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!!


6 thoughts on “Day +42

  1. Dick and I are continually praying for you Josh and your family. We know that you are in the greatest Healers hands and that He loves you more than we understand. Eph.3:20 (God) …is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us. We pray that the God of hope will fill you with comfort and peace as you trust in Him by the power of the Holy Spirit.

    Love, Dick and Rozzie Sathre


  2. Dear , Dear Seibert family, and most especially chippy-chippy-chawwah, Oh, I know I spelled it wrong, but Please convey to Josh I sent hm a message with his “other” name in it !!! Praying, getting everyone we know to pray, just knowing your are in God’s strong hands gives us great hope and confidence. Loving you each moment!!! I feel a rush of joy!! What’s that all about?? Maybe God is lifting us all up . Wish I had a good joke to share. Maybe the Chippy thing will do for now. Love you, Jan and family.


  3. Love you all and constantly lifting you up in prayer. We don’t know God’s plan but He does! Praying for comfort and quick healing.


  4. Dearest Erika, I have been journeying along with you here in these beautifully conveyed, gospel entrenched updates and have been praying for these things and for you all. May you continue to be propelled and encouraged in the “knowledge of his will in all spiritual wisdom and understanding”. Prayers for Josh’s perseverance and physical comfort..for healing…for the kiddos and their little hearts and minds as they deal with this in their own way..God is surely doing a great work in them as well. Love you, sister!

    “…being strengthened with all power, according to his glorious might, for all endurance and patience with joy, giving thanks to the Father, who has qualified you to share in the inheritance of the saints in light.”
    (Col. 1:11-12)



  5. We love you guys! We have not stopped praying for all of you. Currently we are in Big Sur for our nephew to run a marathon. We are “walking” 11.6 miles! Will be praying for T-cells every mile.😊Our mighty God is the Great Physician. He also provides comfort & peace!


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