Easter 2017

Wow!  I can’t believe an entire year has gone by and we are back to Easter again.  Easter last year was the first holiday since we started that we didn’t spend in the hospital.  When we got back from our Make A Wish trip we met with our Oncologist and she said she no longer felt comfortable giving Audrey chemo because the scan showed potential growth.  We told her we had already consulted with our doctor from Houston and he said it was OK to do another 2 cycles and scan again to see if anything is changing.   She refused to continue treatment stating Audrey’s health was at risk.  Guess she forgot Audrey has cancer. Though we aren’t in the hospital this year we are traveling to Los Angeles to meet a team there to hopefully qualify for a phase 1 trial that might help prolong Audrey a bit more or if we are super lucky get rid of the cancer.  Since we got back from the Make A Wish trip we have been applying for trials all over the country.

Since then we have been talking with doctors all across the country and discussing what we can do.  It’s been 8 weeks since her oncologist denied her chemo and we have been chasing every possible angle trying to find other options.  We have looked at and been denied for clinical trials in New York and Chicago and are now heading to L. A.  There is an experimental phase 1 trial for Olratumab and High-Dose Ifosfamide chemo.  We are very much hoping to be accepted and start treatment as soon as possible.  The good news on this trial is if we are accepted and it shows progress we could at some time transfer our trial back to Phoenix Children’s Hospital where we are now going for care while in Arizona.

What an appropriate day for us to leave.  Easter Sunday.  As we celebrate Jesus rising from the grave and covering our sins we will be heading out of Phoenix and rising from the ashes into the city of angels Los Angeles.  Praying that all the closed doors are leading to the right open door.  We are trying to cherish every moment while fighting through the reality of the most likely outcome.  How do you get past that reality?  How do I walk Cole through this reality?  Those are the questions that just scare me.  I continually have to catch myself worrying more about the what could happen then what is happening now.  I can dwell in my own pity sometimes while totally busted and broken and miss whats right in front of me. Or I can put off grieving until it’s time to grieve and enjoyed every moment between now and then.  What if we all lived our lives that way?  How would that change us and our view of whats important?  This family of 4 continues to stay a family of 4 as long as we can.  We will continue to seek out treatment anywhere we need to go and make friends and memories along the way.

Look at California here comes Audrey.




2 thoughts on “Easter 2017

  1. Hughes Family:
    Thank you for this update. There are so many prayer warriors fighting along your side, knowing God is walking with you. My prayers are with you through out the days and I always wonder, as sweet Audrey is brought to my mind, what is God’s plan. Your family is so important. I will continue to lift you all up to our Lord for wisdom and direction. Your strength and love is a testimony to us all. God bless you all.
    ❤️ Nancy

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