John....

Finding it difficult to articulate my feelings this week so I just want to share an update on John.

 

He finished his fourth IV chelation therapy.  So far the only complaint is severe joint pain (thank goodness for pain team).  We were planning on three treatments a week but we may need to bump it up to five.  There is an oral option that we had planned to start during his IV chelation off days but it can cause gastric bleeding – with John’s varices, a bleed could cause fatal hemorrhaging.  So, we are taking a step back and trying to weigh the risk vs. reward on supplementing with this particular medication.     

 

This week’s PT is off to a good start.  He rocked the tilt table on Monday and sat bedside Tuesday and kicked a ball.  His goal is to stand, assisted, by Friday!    

 

John and I also sat with the physical therapist today and looked through wheelchair options.  While I do believe he will walk again, we need to address the reality of his current abilities.  So, I sat with John, embraced him for who he is today and helped him pick out a wheelchair with a cool orange frame.  

 

This Friday is going to be a busy day.  He is having a bone biopsy and a bone marrow aspirate.  The procedures are part of his one-year post-transplant follow-up.  They will be testing: MRD, chimerism, cellularity and iron level.  I pray his marrow shows a decrease in his leukemia burden and the possibility of a miracle.

 

Our goal is still to try to be home by Christmas.  It’s a lofty goal but I think with John’s determination it’s a good possibility.

 

Wish List Wednesday:

 

My only wish this Wednesday is for your continued support for St. Jude Evening of Hope & prayers that John will be standing on stage to greet you when you arrive.

 

www.stjude.org/eveningofhope

 

Thank you,

 

Kathy