Monday, December 17, 2007

more pictures of golf

Day 17 on Maintenance

Dale is now on maintnenace chemotherapy which consists of iv chemotherapy twice a month and pills every night for the month of December. The leukemia is still present in his marrow and blood. He was not able to get into remssion from the induction protocol last month. It was a long shot since the chemotherapy regimen was fairly light for a three time relapse. He had about 7% left in the marrow. The peripheral blood shows 12% blasts. Normally, you should not see any in the blood. Despite all that, Dale continues his studies and manages to play golf , basketball and occasionaly go to hula. His last ANC was 1200, Hgb-8.3 and Platelets 77,000. The platelets went up as high as 109,000 but with the start of the maintenance (6-MP) the platelets have dropped . Highlights for the past few weeks have been playing in a golf tournament at Malibu Country Club,going to see the Christmas Story at the Chrystal Cathedral with the Chong family, and going to see the UCLA Bruin basketball game and watching his favorite player Josh Shipp in action. The golf tournament was planned especially for Dale. There were 10 teams consisting of adults and kids. Dale and his golf teacher/friend Ryan traveled around playing 1 or 2 holes with each team. At the end of a long day, he told me it was one of the best days of his life. Dale was not feeling well the day before and the weather was questionable but on Saturday morning he woke up to blue skies and a lot of sunshine. He did not complain of any nausea or fatigue. He was running around the course with a big smile on his face all day. Uncle Kirk was able to get a cart cover to keep the wind out and a small heater to keep him warm. Although, I think Auntie Shari was riding in that cart more than Dale during the last 2 holes. Just as well, because it gave Dale a chance to drive with me in my cart. I was scared but he had fun. Luckily we did not damage the course or run into anything. Dale is now going to school for about an hour and a half every day. He loves going to school and seeing his friends for this makes him feel somewhat normal. Dale mentioned to me yesterday that he made a basket during his game and it sounded like the whole gym cheered for him. He also mentioned how good it made him feel when his whole team gave him "high fives" . As you can see, Dale continues to hold his own for now. Thank you for the prayers that keep Dale going. Wishing you all a blessed holiday season.....

Sunday, December 16, 2007

Dale's Golf Tournament At Malibu Contry Club
December 8, 2007

"Just grip it and rip it!"


Sunday, November 18, 2007

Day 30 of induction protocol

Dale managed to get by this week without a transfusion of any kind. Last week he required both blood and platelets. If you were donor number 8132754 , thank you for your platelets. On Friday, Nov. 9th Dale's platelets were 32,000. The doctor told Dale he probably didn't need a transfusion just yet but since there was a long weekend coming up he gave him the option of getting one. Dale told his doctor " Someone came all the way up here to donate platelets for me so I don't want it to go to waste" The nurse had checked with blood bank earlier and told Dale that a unit of platelets would be expiring on Sunday. So the doctor authorized the transfusion and Dale was good to go for the week. This week his platelets were 56,000. The Wbc is now 3.0 and the ANC was 1600. Dale's bone marrow is starting to recover from the last chemo. He has just about lost all of his hair but that did not stop him from playing basketball or golf. Yesterday, Wade, Derek and Dale played a round of golf and today Dale played basketball with his team. Last weekend Dale went on a motorcycle ride with Uncle Alan again just for fun. They cruised around and had a lot of fun. Derek was also treated with a ride too. Later that evening Dale attended his basketball team party where they presented him with an autographed #8 Kobe jersey. He was very surprised. I wish I could have captured the look on his face when he saw the signature on the number. Of course, I did not have a camera. Too bad Auntie Shari wasn't with us. She would of had her camera ready. The last few evenings, Dale has been experiencing headaches which the doctor attributes to the lumbar puncture he received on Friday , the 16th. A needle is placed into Dale's spine and spinal fluid is removed and chemo is put in. Sometimes the spinal fluid continues to leak out and this causes the headache. It doesn't hurt as much lying down and tylenol seems to help. We are going back to UCLA on Wednesday to check if he will need more platelets. Thank you for your continued support, blood and platelet donations and for your prayers. Have a wonderful Thanksgiving holiday.

Monday, November 5, 2007

Red Velvet Cake

Cake anyone? It tastes as good as it looks!

Halloween night with Dale and friends

Day 18 of Induction protocol

Dale continues to move forward with his chemotherapy regimen. He has completed the series of leg shots with the Erwinia. He received a total of 13 shots into the thighs. The shots were painful but he iced his thighs before the shots which seem to help more than the numbing cream (lidocaine cream). A week ago on Oc. 29th, Dale's platelets dropped to 16,000 so he received another unit of platelets. If you were donor number 8132443, Dale reveived your platelets. (Thank you !) From what we've have heard, many very generous people have gone down to UCLA to donate blood and platelets for Dale. We can't tell you how much we appreciate your time, help and support. As of 11/2 his platelets were still 82,000. His white count had dropped to 0.8 and ANC - 300. He is neutropenic but this also means that the chemo is doing its job. Hgb - 9.2 . He will continue to receive i.v. vincristine and oral steroids (prednisone) for the next 2 weeks. The vincristine is given once a week. On Halloween, Dale participated in his school Halloween parade and later went trick or treating with the Kitani boys , friend Kelly and the Chong family. He had a blast. We walked for blocks. Dale was "Jack Sparrow" from Pirates of the Caribbean and Derek was the hammerhead shark from the same movie. We were also treated with a visit from our dear Auntie Millie from Hawaii. She arrived on Halloween and just went home today. During her stay with us, Auntie Millie and Dale baked a beautiful and delicious red velvet cake. The boys always enjoy having Millie visit. She only left a few hours ago, but we miss her already. Dale's hair has now started to fall out again. I think this bothers me more than it does him. I try to remind him that his hair has always grown back so not to worry. It's such a shame to see his beautiful curly hair on the floor and not on his head. We are trying our best to keep our heads up and spirits high. Dale has continued to show unbelieveable strength and courage. Please know that this comes as an answer to all of your prayers. His strength is a God given strength. Thank you for your prayers.....

Saturday, October 27, 2007

Dale'e new friends

Dale at UCLA with Brandan Baker and Yuji Okumoto from "Johnny Kapahala - Back on Board"

Dale'e new friends

Starting over-day #8 induction protocol

It feels like weeks since we received the news about Dale's relapse. He looks great and is in good spirits as always as the rest of walk around in a daze. When he sees tears rolling down my cheeks, he always asks why I am crying. Dale's chemotherapy regimen consists of Vincristine, Erwinia Asparginase and prednisone. This protocol is not new to him so he was comfortable restarting this regimen. We go to UCLA every Monday , Wednesday and Friday for chemo. Dale's central line was placed back in on Monday. He has had so many central lines put in and taken out that this was really no big deal for him. Last Wednesday Dale was treated with a big surprise. Brandan Baker from 'Johnny Kapahala" and Yuji Okumoto who played his father in the movie "Johnny Kapahala - Back on Board" came to UCLA and spent a few hours with Dale and sat with him as he recieved his chemotherapy. Dale received to 2 shots into the thigh and Brandan held his hands tight as the needle went in. Dale and I were both very excited as well as Auntie Shari, Auntie Judi and Wade who came along to meet Brandan and Yuji. We all enjoyed their company. They were so nice. When we got home, Dale told Danny and Derek all about his day with his two new celebrity friends and watched their movie together. It was fun watching the movie again after meeting them. Today, Dale played in the FOR golf tournament with his good friend and golf teacher, Ryan Yahata. They came in second place and Dale won a set of golf clubs in the raffle. He had a great time. They played 18 holes at Dominguez and Dale did not get as tired as I thought he would. As I watched him walk across the 18th hole, he looked so happy. He was smiling ear to ear. So far Dale has received a unit of blood and a unit of platelets. He will probably need another transfusion of platelets on Monday. Dale's hemoglobin was 6.4 before the tranfusion and now it is 10.8 His lips and his cheeks are pink again. We would like to thank all of you who have donated blood and/or platelets for Dale. Our goal at this point is to get Dale back into remission and maintain his remission with maintenance chemotherapy for as long as we can. The doctors believe he will only have a few months before the cancer returns. Dale's bone marrow will be tested again at day 21or 28. Thank you for your prayers and words of encouragement. It is what we need most. Grace and peace......

