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.

Sunday, February 18, 2007

Day +3

This morning Dale was visited by 5 very special girls. They stood in the quad area holding signs that spelled out "We love Dale" in view of his window. Then they flipped the signs over and it read " Go Bruins ". It was a nice surprise that brought a smile to his face after getting a bit of bad news earlier that morning.
We were told Derek would not be able to visit Dale for approximately 2 1/2 weeks because a student in Derek's class came down with chicken pox. Derek has been immunized but the doctor's don't want to take a chance risking Dale or the other children on this ward. I think I cried the most out of us three. Fortunately, with the grace of God and the kindness of a dear friend who gave us a lap top, Danny,Derek and Dale are able to talk and see each other with a web cam. Derek and Dale talk to each other for hours. Sometimes they just sit there doing their own thing. From time to time, Eski, our dog is brought in for Dale to see. Grandma and Grandpa visit Dale through the web cam too. Dale's platelets are holding at 96,000 and Hgb - 9.6. The doctor's were impressed with the rise in platelets after only 1 unit that they are going to look into who that donor was. The wbc is 0.12. Dale developed a small sore on his tongue which is very common after radiation and chemo. His caloric intake has decreased so he was started on a TPN (total parenteral nutrition) today. (For you health professionals, D10/2%AA no lipids with lytes and mvi at 40 cc/hr) He told the nurse tonight he wanted to try ativan again because that drug took the pain and the nausea away. This is the same medicine that made Dale act drunk on the night of the transplant. We were hoping he wouldn't remember but "whatever works" seems to be the motto here. The goal is to get him eating enough on his own so they won't have give him his nutrition iv. The doctor's also mentioned today that Dale is turning into a teenager because he goes to bed late(around 11:30 pm) and doesn't wake up until 10 or 10:30 am . My goal is to get him back to his old schedule because we don't need another teenager in the family. We are thankful for having made it through another day. Blessing upon you all.

Day +2

Well, I didn't make the 12:00 midnight cut off again so the date will be off again. I forgot to mention a very important part of the transplant yesterday. Rev. Derek and Danny were also able to witness the transplant. Rev. Derek picked up Danny from school and they made it there just before the marrow arrived. Rev. Derek said a prayer as the marrow dripped in and after the last drop was infused in. It was a very special moment for us all. Last night was a night out with dad for Dale. I went home to see how Derek was doing. Derek was asleep when I got home last night but this morning he was very sore. He hobbles around like a penguin (that is not how he got his nickname, happy feet)but he gets around. Baseball practice and band practice was not possible today, maybe next week. Derek is treated like a hero every where we go. It makes him feel very special. Derek fell today trying to get dressed and hit the side of his face on the wall ending up with a little bruise on the cheek but he is fine. Dale broke out in tears this morning after looking in the mirror and not seeing any hair on his head. Most of it fell off last night. I was suprised by his reaction because he was so calm about it earlier that day. Dale's platelet count dropped to 24,000 this morning. He also had a nose bleed last night so he ended up with a platelet transfusion today. The donor number was 8123521. The bag was due to expire on 2/19. Thank you for your donation. Dale's repeat platelet count tonight was 103,000!! Praise God!! That's quite a boost. He also started complaining of mouth pain and had some rectal bleeding, all part of the mucositis that occurs from the radiation and chemo. Basically the outer layer of the inside of the mouth all the way to your bottom could potentially shed off and is suppose to be very painful. Eating becomes a painful chore. The nurse gave Dale 1mg of morphine for the mouth pain and again Dale was feeling very good and ate the dinner Uncle Mike prepared for him at home. The rest of the evening was spent watching the slam dunk contest , watching movies and building legos. A very special thank you to Dale's blood and platelet donors. There is a shortage of platelets and it was so wonderful to have had a bag ready to go for him today. We are thankful for your continued support and prayers.

