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Tuesday, May 29, 2007

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.....

Monday, May 21, 2007

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...

Tuesday, May 15, 2007

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.

Tuesday, May 8, 2007

Fishing at Irvine Lake


Monday, May 7, 2007

2007 Ride for Kids



Dale's first experience riding a motorcycle at the 2007 Ride for Kids event at Honda Headquarters with Alan Kusumoto.

Sunday, May 6, 2007

Day + 80

This was an eventul week for Dale. His labs are stable. The liver enzymes were pretty much the same (AST- 40 ALT - 40 Bili - 0.6) The ANC - 2600 Plts - 117,000 Hgb - 8.8 Hct - 27 His blood pressure at clinic was 88/40 so he is now off his blood pressure medicine. He has completed his antibiotic course so he taking 4 pills less a day now. Actually 5 pills less because his cyclosporine dose is less now too. The last level was 326 ( goal 250-300) This week we hit balls at the driving range on Tuesday and played 9 holes on Thursday. Well, not all nine. We needed to be somewhere at 2pm so we had to skip 2 holes. We played at Dominguez. Dale did very well. He out drove me on the first hole. His ball went straight and rolled onto the green. My ball went right . Wade was able to join us and his ball went right too. This was pretty much how it was for me for the rest of the holes. Luckily we didn't keep score because Dale probably would have beat me. Later that day, Dale went running at the Gardena High track with Danny , Derek and the 719 boyscout troop. He ran a couple of laps with his friend Noah. He was sore up until Saturday. We played tennis on Wednesday for about 20 minutes and on Friday after our clinic visit at UCLA, Dale and I went to Irvine Lake and went fishing with Glenn ,Shari and Dan(Glen's brother) Morinishi. We were able to fish for about 1 1/2 hours. Dale really enjoyed riding on Uncle Glenn's nice boat and just holding the fishing pole. Earlier that day, they had caught 4 trout. 1 was 5 1/2 pounds!! The others ranged from 2 1/2 to 3 1/2 pounds. It was amazing to see such big fish come out of such a small lake. All of this extra curricular activity occurs after his school time with his teacher and after homework is done. It sounds like we are playing all day but Dale does have a pretty heavy school load with work assignments from both his Arlington class and his home school teacher. On Saturday, Dale went to go watch Derek play basketball. The gym was fairly empty and Dale sat in a chair by the door. Sunday (today) was a very exciting day for Dale. He went motorcycle riding with Uncle Alan Kusumoto. It was a fundraiser sponsored by Honda. Alan was one of the bikers who participated in the Ride for Kids to raise money for the Pediatric Brain Tumor Foundation and asked Dale if he would like to ride with him. Dale did not hestitate and quickly accepted Alan's invitation. He hopped on the back of Alan beautiful motorcycle and rode around Palos Verdes Peninsula along with hundreds(?) of other motocyclists. The ride was about 1 1/2 hours long. Dale had a blast and mentioned he wanted to do it again. This Friday May 11, Dale will be having surgery to have one of his central lines removed. Have a great week . Blessings to you all......