Wednesday, October 17, 2007

October 17,2007

(Posted by Shari)

Dale has been doing so well over the last 8 months after his bone marrow transplant. Unfortunately on Tuesday the Inouye's received bad news. Dale's leukemia reoccurred. Dale had another bone marrow biopsy on Tuesday which confirmed that the leukemia has repopulated his bone marrow. Today Dale went back to the clinic where he received a unit of blood and treatment options were discussed. He will be admitted tomorrow for port-o-cath placement and initiation of chemo. He will probably be hospitalized for about 4 days. Needless to say Dale was disappointed in hearing that he will need further treatment. Dale is a stoic little fighter and it is encouraging to see him still able to smile.
The hope with this next chemo treatment is to get back into remission. The Inouye's appreciate your prayers for strength and healing.

Am I handsome or what? Got Blood?

Falling Asleep On The Job


Wednesday, September 19, 2007

Day + 217

Dale is now 7 months post transplant. He continues to do well. His labs are stable and is currently in the process of weaning his anti-rejection medicine. He in now only on 1 cyclosporine pill a day. We hope to be completely off this medication in a couple of weeks. A few weeks ago the doctors told us that the blood tests showed Derek's marrow has engrafted. What a blessing!!! Dale is still not allowed to go to school just yet so he continues to home school . We still have the same home school teacher and Dale really likes her. In fact, we all really like her. Now that Derek is in middle school , Dale has to go to his class every day to pick up and turn in his assignments. Although he cannot stay , he enjoys seeing his friends and teacher for a few minutes every day. He works hard to keep up. He rarely takes breaks unless it's time to eat or take Eski for a walk. He takes one afternoon break to go outside and play. One of Dale's favorite things to do during his break is to go next door and bring our neighbor's dog Biscuit over to play with Eski. They love to chase each other around and Dale watches over them while shooting baskets in the yard. When the two dogs are too tired to move, Dale puts Eski in our backyard and Biscuit goes home. Sometimes Biscuit plays in our backyard and we take him home later. Dale continues to play basketball with his team. He has practice once a week and games on the weekend. He is allowed to play as long as no one on the team is sick. He also attends a Fundamentals basketball camp on Saturday. He continues with his piano and hula and is starting back up with his violin lessons. We are grateful for all that Dale is able to do as we wait patiently with grateful hearts for the things he wants to do but can't. Thank you all for your continued support and prayers.

Tuesday, August 21, 2007


Proud Fisherman at Tenaya Lake in Yosemite National Park

Mr. Yamazawa (ALL bone marrow recipient) presented Dale with a thousand cranes before having lunch at Grandma June's house.

Day +187

Dale has now officially passed the 6 month mile stone. He is doing well. His hair has grown in very curly and has lost 20 pounds since his discharge from the hospital. He is now looking more like Danny instead of Derek. Although lately Dale has developed allergies very similar to Dereks. He never used to sneeze or have the sniffles. Derek on the other hand is very sensitive to allergens and sneezes all the time. So interestingly, Dale's body is reacting now to different allergens much like Derek. I thought he caught a cold but his latest blood work showed 11.7% eosinophils (upper limit - 6.4%) . Dale is now off Cellcept. He will be weaned off the cyclosporine next. His labs are stable. 2 weeks ago , Dale joined his brothers in Las Vegas for a basketball tournament. Dale was allowed to participate in the tournament. He also joined his team in the river pool at the MGM after the last game on Sunday. Dale was good about wearing his mask inside the casinos as we walked through to go to our room. Meals were a little tricky since Dale is still not allowed to eat fast foods or buffets. Breakfast was cereal in our room and lunch was peanut butter and jelly sandwiches eaten in the car as we traveled from one of his games to either Danny or Derek's games. We ate in non crowded restaurants for dinner and asked if they could microwave his food after it was prepared. One night, Dale and I ordered plate lunch from the "Cal" and brought it back to our room to microwave and eat while Derek joined his team at a seafood buffet . (Yes, we brought our own microwave) We came home Monday and in 4 days Derek, Dale and I were on a bus to Yosemite to meet up with Wade and Danny who had been hiking with the boy scouts (Troop 719) for the last 5 days. We spent 3 days in Yosemite. 4 boys(Derek, Dale, and friends Noah and Yoki) and I went fishing at Tenaya Lake as we waited for the hikers to come out. We caught 4 fish in about 3 hours. Each boy caught a fish which was very exciting. This was the first time fishing without a net for me so bringing it onto the rocks was quite a challenge. Derek was the only one willing to get his boots wet and catch the fish with his hands so the line wouln't break while bring the fish out of the water. Yosemite was beautiful and we all had a great time. The boy scouts and dads came out hungry and very dirty. Prior to leaving for Yosemite, we met a man who also had ALL like Dale and received a bone marrow transplant 4 years ago. The donor was Wade's cousin. Mr. Yamazawa is orginially from Japan and now resides in North Carolina. He owns a Japanese restaurant and is a sushi chef. He presented Dale with a thousand cranes, each crane folded after 3 hrs of chanting (Buddhist) first. So after 3,000 hours of chanting, 1000 cranes were folded, strung together and given to Dale. He said many of his friends around the world helped to make these cranes, again each person chanting 3 hrs before folding one crane. Each person also had a photo of Dale and some background information so they knew who and what they were chanting for. Dale noticed that some of the cranes were folded with christmas wrapping paper and other types fo paper. He explained that origami (japanese folding paper) is not available to everyone so they use whatever type of paper they had and cut it into 4 x 4 squares. Mr Yamazawa is a humble man filled with much gratitude. He now travels back and forth to Japan visiting other cancer patients trying to give them a glimmer of hope. It was a wonderful experience meeting him. Dale has now received over 5,000 cranes . We are grateful for the love and support he has received and continues to receive. I apologize for the long post. Grace and peace to you all......

Saturday, August 4, 2007

FOR Golf tournament

Day +170

Dale continues to do well and has been quite busy the last 2 weeks. Thursday, Aug. 2nd was the last day of F.O.R. golf. Dale received a beautiful plaque for finishing second in the tournament. We were all surprised and Dale was very happy. Dale and Derek have also been attending the "Fundamentals" basketball camp with Coach Kitani and his staff for the past 5 days. Dale was extremely sore the first few days but as the days went on he felt better. Dale came home everyday tired yet happy that he made it through 3 hours of basketball. Yesterday was his once a month doctor visit in clinic at UCLA. The Hb went up to 9.4 and Hct - 29.1. Unfortunately the differential was not available so we were unable to calculate the ANC. The WBC however was 3.77. The liver enzymes remain normal and the cyclosporine level also remains fairly stable at 166. The cellcept is now down to one a day. ( he was initially taking 2 capsules three times a day) Once the cellcept is off, they will start to taper off the cyclosporine. The doctors were pleased with his progress and encouraged Dale to keep up the good work. During his free time, Dale enjoys reading "Naruto" comic books. Lately, he has been reading these books more than playing with his game boy. He also enjoys watching "Ninja Warrior", a competition of strength and agility among men who have been training for years. It is a japanese show with english subtitles. It is actually quite entertaining to watch. Dale has us all watching it. Thank you for your continued support and prayers. It helps us to stay strong and positive. Grace and peace to you all......