Saturday, February 17, 2007

About 1 hour later; it's all done 2 happy campers

(I'm sorry that the pictures load backwards in time, so you can scroll down, start from the bottom of the pictures and scroll up for the correct order)

The happy donor aka "Happy Feet"

Dale with nurse Lisa

More preparation

The Bone Marrow Transplants begins

The Stem Cell Lab delivering the Derek's bone marrow and preparation for the transplant

Friday, February 16, 2007

Day 0 and Day +1

I apologize for not posting yesterday but by the time I got both boys settled in ,it was about 1:30 am and I was exhausted. It was quite a day. Derek arrived yesterday around 9:30,went into surgery around 1:30 and was done by 3:00 pm. The procedure takes awhile because they harvest 5 ml at a time until a total of 500ml is withdrawn. So for Derek what that boils down to is 50 sticks into the each hip bone for a total of 100 sticks. They only take 5 mls at a time because the first 5 ml taken is rich with cells. Anything more would just be blood. They need a certain number of cells so in order to obtain it, they need about 500 ml of marrow. The marrow is then filtered and processed. The bag of marrow was ready to be infused intravenously into Dale by 4:30 pm. There was a room full of nurses and doctors present to deal with any complications that may arise during the infusion. Derek joined us in the room soon after. Kristen and Dr. Moore came to see us after the procedure and shared with us a cute story about Derek. They said Derek smiled all the way into the o.r. and until he fell asleep. When he woke up, the first words he said was "thank you" and continued to thank everyone in the o.r. room. Dr. Moore said he made the nurses cry. They said he was the nicest patient they had all day. The marrow is infused quickly before the stem cells die. Because of the rapid rate of infusion, Dale became hypertensive and nauseous. They gave him 20mg of Lasix and 1 mg of Ativan. The ativan ( similar to valium) made Dale very happy and feeling good. Derek was very sore and a little pale. It was a busy evening and night taking care of both of them but I enjoyed having both of them. Derek was discharged this morning which made Dale sad and start to cry. Dale is losing his hair now. Should be bald in the next few days. He doesn't seem too bothered by the hair loss as much this time. Today day +1 he will receive methotrexate 17mg iv x 1 for prevention of the GVH (graft vs. host disease). Dale is feeling better today. He asked for the hospital teacher to work with him for 30 minutes this morning. Thank you for your extra prayers and thoughts yesterday. May God continue to bless you all...

Thursday, February 15, 2007

Day -1

The nausea was much better today. He actually got out of bed this morning around 9:30 am and had a cup of water that didn't come flying back up. He then had a bowl of cereal for breakfast and lunch and pediasure for his mid afternnon snack. Dinner was a simple bowl of ramen noodles. It doesn't sound like much but it was a lot considering he hasn't had anything to eat for the last 2 days. Today was supposed to be a day of rest but acutally he received IVIG and cyclosporine. IVIG offers passive immunity. His wbc is now 0.05. zero here is considered 0.00. In my book, 0.05 is zero. The Hb is 9.0 and the platelets - 70,000 Dale will probably need a platelet transfusion in the next couple of days. Platelets are transfused once the level drops below 20,000. Dale spent most of the day doing his school work and book report on Benjamin Franklin. Derek is nervous and Dale is excited. Derek's bone marrow harvest is scheduled for 12 noon on Thursday 2/15. The actual transplant into Dale will occur around 4-5 pm. Please continue to keep them both in your prayers. Danny will join us later with Rev. Derek around 4pm. Thank you for the cards and well wishes. We are very grateful for all of the loving support given to us.

Tuesday, February 13, 2007

Day -3 & Day -2

Day-3 was a little rough. It was the first day of two on cyclophosphamide/mesna (chemo). Dale was initially overwhelmed with all the new bags, iv pumps and lines. He looked like he was going to cry but held it in. Shari came by in the morning and took some pictures. (She posted some on the blog yesterday). Wade and Derek also came and Derek tried to keep Dale busy to keep his mind off the nausea. But by mid day, he spent the rest of the day trying not to throw up or throwing up. Nothing stayed down . By late evening he was crying because he felt so bad. He could not move his head in fear of feeling sick. But by 11pm after more zofran and phenergan he was feeling better and took a bath. For some reason, last night he had to get up every hour to use the restroom. Needless to say, this morning (Day-2) Dale was exhausted and slept unti almost noon. The nausea was better today. He did not eat anything but managed to drink water and some juice. It is about 6 pm now and Dale has already taken a bath and gone to bed. Today was the last day of conditioning. Cyclosporine iv started today and will continue for a while. We are proud of Dale for having bravely completed the 10 day conditioning regimen. Thank you for your prayers.

Monday, February 12, 2007

Life In The Hospital 2/12/2007

No wonder why time passes so slowly. They don't change the date!!!

How many power bracelets does a hero need?!?

Guess how many cranes are in this jar?

All you need is a genius, some strings, and a horses tail...

B.U.D.S. "But Understand Dis SeƱor," "I will NOT wait on you after you give me your bone marrow"

Toto we're not in KANSAS anymore!!!!!

