This is an entry by Don, Charles' father.
Dear Family and Friends:
Thank you wonderful family and friends for your love and support. Charles, and we, appreciate the many comments of love and support. We are greatly blessed!
Yesterday Charles had a minor surgery to inject collagen into his left vocal chord. Back in August he had the same procedure when he had almost lost his voice. The injection fattens the vocal chord so that speaking and swallowing work better. The affects of this should be seen within a day or so. The procedure went well and Charles did good.
The Summit
The OSHU Oncology Social Worker, Keren, called yesterday and said that Dr Chen, the rounds Dr, wanted to meet with family today. We set the time for 3:15pm. At 3:25 we all gathered: Dr Chen; the palliative care team (Amy, Anna & Dr Anne); the oncology social worker, Keren; current nurse, Tim; an OSHU chaplain, Debi; girlfriend, Karlin and family: Dad, Mom and brother Jonathan.
Dr Chen explained that with the current relapse, the 3rd, there was not a lot that they could do. They would continue to give chemo therapy and see how the symptoms he is having respond. He is currently having trouble speaking, swallowing and his right eye has a "blister." His energy has fallen and he is generally weaker. He has added pain to the head and neck. Dr Chen added that at some point the leukemia would enter the blood. The next topic was Charles pain management, comfort and quality of life. These are the main considerations now. Then, there was discussion of where he would best receive care. Dr Chen said the options where: 1.) continue at OHSU, 2.) hospice care facility or 3.) home hospice care. The options were discussed. Then, the Dr told us we could take the weekend to discuss care and let OHSU know what the family decided. We have set Sunday, 12:00 @ OHSU, with family and Karlin, to discuss and decide.
Currently Dr Chen recommended that Charles pain medication be changed from Dilaudid to Fentanyl. This change was made about 2:00pm. Here it is 6:30pm and they are changing back to Dilaudid. Turns out that the Fentanyl doesn't jive with Charles. It doesn't quell the pain real well and it causes him to be disoriented and have delusions. Just a short time ago he thought he was a character in the movies. Charles wanted the change and we agreed.
The Drs, nurses and staff here at OHSU are WONDERFUL!
So, we press forward, knowing that family, friendship and love are Eternal. Thank you all! dg
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Hi Charles and family (and of course sister cat Karlin),
ReplyDeleteWe are thinking about you and praying for you as difficult decisions are made and the fight continues. We love you so, so much!!
Love,
Wade and Elizabeth
Charles
ReplyDeleteMight I say that I think about you regularly, even when we aren't doing therapy together. We have been working together for your entire hospitalization, more than 4 months. I have gotten to know you while you are going through this challenge. I may not know you as your friends and family, but I know the Charles that has been in a long and hard fight. And for every mountain you have had to climb, I have been there with you. And I want to tell you this again. It has been an honor to work with you. You have dealt with the worst of the worst and your courage, dedication to your recovery, hard work has been amazing. You have a spot in my heart always. I hope to see you Tuesday, but if for some reason you are not there (you go home), it has been a real pleasure getting to know you. You will always be the "one" I will never forget.
See you Tuesday!
Jenn, your occupational therapist
Charles and family, our thoughts are with you. We wish you strength in making your decision. Chuck, you are a good friend with a good heart, and we are grateful and happy to know you.
ReplyDeleteLove,
Sam and Lisa
Our love and prayers are with you as you make this very, very difficult decision. We know you are inspired and the Lord will bless you and his Guardian Angels will surround you to lift you up and help you to know what is best for Aaron. Your courage is astounding and we are so in awe of all of you. Best Blessings and Love..Uncle Lee and Aunt Pam :) xoxoxoxoxoxoxo
ReplyDeleteLove and blessings to you all in this very difficult time.
ReplyDeleteI must admit that I'm still in shock. But, I wanted to send some more support.
I can't muster up much else at the moment.
All my best,
~Jonathan
My thoughts are with you all as difficult decisions are made. You will know what's best.
ReplyDeleteCharles is a wonderful friend. When I lived in Eugene, he and Karlin made that place feel like home. Love you all.
-Amy
your love, hope. strength and support of each other is so inspiring, it will help so much as you start another chapter in life.....Karlin is our dear niece and we are so thankful for the love you have shown her through this journey....you are all in our thoughts always..
ReplyDeleteAunt Tricia & Uncle Jim
From Glenn & Joan Sage (parents of Christopher 'CJ' Sage),
ReplyDeleteTo Charles & family,
We are praying that, unless it is God's desire to take Charles home with Him, that the same God & Jesus that healed the sick will work in you now. We are asking that He will stay close beside you all the way.
In either case, we look forward to meeting you.
And remember that there is always, somewhere, someone praying for you.
Glenn and Joan.
Chuck: I love you, man, and treasure our friendship.
ReplyDeleteI am in awe of the love and support of Karlin and your family.
Charles, what an amazing support group in your family and lil' Karlin. While all of your family is holding your hands up there and helping you through difficult decisions, we are all down here holding each others hands and thinking of you while we try really hard to send you all the strength we can muster. We luv ya, Lord Vader.
ReplyDeleteHarold
Charles, all my thoughts, prayers and strength I can gather is sent to you daily. I wish you comfort, healing and strength.
ReplyDeleteLee Ann
Charles,
ReplyDeleteYou are in my thoughts and prayers. Years ago you taught me the ropes on the register at the Duck Store and I looked up to you from that day forward. My friend just had a bone marrow transplant at OHSU on Tuesday and she walked past your room recognizing you through my sharing of this blog and talking about you. As she goes through this, she has a motto, and I share it with you: You are healthy, You are beautiful, You are strong.
I send my support to you,
Kali Landis
Dear Charles,
ReplyDeleteThough I do not know you personally, I have prayed for you from afar. I have come to know you through dear friends Elizabeth Johnson and Lori Hammond. I spoke with Lori today and told her I would pray for you. I pray for strength and endurance to face each and every day with courage and grace and with the smile I know you must have. Though times may feel dark, know that you have made a significant impact on everyone's life you have touched....
Most sincerely,
Terry Beaudry
Aaron,
ReplyDeleteI am not sure what the future holds, but you have been one of the most genuine and loving friends I have ever known. I continue to pray for you, and I have faith that that each step our lives take is part of something much too great for us to ever fully comprehend. You are a wonderful person, and there is not much more I can say than that.
Your friend,
Chris
Charles,
ReplyDeleteYour strength and courage in facing life's problems is really admirable. Hopefully I can be that classy when faced with such adversity. It comforts me greatly that you have such wonderfully loving and caring family and friends near your side.
I have never known you to be anything other than cheery, thoughtful and engaged at work and that's a rare thing in a retail environment, let alone our wacky bookstore. You have made a positive impression upon many people and that's the best thing a person can do in this mortal coil. I love 'ya and wish you the best. ♥
Comradely Yours,
Hideki Tomeoka
Might I say that I think about you regularly, even when we aren't doing therapy together. We have been working together for your entire hospitalization, more than 4 months. I have gotten to know you while you are going through this challenge. I may not know you as your friends and family, but I know the Charles that has been in a long and hard fight.bone marrow transplant Germany
ReplyDelete