Tuesday, July 24, 2007

Day + 159

Dale is now 9 years old. We are grateful that Dale was able to celebrate another birthday. Every year of his life so far,except maybe the first year, has been a challenge for him. We were told down at UCLA that Dale now has 2 birthday's, his actual birth date and his transplant date. Dale spent most of his birthday playing at Grandma June's house and having a water gun fight with Derek and Uncle Mike. Earlier that morning, Dale received a surprise birthday present from Percy the penguin.(Thank you Percy! Dale really enjoys playing with his new water gun). The day finished with dinner at Grandma June's
house and lighting sparklers and fountains left over from the fourth of July. Danny will turn 16 tomorrow. You start to see how fast time flies when you see how old your children are turning. Last Friday's UCLA visit went well. His labs continue to remain fairly stable. The cyclosporine level this week was 176. ANC - 2100 Hgb is back up to 9.1 Hct - 28.5. Plts - 304,000
He is still taking Cellcept and cyclosporine for now. The Cellcept dose is slowly being tapered off. Dale continues to play golf every week at Dominguez as well as attend his weekly golf lessons. According to cousin Eric, chipping was the challenge last week so Dale snuck in an extra lesson on chipping. Hopefully, this week will be better. Dale also squeezed in some swimming last week too. We have not been walking Eski everyday like we used to and Dale has expressed concern over this.
Danny and Derek's busy schedules have cut into time with Eski. Today, Grandma Miya, Derek and Dale took Eski for a walk.
Thank you for continued support and prayers. Grace and peace to you all.......

Saturday, July 7, 2007

Day + 142

Yesterday we went to UCLA for Dale's clinic visit. He continues to do well. The labs are still about the same. The hemoglobin dropped to 8.8 despite the lower dose on the Cellcept. They will watch it for now. Dale is by no means symptomatic at this point. We will now be going to UCLA every 2 weeks instead of every week for labs and will be seeing the doctors only once a month! We were suprised to hear that our leash was being extended but they said he was stable enough and not to worry. The Cellcept dose was again lowered and the cyclosporine level is now down to 139. Dale has lost about a total of 13 pounds since he was discharged from the hospital. Most of the weight loss is from the weight gained while he was on the steroids. Dale is quite happy with his flatter stomach. We are still working on Derek's . Although I must say Derek is trying harder to lose some inches now that Dale is so much slimmer. Danny, for some reason despite all the food he eats,does not have a stomach. The doctors were also very happy to hear that Dale is staying active. They told us the more physically active Dale is, the faster the recovery. On the Fourth of July , Dale and Derek went swimming and finished the night at our Uncle Butch's house for dinner and fireworks. There was a lot of smoke but Dale put his mask on was out there with the rest of the cousins lighting fireworks and watching the spectacular Takahashi/Yamane (our cousins) firework display. OnThursday, Derek and Dale went out and played their second round of golf (9 holes) at Dominguez with FOR Golf. Both boys claimed their putting was terrible which was why their score was 2 points higher than last weeks. Dale this week waited a day before calling his golf teacher with his score. Last week he called him as soon as he got home. Ryan, being the great teacher that he is, reassured Dale that he did well and 2 points is not big deal. Later that evening, Dale joined Derek's team at basketball practice. He had a great time. Dale grew up being around Derek's basketball team so they are all like brothers to him. He woke up the next morning suprised that he wasn't as sore as he thought he would be. The doctors told us practicing with ten "healthy" boys should be ok once a week. So far everyday this week the boys have been filling up water balloons and throwing them at each other until they are completely soaked. Well, Derek and Dale are soaked. Danny somehow manages to stay dry. Yesterday was the one year mark of our dear Grandpa George's passing. Our family together with Grandma June went to the cemetary. Grandma June is incredibly strong and has held herself together very well. As I watch Dale say his prayers every night, I think of all of you who continue to pray for Dale. We are grateful for your continued prayers and support. Blessings to you all..... Have a great week.

Thursday, June 28, 2007

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....

Tuesday, June 19, 2007

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....

Wednesday, June 13, 2007

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.

Tuesday, June 5, 2007

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.

Tuesday, May 29, 2007


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......

Sunday, April 29, 2007

+ Day 73

Dale had another good week last week. Clinic on Friday at UCLA went well. He received another dose of IVIG (immuneglobulin). His labs were about the same. The liver enzymes continue to improve AST - 36 ALT - 49 Bili - 0.5. The doctors were very pleased with this. Scr - 0.5 and the ANC 2300. The Hgb dropped again to 8.9 and HCT - 27.2. This was a little disappointing but they are keeping a close watch. The magnesium also dropped ( a side effect of the cyclosporine) so Dale has to take yet another pill to supplement the magnesium. A low magnesium and a high cyclosporine level may cause seizures but luckily Dale's cyclosporine level was 280 (goal for Dale 250-300). There is always something to worry about. The prednisone is now down to 5mg/day. Last week we went to the driving range twice and the tennis courts once. We take Eski, our dog, on our walks now . She seems to finally understand that she can't jump all over Dale like she used to. Dale has started to show more interest in basketball again. For a while he had stopped practicing because he said he wasn't strong enough to reach the 10 foot basket. We suggested he try and much to his surprise again he was stronger than he thought. Now he is outside almost everyday shooting until he makes 15 - 20 free throws. He had Danny shagging balls for him the other day. It's usually the other way around. Having his central line dangling on his chest probably plays some part in his hesitantcy to play like he used to. Hopefully, the line will come out soon. Until then we do our best to tape it up so it doesn't get in his way or accidentally get pulled out. Dale misses playing with his friends. I am constantly reminding myself to be grateful for the small victories. We have much to be grateful for. Dale never complains and I am very grateful for that. Thank you all for your prayers and have a great week.

Monday, April 23, 2007

Day + 67

Dale continues to do well. His labs this week are still good. His liver enzymes are now down to AST - 38 and ALT - 61 Bili - 0.6. (This is almost normal) The kidney function remains stable ( Scr - 0.5) Because of the Cellcept added about a month ago, the white blood cells are dropping. It is now 3.67 The ANC - 2600. Plt - 86,000 and Hgb - 9.3 Hct 29.0. It is not however low enough to lower the dose . The prednisone is being tapered slowly . We are now down to 7.5mg/day. His face is still swollen but this should improve once he is off the steroids. The cyclosporine level is still going up and down. This drug causes increased hair growth on the face and body but unfortunately not the head. The hair on his head is starting to come in but in patches. Because of the side effects of the drugs, he looks a little different but he is still Dale on the inside. Dale was also started on some antibiotics for an in-grown toe nail. I didn't think it was a big deal but apparently because of Dale's immunocompromised state, it can become a big deal so they took it quite seriously.
Dale is still very committed to his school work. Derek often complains that Dale hardly spends time with him because he is always at his desk studying. So we ask Dale to take a break and play with Derek. Derek on the other hand has to be reminded to stop playing and do his homework. Last week , in addition to our daily walks and handball games, we went to play tennis at South Park in Gardena and the driving range to hit some golf balls at Dominquez. Luckily, Dale had some ball cards from last summer's FOR golf program and knew how to work the machine so it was fast and easy. It was a windy day so our balls didn't always go very staight. We are planning to go again this week when it is not so windy to see if our ball goes straighter. The wind last week probably had nothing to do with the direction our balls were going but it was a good excuse. Also last week, Coach Harvey Kitani (head coach of the State Champion Fairfax Lions) presented Dale with a Nike basketball signed by UCLA's head coach Ben Howland and the UCLA Bruin basetball team. It was very exciting. They also wrote " For Dale Inouye" "From the UCLA Bruins" Having watched every UCLA game from his hospital room, and reading the "Daily Bruin" (UCLA's newspaper) , Dale recognized most of the players names and their numbers. Some of the signatures were difficult for Dale to read so Danny ready them to him. Danny and Derek were equally ecstatic. I'm sure the 2007 March Madness and UCLA's journey to the final four will be an ever lasting memory for Dale. A big thank you to all of you who continue to follow Dale's progress through our blog and for your continued prayers and support. Grace and peace to yo always....

