Monday, September 15, 2008

Kauai 2008

Plumeria memorial at Kalihiwai Beach for Dale

Aloha from Dale on Kauai

Tribute to Dale at Hoike 2008

Halau Keali'i O Nalani Hoike 2008 - Tribute to Dale

Happy Birthday Dale!

July 22, 2008

6 month's later

I didn't realize people were still visiting Dale's blog. It was nice to read the comments. Mahalo Uncle Kenny for making and for posting Dale's tribute on U-tube. 6 months have passed and if feels like an eternity. We think about Dale every moment of the day. It warms my heart to see Dale's memory so alive still. (i.e basketball tournament booklets, watching the Pacer's play and hearing them shout "Dale!" in their huddle, the beautiful tribute at the Keali'i O Nalani 2008 hoike, seeing Dale's name and number on the back of the Harvey Kitani basketball camp t-shirts,seeing friends and family still wearing Dale wrist bands and so much more....) This past August, our family along with the Morinishi and Hamada families, Auntie Millie Uncle Eric, Nicole ,Auntie Kekoa and Erin, went back to Kauai to pay tribute and re-live the wonderful memories we have of Dale there. The boys paddled out on surf boards at Kalihiwai Beach (Dale's favorite beach) far past the waves and scattered plumeria flowers into the ocean in memory of Dale. The moms and girls who didn't want to get wet threw in flowers from the rocks on the side of the beach. Many tears were shed but as Auntie Shari put it " they were cleansing tears". Dale thanked us with a beautiful rainbow from end to end toward the end of our trip with one end of the rainbow ending right at our condo. We knew it was him and it brought a smile to all of our faces. We are trying to go on as Dale would have wanted us to. Thank you for your continued support. Grace and Peace to you all.....

Wednesday, May 14, 2008

A poem "For Dale"

I wanted to share a song that was written for Dale by a dear friend . I asked if I could post it on the blog and with her blessing she writes..... I wrote this song about my little hula brother, but I really think it was Dale who wrote this.... through me....

FOR DALE (By Kiele)

Mama, don't you cry for me
Cuz' I'm standin' beside you, it's just you can't see me
But I'm holding you close, and I'll never leave
'cause I love you......

And daddy, don't you worry 'bout me
Cuz' I'm runnin' and jumpin' and I'm finally free
No more sounds and bright lights, to keep me wake at night
Now I can finally sleep....

So just close your eyes, and come with me
Back to a time that we shared happily
I would dance for you and you would smile at me
Can you do that please?
In your memories,
For me....

You know, God told me he was so proud of me
He knew it was hard to leave my family
And friends that I hold oh so close to me
Then he said softly.....

He said, Dale I've one more thing I need you to do
Would you watch over all those you held dear to you?
Be that shining light that they see every night
And I promise you then.....
You will see them again.....

So just close your eyes, and come with me
Back to a time that we shared happily
I would dance for you, now you can dance for me
Can you do that please?
Keep your memories,
Of me.....

I keep this song on my desk and where I can read it everyday. Derek shared a story about his school trip on a bus to a Casimir Cub band event at Fullerton College. He said he became sad and teary because this bus they rode in was very similar to the bus we took with the boy scout troop 719 to Yosemite. It reminded him of Dale and the good time we had. Then, one of his "cheerful and loud friends" told him " Don't be sad, I know it's hard but you have to build a bridge gradually and cross it when you're ready. Crossing the bridge will be your life and once you cross it, you will be reunited with your bro" It's amazing how children comfort each other. I am grateful for this boy's wisdom and compassion. We miss Dale dearly and we are doing our best to continue on to build our bridge..... Grace and peace to you all.......

