Day +42

IMG_0014Caption: moving Josh to a chair to get his body moving.

Josh was getting a pretty restless and anxious to get the breathing tube out! Especially when they completely turned off his sedative drugs since he could feel everything.  It’s very uncomfortable to the point of being painful.  It didn’t help that he got lots of steroids too; they make people anxious.  On top of that, they told him they were about to take the tubes out, a couple of minutes before the doctor walked in to explain they would have to wait longer.  He had his hopes up.  On the bright side, Josh was very alert and cognitive even coming out of sedatives!  The doctors had to bring him up to speed on whats going on, but it’s normal to have amnesia brain at first.  So basically, Josh is breathing on his own. He technically doesn’t need a breathing tube because he’s breathing fine, which makes it so tempting to get it off.  Noah wanted to visit Josh and he got to come with Papa today.  It was hard for him to see Daddy like this though.  Josh got to be awake while he came so that was special.  Please keep praying for the kids!

It’s an answer to prayer that they were able to explain Josh’s options with him and I both.  Even though Josh shed a tear and was not happy about it, he agreed to stay on the breathing tube in order to pursue more possible treatment.  Josh is being a champ and fighting for his life! At this point it means doing some of what they’re doing already with the steroids and this drug that tries to kill the EBV, but adding more… They are getting another dose of the Rituximab tonight and waiting to see if we can get some T-cells that are ready to go ASAP.  The Rituximab could make his neck swollen so it was important for that reason to leave it in there.  While we wait for the T-cells we may need to do an adjusted dose of another chemotherapy drug just to keep him going long enough to get those T-cells and hopefully start that therapy as soon as possible.  The chemo may make his swelling go back up too so that’s another reason they may keep the breathing tube in longer.   While this is difficult I’m so thankful for all the people God has provided.  I’m thankful for FARF!!! Also, I’m so thankful for Dr. Laura Newel doing work on her off days and doing much research and calling several doctors that specialize in FA! Thank you Dr. Laura!

Prayer requests:

  • for them to find t-cells quickly to treat Josh with
  • for Josh to tolerate the Rituximad
  • if needed, for him to tolerate the chemo
  • for his comfort and peace while on the breathing tube
  • for our whole family to be comforted during this time
  • continued direction and wisdom for the doctors and medical team

We appreciate your concern, prayer, love, and support! Many of you have been praying fervently, delivered meals, written cards or messages, or donated to our fund.  WE THANK YOU SO MUCH!!