Sunday, April 15, 2007

Day + 59

We were on spring break this past week. Danny was traveling with the school in Europe so it was just Derek, Dale and I during the day. We played handball, rode bikes and took walks around the neighborhood everyday. Most of the days were spent outside. We encouraged Dale to walk a little farther and to ride his bike a little longer each day and much to his surprise he was able to increase his distance without getting too tired. We went to the tennis courts one day. It didn't go so well but we had fun. I think we got more exercise picking up the balls than actually hitting them. We blamed it on our tennis balls. Although we opened a new can, we concluded the reason we had such a hard time was because our new tennis balls must have been flat. We tried to go the beach on the day it was really windy to see the big waves but it was soooooo windy and cold we took a few steps and walked back to the car. We watched the waves from the car. The beach is one of Dale and Derek's favorite place so seeing the water even from the car was a real treat. The doctor told Dale he could go to church any day except on Sunday because it is too crowed so he decided to go on Wednesday so he could restart his piano lessons. His teacher was very surprised to see him. The lesson takes place in the main sanctuary and the room is completely empty except for the teacher and us so it works out perfectly. Dale still plays his violin at home too. Friday was clinic day at UCLA. Dale went in for blood work and IVIG( immune globulin) . The liver enzymes were better this week. (AST - 29, ALT - 73) The cyclosporine level was high again so they lowered the dose. The steroids are slowly being tapered. He is now on 5mg twice a day. (He started out on 20mg twice a day) While we were in clinic, Wade went to Sprinkles Bakery and bought some of those famous cupcakes. Dale was not able to have any so I ate his share. The red velvet cupcake was delicious. Over the weekend Derek played baseball so Dale and I went to watch the game for a short while. It was his first semi public appearance. He wore his mask and waved to everyone from a distance. I was afraid he would be self conscious about wearing the mask but he really didn't seem to care. He was just happy to be there. Derek's teammates greeted Dale so warmly it really made him feel good. Dale has also been helping me cook dinner these days. He made a couple of casseroles this week (with a little help). Derek was very happy with the new menu and cook. Spring break is now over and Danny will return home tomorrow. Thank you for your continued prayers and support.

Saturday, April 7, 2007

Day +51

We are about half way to day 100. I feel like it has taken forever to get to this point but we are grateful Dale continues to do well. We went to clinic at UCLA twice this week. The wbc and ANC have been stable. The ANC is around 4,000. The Hgb is still 9.6 . The plts are now 97,000. Dale has not needed another transfusion since his discharge from the hospital. Because the platelets have been over 50,000 for more than a week, Dale can now use a toothbrush to brush his teeth instead of the sponge toothettes and he can ride his bike as long as he wears a helmet. The liver enzymes have been about the same. The last AST - 60 ALT - 173 and total bili - 0.7. Since they added the Cellcept (another immunosupressant) the doctors have been slowly tapering his steroids (prednisone). His face and body are puffy from the prednisone so it will be good to get him off of it. The progress is slow but steady. Derek is now home all day because of spring break and follows Dale around the house. We are all happy to be on spring break. Have a great Easter Sunday. Thank you for your prayers. Grace and peace to you all....

Friday, March 30, 2007

Day + 43

It is now 6 weeks post transplant and Dale continues to do well at home. He started home schooling. His first day was yesterday. His teacher is the same teacher he had 3 years ago when he home schooled for a year so there was no first day meet the teacher anxiety. She is wonderful and Dale really likes her. Dale's labs are fairly stable. His ANC has been between 4,000 to 5,000. WBC - 6.1 - 6.4. Hgb - 9.7 Hct - 30.4 Plts - 61,000. He hasn't needed a transfusion since he was discharged but we'll see how that goes. The liver enzymes are however somewhat rocky. It goes up and down. The total bili is now 0.8. It was 0.5. The doctors added a new medication - mycophenolate (MMF) to try to control the upswing in the liver enzymes. They think the reason for the rise is GVH (Graft vs. Host disease - Derek's marrow or Dale's new marrow is "attacking" Dale's liver) His blood pressure is also high from one of his medications so now he has to take medicine for that too. The pill count is now 23 pills a day. He takes them all diligently without question. Today Dale and I went to a tennis court and played a little tennis. He is allowed to play outside as long as he wears a mask and he stays away from crowds.
We didn't last too long. We both got hot and tired but it was fun. Dale still spends most of his day doing is school work. Danny still has a cold so Dale and Danny are not allowed to be in the same room at the same time. Dinner is eaten in shifts. Derek, being the diplomatic brother, sits at the dinner table the entire time Dale eats and then while Danny eats. I make sure Derek is not eating that entire time he is sitting at the dinner table. Those of you who know Derek know that he probably could eat during both shifts. One of their favorite games they play now is Mad Libs. It has all of us laughing. Thank you all for your continued support and prayers. Grace and peace.....

Friday, March 23, 2007

Day +36

Today was our first post BMT clinic appointment. We went in at 9am and finished by around noon. We saw some familiar faces. Some of the attending doctors and fellows who took care of Dale in the hospital were there. Labs from yesterday's blood draw at home by home health were wbc - 5.0 ANC - 4140 Hgb - 9.6 Hct 27.6 Plt - 100,000. The repeat platelet count today was 75,000. He may need another platelet transfusion again soon. The liver enzymes were up again. If the enzymes continue to increase, the doctors are thinking of adding another immunosuppressant mediation to keep the new grafted marrow from attacking the liver. Not another pill! We hope and pray that liver will start to recover or at least not worsen. Another set of tests showed Dale was not drinking enough liquids at home. So, Dale is on a mission to drink around 2500 ml/day . Dale takes walks around the block now, somethimes even two times around. He patiently waited fot NCAA baskeball to start up again. Yesterday , Dale made a paper chain from paper Percival the penguin sent in the mail.
It has 65 links to represent the count down to 100 days post transplant. He cuts off one link each day, (Thank you - Percy)
Thank you for your continued prayers.

Thursday, March 22, 2007

Dale's team of nurses

This is a picture of Dale with some of his nurses right before he took his first step out of isolation. Check out the balloons . Look familiar? Can you believe it ? They are still going strong!! (Thanks again Chad!)

Day +33 and +34

Day + 33 was Wade's birthday so Dale baked him a cake. He really did bake him a cake . All I did was crack the egss for him because I did not want him to touch the eggs. He wore a mask and gloves to protect himself and baked an awesome carrot cake. He had good training from Auntie Millie. Having a good memory helps too. He remembered things that he and Millie did when they baked the cake together before. I of course, didn't remember. His labs from Monday were pretty good.
wbc - 5.2 Hgb - 9.2 Hct - 27.7 platelet - 183,000. The platelets got a boost from the transfusion on Sunday. ANC - 3375. Dale has since started back on a medicine called Dapsone for PCP prophylaxis. This drug can cause bone marrow suppression so hopefully his counts will continue to improve despite the initiation of the dapsone. His labs will be checked again on Thursday. Having Dale home was probably the best present Wade could have ever hoped for.
Day + 34 - The sun finally came out today so Dale went for a walk down the block after riding his pedal bike thing. He came back with tired legs. The day whizzes by for me now that I don't have the conveniences of the hospital services. We are grateful to have Dale home. Friday is his first clinic visit at UCLA . Thank you for your prayers. God bless you all.....