Sunday, February 11, 2007

Day - 4

Maybe it was the rain, but we both slept in until 9:30 am. Day #2 of chemotherapy with ARA-C got off to a rocky start. Finally got around to eating breakfast around 10:30am. Unfortunately, Dale became nauseated again around 11:30am and lost the breakfast he just ate. I think it was the 3 tabs of bactrim he had to swallow that made him nauseous. The nurses decided to step up the anti-nausea meds. Now he gets Zofran every 8 hours around the clock instead of every 12 hrs plus phenergan i.v. for breakthrough nausea. It seemed to help. He was able to keep lunch and dinner down. Dale spent the day building lego and watching the Lakers lose again. Auntie Sharon, Uncle Kenny, Auntie Cathie and Auntie Judi came to visit while I went home. It was a nice break for Dale. Cathie and Judi gave us the guest book from the blood drive today at Faith UMC. We were both shocked and very greatful for the overwhelming outpouring of support for Dale again. I read through each and every name on the guest book. A big heartfelt thank you for your help, your time and your gift of life. From what I understand, there were more donors than bags so some people were not able to donate blood. There were approximately 90 something people who signed the guest book. It makes a difference knowing that the blood that is being transfused came from someone you know. Dale felt so much better after his blood transfusion yesterday. He was smiling and laughing again even if he was a bit nauseous. Yesterday's transfusion( from a designated donor) took his Hg up to 9.4 and Hct - 28.4 today. His wbc,however,is now down to 0.8 and the ANC(absolute neutrophil count)is 700. The nurse this morning told me "everything is coming down nicely". The goal is to get to "0". Thank you for your tremendous effort and support today. We thank God for family and friends like you. God bless you all.

Saturday, February 10, 2007

Day-6 and Day-5

I was just informed by Wade that my days of posting are off by a day so this is my attempt to catch up. Day -6 went fairly well. Dale completed the total body radiation today. His radiation therapist called it graduation day and presented Dale with a beautiful diploma in radiation therapy from the University of California, Los Angeles(UCLA). It looks very official. He was very pleased with his accomplishment and immediately put it in his "happy book" when we got back to the room. His ANC was 1000 so visitors were still allowed and Tam, Lester and Marv came to visit. He seemed a lot brighter during their visit, smiling and talking like his usual self and even laughing. Laughing is a rare these days. We were also told his hemoblobin is now 7.9 and Hct - 24.9 and will probably need a transfusion soon. Wade came up in the afternoon and I went home for the night to spend some time with the other two but they were off doing their own thing so I went to Friday night hula class. According to Wade, his afternoon with Dale was spent playing Nerf baskeball and catch for "a few hours". Thank you to all who folded the thousand cranes for Dale. The vase filled with the cranes sits on his bedside table and is just absolutely beautiful. It adds color to his room.
Day - 5 - 1st of 4 days of chemotherapy. Dale woke up tired and sad today. His hemoglobin is down to 5.9 and Hct - less than 20. ( I forgot what Wade told me) After the morning chemo(ARA -C) , Dale will receive blood. Today is first day Dale cried and actually expressed to me sadness about his illness since the initial news about his relapse. He shed some tears when nurse Terri talked with him at Miller's Long Beach Memorial on the first day of induction chemotherapy back in December but that has been it until today. I think the low hemoglobin scared him and he feels "yucky". He said being in the hospital makes him sad. Hopefully, after the transfusion , he will feel better. I have tried really hard not to cry in front of Dale but I could not hold the tears back today. Derek and Danny ( maybe not Danny since he was complaining of a sore throat last night) will visit later today bringing Grandma June's famous chicken long rice. Thank you for the food and groceries and gifts. We really appreciate all of the support and kindness . Thank you Percy Penguin for the flowers. Most of all, thank you for your continued prayers and please know that Dale prays for all of you too.

Friday, February 9, 2007

Day - 7

Today 2/8, we woke up on time. The radiation went well but like clockwork Dale started to feel sick around noon and felt better around 2pm. Breakfast seems to be his best meal. Lunch consists of a few bites. After the 1pm radiation session, he manages to have a snack. Today's snack was a peanut butter and jelly sandwich which he threw up just before dinner. Having thrown up, he felt better and ate dinner. Dale eats so much for breakfast the nurses are not too concerned if he doesn't eat the rest of the day. Sally came to visit with Dale so I went for a walk in the botanical garden next to the hospital populated by about a million squirrels. I also walked to one of the nicest Ralph's supermarket I have every seen. Later in the day we were treated with a 30 minute "patio privelege" so we took a walk outside. Dale was able to feel the fresh air and the sun. He felt so good he walked up 3 flights of stairs to his room instead of taking the elevator. A letter came from Percival Penguin today with pictures too. Dale is tickled pink with his new pen pal. Thank you to whoever set that up for him. We share the letters with the nurses and other staff here. Wade, Danny and Derek came to visit this evening. It was nice to see the three together again. They watched Gray's Anatomy and went home. We thank God for having made it through another day. Blessings to you all.