Friday, April 18, 2008

pictures from Dale's Celebration of Life

Monday, April 14, 2008

A letter from Derek

Dale's celebration of life service was held on March 25,2008 at Faith United Methodist Church starting at 6:30 pm. There were approximately 1200 people in attendance. The church filled up by 5:30 pm so chairs and a projection screen was set up outside in the parking lot. The evening was chilly but from what I was told, nobody left. They stayed to watch the tribute planned for Dale. We were so touched by the outpouring of love and support for Dale and our family. Songs were sang , words were spoken to praise, thank and bring glory to God for Dale's life. Over 40 floral sprays decorated the church and beautiful leis brought in from Hawaii by Auntie Millie, Auntie Tish and hand made by Auntie Kekoa and Uncle Brian adorned Dale's picture and filled the room with its sweet fragrances. Dale loved to wear leis and smell their wonderful fragrance. Thanks to the help of many people, Dale's Celebration of Life Service was wonderful. Dale's life was captured and shown in an awesome slide show made by Uncle Kenny. This brought tears and joy to all who watched because it really showed how much Dale loved life and how full he lived it.
Thank you all for your hard work and help in making this evening very special for us. Burial services were held the next morning at Green Hills. Life is different without Dale. There is a void and emptiness in our house. We are trying our best to continue on as Dale would of wanted us to. Derek continues to write letters to Dale in heaven. This is something he does to ease his grieving. I would like to share some parts of his letters....

Dear Dale,
I missed you at Easter. Playing games is only half the fun and half the thrill because you are not here with me to play Wii or XBOX 360. It's not the same without you and you know it's hard for us right? I missed you especially on Tuesday and Wednesday. The service and burial were nicely programmed. There were so many people. I've had enough hugs and handshakes for at least a month. No, I'm just joking around. Although you had a short life, that's how many people you touched. Maybe about 1,400 people went to your funeral. That's amazing for a 9 year old to draw that much attention. I'm proud of you Dale! Good job! Thanks for helping Danny and Tune Squad to be champs and bringing him home safely. We miss you, love you and will never forget you. Love, Derek.

Grace and peace to you all..........

Sunday, March 23, 2008

The journey ends

As you know, Dale went home to be with the Lord on March 16th (3/16) at 6:45 am. On March 14th, Dale, Wade and I went to UCLA for a routine clinic visit. His labs showed that his bilirubin had dropped to 45 . His Hbg and Hct had dropped to 7.2 and 19.9 so he received a blood transfusion that day. It was a very long day at UCLA but as soon as we got home,Dale jumped right into his homework and math test. He worked hard until about 9:30pm. The following morning Dale woke up about 6:00 am complaining of a stomach ache. It progressively became worse and he suddenly became very weak and pale. We rushed him to Miller's Children's Hospital in Long Beach where his nurses, Terri and Monica and the rapid response team worked quickly to stablize him. His Hgb/Hct then was down to 4 and 12. The doctors told us he was bleeding possibly from an ulcer having been on high dose steroids but most likely it was due to his failing liver. Because he lost so much blood in a short time, Dale started experiencing seizures. He was rushed to the PICU where he was intubated (breathing tube placed). The team worked for hours trying to stablize his blood pressure and stop the bleeding. By late afternoon, Dale's oncologist for the last 7 and 1/2 years called to tell me that Dale is in God's hands now . He instructed us to start calling our family and friends. Dale was alert for most of the day, nodding and shaking his head to answer our questions. Many of his friends and family came to say good - bye. Auntie Millie and Uncle Eric hopped on the next flight out and arrived in LA at 5:30 am on 3/16. We were told Dale would not make it through the night but he waited for them. Dale passed shortly after they arrived with mom, dad, Danny and Derek closely at his side and surrounded by so many that loved him dearly. Dale fought courageously until the end. I promised him we would never forget him and that he would live in our hearts forever. I asked him to send a rainbow to let us know he made to heaven ok. Later that evening , there was a rainbow sighting around 6:00 to 6:30pm. The sky was particularly beautiful that day. Losing Dale is by far the most difficult challenge I have every experienced. Bringing my 3 children into the world and loving them have been the best. The last words Dale spoke to me were " I don't want to die". Dale loved life and he lived his earthly life to the fullest. Dale fulfilled his purpose on earth in 9 years. Now he will have eternal life. Dale passed on 3/16. 3:16 are the numbers of hope as written in the bible verse John 3:16.... For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life. This I feel is Dale's message to us. Thank you for your love, support and prayers during Dale battle against leukemia. Dale's blood tests showed that Derek's stem cells had completely engrafted and his leukemia was no longer detectable in the blood. It brings us comfort to know that Dale did not die of leukemia but of liver failure , a complication of the Donor Leukocyte Infusion. We miss him dearly. Life is certainly not the same without him. As a dear friend had shared with me, Dale's body is now perfect and he is finally healed. May this bring peace to us all and sustain us until we are reunited with Dale. " This bright young life was a light in the world, a candle of hope, warmth, and laughter. This bright young life has departed too soon but will shine in our hearts ever after." Grace and peace to you all....... Juliann