Monday, March 19, 2007

Day +31 and +32

Day + 31 - Labs wbc 2.84 ANC - 2087 Hgb - 8.8 Hct - 27.4 Plt - 36,000. The liver enzymes came down a little again. As long as the liver enzymes come back down even a little, the doctors are happy. The doctors had told us on Friday if the ANC remained above 1000 and his cyclosporine level on Saturday was therapeutic, then Dale could go home on Sunday 2/18. Well, it all fell into place so Sunday evening, Dale was discharged home!!! Last week Tuesday or Wednesday when they were starting to talk about a goal date to go home, Dale told me that he would be ready to go home on Sunday. I thought it was a long shot since everything had to turn out perfect for this to happen. I told him not to get his hopes up too high but he said Sunday would be the day and sure enough it was. He prayed every night and meditated after his prayers . He calls it "brightening his light" (something he learned from a friend at church) (the light refers to God's love) His faith in God remained strong through these past 6 weeks. He has a long ways to go but he is determined to get there. Dale , although home now is still in protective isolation for 100 days after the transplant. He has to wear a mask when he steps outside of the house. Danny and Derek both had caught a cold so they were at Grandma June's when Dale came home. He went straight to the sliding door where his dog, Eski usually sits. She looked at him and started barking. I guess she didn't recognize him with no hair. As soon as she heard Dale's voice ,she calmed down. He then went into his room and looked around. Danny and Derek eventually came home and Dale ran to greet them but keeping his distance for fear of catching their cold. If Dale develops a fever, we have to go back to UCLA. If he catches a cold, his counts could drop and it would be a set back for him. We have a new set of challenges but Dale slept peacefully in his own bed last night . I think we all slept well last night.
Day + 32 - What? No scrambled eggs and french toast for breakfast? Dale and I realized quickly this morning that breakfast would not be sitting on the table at 8:30 am. ( At UCLA, Dale's breakfast was brought in every morning at 8:30am) By the time Dale and I got up, Danny was gone, and Wade and Derek were almost out the door. We will have to get back into the early morning "rush around the house" routine again. The home health nurse visted today bringing supplies for his central line care. It is now my job to flush his lines with heparin and change the dressing everyday. I miss the nurses already. The nurses and staff at UCLA were really wonderful. We were very happy with everyone who took care of us. I have to say "us" because they took care of me too. Later in the day Dale took a break from his studies , put on a mask and sat outside on the bench on our porch. He said the chiily air was "refreshing". This evening we watched a couple of basketball games (recorded on DVD by one of the dads) that his team, the Pacers II, played a few weeks ago. He really enjoyed watching them play and win! At 10pm, he marched into the kitchen,took his 6 pills and went to bed. I think in one day Dale swallows 16 1/2 pills. I have trouble just taking my vitamins. We are so grateful Dale is home. Thank you all for helping Dale get through his hospital stay with your prayers and support. We ask for your continued prayers as he still faces a long journey ahead. God's Grace and Peace to you all.....

Saturday, March 17, 2007

Day + 29, + 30

Day + 29 labs - wbc - 2.2 ANC - 1600 Hgb - 8.7 Hct - 26.4 Plt - 41,000 We were excited that the wbc stayed in the 2's. The liver enzymes went up a little again but the doctors felt it was still fairly stable. My college roommate came to vist (Kathy O) so we went for a walk to UCLA and had lunch at the what used to be the Treehouse in Ackerman Union. It is fancy food court place now. Sally sat and visited with Dale. We walked through campus back to the hospital trying on the way to remember what each building was called . It was a nice break. Dale of course did his schoolwork and then watched the NCAA games keeping close track of the wins and losses. He proudly announced that he was ahead of me by four teams. So far, Derek and Dale are doing pretty well on their predictions. Dale received a letter from his Arlington teacher today. It brought a big smile to his face as she filled him in on the lastest room 31 news and drama. Dale is very blessed to have such a wonderful teacher and classmates.
Day + 30 labs wbc 2.6 ANC - 1860 Hgb - 8.8 Hct 26.8 plt - 45,000 . cyclosporine level 206 (goal - 200-300) so he just made the cut off. Dale worked on his letter back to his class today. He seemed to enjoy writing to them. After writing the letter, it was pretty much basketball all day. Dale told me he watched every single NCAA game on TV today. I've never seen Dale watch so much basketball. Funny how a little monetary incentive will peak your interest. Dale was started on oral steroids tonight. One more step closer to going home. Thank you for your prayers. Blessing to you all...

Thursday, March 15, 2007

Day +28

Dale is now 4 weeks post transplant. His labs this morning were questionable. Some of the numbers were way off (Hgb- 14.2/ Hct - 42.6) so the labs were repeated this afternoon. They came back better but this time the wbc was 2.98 and the ANC - 2000. That's a pretty remarkable jump from yesterday so they we will be repeating it in the morning. The Hgb/Hct the second time came back 9.5/28.6 which is more consistent with the previous labs. platelets - 61,000. This to me is questionable too. The big step for us today was the i.v. cyclosporine was changed to oral. He took 6 capsules but it was better than being hooked to the iv pole for 4 hrs. Dale worked hard during the day to finish his school work before the UCLA game. We had a lot to do since we had to catch up from yesterday. He finished it all and UCLA won! After the game, Dale and I played "horse" . I lost again. It's not that I didn't make any shots but Dale would make the shot after I made it so he hardly got any letters. He then played with his basketball hat for a while. After dinner, he watched a show one of the nurses told him about called "Are you smarter than a 5th grader?" He really got into it. It was fun to watch. Our nurse today was Dale and Derek's transplant nurse but unfortunately for us, today was her last day at UCLA. ( Good luck Lisa!) Thank you for your continued support and prayers. We could not have come this far without it.

Wednesday, March 14, 2007

Day + 27

Hope you enjoyed the pictures Shari posted. I think the comments that Cory and Glenn come up with are great. Today the wbc went down to 1.44 but the ANC was 850. The Hgb/ Hct - 8.5/26.6 and the platelets 49,000. He may need a platelet transfusion in a few days. Today he received another dose of IVIG ( immune globulin). This infusion is given over about 6 hrs so Dale was not free from the pole today. IVIG offers passive immunity for immunocomprised patients. I made my weekly run to Marukai for Dale's favorite Zippy's chilli today. Derek had his follow up appointment with Dale's Dr. Finklestein (hem/onc) today so we stopped at Marukai on the way home. Derek has recovered nicely. His Hgb is back up to 12.5 Hct - 37.7. After the transplant, Derek's Hgb was 9.7 Hct - 27.7. Dale also had a chance to talk to Dr. Finklestein and his nurse Cindy over the phone while we were there. We haven't seen them since we were admitted to UCLA so it was nice to see everyone at Long Beach today. According to Dale, not much school work was accomplished because he and dad were too busy doing other things. He did not specify what these other things were and I didn't ask either. Percy the Penguin had been a loyal pen pal to Dale. Letters of his/her (?) adventures around the world and all sorts of cool places are still arriving by mail almost everyday. Today, Dale showed me a letter with a picture attached as always but this picture was a picture of Percy with his teacher and the students in his class and another picture with the principal at Arlington Elementary. Percy is a plastic penguin who wears goggles. Dale was very suprised to see that Percy the penguin had visited his classroom. (Thank you for the letters , Percy) Thank you for your continued comments on the blog. Dale and I really enjoy reading them. (Popo, the comments are the first thing I read when I turn on the computer too. Can't wait to taste that pie!) It was really neat to read that friends that we haven't seen in years are praying for Dale too. What a blessing it is to have sooooo many people praying for Dale. It brings tears to my eyes everytime I think about it. Grace and peace to you all.....

Sometimes I feel like i'm loosing my marbles!

Don't you hate it when your stuffed animal passes out?
Out of the way! I know CPR!!!!!!!

(Uggg....can't breathe.....)

Ohhhhh noooo! Hope I didn't crack his ribs!

Dale Armstrong.

Tuesday, March 13, 2007

Day + 26

Dale's wbc this morning was 1.77. We were quite excited about that. The ANC is now 750. The Hgb - 9.0 Hct - 28.6 Platelets 80,000. This set of labs were drawn later at 10 am instead of 3 am. Not sure if this made a difference but we'll take it. The cyclosporine level was 189. (
goal - 200-300) so the dose was increased and he has to stay on the iv type of dosing until the levels are within range. The level will be rechecked on Thursday and if they are ok , the iv cyclosporine will be switched to a pill. This is one more step closer to going home. Dale and I played "pig" today and he won. "Horse" would have taken too long. He also practiced his basketball hat and ball toss. He is getting pretty good at it now. He throws the ball up and dives underneath it to catch it. He's catching more balls now so there is less balls for me to chase and retrieve from under the bed. Dale forced me to ride his bike pedal for 5 minutes today. It wasn't as bad as I thought it would be. I actually felt better after I did it. I didn't get a chance to go outside today but it looked like a nice day from the window. Hope you had a wonderful day and may it be even better tomorrow. Thank you for your continued love and support.