Thursday, February 8, 2007

Day -(minus) 8

Day -8 started with both of us waking up late for our radiation appointment. We are supposed to be up and ready to go by 7:00 but we didn't wake up until the patient transporter came to pick up Dale. The morning radiation session went well. The nausea was better this time. He threw up breakfast but was able to keep lunch and dinner down. He spent the morning excercising with mom (shooting nerf basketball, throwing the football, running in place and stretching) and doing school work with Paula, the hospital teacher. We were also visited by the hospital chaplain as we were signing Pirates of the Caribbean valentine cards for his class. We quickly hid the skulls and pirate cards out of the chaplains view. We also met Dr. Lasky today. He was very nice. Actually, everyone we have met so far has been great. After the afternoon radiation session, Dale spent the next 2 hrs on his feet building a lego robot. The nurses kept checking in to see if he needed to rest but he didn't stop until it was completed. In the meantime, I fell asleep and took a nap. When I woke up, Dale was still standing there. He didn't want to sit because the physical therapist mentioned he should stand as much as possible to keep up his muscle strength. Our dentist, Dr. Kari Sakurai visited us today and gave us a new mouth rinse to help with the mouth sores. It is new to UCLA and we're hoping it works on Dale so they will consider using it on other kids.
I didn't realize Dale was a LOST fan but he watched 2 hrs of LOST before he took a bath and went to bed. He mentioned he missed the sun and asked how many more days he had to stay here. It was a hard question to answer. Hope all is well outside of UCLA.

Wednesday, February 7, 2007

Day -9 1st day of conditioning

Day -9 started early down in radiology at 7:00 am . The total body radiation takes about 30 minutes. 15 minutes on each side. He is premedicated with benadryl and hydrocortisone iv 1 hr before so he is fairly sleepy during the procedure. The nausea hit about an hour after the morning session. Luckily it started after breakfast so he was able to enjoy that. The afternoon session of radiation started at 1pm. The nausea had subsided and so the afternoon was spent doing homework, working out with the physical therapist and throwing the football around the room with mom. The UCLA teacher dropped by with an assessment test followed by a 30 minute private session with the child psychiatrist. The psychiatrist shared with me a question he asked Dale. The question was "If you had three wishes, what would they be?" Dale replied, " peace, everyone gets to be treated equal and nobody would get hurt anymore." The psychiatrist then asked if he had any wishes for himself and Dale replied "no". He later told me it was apparent that the church and his faith are a big influence in Dale's life. If Dale's wishes come true, the world will be a better place. The days are long but somehow with God's grace we get through the day. Dale started to practice his violin and actually drew a small crowd of nurses who came to listen. He played "Shine Jesus Shine" for them. A big thank you to Dale's blood and platelet donors. His hemoglobin is already down to 9 and Hct at 28. They will transfuse when Hgb drops to 7 and the Hct 20. His platelets yesterday were holding steady at 210,000. I think they tranfuse when it gets down to 30,000 or less. The staff at UCLA is wonderful. We are still getting acquainted with their system. We miss Millers but I'm sure in time we will get used to the routine here. Thank you Auntie Wendy for sitting with Dale while I went to hula. Thank you all for your love and support. Thank you for the cards,letters and emails . Your words of encouragment warm our hearts and rejuvanate our spirit.
Grace and peace to you all

Monday, February 5, 2007

Day -10 (minus 10) "The Countdown begins"

We had an early start (5am at UCLA for admission)and 7:30am surgery for central line placement, but all went well. Dale is now a little sore, but resting well. We spent the morning reading "happy pages" from friends and church class mates. It was fun to watch him laugh and giggle. Auntie Shari came and helped us hang up pictures and cards to decorate his room. The room is comfortable with an extra bed for Mom with a small refrigerator and a even a bathtub for Dale. Tomorrow is Day -9 with total body radiation at 0700 and 1300. We were able to enjoy a few minutes of sunshine outside for lunch and took a little stroll around the front of the hospital.
We miss all of you already.
Thank you for your prayers.
Dale, Jules and Wade.