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)