Monday, March 12, 2007

Day +25

The labs this morning were still the same. The wbc and the ANC did not budge. We want to see it continue to increase but for some reason the white blood cells are at a plateau. The doctor stopped the Dapsone that was started last week since his numbers are not continuing to increase as hoped. The platelets were 86,000 and Hgb and Hct were the same. Dale enjoyed his freedom from the i.v. pole for 8 hrs today. He ran around the room . We played basketball and handball and it was a lot more enjoyable without having to worry about the iv line. He played the violin and played with his new basketball hat. You wear the net on your head and throw the balls up in the air and catch it. The balls are ping pong size balls. One of the nurses wanted to try it out. It was a lot of fun watching them . Shari came by and took more pictures. She said she would post some soon. Dale also demonstrated his CPR technique for her. The day went by pretty fast so it was good. Please pray for Dale's new marrow to start making more white cells again. This will be our ticket home. We are thankful for having made it this far. I tried to remind Dale (and myself) that the marrow will kick in when it's time ( God's time) and not when we want it to and when it does it will be very strong. He nodded his head and went to sleep. We truely believe in the power of prayer. Blessing to you all...

Sunday, March 11, 2007

Day +24

Congratulations FOR Pacers (Dale's basketball team) for winning Megalopolis Championship. We were thinking about you guys during game time. Congratulations FOR Knights ( Derek's team) for a job well done too. Those trophies were very nice except Danny accidentally dropped Derek's trophy and it broke. Dale's lab results were about the same today. The platelets after the transfusion were 95,000. The wbc was exactly the same but the ANC went down again to 460. I hope and pray it goes back up soon. (Our goal is an ANC of 1000 x 3 days) The cyclosporine was changed to every 12 hours instead of a continuous infusion. If the drug levels remain stable, the cyclosporine will be changed to pill form. So what this really means is Dale will only be tied to the i.v. pole for 4 hours twice a day instead of all day. From 2pm to 10 pm, Dale will be free to roam around the room. The evening dose will infuse from 10 pm to 2 am. No school work today. He built another lego and watched NCAA basketball. He had a hard time falling asleep tonight because of the time change. I saw him praying under his blanket and he eventually fell asleep. Thank you for your continued support and prayers.

Saturday, March 10, 2007

Day +23

It's Saturday again and the next attending doctor and fellows start their week of service. We've gotten to know most of the doctors now so it's not as worrisome anymore when they switch. The wbc is now 0.81 ANC - 510 Hgb - 8.3 platelets - 27,000 so if you were donor number 8124203 Dale received your platelets today. (Thank you !!!) The liver enzymes were about the same so we were happy about that. Dale finished up his homework quickly today so he could work on his rubic's cube. With a few tips from Wade and the internet, he was able to figure it out. I took a nap while Dale did his daily exercise routine. He was sweating by the time I woke up. Oh well, maybe I'll join him tomorrow. Tonight while Wade and I were at an Eagle Scout Court of Honor banquet , Auntie Kari, who is also Dr. Kari sat with Dale for us. She is also a CPR instructor for her fellow dentists so she taught Dale how to do CPR using an ambu bag . The nurses were giggling and watching from the little window on the door and offered to be his " dummy" to practice on. Dale used his stuffed animals. He demonstrated for me and I have to admit his CPR technique was pretty good. He checked the airway, the carotid pulse and told me to call 911 for his furry little friend. His compressions were quite impressive. If he could take and pass the written exam, I think he could be certified. Needless to say, he had a lot of fun. Dale stayed up late again telling me all about his night with Dr./Auntie Kari. He said his prayers and then he was out like a light. Praise God for all the different people that have come into our lives and helped us during this time. We are forever grateful.

Friday, March 9, 2007

Day +22

This morning the nurse told us it was the first time she has seen Dale smile. The wbc stayed the same - 0.73 but the ANC went up to 525. Platelets 32,000 Hb went up to 8.3 and Hct - 26.5 No transfusion today. We'll see tomorrow if he will need more platelets. Dale spent the day doing his schoolwork. We are now doing multiplication time tests. He rode the bike pedal this morning and did some light exercises this afternoon. When the platelets get low, we worry about bleeding. Dale tends to get nose bleeds so he is not allowed to blow his nose or anything that may increase the pressure in his nose. Derek came to to visit tonight again. We played poker again. This time Wade won the all in hand. We are grateful for every little positive step in Dale's blood work. Thank you for your love and support.

Thursday, March 8, 2007

Day +21

Horray! 3 weeks post transplant. The wbc is now 0.76. ANC 469 Platelets 46,000 and Hgb has dropped to 7.7 Hct - 23.3 . No transfusions today but probable in a few days if not sooner for blood and platelets too. The liver enzymes are back down again ALT - 138 AST - 48 Bili - 0.5
As the doctors have said, these numbers will go up and down. (normal ALT is between 4-45 and normal AST - 7-36 ) Dale rode the foot pedal bike thing for 7 minutes this morning. He still jogged around the room for 5 minutes later in the afternoon. I am surprised he has the energy to do this with a Hgb of <8. He was yawning a lot this morning while he was doing his math. I couldn't tell if he was tired from the anemia or from staying up too late again. Dale was also started back up on Dapsone today ( another medication to prevent pneumonia in immuno-compromised patients) Wade came up again for the afternoon and watched the UCLA basketball game with Dale. I went home to watch Danny and friends Jordan and Matt at their swim meet at the Plunge today. Danny and Jordan along with 2 other team mates won their medley relay and 200 free relay. (Popo - Jordan won the breast stroke race . Kenny was there taking pictures and thank you for the yummy snacks) Dale called me every 10 - 15 minutes with an update on the UCLA game and I updated him with the results of the swim meet . I could not believe it when he told me UCLA lost in overtime. I think everyone at the pool side heard me yell "what!!??? They LOST!!!!" By the time I made it back to UCLA, Dale had finished up his school work and was playing with a rubic's cube. Derek's isolation or incubation time from the chicken pox exposure is now over so he came to visit Dale tonight.(just in time because Wade's computer died today so we can't use the web cam) Dale was really happy to see Derek. He told me after Derek left that it was good to see him in person. Before Dale went to bed, we talked about what we would pray for tonight. He said a prayer for all of you who have been praying for him. Please know that he is very grateful for each and every one of your prayers. He also prayed for the boy across the halll who had a BMT last week and wasn't feeling so good today. Blessing to you all.

Wednesday, March 7, 2007

Day +20

Today was almost a carbon copy of yesterday except Wade was here for part of the day. The wbc is now 0.64. ANC - 390 ! The ANC has to be at least 500 for a few days before you get to go home. The Hgb/Hct is the same. Platelets are down to 58,000 but since they were above 50,000 Dale played basketball and ran around the room again. He said his stomach muscles were sore from doing sit ups. Our BMT dentist/friend brought Dale a stationary foot pedal thing like on a bike but it is just the pedal part so it doesn't take up too much room. We are both looking forward to trying it in the morning. The hospital teacher was absent today so Dale worked on his own today. Later this evening, Wade and Dale watched the NCAA basketball tournament until it was time for Lost. Dale watched Lost while I changed his central line dressing. He doesn't seem to mind as much when I peel the tape off his skin when he is watching tv. The other day I peeled it too fast and took some of the skin off too. This can be a source of infection so I had to apply topical antibiotics until it formed a scab. It looks better today. We are grateful for these uneventful days . Thank you for your prayers.

Tuesday, March 6, 2007

Day +19

This morning the doctors rounded really early. They came in about 7:30 a.m. and Dale and I were out cold. They didn't have much to say which is a good thing. The wbc is now 0.55. ANC - 240! plts = 95,000 . The liver enzymes went up again. (ALT - 184, AST = 80) I was concerned but the doctors were not. They said they have seen much higher. This is the highest level for Dale so far which for me is worrisome. But like everything else, Dale is in God's hands so I am trying not to freak out over everything. Since the platelets were high enough, Dale and I played handball and basketball twice today. He jogged in place for about 5 minutes and broke out into a pretty good sweat. He said it felt good . I started to jog in place with him but I quit after 2 minutes. We tried some new exercises yesterday from a magazine I was reading but we both woke up with a back ache this morning so we didn't do those again today. Instead, Dale did some crunches and push ups. I sat and watched. The evening was spent doing homework again but this time with Auntie Wendy. I went home for a few hours to help Derek start on his new project for the Science Fair. Thank you for the comments on the blog. We really enjoy reading them. ( Thank you Noah and Millie for writing everyday) Thank you for your prayers too.

