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......

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..

pictures during the DLI

Derek, our brave donor, is still smiling during the stem cell harvest.




Dale, the grateful recipient , waits quietly as the cells are infused.

Day 2 post donor leukocyte infusion

January 28th came and went quite uneventfully. Derek finished up his Neupogen injections on Sunday 1/27. The last day was tough for he started experiencing some bone pain in the legs and headaches which kept him flat on his back for most of the evening. We knew Derek wasn't feeling well when he turned down dinner. On Monday morning when Derek arrived at the pheresis unit at UCLA, his pulse rate was 130. The nurses asked if he was nervous. Wade accompanied Derek while Dale and I went to the inpatient hospital side waiting for Derek to finish. Derek was stuck with 2 large bore needles and sat quitely as they filtered out his white blood cells. After 3 hours, they collected 2 bags worth each containing about 4 million per kilogram body weight CD 34+ cells ( stem cells) and 170 x 10 8 total nucleated cells ( I think these are the mature white cells). Derek came by to see Dale after the procedure with both arms bandaged with ice packs taped to his arms and a big smile on his face as usual. Derek experienced some tingling in his hands from the loss of calcium during the pheresis but a cup of milk and ice cream from Dr. Moore seemed to due the trick. Actually , Derek still complains of the tingling but I give him a cup of milk and one Tums tablet instead of ice cream. The infusion of Derek's cells into Dale was again exciting to watch. Dale experienced no untoward effects from the infusion. He also received a unit of blood and platelets. His platelets were down to 21,000 and Hgb - 7.7. Dale was discharged the next morning and is now recovering at home. So far so good. He has some grade 1 skin GVH (graft vs. host). His next blood test will be on Friday. The second bag of cells will be infused in a few months. The doctors told us this mini stem cell transplant is a long shot but it has worked in a few kids. Hopefully it will work for Dale. As soon as Dale came home, he was at his desk until 11:00 pm last night catching up on his homework and schoolwork. Auntie Millie and Uncle Eric from Hawaii also came in yesterday to visit for a few days. Dale did take a few breaks to eat and play Rock Band and Guitar Hero with his brothers. We are praying for a miracle. Thank you for your continued prayers as well.......

Day #3 at UCLA

Dose #3 of 5 of VP16, Ifosfamide,Mesna and oral dexamethasone. So far things are going ok. Dale is tired from being woken up every few hours by the nurses or to have to use the restroom. His IV hydration, running at 140ml/hr, keeps his kidneys and bladder from becoming damaged form the chemotherapy but it also makes him "pee" a lot. He told his doctor that he didn't need a room ,just a bathroom with a tub so he would have a place to sleep in there. His Hgb was 7 this morning. This is fairly low so he is receiving a blood transfusion now as I type. There is a directed donor tag on the bag so if you were donor number 8133824, thank you so much for this life saving gift. We were happy to see this tag and it was very heart warming to know that blood and platelets are still being donated for Dale. Dale used to be a B+ but after the transplant last year he is now an O+ which is Derek's blood type. He is starting to feel nauseous. Although, he ate 2 bowls of Grandma June's clam chowder for lunch. Hopefully he will feel better in the morning. During the day, Dale tries to keep up with his school work. In the evening he has been learning the art of Hawaiian printing from a friend from hula. It involves carving out a picture in a piece of bamboo to create a stamp and then using that stamp to makes prints on fabric. Tomorrow Derek is scheduled to come to UCLA to get clearance for the stem cell harvest. This probably involves a physical and some blood tests. We are grateful Derek is willing to help DaLe again. Thank you for your conintued support and prayers.....

Blue skies, sunshine , Dale and a beautiful rainbow at Bellow's Beach on Oahu