Day +39

John is still inpatient.  It looks like he’ll get discharged tomorrow.  

All in all this past week has been challenging.  But, John did enjoy one good day.  This past Saturday he felt “good” (all things considered).  He sat up in bed, went for a walk, watched TV on his iPad and even engaged us in conversation.  For a moment, I felt like the elephant, that’s been sitting on my chest for the last few months, finally got up.  It was such a great feeling seeing him alert and participating in the events of the day.  I really thought he was turning the corner …. Then came Sunday, the return of nausea.

Our setbacks:

The nausea has returned with a vengeance.  We are back on round-the -clock anti-nausea drugs and we can’t seem to get it under control.  They offer him only partial relief.  So, he’s either knocked out cold from the medications or awake and nauseous.  Why is he so nauseated again?  It could be a virus although he has tested negative for a slew of viruses/infections (but there are always those viruses that they can’t test for).  It could be post radiation nausea.  It could be related to the Dilaudid wean we just started (unlikely because we are taking it very slowly).  Or, It could be a culmination of all of these things.    

He hasn’t drank or eaten in almost 50 days.  He is still on feeds through his NG tube.  We really need him to show some interest in drinking/eating.  It’s important he gets his gut working. 

Spleen is still consuming his platelets and neutrophils.   

His White Blood Cell count has plateaued.  It has yet to take off and achieve “normal” levels.  We’ve used G-CSF (stem cell mobilizer) for over a month trying to stimulate his cells with limited success.  The plan is to give John a stem cell “boost”.  I’ll start my G-CSF series shots later this week (6 days) and we’ll repeat the stem cell donation process the beginning of next week.  I’ll donate next Tuesday & Wednesday, Jan. 6th & 7th and he’ll receive those cells next Wednesday & Thursday, Jan. 7th and 8th.  We pray this helps not only his lagging WBC count but also his liver (stem cells flowing through it may help regenerate some of the failing cells) and spleen. 

Our progress:

His respiratory issues are totally resolved, no oxygen required therefore I stopped my search for a Sherpa to carry John’s oxygen tank around for me.  He’s lost over 12 pounds this week (30 pounds total).  The weight just dropped off, relieving the fullness in his stomach and allowing his lungs to expand. The doctors think this was due to his organs and body starting to heal. Finally, he’s not short of breath!

Bilirubin is lower so his liver is a little happier, still compromised but happier. 

His CRP (C Reactive Protein) is down.  Shows that there is less inflammation in John’s body.

Visually he looks really good(compared to a few weeks ago).  


Chimerism from this week is not back yet.  

Please continue to pray for John’s complete recovery: 100% Chimerism, continued MRD Negative, & for the cell boost to improve his cell count recovery and rejuvenate his Liver & Spleen functions.

Love, Kathy