Monday, March 5, 2007

Day +18

Today was a pretty good day. The wbc is now 0.38. ( I can't wait until we get to 1.0) The Hgb/Hct is about the same but the platelets dropped to 23,000 so Dale received platelets from donor # 8124031. (Thank you!)
Today was also the day his other port needed to be flushed. He was a little nervous about having someone new (someone other than his Long Beach nurses who knows how tricky this can be) access his port. But all was well , the port drew blood and the line flushed easily. Praise God! After the platelets were infused, Dale was able to do his exercises, play basketball and handball again. We played for quite a while. He also practiced his violin for about an hour. It took about 20 minutes to tune first. (Rick/Kathy - I think he's ready to learn a new song)
This evening, Dale and I played poker and Texas Hold'em. I thought I was winning until Dale suggested we go all in so I foolishly did and like always, Dale came up with an unbeatable hand and took all my chips. After I lost all my chips, Dale suggested we play for " chores " but I said "no". game over. He spent the rest of his evening doing homework and reading. This was his choice to sudy not punishment for taking all my chips. He also made sure Derek finished his poster that is due tomorrow. He sat in front of the web cam constantly telling Derek to get back to work. Derek gets easily distracted so Dale tries to keep him focused. We hope that all is well outside of our UCLA world. Blessing to you all.

Day +16, +17

The weekend went well. No transfusions. The wbc today was 0.28. He actually had an anc around 200. That was exciting. (anc=absolute neutrophil count) The Hgb went up to 8.1 on its own without a transfusion. Hct - 23.3 . The liver enzymes are a little better (ALT-142, AST-44). The platelets however keep dropping. It was 36,000 this morning. They told us this would be the last to come up. He will probably need another platelet transfusion tomorrow. I spent Saturday at home with Derek and Danny. It was fun doing things with them. We have a new set of doctors again but they are really nice and very encouraging. They all take the time to explain things and answer any questions Dale or I might have. We didn't do much exercising today because of the low platelet count. We watched a DVD made by some very funny friends to entertain and cheer Dale up. It did what it was suppose to because he laughed through the whole thing. (Thank you and well done!!) Later in the day, Dale wanted some peace and quiet so he turned the TV off and started to read a book. He told me I could go even though Wade had not arrived yet because he wanted some "quiet time" so I did. I did not realize I was so noisy. Dale continues to eat well, maybe too well at times but it makes the nurses happy. He also stays up late still. Our schedule here is a little off. Thank you all for your prayers.

Friday, March 2, 2007

Day +15

Well it turns out that Dale doesn't need a blood transfusion today. The Hgb - 7.6 but the Hct went up slightly to 23.1 so it didn't change much from yesterday. Today's blood work showed 28.6% nucleated red blood cells which are immature red cells which means his new marrow is trying to make some red cells now. The wbc is 0.17, slightly up from yesterday. plts - 85,000.
Dale practiced his violin today. It was relaxing for both of us. He was given a project by the child life specialist to take pictures of his room and write about what it is like to be in the hospital and in particular, this room. She then takes the pictures and stories and uses it as a teaching tool for the nurses. Dale wrote the worst part about the BMT was that he can't eat the things he wants to (i.e sushi, salad, fresh fruit,) and it's boring living in the same room day in day out. He also wrote it is exciting when the doctors give you good news but the best part is having your donor be your brother. He ended with this sentence " Bone marrow transplants are all not the same but I know it is a little hard for everyone." I find it amazing that he only views this experience as "a little" hard. Dale brought out the nerf gun today and shot at the little window on the door for a while. We thank God for all of the little miracles we have experienced so far. Blessing to you all.

Thursday, March 1, 2007

Day +14

Today is 2 weeks post transplant. Dale's wbc is now 0.15. It increases ever so slowly and hopefully it continues to increase. Dale received platelets today. If you were donor #8123929, thank you very much. His platelets were 24,000 this morning. The Hgb is down to 7.9. Hct - 22.6. He mentioned this morning that he felt tired and weak so he will possibly receive a blood transfusion tomorrow. The liver enzymes continue to increase. The ALT is now 174 and AST - 67. Total bilirubin is 0.4. The doctors suspect the GVH (graft vs. host disease) is flirting with the liver. Other than this, there are no other signs of GVH but it is still very early. Sally came to sit with Dale so I went for a jog through Westwood. It was fun seeing some of the shops and restaurants that were around when I went to school here. I also visited with 4 pharmacists that I used to work with when I was an intern at UCLA. (almost 21 years ago) I was the only one that had aged . They looked the same. Dale spent the day doing homework and building legos. Dale invited me to participate in his daily stretching and exercise routine. I must be gaining weight if he asked to me exercise with him. We also spent some time shooting baskets. No handball today. Around 3:15pm , Dale waits for Derek to call. Derek calls everyday after school and then about 4 or 5 more times after that to see what we are doing and to see how Dale is. He also wants to know which nurse is working and somehow ends up chatting with the nurse instead of us. Danny calls once a day , twice if he needs something.
Thank you for your prayers. We hope and pray that Dale's liver will be able to sustain the heavy load that has been put upon it. Grace and Peace to you all.

Wednesday, February 28, 2007

Day +13

Dale finally finished his Ben Franklin project. It is due tomorrow. Derek finished his president's report yesterday. Now we can relax for a few days until the next assignment. No transfusions today. The Hgb stayed at 8.5 and the plts - 56,000. Maybe tomorrow. One of the hardest parts of the morning is when the nurse hands you the lab results for the day. I always want to know what the plt count is first. Dale's mouth sores are healing and so is the bottom although he still complains it hurts a little still. No real significant signs of engraftment yet. Dale received another dose of IVIG (immune globulin) today. The nausea medicine is now only given if needed instead of around the clock. He continues to eat well. Grandma made miso soup for him tonight and he really enjoyed it. Wade came up for the afternoon and the two exercised then watched Naruto movies . Who knows what else they did while I was gone. Thank you for your continued love and support.


Tuesday, February 27, 2007

Day + 11 & Day +12

Day +11 was a pretty good day. Shari came to visit and took pictures as you can see on yesterday's blog. The platelets on 2/26 were 104,000 after the transfusion on the 25th. If you were donor number 8123720, thank you for your platelets. The platelet bags that were donated for Dale that do not get used on him are released and used on other patients in need of platelets so thank you again to all of Dale's donors. The Hgb is now 8.6. Hct - 24.6. He's getting closer to needing another blood transfusion. Later in the afternoon yesterday, Dale received the biggest and most unusual bouquet of balloons I have ever seen. It was awesome. The nurses were in awe too. Unfortunately, the balloons were latex balloons so the hospital didn't allow him to keep them so the delivery person from "Balloon Celebration" in Westwood took them back and brought back another huge bouquet of balloons, this time all mylar . It was so big, we gave some to the other transplant kids so we would have some room to move around. Dale was so excited.
(Thank you Chad) One of the balloons is a huge sun with a smiling face. It is nice to have the sun in our room. I will try to post those pictures on the blog . Now that Dale is eating 3 meals a day, the TPN (iv nutrition) was stopped as well as the Acyclovir (anti-viral - he finished his 5 days course). His iv pole looks bare now. The cyclosporine level is better ( 265 ) and so is his blood pressure. We worked hard on finishing the Ben Franklin report and puppet. There's still a few more things to do.
Day +12 - Dale is up finishing up the cover page for his report and then on to finishing his puppet. Morning labs - wbc - 0.09 (this goes up and down). He received an extra dose of methotrexate yesterday to slow down the grafting process so this might account for the slight drop. plts - 65,000 Hgb and Hct are still holding at 8.6/24.1. Scr 0.5 . Hopefully the day wil be uneventful with no new surprises (medically) .
Captain Barbossa -
Hi ya matey! It seems the crew is having a blast. Just checking to see how you're doing.
From, Captain Jack - P.S. Make sure the crew takes a bath. "you smell funny"
Thank you for your comments on the blog. We look forward to reading them. Thank you also for the prayers. Blessings to you all.

Monday, February 26, 2007

Irashaimase! "Welcome to Dale's Shoeshi House" May I take your ordah? :)

Dale's crane farm... They're multiplying! Got Love?

