Day +133

School is out and we are now in summer mode. So far the days have been packed with summer activities for all three boys.
Last weeks clinic visit went well. Dale's labs are still stable. Last week Friday, the five of us (Wade, Danny, Derek, Dale and I) played 9 holes at Dominquez. We had a friendly family tournament. Actually, it was a dry run to see if Dale would be able to finish 9 holes on his own and carry his own bag. He started to get tired around the 5th hole so we helped him with his bag. He golfed very well. Derek came in first tying with Wade, Danny second,Dale third and I came in last. I was actually more tired than Dale. Today was the first day of FOR golf at Dominquez. Dale joined Derek and friends Cory and Grant in the summer tour escorted by our dear friend and distant cousin Eric. I watched them tee off on the 1st hole and I watched them finish on the 9th. Dale was still going strong and carrying his own bag. Eric probably had his hands full but they all claimed to have a great time. After golf, Dale and Eric went swimming. Derek went off to basketball camp for the afternoon. Dale was not able to participate in the North High School basketball camp this year. He looks forward to participating again next year. Dale , along with Danny and Derek, have really become interested in the show "Planet Earth" on Animal Planet. They watch it Wednesday nights plus they watch the DVD series that Auntie Millie gave them. Tomorrow Dale goes back to UCLA for his next IVIG dose. Thank you for your continued prayers. Grace and Peace to you all....

Day + 124

Dale is doing well and keeping busy. His labs continue to remain stable. The last ANC was 2300. Bili - 0.6, AST - 36, ALT - 17 . Scr 0.8 and cyclosporine - 227. No adjusments in meds was made this week. We are now seeing the doctor every other week instead of every week. Labs are still drawn every week. On Father's Day, Wade, Danny, Derek and Dale sang "Above All" at church. Derek was the main singer. Wade played his guitar, Danny played drums and Wade, Danny and Dale sang back ground for Derek. They did a great job. I was very proud and Wade really enjoyed singing with the boys. It was their first performance all together and hopefully not their last. Rev. Derek mentioned what a miracle it was to have Dale back at church singing with his dad and brothers.(Praise God!) After they sang, Dale went right home since he is still not allowed to be in a room full of people. Later that day, Dale went to watch Derek play baseball in Anaheim and then we ended up at Grandma June's house for Father's Day dinner. We are in the last week of school. It has been hard even for Dale to stay focused as summer vacation approaches. Last week Dale was able to attend the 3rd and 4th grade school picnics. He was in a 3rd/4th grade combo class this year so their class was allowed to participate in both. He had a great time and couldn't stop talking about it. We also had a chance to spend some time at Derek's 5th grade picnic as well. Today was Dale's second golf lesson. He is determined to perfect his swing. We are still taking our daily walks with Eski and reading the newpaper. Have a great week. Blessings to you all....

Day + 118

Dale had a good week. His labs continue to remain stable. The cyclosporine level is finally down to 247. Although the level is therapeutic now they lowered the dose again in hopes to slowly wean him off his meds. The blood pressure was better this week. He never started back up on his blood pressure medication. One of the side effects of cyclosporine is high blood pressure so now that the level is lower so is his blood pressure. He was also told he could go to his class picnic and the last day of school. This bit of news made Dale very happy. Last week our dear Auntie Millie came to visit from Hawaii. We all enjoyed her company. Dale and Auntie Millie baked a very delicious red velvet cake with butter cream frosting all made from scratch. The recipe was sent to us in the mail by our pen pal Percy the penguin. ( Thank you Percy for the recipe!) The day after eating this heavenly dessert, we went to Torrance Beach to walk off some calories. We were entertained by a pod of dolphins playing in the waves. Auntie Millie was a good sport. She even sat through the Sansei baseball awards ceremony and Dale's first "professional" golf lesson. (not just a lesson from mom and dad) Dale thoroughly enjoyed his lesson . Now the ball actually goes where it suppose to. I sit and listen hoping to catch a few tips for myself. Auntie Millie also pointed out to us that Dale keeps our family on schedule. Dale knows exactly who needs to be where and at what time. If we need a reminder, we tell Dale . That way, we know it will get done. Dale also prays every night and he asks God to bless those who pray for him. Dale's faith and spirt through this journey has been and continues to be strong. Thank you all for your continued prayers and support.

