scientific reasoning to introduce a trial and patients are never given placebos.  Phase One is like, “Hey, it worked on a lab rat!” or “This could complete my thesis if I can find a few suckers to try it out.” Not trying to offend my medical friends, but lets be real.  Friends don’t let friends do Phase Ones unless there are extreme circumstances. Phase Two means that phase one wasn’t a total failure and some solid data was collected.  And Phase Three is fairly promising – FDA approval is on the horizon.

So back to City of Hope’s Clinical Trial.  There’s one for Simon’s cancer. It’s a Phase One.  It has one current participant. The trial combines that FDA approved drug with Chinese herbs,  We could probably do that ourselves without having to check in weekly and deal with all the paperwork of a trial.  So we’ll probably pass there.

We have a USC appointment tomorrow and a few more potential appointments the following week.  And we are being encouraged and supported daily by so many friends and family.  It’s undeniable that God has been preparing us for this journey and is guiding our steps.  Even if you don’t consider yourself a “religious”person, take some time to pray.  God hears you, no matter who you are, where you are, or what you’ve done.

And enjoy this picture of me, Simon, and his mom playing Farkle on the iPad while we waited for our appointment. You’re welcome.

cityhope

7 Comments

  1. Rahsaan Footman on July 2, 2014 at 7:33 pm

    I donated bone marrow to City of Hope. They are very helpful. They know its tough for everyone passing through their doors.



  2. Debbie White on July 2, 2014 at 8:27 pm

    Loved the pic. Praying for all of you. May God bring his most poerful angels to protect , heal and comfort you during this trying time



  3. Carissa Robideaux on July 2, 2014 at 9:13 pm

    Farkle on the iPad? Whhhaaaattt? I remember Simon buying us a set of dice to teach us! Cory and I still play it to this day – on the ferry to Seattle on our date nights. 🙂



  4. Kristin Romo on July 2, 2014 at 9:37 pm

    Wow Kristy, good things could be on the horizon tomorrow at USC. Keeping you all in our prayers.



  5. Michelle Stevens on July 3, 2014 at 2:39 pm

    I will just keep praying, the kids want to know why uncle Simon is sick and they pray too. We live you guys more then I have words to express. God is good and He is faithful.



  6. Brenda Blizzard on July 3, 2014 at 6:39 pm

    Lord, I pray that You send Your angels of courage, strength, & peace through each door that is opening for Simon & his family. Lord please comfort each one of them in a way that only You can do. In Jesus name I ask these things. Amen.



  7. Kathy O'Kelley on July 3, 2014 at 6:50 pm

    Prayers daily for your entire family. Simon grew up with my boys and I love him and his family. I love reading all the updates. You are a fantastic writer. Simon, you are in my prayers and thoughts.



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