Monday, April 12, 2010

Obituary for Charles

This obituary will be posted in the Salem Statesman Journal and the Eugene Register Guard newspapers. Don

Charles Aaron Garrett
October 5, 1980 - April 7, 2010

Salem - Charles, 29, of Eugene, passed away, in Portland, after a valiant year's battle with leukemia.
Charles grew up in Salem and attended Englewood Elementary, Parrish Middle School and graduated from North Salem High School in 1999.
He attended Chemeketa Community College, Oregon State and the University of Oregon. He graduated from the U of O with a degree in Sociology. He made the Dean's list.
Following graduation he continued to work for the Duck Store in Eugene. He worked in Information Technology, as a receiving clerk at the warehouse and various other duties.
Charles had a passion for sports. He was involved in softball, football and tennis during his years in school. He was also on the Duck Store softball team "The Bookies." They were undefeated. He enjoyed golfing with family and friends. He followed major league sports, had favorite teams and kept track of stats.
Charles was a pleasant, caring person with an infectious sense of humor and had many wonderful friends. He enjoyed a good time, loved pranks and being with his friends. He was sensitive to others, helpful and a good friend. He will be greatly missed.
He is survived by his parents, Don and DeeDee, brothers Matthew, Jonathan and Daniel; his sweetheart Karlin Johnson; grandmother Ima Gates, Uncle Kent & Aunt Rose Ann Garrett of Turner, Aunt Heidi (Ron) Miner of Salem, Aunt Brenda (Ned) Darling of Anchorage AK, Aunt Pam (Lee) Jesperson of Provo UT and many wonderful cousins.
Funeral services will be April 17th at 1:00pm at the LDS Church: 570 Madison St NE (5th & Madison Sts.), Salem. Viewing will be 11:30-12:50 preceding the funeral service. Viewing at the Dallas Tribute Center will be Friday, April 16th from 12:00-8:00pm. [287 SW Washington St., Dallas OR]
The families wish to thank his doctors, nurses, CNAs and therapists, in Salem and at OHSU, Kohler Pavilion, 14th Floor, who lovingly cared for him.
In lieu of flowers, donations may be sent to: The Leukemia & Lymphoma Society, 9320 SW Barbur Blvd, Suite 140, Portland, OR 97219

Thursday, April 8, 2010

Know in your hearts, he has peace.

Karlin here. I don't think I could ever be ready to write this entry, I'm really not ready to say anything yet, but it was important to me that people know how things were, and to have peace about his passing.

Charles has been surrounded by loved ones all week. Tuesday night it was just me, Charles' parents Don and Dee Dee, and his brother Jon. We sat with him for a long time. He knew we were there with him. He always did. Even when he became mostly unable to respond, he knew we were there. One of the only verbal responses I got from him that day, through his unmoving mouth was, "I love you too." We kept hands on him all day and talked to him and tried to make sure he was comfortable. After Charles' family left that night I set up my cot right next to his bed, spoke to Charles and held his hands, as always. I told him for the millionth time that day, we all loved him so much.

I turned out the light early since our previous two nights had been rather restless. Charles had a lot of deep congestion that night and his breathing was becoming quicker and he wasn't able to clear his throat like he had been in nights before. Still, he slept and looked peaceful. I would wake up periodically to check on him, or when the nurses came to check on him and he was always peaceful. No struggles like previous nights. I would touch his face and chest and hands, kiss him and tell him how much I loved him, I would ask him if he was okay. He would go back to sleep and I was able to sleep much better than nights before.

That morning I woke up early, around 6 or 6:30. I was tired but felt like it was time to get up. I sat with Charles most of the morning, just holding his hands and telling him again, I loved him. Though it seemed he was too tired to respond, he was looking into my eyes and listening. I opened Charles' curtains so he could look out into the trees. I saw him watching something out the window behind me and turned around to see a squirrel bounding through the branches. I think it came to his window just for him.

Mid-morning I told Charles that I wanted him to know that all we wanted for him was peace. I had felt like the last couple of days, Charles was hanging on for us, more than anything. I told him that we just wanted him to have peace and comfort, and that I knew how hard he had tried.

