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....