Hello Everyone, Just writing to give you a quick update on JJ since it is very difficult for him to keep up with his blog right now. These past few weeks have been very scary times for all of us and for JJ. His pneumonia-RSV lingers. His time in the hospital terrified us because he needed a lot of oxygen. He spent most of those days asleep, unreachable by us. There were many days when I would visit when I never got to see his eyes, only his eyelids. He is home now...but very medically fragile. He has a complex medical picture...this has been his journey. It forces his doctors sometimes to scratch their heads....Without going into too much detail he is having bladder, kidney, graft versus host disease, nausea/no appetite issues. The fractures in his back continue to wreak havoc. Extreme fatigue...still needs oxygen. Most days are spent going to the BMT clinic for hours, visiting the pain clinic, seeing various specialists, getting more medical tests, only to go home exhausted and to bed. Very few hours when he is awake and then it is difficult to engage with him for any length of time. His quality of life is indeed compromised. But each day he gets up and moves on...each day Sara remains a loving, compassionate presence. She continues to have a huge caregiving role even though she is presently taking 3 classes.
It breaks my heart to see him suffer so much, but he inspires me beyond words...Despite his life, he still bakes bread at times, reads cookbooks, read other books, watches the Sopranos (I got him hooked ono that) plans for his next grill-off with his brother Jason. We, who love him, feel impotent at times in the face of this dreadful disease and its aftermath. But we hold onto the hope of tomorrow and are thankful for another day with JJ.
Please keep them in your thoughts and prayers...keep the love flowing in their direction....they both feel it.
If you feel moved:
continue to support them financially
send Sara gas cards
offer to come and visit JJ to give Sara a break (she really needs it right now with finals coming up)
send him notes or emails to encourage him
buy Sara fresh flowers (she loves them)
offer her a massage
buy them gift certificates to Target or grocery stores
.... all of this helps immeasurably....Thank you for your ongoing support and love, Linda (JJ's Mom)
JJ's email address: followthebreath@hotmail.com
mailing address:
4528 Bryant Avenue South #2
Minneapolis MN 55419