Charles got his sheets changed and new pajamas put on, and I ordered some breakfast. We put his bed in a more upright position and his congestion sounded much better, and he was breathing easier. I told him that morning that two of his dear friends planned to visit that day. I told him not to be worried about doing anything, that all they wanted was to see his face and tell him they loved him. I sat next to him eating breakfast, telling him again and again that I love him. I told him I just spoken to his friend Heather, who was going to come visit in a couple of hours.

I was almost done with breakfast when I looked up and saw Charles lift his head. His eyes were wide but didn't look frightened. He took a few deep breaths. Though it was a very different situation, being with my dad when he passed had prepared me for what was happening. I began to cry and shake, but I held Charles' face, and told him one more time, "I love you, ok?" He was looking at me and heard me. His labored breathing had stopped. His eyes had stopped searching. I called the nurses and held Charles to me and there were a couple more small rises in his chest, then he was gone. He was finally at peace.

Charles had expressed to me in his last night up at OHSU that he couldn't do it anymore. That's how I knew that he was hanging on for us. That's the type of person he is... and you all know that already. He asked me if I understood, and I told him that none of us can ever understand. I said that none of us will ever be ready to let him go, but when goes is up to him, and up to God. So, it's true. None of us could have been ready... I personally am still not ready. I'm not sure if it's real. But the relief and peace in my heart was almost immediate as he passed. He was as comfortable as we could make him. I don't believe that he was scared or worried anymore. He knew how deeply we all loved him, he did not struggle and he was not alone when he passed.

Charles has peace now. His mom and I agreed, now his spirit can soar. It makes my heart swell to think that he is happy and healthy again, probably running around throwing a football, and I'm pretty sure my dad is teaching him to fish.

I think he's probably doing some of these things too:

So, as so many have said in their wonderful comments, aren't we all just so lucky to have known him? His time here was far, far too short. I know I certainly expected to have him around forever, but the last 4 years of my life have been fantastic because of him and I would rather have them than not have them. We are all just so blessed to have met such a wonderful man. And I am so blessed to know many of you because of Charles. I have gained life-long best friends through Charles, as well as a second wonderful, amazing family that I would not have otherwise come to know. I could reflect for days on end, so I'll stop now, because that's not what this entry is about. This entry is about all of you having peace in your hearts for Charles. He's looking down at us now... and probably giggling.

Rest in peace, my love.

Wednesday, April 7, 2010

Service Scheduled

Dear Family and Friends:
We have scheduled the funeral service for Charles Aaron for:

April 17th, Saturday
LDS Church
570 Madison St NE (5th and Madison)
Salem 97301

We hope this will give all time to make arrangements to share this time with us. Again, we appreciate your love and support.

Our Champion, The Winner

We received a call this morning from Hopewell House Hospice. Our valiant champion, son and friend passed away this morning at 8:50am. We thank you all for your love, support and prayers. This is a sad day. Yet, we know that Charles has entered a realm with family, peace, beauty and love. A place we can scarcely imagine. We are thankful to Heavenly Father for all his blessings; for our Saviour Jesus Christ and His gospel which give meaning to this life.

We will post Charles' service arrangements.

Monday, April 5, 2010

Charles - Now At Hospice

$$$ Previous Entry Completed $$$

This is a entry by Don, Charles' father.

Thank you for the many comments to Charles' last blog entry. They will ALL be read to him soon. ( Hey, Sarah A. -long time. )

Things move fast. We received a call this morning that a room was avaialble at Hopewell Hospice. The Hospice wanted to receive Charles today. Arrangements were made to get him transported at 3:30pm. We gathered moving boxes and headed up. Since Charles has been at OHSU for 3 and a half months and has sooooo many thoughtful friends, he has accumlated quite a bit. Well, the boxes overflowed and we had to use shopping bags.
The move went well overall. The ambulance was late and it took a while to get off the floor with the hugs and goodbyes with staff. We will MISS the OHSU, Kohler Pavilion, 14th Floor staff!!!
Once at the hospice Charles was quickly settled into Room 3. Being in a wooded area, Charles windows look out at tree scenery. While he was settling in there was a strong wind storm that blew through. We have been having winter weather to begin our spring.
Karlin will be staying at the hospice with Charles tonight. She will be on a cott in Charles' room.
Charles is restful and bright, yet his body weakens. We are happy that he can be in a place where his comfort and peace will be the first priority.
Again, we appreciate the love, support and prayers of our family and friends. They are many and we feel them with a calm that all will be well. dc