Peace, out...

Sunday, February 25, 2007

DAy +10

I had the day off today. Wade stayed with Dale last night and most of today. The cyclosporine level went back up to 409. They don't seem to know why the level keeps going up and down. Hopefully, it will be back down again in the morning. The platelet count dropped to 31,000. The doctors in the morning felt he did not need a platelet transfusion but by 7pm this evening, Dale had a terrible nose bleed that would not stop. The nurse had to get some gelfoam to pack his nose and then they gave him a unit of platelets. The nurse reported that Wade did a good job helping Dale . I watched Dale on the web cam. He was scared and started to cry. By the time I got there, the bleeding had stopped and he was ok. Now that he has received this unit of platelets, his blood pressure is high again, 150/96. If it's not one thing, it's another. The nurse just came in to tell me that he is 1100cc postivie so they will be giving him a diuretic which will make him "pee" all night. I think the highlight of the day was eating the chili dog Grandma June made for him. Hopefully the rest of the night will be ok. Still no signs of engraftment yet but we keep hoping it will be soon.

Saturday, February 24, 2007

Day +9

Saturday is the day of the changing of the guards. The attending hem/onc changes and we start all over getting to know another doctor. Dale woke up and ate 2 helpings of scrambled eggs, a can of ensure and a donut. So by lunch , the nurse turned down his iv nutrition bag (TPN) rate by half. I tried hard yesterday to keep his fluid balance even but the down side with being too careful while being on renal toxic drugs like cyclosporine is that the kidneys takes a hit. The Scr increased a little to 0.6. (baseline 0.3?) The doctors assured me they are watching it closely. I think it's better to be well hydrated then to worry about having a positive fluid balance. The blood pressure was better today, the cyclosporine level came down to 325. The Hgb - 9.9 and plts - 54,000. The wbc - 0.1. We're not sure if not counts as increase. Yesterdays wbc was 0.07. It could be lab variation. Hopefully it will continue to increase. Dale and I both took a nap today. We were up late again this time due to a nose bleed. The only person who stayed calm was Dale. The nurse stat called both residents but by the time they came it had pretty much stopped. Wade came to stay with Dale for the evening. I am going home for one night. Danny is on a snow hike with the scouts and Derek is at Grandma's house being very anxious about going home to web came with Dale. He keeps calling me every 15 minutes to see if I am on my way home yet.
Popo and Gung Gung - Yes, Dale eats Kellog's brand cereal. Nothing but the best! He remembered your Special K story.
Thank you for your continues prayers for Dale and our family. Please lift up a special prayer for Dale's kidneys. Grace and peace to you all.

Friday, February 23, 2007

Day +8

The doctor's told us this morning that Dale looked better and Dale agreed that he felt better. His mouth sores are slowly improving along with his bottom. He actually ate 2 bowls of cereal this morning. I usually give my kids non-fat milk but I gave Dale whole milk this morning for the added calories and he really liked it. The doctor's told us that this improvement Dale is experiencing may be a sign that the white cells are starting to grow. His palms are slightly more red which is also a sign. Hopefully it will reflect in his blood test by the middle of next week.
Yesterday, I drove down to Marukai to buy Zippy's frozen chili because for some reason Dale started to crave it. So today for lunch, he had Zippy's chili and rice. He ate until he was full. He said it has been a long time since he felt full. After lucnh, Dale and I played handball against the wall and more baseketball. He even jogged aroung the room with his iv pole. Dale spent an hour with the teacher today and continues to finish up his schoolwork. The cyclosporine level was high again so the blood pressure was a little high again this morning . It should improve as the level goes down.
Noah- Thanks for sharing your experiment with us. Now we know we can drink all the Gatorade we want and our teeth won't rot. Thank you all for your love and support.

Thursday, February 22, 2007

Day +7

Thank you Pacer team mates and friends who have commented back. Dale and I enjoy reading them. Today's challenge was still the high blood pressure. It has been running in the 120 -150s / 80s - 90. The doctors are watching his In's and Out's closely. The cyclosporine level today was 313. The target level is around 300. After yesterday's transfusion, his platelets were 95,000 this am. wbc-0.08, Hgb-9.2
Dale is eating more each day. He was happy to announce to the doctors this morning that he ate a whole bowl of cereal. He hasn't been able to eat cereal for the last 5 days or so because his mouth was sore. Again, Dale spent most of the day doing his school work. I encourage him to take a break but he says "no thanks, I'm good." There are a lot of things I need to do for Dale during the day. I give gim a mouth rinse called Gelclair 1 hr before he eats to prevent mucosal damage to the mouth , after he eats he brushes his teeth and rinses with chlorhexidine mouth wash to keep his mouth clean. This routine is repeated 4 times a day. After his bath, I have to apply cream all over his body, powder him with antifungal powder, put another cream on his buttocks and change his line dressing. This whole process takes almost an hour. Sometimes I forget to do something but Dale is always watching me and will remind me what I did wrong or what I forgot to do. He watches Wade like a hawk during his shift. When I return, I get a full report on how dad did. Dale has also figured out how to read the iv pumps and knows exactly why it is beeping and when it will beep next. While I talked to the many doctors that come in to see him, Dale is reading and studying their name tags so he knows most of their first and last names. I have a hard time with all of the different interns, residients and fellows. I do however, know all of our attending's last names but Dale knows their first and last names. It's funny what you do when your confined for a long time. Dale has not seen the outside of this room for almost 3 weeks now. Thank you for your prayers. It's what gets us through the day and we are grateful.

Wednesday, February 21, 2007

Day +6

Today's challenge was Dale's blood pressure. It was as high as 157/104. The care partner (nurse's aid?) kept trying to get a better reading but the more she tried the higher it got. The doctors felt it was due to the high cyclosporine level (413- normal 200-300) and the iv steroids. Dale also needed a platelet infusion today (plt - 25,000). If you were donor number 8123661, thank you! Dale received your platelets today. The blood pressure was really high after the platelet infusion because of the extra volume so they gave him some lasix (20mg) again. He started diuresing within the hour and the BP came down to 120/78 or so. During that time, Dale was working hard with his hospital teacher trying to finish his book report and math assignments. She has been so impressed with the thousand cranes folded for Dale he decided to show her how to fold origami today. Finally, after all the excitement with the high blood pressure was over, Dale took a well deserved nap. He never takes a nap. I think todays nap was drug induced since the nurse gave him benadryl and tylenol before his platelet infusion. He continues to eat hospital food. Last night he actually ate a hot dog sent up special by the dietician. Today was macaroni and cheese special ordered from the hospital kitchen and Grandma Miya's chicken long rice. We are happy he is able to eat a little bit more now. No ativan today but he continues to get zofran (anti-nausea) around the clock and still has the scopalamine patch on. Wade was off today so I went home to vist Derek and Danny. They are both doing fine. Derek is getting around better now. God bless you all.

Tuesday, February 20, 2007

Day +4 and Day +5

Day +4 was not all that new and exciting. Dale spent the day talking to Derek on the web cam for 2 hrs and throughout the day. He did some school and homework. He asked for the ativan but this time only received 0.25mg instead of 1mg. It was just enough to relieve the nausea without getting too "happy". He ate better and actually went to bed before 10:00 pm. Day +5 - we actually woke up before the doctor's came to visit us. The morning was a little rough. He complained of chest pain and burning. He was put on protonix 40mg daily for the acid reflux. The doctor's also decided to start a prophylactic dose of acyclovir (anti-viral) because of Derek's chicken pox exposure. The cyclosporine level was just about 400. the goal is between 300 to 350 so the dose will be lowered. Dale asked for another 0.25mg of ativan and it did the trick because he actually ate the hospital food today!!! Most of the day was spent catching up on school work and his book report. We played basketball for a while and accidentally broke the wall clock. Dale was shooting free throws and aimed a little too high. Our nurse was very nice about it. Physical therpy is here now and they are doing stretches and strength exercises. The platelets have dropped to 44,000 and Hgb is still 10.0. Maybe by tomorrow he will need more . Thank you for your conintued prayers.