Wednesday, February 27, 2008

UCLA Update

Dale is still at UCLA. The pneumonia is better but the GVH (graft vs. host) disease to the liver is worse. The bilirubin in now 18. (direct bili 10.9) Dale is very jaundiced and his eyes are very yellow. If the bilirubin does not improve by tommorrow, a liver biopsy is planned. Dale is more comfortable. He is not in pain and his skin rash is much better. The only thing keeping Dale in the hospital is his sick liver. The hardest part of the day is when the nurse hands us our lab values for the day. Hopefully we will be greeted with good news tomorrow. Grace and peace......

Wednesday, February 20, 2008

Visiting Dale

There is always something to learn from Dale. Dale is currently hospitalized at UCLA. He developed bi-lateral staph aureus pneumonia. Besides the itchy GVH (graft vs. host) rash he has developed and increased bilirubin which is coloring the whites of his eyes yellow as well as his skin. He is an amazing fighter.

Dale is getting Fortaz, Vancomycin, Zithromax, Cyclosporine, Solu-Medrol and Amphotericin B by IV. All of these medications will help his lung infection and help decrease the symptoms of the GVH from the DLI (direct lymphocyte infusion) that he received from Derek.

Dale went for a CAT scan yesterday morning to rule out a fungal infection in his sinuses. If the CAT scan comes back negative they will stop the Amphotericin B IV.

Dale has been fever free since Monday. He needs to meet three conditions in order to be released from the hospital. The first is no fever for 48 hours. The second is his cyclosporine levels need to be between 100 - 200. The last criteria is being able to be on oral antibiotics instead of IV antibiotics. Dale can not wait to get out of the hospital.

What so impressed me on Monday is Dale's drive to accomplish the small goals he sets for himself in his mind. Even though he has such severe body aches he was so determined to get up and walk a short 5 feet back and forth 10 times. He did this through tears and crying as I could tell it was so, so painful. Juliann had to leave the room in tears and I stayed to tell Dale it was okay to stop. I told him... Dale you need to stop now and just sit in the chair.... you walked to the toilet and I think that is good enough... I have never witnessed someone with so much drive and determination in my life. It so struck me with awe. As Dale finished his goal and sat in the chair for a little bit, his body shaking from the chills, and his breathing labored from the pain he endured to accomplish his little goal of 5 laps, I stood next to Dale and rubbed his back gently. I prayed for healing and I prayed as I continued to rub his back that this little gift that God has given us will continue to teach us so many more lessons. God showed me pain and suffering. He showed me guts and determination. He showed me a little boy with so much strength and courage. I prayed that Dale would be healed within his heart. I prayed for peace to flow through his little body as well as healing to his physical body.

Dale thank-you for showing me your sense of humor as well. Remember the froth!! I will let your mommy tell those who ask!!

Dale and Juliann. Thank-you for allowing me to learn so much from you both during my visit. I pray for you all.. constantly. Dale you looked so peaceful sleeping when I left. I could tell that the pain medication was working.

Till next time... Auntie Shari

Just talked to Juliann tonight. Dale is still fever free. He will get a bronchoscopy tomorrow afternoon to further characterize the lung infection..