Sunday, April 4, 2010

The Decision

$$$ FINAL UPDATE - 4-5-10 11:30pm $$$

This is an entry by Don, Charles' father.

Dear Family and Friends:

First, we appreciate all the comments that have been posted to Charles' blog. Every one of them are read to him and he enjoys them.

This has been quite an emotional day for all of us.
We met today, Charles' family and Karlin, and visited about Charles' continuing care. The OHSU Oncology Social Worker had given us information about a hospice not far away. After our discussion we decided to go and visit that hospice: Hopewell House Hospice. We were all impressed and felt it would be a wonderful place for Charles. They can handle all his needs. It is in a wooded area and they encourage patients to go outside, wheeled in their bed, to be in the sun. It handles 11 patients. Charles is second on the list after another OHSU patient. We all felt good and agreed, and notified OHSU upon returning. The move is in the works.
After we returned Dr Spurgeon came by to visit. He wanted to talk about what Charles will need and won't need for care at the hospice. First, Charles had a question for him. Charles wanted to know how long he had. After a moment, the Drs answer was "weeks." Charles accepted the Drs response like the trooper he is. There were few dry eyes. Then, the Dr explained that many of the meds that Charles is getting won't be necessary at hospice. He will still receive pain medication, the same he has been using, that works well. They will discontinue TPN (liquid IV nutrition). The Dr explained that it is not doing much for him now. I might add at this juncture that a few days ago Dr Chen asked what Charles wishes were for life support if/when the situation came in his care. He advised that he didn't want it. In hospice he will be in a very pleasant surrounding and have all his needs met for comfort and peace.
Charles is in little pain even though his body continues to weaken. He has that wonderful little chuckle that I'm sure you have all heard a "million" times. His mind is sharp. His jaw and tongue don't work so well which makes it difficult to understand him when he talks. He has lost the use of his left arm and most of the use of his right arm. With all this his spirit is bright and NO COMPLAINTS!!! He has wanted Sprite and Root Beer. Because his gut is pretty well healed he can have some. Problem is he can't swallow well. So, he receives a few drops from a spoon. He enjoys that. Today Karlin's mom sent some chocolate. Charles wanted to know what it was. After explaining he said he wanted some. We asked the Dr and he said a small amount. So, his mom smashed the chocolate and melted a small piece on the end of a gloved finger and rubbed it on his tongue. He liked that.
Another difficult part of the day was that the word got out on the floor that Charles would be leaving soon for hospice care. Well, the nurses, CNAs and others just love him. Today, after shift, 1 nurse and 1 cna, that have cared for Charles many times during his 3 and a half month visit, came by. They didn't want to miss saying "Goodbye." Again, not a dry in the room. The nurses, CNAs and others are so WONDERFUL!!
Charles' brother, Matthew, brought him a comic book. It is a new one and will probably not have a sequel. Here is Daniel reading and showing The Governator to Charles. It's about a mythical governor of a mythical state. Hummm. Right up Charles alley for a good look, a good read and a good laugh. He liked it.

