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Joyful Rollercoaster Ride…

UnknownI must first say…I AM So thankful that Jesus is ALWAYS in control.  Even on what has felt like a bit of a rollercoaster ride…I know that NOTHING that happens today, tomorrow or the days ahead, happen without God’s hand.

That being said, I come to you tonight with a prayer request for Ms. Rachel.  As some of you may know she was chosen to be in a clinical trial for a drug that has huge potential to change the direction of her disease of Cystic Fibrosis.  We are thrilled, excited and honestly extremely nervous.  While this drug has already been approved for the older adults (so we know that it is completely safe and highly effective) participating in a trial is difficult in that Rachel will receive a lot of pokes, and other procedures that just aren’t too fun.  However, the upside of this is that she will have the opportunity to receive the drug up to 2 years before she would have if she did not participate in the trial.  SO EXCITING!!  IMG_1744

We go tomorrow for the first testing day.  Tomorrow will be similar to the first day of the actual drug study (but it is to certify that her lungs, liver, kidneys and all other aspects of her body are healthy enough to engage in this trial).  Tomorrow will be critical in how Rachel responds.  Obviously she is scared.  Would you please pray with me that God in His amazing ability, will calm her fears (and mom and dads).  Also, that she will be able to get through the numerous blood draws and specifically the sweat test without too much pain or stress.  Tomorrow will be about a 6-8 hour day.  Certainly, the most difficult part of the study because everything will be new.  And, knowing that tomorrow will be duplicated on first day of trial (starting sometime between 10 and 21 days after this first testing).
My anxiety is a bit high.  Having a child with a life shortening disease is tough for many reasons…one of the hardest is the times when the reality of what you are fighting for is right before you.  When she is running and playing outside I can almost forget for moments at a time that she is fighting a deadly monster within.  However, every cf appointment and each time we step into the hospital we are starkly aware of this truth. While this trial is something that we have prayed for, worked for, and hoped for…the reality is we are closer to hope, but still not there yet.  I know that tomorrow will be long, I know there will be tears, I know that I will need to encourage and possibly force my child to do things that she does not want to do…and yet must.  It is all for her benefit, but still hard!  Please pray for us. Pray for our kiddos that are not with us too.
My God is big.  He is able and I know that He walks this road with us.  Appreciate the prayers from others in the midst of the next 24 weeks of this trial.  **Also a special request.  I know this is selfish, but please pray that Rachel gets the drug if it is in God’s will, and not the placebo for the double-blind-placebo part (first 24 weeks) .  After that she is guaranteed the drug, but it would sure be nice to have it the first 24 weeks especially through the heart of winter. =)  But again, resting in His provisions, power and goodness.
I know I can not share how Rachel is doing on the trial after she starts the trial, (and hopefully I am not breaking any rules by posting this…).   We know we serve an awesome God and that prayer is powerful tool.  Thank you in advance for being such an amazing group of friends and family to us on this journey.  

2 Responses

  1. God is with you always…go with your hearts my dear and let the goodness of God continue reign supreme in your life. We will be praying with you all and supporting you along the way. Bravery is a quality you have been given for a reason. We are with you and love you!

  2. Our doctor just asked for Bethany to participate in a trial that sounds like the one you described. We hope she gets the real thing, too. We are still waiting for confirmation that she will be able to participate. Praying she will. I will pray for your daughter.

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