Wednesday, March 19, 2008

Goodbye...Till we meet again...

Final Entry… Shari

It has been said that the loss of a child is one of the most painful experiences a parent can go through. Our children are suppose to outlive their parents….It sadly doesn’t always work out that way…as we weep in tears for our children who were given to us as gifts from God…we try to remember that those children who go before us have forever left footprints on our hearts and have changed us forever. They are missed dearly by all those who loved them. But we try to find comfort in knowing that as they are in the arms of our maker, they are no longer suffering. They leave their empty shells behind as they smile upon us.

Dale went peacefully early Sunday morning, the 16th of March. He entered Long Beach Memorial Hospital for the last time on Saturday morning, the 15th. His last stay was short as the doctors, nurses and support staff worked so hard to do everything possible to try and help him. Dale was most likely bleeding from his liver. Unfortunately, Dale’s liver was failing as was seen with his increased billirubin levels and the increase in his blood ammonia levels over the past weeks. With the liver failure, the production of clotting factors fell to dangerously low levels even with the infused clotting factors, he was unable to stop bleeding. Dale’s body was now fighting an uphill battle. The inevitable became apparent as family, friends and nurses stood at Dale’s bed and said their last goodbyes.

As I look at Juliann’s favorite picture of Dale, I see happiness. The picture is when Dale was in Hawaii this past Christmas at dinner in his Billabong shirt. When you look at this picture you can feel the happiness in his face as he had such a wonderful time in Hawaii. I am so thankful for all the doctors, nurses and support staff who over the past 7 years tried with all their skills to help Dale put up his most heroic fight against leukemia. They treated Dale with such compassion and dignity.

There is an article written for oncologists in the Journal of Oncology Vol. 19, No 13 July 1, 2001: pp 3294-3296, sent to Juliann by a close friend. This article is titled “The Art of Oncology: When the tumor is not the target. “But doctor what do I have to lose…?”
After reading this article it was so comforting to know that there are young doctors so wise beyond their years, who stay focused on the goal. This doctor reminded Dale and the family of the treatment history, while reviewing the realistic goals and outcomes. I watched Dale’s doctor talk to Dale on his level. He was being honest and always addressed Dale and made sure that Dale understood what was going on. He got down to Dale’s level and looked into Dale’s eyes as he talked. Letting Dale have control, allowing Dale to spend most of his time at home instead of in the hospital was a noble goal. We all appreciated how he would talk to Dale privately, so that Dale could express his views, opinions and ask questions without anyone else around. This doctor also showed that compassion does not end when the treatment ended. I pray that this sort of doctor never loses that special gift. The Inouye’s appreciated this compassionate doctor with excellent bedside manners and who acted as the patients advocate like a parent.

Dale in his short 9 years of life has done so much, touched so many hearts and left an incredible imprint on many of us. It is amazing how a little soul could endure so much without complaining or crying. Dale succeeded in making us appreciate what is really important in life. Dale through his wise eyes knew how to fight endlessly. He is an inspiration to so many.

I pray for the Inouye family as grief work is so hard and tiring. Grief of losing a child for some takes years to overcome. I pray that the Inouye’s in the near future will once again be able to laugh freely and smile. I pray that they will soon be able to feel good about feeling good. I pray that Danny and Derek will find peace and comfort in turning to God.