We go from day to day. Thank you for your love, support and prayers. dg

Friday, April 2, 2010

Charles Summit

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

Wednesday, March 31, 2010

Day +129 - Not A Good Report

This is an update by Charles' father, Don.
Dear Family and Friends:
It was 1 year and 4 days since Aaron was diagnosed with lymphoma. He has been in OHSU since Nov 16th and it has been 129 days since his bone marrow transplant. He has had 9 rounds of chemo therapy, 14 radiation treatments and 3 months+ of severe Graft VS Host Disease. And, never a complaint.
Yesterday we met with Aaron's rounds Dr. at OSHU. They had taken a spinal fluid sample last Saturday. The Dr. said that the sample showed leukemia cells. The Dr. said that things didn't look good. They are going to give him chemo in the spinal fluid but because of his over all condition are not real hopeful. In the past week he has had problems and has generally gone "down hill." His voice is weak and he has had numbness in his tongue. He has had to use a catheter because of difficulty relieving himself. He has weakness and is more restful. He seemed to be doing okay and holding his own till about a week, week and a half ago. Then, it was noticeable that he was declining.
After the Dr's report there was a lot of OHSU support for the situation and Charles' and the family's needs. They are so wonderful, helpful and supportive here.
Charles and our family have been so blessed with the love and prayers of our family and many friends.
Our love, Don

Monday, March 22, 2010

Day +120 Improving & Holding

Dear Family and Friends: This is a blog entry by Charles' father, Don.
It is hard to believe that this is Charles' 16th week at OHSU. Originally it was thought that he'd be here from 3-5 weeks then be released to stay within 15 minutes travel-time for 100 days. We don't know yet how being here so long will affect his 100 days after discharge. One thing that we learned early in Charles' treatment was that the Drs. had no real answers for our "When" questions. As humans we want the boxes to be SQUARE and the circles to be ROUND. But in this situation there are no final answers. The process is: Diagnose and Treat. Over many cases there is a general course that emerges BUT each person takes their own course. So, Diagnose and Treat. Charles has had a severe case of Graft vs Host Disease (GVHD) while others have come, been treated, and gone on. As you can see Charles has a bit of a mustache and beard now. Since he as not had chemo therapy for sometime his hair is returning.
Currently, the gut is still in the process of healing. It has improved but not to the point that Charles can take solid food. He is no longer "Nothing through the mouth" (NPO); he can take some liquids. He fav is Gatorade and water. He still has gut pain and ocassionally his gut cramps. For the pain he takes meds which help.
He had a incident about a week and a half ago with an ulcer on his left eye. As they looked at it they found that the eye was drying out and cracking, like skin. They have treated that and it is "coming along." At night his eye is taped shut to keep it moist.
I saw the physical therapist today and she said that Charles is coming along. He is gaining strength in his legs and is able to stand longer - 10 minutes. He is also gaining strength and more movement in his left arm. Lauren is a wonderful therapist and really gives Charles a workout. Charles is still weak and the physical therapy is to help strengthen his muscle as well as exercise his ligaments and tendons - to keep them limber.
Part of Charles therapy has been foot massage. Here Marilyn give his feet a workout. I asked Charles "Why the foot massage?" He has only had it a few times. He said he really didn't know but it felt GOOD.
Charles has been out from under the "cloud of drugs" now for some time and has been more cognative. He is able to read, watch movies (thanks H?????), work on crossword puzzles and read. He spends much of his day in his chair. Charles reminds me that even though his is out from under the "cloud of drugs" that he is still take a lot of them.
Charles has splints that he wears a portion of each day. He has a left wrist splint and a right leg split. The splints are to keep the wrist and leg in correct position/alignment while they are not being used much.
To be released he has to meet the following: 1.) all meds by mouth, 2.) able to take food via mouth & 3.) able to be up and about on his own. If he gets to 1 & 2 but not 3 it is possible that he might be moved to a facility for the physical therapy.
The Drs. check daily on Charles status. The nurses and CNAs are wonderful. And, Karlin is a jewel. I was sorry to hear that she is sick now. We hope she will get well quickly. Charles appreciates the love and care of his family and friends. We too, feel very blessed with all the wonderful care Charles has received. And specially, the love and support that he receives. Thank you!

Thursday, March 11, 2010

Day +109, Our hero!

Hey everyone! Just wanted to do a quick update. To be honest, mostly so you could see these pictures. Don went through an old box of photos the other day and came across these. He thought they were pretty fitting. Charles is our hero, after all.

Look at this guy!

These photos are from when he was 3 or 4 years old. Hopefully we can recreate these pictures sometime soon once Charles is standing on his own and I can sew him a larger Robin costume.

