Day By Day - Guest Post by Kelly Crum

Dear Friends of John,

I spoke to Kathy earlier today and she asked me to update you all on John’s condition. When he was first stricken with Guillain-Barre Syndrome, John was intubated, put in a medically induced coma and fully dependent on the ventilator in the ICU. On Friday, March 13, the team at St. Jude determined that the best course of action was to perform a tracheotomy on John, so that they could remove the breathing tube, which carries with it a risk of pneumonia and infection. They were subsequently able to wake John up and begin the process of weaning him off the sedation. Although he is still dependent on the ventilator, he has started breathing over it at times. He cannot yet breathe fully on his own, but he can initiate breaths and the machine finishes them and fills his lungs. While still paralyzed, he is now able to move his head back and forth, lift his shoulders and rock his forearms back and forth slightly. The way back from Guillain-Barre Syndrome can be painstakingly slow and differs from patient to patient. John is much more stable now but only awake about two hours a day and still in excruciating pain. They are able to keep him comfortable with narcotics, but he is understandably anxious and afraid.  Rich, Kathy, and sweet Bella, wise beyond her 16 years, stay by John’s side, continually reassuring him and trying to keep him comfortable. Meanwhile, John’s last three MRD tests have been at 0 percent with no detectable leukemia. He will continue to be tested each week.

How Can We Help?

Wednesday, March 25, will mark three years since John was first diagnosed with leukemia. The road has been long and hard and the Guillain-Barre feels like the cruelest twist of fate. The greatest need right now is for prayers. Kathy asks that we continue to pray for peace and healing in whatever way it might come. Pray that God will help John feel His peace and for Kathy, Rich and Bella to find the strength they need each day.

Because the family is spending nearly every minute at the hospital, gift cards to Starbucks, Panera, Whole Foods and the Fresh Market are also greatly appreciated.

Finally, I want to add that you can support St. Jude on behalf of John and his family. As Kathy said, “It seems like the deeper the hole we get in, the more the people of St. Jude rise up for us.” The ICU staff has been incredibly kind and supportive and most importantly, continues to treat John with dignity and love.  The love for John and his unstoppable determination can be felt in every corner of St. Jude and it means everything to the entire family at this difficult, difficult time.

With love and hope for John’s forever cure,

Kelly Crum