As Dr. Obershaw states in his book, Cry Until You Laugh, we should all search for life and for what it means to be alive; for ways to live before we die. Dale lived well. It is seen in his family, friends, activities and his constant quest for knowledge. Dale was wise beyond his years and lived life fully..

Many times the reason why things like this happen are not apparent now, and may never be known. Our God is a loving God and with faith, I think we learn to accept His plan. Our time here on Earth is so short compared to our time in heaven. Dale is no longer in pain and in his new body.

Thank-you, Dale for your bright life. Thank-you for letting us share your journey. Thank-you, for all your lessons. Thank-you, for being you. We miss you and will love you always.

We know Dale, you are looking down on us telling us not to worry about a thing.

Auntie Shari

Wednesday, March 12, 2008


Dale is now home. He was discharged from UCLA on March 1st. His liver biopsy showed acute GVH (graft vs. host) of the liver. He bled internally after the biopsy and required 2 units of blood. It was very scarey. He stopped bleeding about 12 hours later. He was in a lot of pain for a few days after the bleed. Dale is now on 4 different types of medication to try and control his GVH. His bilirubin climbed to 55.8 (nomal is less than 1) this past Friday so he was placed on a very high predisone pulse for 5 days . (200mg/day) I have never seen anyone take this much prednisone. He is now on 120mg a day. This is still a very high dose. Because of the steroids, Dale has muscle weakness especially in the legs. He has a very hard time walking up the stairs. Running is out of the question. Getting up to go the bathroom was a chore but it seems to be getting easier these past 2 days. The prednisone also makes him very emotional. He will go from fits of anger to laughing and not really knowing why he is laughing or crying. He is very jaundiced. Despite this all, he continues to push through his school work. This has only become possible over the last few days. When he first came home, he slept most of the day because he was so tired. Our dear Auntie Millie came to visit from Hawaii for a few days and this really brightened Dale up. He did his best to sit and eat at the table with Auntie Millie. His best night was "movie night" when they both cuddled up on the couch and ate furikake popcorn. So far, the recent infusion of Derek's stem cells have kept Dale's leukemia from reappearing in the blood. However, now that Dale is on 4 immunosuppressants, he is at risk for the leukemia to return. The doctors are trying to keep a balance between the GVH and the GVL (graft vs. leukemia) The GVL is what is keeping the leukemia under control but the GVH which comes along with the GVL is damaging the liver. It never seems to be easy or simple.The doctors told us at our last appointment that they are doing everything they can to control the GVH and the rest is up to GOD. So tomorrow, Dale and I plan to go to church when it is empty and pray with our pastors for Dale and his two friends that are fighting a fierce battle against cancer. Thank you all for your prayers for Dale....

Wednesday, February 27, 2008

UCLA Update

Dale is still at UCLA. The pneumonia is better but the GVH (graft vs. host) disease to the liver is worse. The bilirubin in now 18. (direct bili 10.9) Dale is very jaundiced and his eyes are very yellow. If the bilirubin does not improve by tommorrow, a liver biopsy is planned. Dale is more comfortable. He is not in pain and his skin rash is much better. The only thing keeping Dale in the hospital is his sick liver. The hardest part of the day is when the nurse hands us our lab values for the day. Hopefully we will be greeted with good news tomorrow. Grace and peace......

Wednesday, February 20, 2008

Visiting Dale

There is always something to learn from Dale. Dale is currently hospitalized at UCLA. He developed bi-lateral staph aureus pneumonia. Besides the itchy GVH (graft vs. host) rash he has developed and increased bilirubin which is coloring the whites of his eyes yellow as well as his skin. He is an amazing fighter.

Dale is getting Fortaz, Vancomycin, Zithromax, Cyclosporine, Solu-Medrol and Amphotericin B by IV. All of these medications will help his lung infection and help decrease the symptoms of the GVH from the DLI (direct lymphocyte infusion) that he received from Derek.