Charles has been doing really well lately. His gut is really healing up! He hasn't had much stomach cramping these days and has been drinking Gatorade the last couple days without problems. Today he was also told he is no longer NPO! Don and Charles' brother Jon visited tonight and took him on a wheel chair ride, and he even got a latte! Charles has been talking about coffee for WEEKS and with his powers of pursuasion was able to convince his nurse to let him get a decaf soy latte. He was pretty pleased about that. :)

One small setback has been that Charles was having some troubles with his left eye being irritated again. The eye doctors have seen him a few times now and it turns out he has what they were originally calling an ulcer, but now are calling a "filament" on his eye. Part of his eye had gotten really dry and caused a little spot on the surface of his eye to kind of break open. It's very very tiny and just looks like a little tiny white spot to me.

The doctor did his best to make it lay as flat as possible and they gave Charles an oversized contact to put in that will help protect it. They said this problem is common with people who don't close their eyes all the way when they blink, but I told them I've witnessed Charles sleeping with his eyes a little bit open several times since he's been here! So now we know the problem is that he's been sleeping with his eyes cracked open and that little spot of his eye has been getting dried out. Tonight they're going to try putting ointment in his eye and actually taping his eye shut! Kind of weird, but hopefully it will help him heal up.

Charles is going to continue to take it easy as far as drinking, and I think he'll be getting a menu tomorrow now that he's no longer NPO, but he still needs to take it really easy on his stomach. He's also been working on getting his strength back up again, and is really being a trooper.

He's resting well right now and I think he'll be getting into bed soon.

Love you all,

Sunday, February 28, 2010

Day +98 Improving, S L O W L Y.

Dear family and Friends this is a blog entry by Charles' father, Don.

Thanks to those who have left comments and thanks Dorothy and John for the card. And thanks, Harold for the visit. Charles gets meds all the time but there is none better than a FRIEND!! And, we are grateful that Karlin is feeling well, back to work and visiting.

There are many views of Mt Hood. This is another from this afternoon. With Winter's Spring here the views have been wonderful. Since OHSU is on the top of a tall hill there are good views of the city too.

Charles' blog has been "opened" so that anyone may add a comment.

I was in Friday when the Dr, Dr. Chan, made patient rounds and visited Charles. They have been concerned that is gut was not healing so they had given him a gut exam, colonoscopy, on Thursday. He has continued to have a raw gut and is still on a "nothing through the mouth" diet. They did the exam with the intent of cauterizing, to stop bleeding. The result was that they were surprised that his gut was healing except for a 7cm area that was raw. As a result, they were not able to cauterize. Dr. Chan said that they are going to take things slow in order to avoid a setback.

They have changed meds on him over the past week. They have given him a different anti-rejection drug and a different pain drug. They were concerned that morphine might be slowing his gut healing so they have been giving him Fentanyl. That is set up so it can be self-administered. They have been tryng to adjust the dosage on it so that Charles is not so drowsy. See the end of this blog entry for the side affects of Fentanyl. So, for the past several days Charles has been drowsy and when waking a bit disorientated. I can't find the detail sheet that the nurse gave me on the new anti-rejection drug. The side affects of that drug are NOT something that you want to read, often. Look for that in a later blog entry. At any rate they are working on his meds and taking his treatment s l o w. They look at his case EVERY day and adjust accordingly. The doctors and nurses are WONDERFUL!!!

Another thing that came up this last week was that Charles insurance ran out. He has very good insurance through his work and we have not had to be very concerned. Then, this last week the Social Coordinator, from OHSU, called and said that Charles' insurance for the transplant and related had maxed out. He has not reached his lifetime max, just agreed upon transplant max. So, I visited with the Coordinator, who is most wonderful and valuable, and she suggested that we apply for another insurance. I was able to cancel Charles current insurance and apply for the new. The agent I was working with received the last piece on info about 6:10pm on Friday, the 26th, last work day of the month. We needed to cancel by the 28th and start the new on the 1st of March. I think we did it. The new insurance is good and the premium is a few bucks less. How about that. Now I just have to verify that Charles was accepted tomorrow. And, I must add that the office people at his work in Eugene are WONDERFUL!! Thanks Natalie!!!!

