Disconnected

Hi Everyone, JJ wanted me to pass on to all of you that he cannot post on the blog right now because of computer problems. His lap top cannot access internet explorer and the hospital will not let him use the computer in his room (even though he was encouraged to use the computer in his room on the 6th floor) They may be able to get him another computer by the end of next week (or not). If anyone has a lap top you could let him use that would be wonderful. The computer is one of the few links he has to the outside world. Obviously he cannot check his email either. Oh woe. If there is anyone out there who could provide him with a computer please call call me at 651 714 1506.

The transplant went well. It is a very quick process taking only about 10 minutes through his IV line and his Hickman. JJ's beloved Sara was present, myself (his Mom) and his very dear friend Bill (from Colorado) was there too. We each passed the two small plastic bags into each other's hands before he was infused. JJ named them Louie and Butterfly. Right now those stem cells are sitting in his marrow. They should engraft in about 3 weeks time and then one will take over and become his new blood system. Something kind of interesting: He has type O blood and the cords are type A. This means that JJ's blood type will now become type A!

Despite the promise of the transplant JJ has not had a smooth road. He passed out a few times and through tests they found that his adrenal glands have shut down. They are now giving him medication for that. But the consequence for that is that he cannot get out of bed without assistance. His severe heartburn and acid reflux they believe is caused from his gall bladder. Were he someone else the gall bladder would be removed. This has been an ongoing problem for a while now. He is now getting antibiotics for that. We are grateful that he has not gotten any major infections thus far, but with his marrow empty and no cells growing at present he is very at risk. It is a very scary time.

JJ's journey has been long, treacherous, and mostly disheartening. But the fact that he made it to transplant offers some hope. But he is tired...tired of the journey he is on and wants desperately to leave the hospital and rejoin his Sara and his beloved cat Tara. Our fervent hope is that will be able to happen for him soon. But his journey will be far from over even then. That's why your encouragement, prayers, and love pouring out to him is so critical right now. Please keep it coming. Knowing that others think about him, pray for him, and send love to him has made all of the difference for him.

A huge thank you to Bill (from Colorado) for your compassionate presence this past week. You are an incredible friend and a gift to the planet. Thanks also to Tyler (JJ's lifelong friend-another gift to the planet) John and Kristina, Steve and Scott, Marja and Trish for your visits. Thank you Jason for your super-platelets! And of course Sara, beloved Sara. How blessed JJ is to be loved by you and to have you as his companion on this incredible journey. Please send Sara your love and encouragement too. She is the unsung hero in all of this....

As this year ends and a new year begins, embrace the unwritten pages of your life and be grateful that there are empty pages to be written..... we carry on one page at a time and are grateful for each day that JJ is on the page with us. We hope for many more pages filled with JJ..... Much love, Linda (JJ's Mom)