Dale went for a CAT scan yesterday morning to rule out a fungal infection in his sinuses. If the CAT scan comes back negative they will stop the Amphotericin B IV.

Dale has been fever free since Monday. He needs to meet three conditions in order to be released from the hospital. The first is no fever for 48 hours. The second is his cyclosporine levels need to be between 100 - 200. The last criteria is being able to be on oral antibiotics instead of IV antibiotics. Dale can not wait to get out of the hospital.

What so impressed me on Monday is Dale's drive to accomplish the small goals he sets for himself in his mind. Even though he has such severe body aches he was so determined to get up and walk a short 5 feet back and forth 10 times. He did this through tears and crying as I could tell it was so, so painful. Juliann had to leave the room in tears and I stayed to tell Dale it was okay to stop. I told him... Dale you need to stop now and just sit in the chair.... you walked to the toilet and I think that is good enough... I have never witnessed someone with so much drive and determination in my life. It so struck me with awe. As Dale finished his goal and sat in the chair for a little bit, his body shaking from the chills, and his breathing labored from the pain he endured to accomplish his little goal of 5 laps, I stood next to Dale and rubbed his back gently. I prayed for healing and I prayed as I continued to rub his back that this little gift that God has given us will continue to teach us so many more lessons. God showed me pain and suffering. He showed me guts and determination. He showed me a little boy with so much strength and courage. I prayed that Dale would be healed within his heart. I prayed for peace to flow through his little body as well as healing to his physical body.

Dale thank-you for showing me your sense of humor as well. Remember the froth!! I will let your mommy tell those who ask!!

Dale and Juliann. Thank-you for allowing me to learn so much from you both during my visit. I pray for you all.. constantly. Dale you looked so peaceful sleeping when I left. I could tell that the pain medication was working.

Till next time... Auntie Shari

Just talked to Juliann tonight. Dale is still fever free. He will get a bronchoscopy tomorrow afternoon to further characterize the lung infection..

Wednesday, January 30, 2008

pictures during the DLI

Derek, our brave donor, is still smiling during the stem cell harvest.

Dale, the grateful recipient , waits quietly as the cells are infused.

Day 2 post donor leukocyte infusion

January 28th came and went quite uneventfully. Derek finished up his Neupogen injections on Sunday 1/27. The last day was tough for he started experiencing some bone pain in the legs and headaches which kept him flat on his back for most of the evening. We knew Derek wasn't feeling well when he turned down dinner. On Monday morning when Derek arrived at the pheresis unit at UCLA, his pulse rate was 130. The nurses asked if he was nervous. Wade accompanied Derek while Dale and I went to the inpatient hospital side waiting for Derek to finish. Derek was stuck with 2 large bore needles and sat quitely as they filtered out his white blood cells. After 3 hours, they collected 2 bags worth each containing about 4 million per kilogram body weight CD 34+ cells ( stem cells) and 170 x 10 8 total nucleated cells ( I think these are the mature white cells). Derek came by to see Dale after the procedure with both arms bandaged with ice packs taped to his arms and a big smile on his face as usual. Derek experienced some tingling in his hands from the loss of calcium during the pheresis but a cup of milk and ice cream from Dr. Moore seemed to due the trick. Actually , Derek still complains of the tingling but I give him a cup of milk and one Tums tablet instead of ice cream. The infusion of Derek's cells into Dale was again exciting to watch. Dale experienced no untoward effects from the infusion. He also received a unit of blood and platelets. His platelets were down to 21,000 and Hgb - 7.7. Dale was discharged the next morning and is now recovering at home. So far so good. He has some grade 1 skin GVH (graft vs. host). His next blood test will be on Friday. The second bag of cells will be infused in a few months. The doctors told us this mini stem cell transplant is a long shot but it has worked in a few kids. Hopefully it will work for Dale. As soon as Dale came home, he was at his desk until 11:00 pm last night catching up on his homework and schoolwork. Auntie Millie and Uncle Eric from Hawaii also came in yesterday to visit for a few days. Dale did take a few breaks to eat and play Rock Band and Guitar Hero with his brothers. We are praying for a miracle. Thank you for your continued prayers as well.......