Today Charles and I watched the Olympics - well Charles watched about ½ of the game. It was probably the hottest contest of the whole Olympics - Canada vs USA - Hockey. Wow, what a game! And, even though we are USA we thought it was neat that Canada won. They have been making such a thing of it the whole Olympics. USA can certainly hold their head high.

Thanks to all of you. We feel your interest, faith and thank you for your prayers. We know they are heard. dg

SIDE EFFECTS: (Fentanyl)
This medication may cause drowsiness, dizziness, pain at the site of injection, headache, nausea, vomiting, constipation, trouble sleeping or sweating. If these effects persist or worsen, notify your doctor promptly. Report promptly: mental/mood changes, tremors. Unlikely but report promptly: poor coordination, vision problems, difficulty urinating, unusually slow breathing, hallucinations, slow or irregular heartbeat, rash. Very unlikely but report promptly: seizures, fainting. In the unlikely event you have a serious allergic reaction to this drug, seek medical attention immediately. Symptoms of a serious allergic reaction include: rash, itching, swelling, severe dizziness, trouble breathing. Laxatives with senna may be helpful for narcotic-related constipation. Consult your doctor and pharmacist before use. If you notice other effects not listed above, contact your doctor or pharmacist.

Thursday, February 18, 2010

Day +86

Everyone remember this guy?

I think this guy is comin' back. :)

Charles' strength is improving a lot this week. I was unable to visit him for about a week, because I was sick, and the difference between last week and this week is so great! Most of what he's working on with physical therapy is the transition from sitting to standing. It's really hard work but he's pushing through it. Most of the work is being done by him at this point. Lauren (the PT lady) helps him by pulling a little on the belt while he stands, then mostly just helps him balance after that. He's kind of having to re-learn how to balance his weight during the transition and while standing. He did a lot of work with that yesterday so today his muscles were a bit tired but he still stood up a few times today plus doing lots of sitting exercises!

The biggest problem lately has been that Charles' stomach is very raw again, so each time he takes pills he gets bad cramping. He's got a new pain med that is actually a patch on his skin! Since the pills don't absorb well in his belly and morphine was making him feel more bad than good, they're giving this a try. So far it's going alright but he's having to take some additional pain meds when he gets bad cramping.

We've had a pretty nice lazy day here at the hospital. I've been crocheting and playing music and Charles has been reading, and now he's napping. It's a beautiful day in Portland and this new room is really a lot brighter and Charles has a much better view of Mt. Hood, so we're able to enjoy the nice day in our own way.

Hope everyone is well!

Love, us.

Sunday, February 14, 2010

Day +81 Saturday - Family

Yesterday, Saturday, Charles' (Aaron's) entire family made a visit. Generally we have stagered visits, coordinating with Karlin, so there is more coverage and not so many in the room. But, yesterday his whole family ganged up on him.
We always have to "dress-up" to be in the room. I forgot to have us lower our masks when the photo was taken. So, from left to right: Don (Dad), Matthew, Daniel, DeeDee (Mom) & Jonathan with wonderful Charles in the middle. It was nice to have us all together and share some time. The brothers are good friends and medicine for Charles.

Charles continues to have gut rawness. The few previous days were more so. DeeDee and Daniel visited today and he seemed to be doing better. He has come a long way in many areas but his gut has been slower to heal. The Drs meet and counsel each day, look at test results, etc and make a plan. So, we are hopeful for Charles' treatment and are hopeful that his body will heal.

Thanks for your love, support and prayers!! Don.

Thursday, February 11, 2010

Day +79 - Slowing Improving

Dear Family, friends and others: This is an entry by Charles' father, Don. First of all Charles was moved to another room last evening. It was NOT done for any medical reason but because Charles had been in the same room for soooo long that the room needed a good cleaning which also gives Charles a change and somewhat different view. He is now in room 6. This room seems to be brighter and his bed faces in a way that he can see out the window better. His veiw is east and the photo is NE with the Markham Bridge, I-5, over the Willamette River. Just to the right of the bridge, across the river is OMSI. Can you see the red smoke stack? Kinda small.

