When all else fails…Go with PURPLE!

Seemingly small events  are worth celebrating!
Seemingly small events are worth celebrating!

Dear Family and Friends,

Saddened is my heart to say that the hope we had for Ryleigh is at an all time low.  Ryleigh and I just returned from another visit to the doctors at BCCH.  It was a deflating trip.  When Dr. Barker, Ryleigh’s  specialist looks at her and looks at the both of us….and says…”This really sucks doesn’t it” both Ryleigh and I knew that options are running very thin.

First, Ryleigh has been getting progressively worse since her last visit and stay last November.  In January, she was resigned to the fact that she needed to go back on prednisone and methetrexate.  In the past, the prednisone was the one medication that would relieve her of the pain and other symptoms that go along with her disease.  Prednisone is very hard on her body and the side effects are hard on her.  You may notice her puffy cheeks in the picture.  Although it gives the illusion that she is looking healthier – it is a facade.  She is getting more and more weak and dealing with pain and fatigue that the average person would find unbearable.  I shared a room with her last week and was disheartened to hear her moaning in pain while she slept.  I realized how much she must be enduring but just trying to keep a positive outlook.

So, what is the plan now….not sure.  I have spent quite a few late night and early morning hours searching the web for ideas, drug trials, experts etc….not much that she has not tried.  BCCH doctors are currently looking into some “new” medications that may work.   Unfortunately they are not available in Canada — so special “begging and pleading” needs to happen from our doctors and most likely will not be paid by pharmacare or extended health…but will cross that road when it comes.

That being said…we are managing!  Our entertainment is our 3 dogs…all amazingly kind, tenderhearted and very therapeutic. Thank goodness for their positive energy — especially when we are needing some comic relief.

I will try to update more regularly….as I know how much everyone cares and wonders. The  positive support and energy from all corners  is so appreciated.   Cheers, Jo

3 responses to “When all else fails…Go with PURPLE!”

  1. Crap!!! But you know hope is strong!!!i will continue for you!!

  2. So sad I am! Crohn’s can be such a cruel disease, for some, insurmountable. I’m so sorry that there is no relief in sight. Sadly, I’ve known another who was unable to get well…well, as well as a Crohn’s patient can get. Give Ryleigh a hug for me and love her for every minute! And pray for a miracle!

    Sending hugs and best wishes




  3. this makes me sad and mad! we think of you ladies often! and are always sending you waggy tails from here in Kelowna. Looks like we just missed you guys in vancouver. will keep sending you waggy tails in hope that these drugs will get approved and most importantly help. lots of sloppy kisses Tara, Nadia, Thor and Einstein

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