Wednesday, January 16, 2008

Day #3 at UCLA

Dose #3 of 5 of VP16, Ifosfamide,Mesna and oral dexamethasone. So far things are going ok. Dale is tired from being woken up every few hours by the nurses or to have to use the restroom. His IV hydration, running at 140ml/hr, keeps his kidneys and bladder from becoming damaged form the chemotherapy but it also makes him "pee" a lot. He told his doctor that he didn't need a room ,just a bathroom with a tub so he would have a place to sleep in there. His Hgb was 7 this morning. This is fairly low so he is receiving a blood transfusion now as I type. There is a directed donor tag on the bag so if you were donor number 8133824, thank you so much for this life saving gift. We were happy to see this tag and it was very heart warming to know that blood and platelets are still being donated for Dale. Dale used to be a B+ but after the transplant last year he is now an O+ which is Derek's blood type. He is starting to feel nauseous. Although, he ate 2 bowls of Grandma June's clam chowder for lunch. Hopefully he will feel better in the morning. During the day, Dale tries to keep up with his school work. In the evening he has been learning the art of Hawaiian printing from a friend from hula. It involves carving out a picture in a piece of bamboo to create a stamp and then using that stamp to makes prints on fabric. Tomorrow Derek is scheduled to come to UCLA to get clearance for the stem cell harvest. This probably involves a physical and some blood tests. We are grateful Derek is willing to help DaLe again. Thank you for your conintued support and prayers.....

Friday, January 11, 2008

Blue skies, sunshine , Dale and a beautiful rainbow at Bellow's Beach on Oahu


Dale and pro surfer Bruce Irons at Kalihi Wai on Kauai. We just happen to be at the right place at the right time.

Thursday, January 10, 2008

Holiday highlights

Happy New Year. Dale is still fighting his fight and hanging in there. Christmas was great. On Christmas Eve. Dale sang solo at church during the Christmas Eve. service. He did great and we were all so proud of him. He also sang back up with Derek for Danny's church band at the same service. That was great too. On Christmas day , Dale required a platelet transfusion. His dear friend and nurse from Long Beach came in on Christmas day to transfuse Dale with platelets that were sent in by the Red Cross at Long Beach Memorial Hospital. We were so grateful. The next day the five of us took off to Hawaii for 8 days. We started out on Kauai for 5 days then spent the next 3 days on Oahu. Highlights on Kauai were eating saimin at Hamura's saimin, meeting pro surfer Bruce Irons at Kalihi Wai beach, eating Ono Char Burgers at Anahola beach,golfing at Pua'kea golf course and skate boarding down Uncle Eric's street. Highlights on Oahu were going to Uncle Doug's house (Auntie Millie's brother) and lighting fire crackers until 1am on New Years Eve, going to Bellows with the Takao's and seeing a rainbow from end to end in the water. The best part was spending time with Uncle Eric, Auntie Millie , Nicole and Tobie. Seeing our long time friends from college days and visiting Popo and Gung Gung on Oahu was special too. This was a much needed vacation for Dale and our family. On Tuesday 1/8, Dale went to UCLA for a repeat bone marrow biopsy. His marrow showed an increase of blast cells to 38%. His last biopsy showed 7% blasts after his last chemotherapy regimen. Needless to say, we are starting back up again. On Monday Dale will be at UCLA for 6 days receiving chemotherapy. We have decided to try a different approach. Dale will undergo a donor leukocyte infusion with white cells taken once again from Derek. This time the cells will be taken peripherally from his blood through pheresis (the same way plateletes are donated) and then infused into Dale. This will hopefully boost the marrow and help combat the leukemia. The down side is that Dale will have more graft vs. host effects. Derek will have to go through a series of injection for 4 days prior to the harvest. The transfusion is scheduled to take place on Jan. 28 if everything goes as planned. We hope and pray that all goes well. Hope you all had a wonderful holiday too......