Charles' girlfriend, Karlin, has not been feeling well the past few days so has not been able to visit. So, he has had to put-up with family. Ho-hummmmmm.

He wants to thank those who have made comments to his blog entries. They get read and he enjoys them. Jonathan, he enjoyed the musical video.

Charles is slowing improving. Yesterday his physical therapist, Lauren, said that they are beginning to talk about him being released. She emphasized that it is NOT a rush thing but just looking to that end. In order for Charles to be released he has to 1.) take all meds by mouth, 2.) be able to physically be up and about and 3.) be able to eat solid foods. They have been working on all these things but his healing has been slow, specially his gut. He still has pain with is stomach/intestines - they need more healing. They had gotten him almost totally on pill meds and Lauren and Randi, his physical therapy team come each work day and exercise and and wear him out. He is still quite weak. Yesterday he practiced standing from a chair, walking with a walker and various exercises to strengthen muscles that are used in every day movement.

Today they are backing up a bit because of his gut. This morning he had a lower gut exam and just after noon they x-rayed his gut. Today he received a unit of platelets and a unit of blood, and he will receive another unit of blood later tonight. Still losing blood in the gut. Before the unit of blood they gave him Benadryl. So, now his is napping. They have also stopped giving him meds via mouth; back to IV. They think that the oral meds are NOT being absorbed completely. And, he is now back on a No Food by Mouth diet, just sips of water. It's now IV "mac & cheese." He is not looking forward, today, to his physical therapy team coming in - he is pretty tired. Generally, he enjoys their visits and knows their work is necessary. Finally, he is going to have a shower this evening. So, a full day.

And, hey Uncle Ron, the Udderly Cow mug is in the window. Mr. Moose is looking over it. And, Ron, I think that it is a reminder to Aaron [Charles], that he needs to get you something, reeeeally NICE.

With the "knock-out" meds being gone, Charles is alert most of the day. He also spends a lot of time in his chair. Overall he is improving; but his gut and strength are slow. I know he appreciates your friendship and love! He is a pretty social soul. Now that he is more alert it is challenging to deal with boredom. Thank you for your support. Oh, we did see the Super Bowl and we did "pull" for the Saints.

Thank you!!! dg

Monday, January 25, 2010

Day +62, working out!

Hey guys! Today Charles is continuing to make me proud! I had to swoon a little after watching him impress me with his workout routine. Today the physical therapy team brought in the "standing machine" for the second time. It's really cool, it supports Charles in front of his legs, under his arms and behind his back so that he can stand without anyone helping him.

Last time he used it he was able to stand up once for four minutes then again for another five minutes. Today he blew his old records out of the water by standing for 15 minutes straight! He only started to get tired right toward the end and said it felt really good to stand up straight and stretch out his body.

After standing for 15 minutes (and talking about Rachel Ray with the PT ladies), Charles even continued to do a round of sitting exercises with his legs. He's doing so great today.

In the last couple days he's also made advances in the eating department. He's had about half a bowl of broth each time they've brought some in, as well as tea. I've been trying to get this guy to drink tea for about 3 years now and suddenly he'll drink it here in the hospital. They must have the good stuff. :)

Now Charles is just getting a good rest after all the exercise. Thanks for checking in, everyone!


Saturday, January 23, 2010

Day +60... time to chow down!

...or maybe just sip down.

Hi everyone, it's Karlin. I have some exciting news... yesterday Charles was told he is now allowed to EAT FOOD! He's mostly restricted to things like broth and jello right now. Yesterday after we found out, a tray with broth, jello and some tea arrived. It seemed pretty scary at first. Charles wasn't sure what to expect (stomach pain, nausea, cramping...), but he took a few bites of the jello and drank about half a cup of tea without any problems! He also really seems to be gaining back his appetite. Yesterday I made the mistake of talking about nachos in front of him, and just now a pizza commercial made him groan. hopefully in a couple days we can upgrade the broth and jello to soft foods!

