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....