Day + 110

Dale is doing well. His surgery sites are healing nicely. He is back to wearing shoes and running around and he is not holding his left arm over his incision site any more so I'm guessing it doesn't hurt as much. Last Friday's UCLA clinic went fairly well. However,Dale's blood pressure was 135/104. He has been off his blood pressure medicine for about 3 weeks now. He was suppose to get another dose of IVIG (immune globulin). This usually raises his blood pressure after the infusion because of the volume of fluids given so in order to give it, they had to lower his pressure. So they gave him nifedipine 10mg sublingually and it dropped his pressure to 88/40 in about 5 minutes. I'm not sure what was worse, the high blood pressure or the sudden low blood pressure. I questioned the dose before they gave it to him but they said it would be ok. Dale just kind of slept through it all after given iv benadryl. His pressure improved after the infusion of IVI
G (105/54) . He was not really bothered by it . It certainly raised my blood pressure. His labs were stable. It was almost the same as the week before. The cyclosporine level is now 296. Although therapeutic, it is on the higher side so they lowered the dose again. On Sunday, Dale played his first and last baseball game for this season with his team the "Twins". He was warmly welcomed by his teammates and had a great time. They won and he came home with a big smile. After not having done much over the last two weeks, Dale was pretty sore the next day but he claimed it was "a good sore." Eating is still not a top priority for Dale and lately not for Derek either after having a new set of braces put on last Friday. Danny, on the other hand, is still eating us out of house and home. Auntie Millie is coming to visit again from Hawaii this Friday and hopefully she can get Dale to eat a little bit more. Dale has not been able to turn down her sweet encouragement and her yummy desserts. We plan to get back into golf and tennis soon. Dale , Eski and I continue to take our daily walks and read the paper together. Have a great week. Thank you for your continued support and prayers.

Day+103

Day + 100 came and went. We were hoping for instant freedom but we were told we need to take it slow. Dale did however eat a sandwich and an apple (peeled of course). He was not able to eat fruits or deli meats until now. He also spent some time with Grandma June and Grandpa and Grandma Miya this weekend as well as his dear friend Keily. Visitation to Grandma's house and the Morimoto house was granted. He was very excited. The only two places he has really been are UCLA and home so this was a big step for Dale. Derek turned 11 yesterday so we had a small birthday celebration at Grandma June's house and Dale was delighted to be able to eat cake and ice cream with everyone. Dale had his port-a-cath(central line under the skin placed about 3 years ago) removed on Friday along with part of his ingrown toe nail. The surgery went well. I think the sight of the toe is more bothersome to me than the incision site on his chest. We go back to the surgeon's office tomorrow for a wound check. His labs were about the same. The Hbg is now 10.1 and Hct - 30 which was exciting. ANC - 1900 Plt - 182,000 The cyclosporine level was still high - 339 so the dose was lowered again. Our next mile stone is the 6 month mark which is August 15th. We are grateful for having reached our first mile stone. Thank you all for your love and support. We will continue to do our best to make it to the next goal. Blessing to you all.....

Day+ 95

This past week was an exciting week for Dale. Auntie Millie and Uncle Eric came to visit from Hawaii. They spent time with Dale just doing what Dale does, taking walks with Eski, sitting on the porch reading the paper and just hanging out. We went to the lake in Harbor City to try to see Reggie the local alligator but he was hiding that day. By Thursday, Dale's surgical wound had pretty much closed up so the four of us went to Dominguez and attempted to play nine holes again. It was a little hard since we hadn't touched a golf club in 2 weeks. Millie and Eric also accompanied us to UCLA this past Friday for his routine clinic visit and IVIG infusion. Unfortunately, the other central line (portacath) had apparently clotted withing the last 2 weeks. When the nurse tried to flush the line with saline, Dale screamed in pain. He has had this line for 3 years and this has never happened. So a periperal line was started in Dale's arm to give the IVIG, and blood was drawn (after 3 attempts) from his arm as well. Later that day a dye study of the line revealed a clot at the tip of the line . As brave as Dale has been over the last few months, this brought Dale to tears. He was scared and in pain. The nurses assured us that this was a common occurance and not to worry. The surgeon was notified and the line will be removed as soon as possible. Other than that, the clinic visit went well. The liver enzymes are now down to AST - 28 ALT - 25 Bili - 0.7. The Hgb - 9.0 Hct - 28.6 Scr - 0.8 (this is slowly rising) The cyclosporine level was still high - 363 so the dose was lowered again. If we could get the cyclosporine level down, hopefully the Scr will also come down. ANC - about 3000. His prednisone dose is now 2.5mg every other day so by next week we hope to be completely off the streroids. Dale continues to lose weight which according to the doctors is a good thing because he could stand to lose some weight. Dale is in good spirits. We are grateful for all of your continued prayers and support. Blessing to you all...

Day +88

This week we had to keep a low profile. Dale's central line started to inch its way out. We're not sure how this happened, possibly the golf , tennis , basketball and handball had contributed to the movement of the line. On Friday, Dale's Broviac line was removed. The removal took place at the outpatient surgery at UCLA. It took all of 5 -10 minutes. He was up and drinking 7-up by the time I got to the recovery room. He was smiling and ready to go. We went to clinic before the surgery on Friday. His labs were stable. The liver enzymes continue to improve. (AST came down to 36) . The cyclosporine level for some reason was still high despite the dose decrease last week so they lowered his dose again. Dale started losing some weight, which is a good thing. His appetite has decreased now that he is almost off the steroids. Eating seems to be a chore for him lately. Life is a little easier with this line out. Dale is still taking it easy until the site heals. Have a good week. Thank you for your continued support and prayers.