RSV

Hello Everyone, Just a quick update on JJ. He has RSV in both lungs. RSV is a viral infection that is often present in a lot of us when we have a cold but is undectectable. However, it is particularly virulent on medically compromised patients (like JJ). He is presently undergoing an aggressive treatment which includes pumping a white mist directly into his lungs. He has to wear a mask for 12 hours a day for 5 days for this procedure. They are also transfusing him with blood products that help to fight RSV. Yesterday he did not feel well at all and slept most of the day. We are disappointed that the progress he seemed to be making has suffered with this latest wrinkle in his recovery from transplant. It is excruciating for all of us to go back to the BMT unit at the hospital. We worry for him. His balance, strength, coordination, memory problems, continuous tremors concern us. Please keep him in your thoughts and prayers. Our hope is that his body will respond to the treatment and he will be able to return home soon. There is a bright spot in all of this-- his bone marrow has grown back 50%, no sign of leukemia and butterfly seems to be holding on. Yay! But his journey is long and treacherous. He is still very medically fragile. He has now been on disability for almost 2 years with no end in sight for him. His outer life is small, but his mind is expansive, his heart is full of love to give and love received from all of you and his dreams and life energy remain strong. And that dear friends, speaks to JJ the man. The man I am blessed to have for a son. Much love, Linda (JJ's Mom)

Hospitalized

Hello Everyone, JJ was hospitalized on Sunday with pneumonia. We hope this stay will be short. It is very disheartening for him and for all of us to return to the BTM unit again. Despite this, his spirits are pretty good because he knows they can provide the care he needs right now that he could not receive at home. Sara, JJ and I took his nephew (my grandson) Cameron to the MN zoo on Saturday to see the baby farm animals. It was a delightful day that ended with a small family get together to celebrate JJ's 29th birthday. We are thankful for this time together just hours before he was hospitalized. This latest setback punctuates for all of us how tenuous his overall health continues to be despite his slow, steady progress toward health. He does not have access to the internet right now but keep him in your thoughts and prayers. If you like, send hm a post and hopefully he will see it soon. Much love, Linda ( JJ's Mom)