Hard days...

Thank you everyone for your prayers after my last post.  Emmett was able to come home from the hospital after five days and we did get some good time at home.  Unfortunately, however, the seizures keep coming.  Things got especially crazy earlier this week, and after imaging showed that Emmett's disease continues to progress in spite of the treatments he's receiving, the doctors recommended keeping Emmett in the hospital on end-of-life care.  And that's where we are right now.

We are incredibly thankful for the amazing (almost) eight years we've had since Emmett's diagnosis!  Each day has been such a marvelous blessing to us!  And we will keep praying that God's miracles for Emmett continue to sustain him!  We believe that miracles as remarkable as those recorded in the New Testament are still possible today, and until God takes Emmett home, we will continue praying that He in His mercy will see fit to miraculously heal Emmett!  We would love for Emmett to stand as a testament to his doctors and all the world that the gift of healing Jesus Christ exercised two millennia ago is still the ultimate healing power on the earth today!  We know He can do it -- and pray that He will!

I appreciate a quote from one of the early leaders of our church, Brigham Young:

"If we are sick, and ask the Lord to heal us, and to do all for us that is necessary to be done, according to my understanding of the Gospel of salvation, I might as well ask the Lord to cause my wheat and corn to grow, without my plowing the ground and casting in the seed. It appears consistent to me to apply every remedy that comes within the range of my knowledge, and to ask my Father in Heaven, in the name of Jesus Christ, to sanctify that application to the healing of my body.

"But suppose we were traveling in the mountains, … and one or two were taken sick, without anything in the world in the shape of healing medicine within our reach, what should we do? According to my faith, ask the Lord Almighty to … heal the sick. This is our privilege, when so situated that we cannot get anything to help ourselves."

In our journey with Emmett over the last eight years we have pursued every remedy available, and now we are in the mountains.  According to our faith, all we can now do is ask the Lord Almighty to heal Emmett!  And that is our prayer!

We were strengthened by one small miracle that happened yesterday.  Emmett received an experimental drug, Tazemetostat, on a clinical trial a few years back, and that medicine successfully treated one lesion and held everything else at bay for 14 months.  Last month Tazemetostat received FDA approval.  Sometimes it's a long time from FDA approval to when a drug becomes commercially available.  Well, after strings were pulled by many different people, we received a two-week supply of the medicine shipped right to our door yesterday morning!  We started Emmett on the medicine immediately and pray it does wonders for him again.

And that's where things stand today.

As always, thank you for all the different ways you have supported Emmett and our family over the years!  Please pray that God sees fit to make bare his arm in healing Emmett at this time!