Wednesday, January 30, 2008

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.......

Wednesday, January 16, 2008

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.....

Friday, January 11, 2008

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


Dale and pro surfer Bruce Irons at Kalihi Wai on Kauai. We just happen to be at the right place at the right time.

Thursday, January 10, 2008

Holiday highlights

Happy New Year. Dale is still fighting his fight and hanging in there. Christmas was great. On Christmas Eve. Dale sang solo at church during the Christmas Eve. service. He did great and we were all so proud of him. He also sang back up with Derek for Danny's church band at the same service. That was great too. On Christmas day , Dale required a platelet transfusion. His dear friend and nurse from Long Beach came in on Christmas day to transfuse Dale with platelets that were sent in by the Red Cross at Long Beach Memorial Hospital. We were so grateful. The next day the five of us took off to Hawaii for 8 days. We started out on Kauai for 5 days then spent the next 3 days on Oahu. Highlights on Kauai were eating saimin at Hamura's saimin, meeting pro surfer Bruce Irons at Kalihi Wai beach, eating Ono Char Burgers at Anahola beach,golfing at Pua'kea golf course and skate boarding down Uncle Eric's street. Highlights on Oahu were going to Uncle Doug's house (Auntie Millie's brother) and lighting fire crackers until 1am on New Years Eve, going to Bellows with the Takao's and seeing a rainbow from end to end in the water. The best part was spending time with Uncle Eric, Auntie Millie , Nicole and Tobie. Seeing our long time friends from college days and visiting Popo and Gung Gung on Oahu was special too. This was a much needed vacation for Dale and our family. On Tuesday 1/8, Dale went to UCLA for a repeat bone marrow biopsy. His marrow showed an increase of blast cells to 38%. His last biopsy showed 7% blasts after his last chemotherapy regimen. Needless to say, we are starting back up again. On Monday Dale will be at UCLA for 6 days receiving chemotherapy. We have decided to try a different approach. Dale will undergo a donor leukocyte infusion with white cells taken once again from Derek. This time the cells will be taken peripherally from his blood through pheresis (the same way plateletes are donated) and then infused into Dale. This will hopefully boost the marrow and help combat the leukemia. The down side is that Dale will have more graft vs. host effects. Derek will have to go through a series of injection for 4 days prior to the harvest. The transfusion is scheduled to take place on Jan. 28 if everything goes as planned. We hope and pray that all goes well. Hope you all had a wonderful holiday too......