Some other great news is that Charles' strength has been improving a LOT every day. Less than a week ago he couldn't roll over in his bed without lots of help, but in the last couple of days he's been able to stand up several times (with help, of course), and yesterday was able to hold the standing position for a few minutes!

It's been hard for Charles to see improvements. They can be so slight, and there are still so many things that aren't better that it's hard for him sometimes to even notice the difference. I think being able to have food has been a good, tangible sign that he really is improving. His parents and I have all been reminding him of how great he's doing and I think yesterday maybe he started to see that himself. Watching him do physical therapy or take on tasks he hasn't been able to complete for several weeks has made us all so incredibly proud of him. I keep reminding him that he could just decide it's not worth the pain and struggle and do nothing, but he isn't! He's pushing through doing things that are very difficult and painful, and because of that, he's getting better. I'm really trying to help him understand that it's his own strength that is getting him through this. He's an inspiration, whether he knows it or not.

Thanks to everyone reading. Just your interest in Charles' progress means so much. I know he misses you all a lot. Thanks for supporting him (and the rest of us on Team Charles). Love you all!


Sunday, January 17, 2010

Day +54 - The Battle Begins to Turn

After so long, Charles will be ending his 8th week at OHSU this Tuesday, his new immune system is beginning to settle in. The Drs that come and visit each morning say, "Little steps." As we visit we can see those small improvements.
Charles still has a way to go and has endured much, so we are so thankful for these small things. Charles still spends much of his time resting, light. When staff or visitors come he arouses and acknowledges.
He takes his pills with applesause, popcicles and small amounts of pop. This past week he requested Fanta Orange pop and banana popcicles. So, we stocked the OHSU frig with pop and popcicles. Still he has to be careful of his mouth intake because his stomach upsets easily. He enjoys ice chips!
They continue to monitor his progress and adjust meds accordingly. They have dropped the level of his steriods to 20mgs a twice a day as of yesterday. That is good! He still receives "food" (TPN) through an IV as well as a bunch of meds. His med "tree" is fairly loaded.
Improvements: His skin is clearing up and no longer hurts; his guts have settled down some. He hasn't had disorientation for many days now and he is not as groggy/sleepy.
"Many of the Turner staff participated in a 10K walk/run as part of the Cascade Half Marathon. We dedicated it to Aaron! I'm very sore but I'd do it again for my precious Aaron! By the way this is my contribution to his blog.(Mom DeeDee) My runner's number and his picture, that I wore on my backpack, are on his bulletin board now! He continues to progress a little each day and we are very encouraged."

DeeDee's sister, Heidi, and her husband Ron, are in the middle of the front row. DeeDee is in the upper middle.
To see a video of a local newspaper click on the following link:
See Video, click here The video is titled: "Runners invade Turner for Cascade Half Marathon." Dan Peterson is DeeDee's Principal.

The Drs say that for Charles to be released he needs to meet the following criteria:
1.) must take all meds by mouth,
2.) must be able to eat by mouth,
3.) be able to stand/walk care for self.
They are working on each of these but to 'eat by mouth' the body must heal. The Drs are doing what they can to assist the body.

Time truly is the healer. The nurses/CNAs are wonderful. Again, we appreciate the faith and prayers of family and friends. Truly, Charles and we are very blessed. And, Karlin is so wonderful and caring. Charles perks at her voice.

Sunday, January 10, 2010

Day +47 The Battle & Simple Things

Sometimes we take the simple things for granted. Well, Charles had two of the simple things this morning: 1.) a popcicle and 2.) he got out of his room for the 1st time since the 24th of Nov. He went for a wheelchair "walk" around his floor and down the elevator to another floor to see the OHSU tram closer. The flavor of popcicle he requested was grape. He would have taken Bubble Gum if it had been available. Thanks Harold for the vicarious treat with your dad for Charles - bubble gum ice cream!

Charles has had a pretty good week with some challenges. His blisters and skin sores seem to have settled down and give him less pain. Part of that is that the nurses cover the raw sores with petroleum gauze which really helps. His intestines seem to be slowly healing. He is still not able to take solid by mouth; he is still NPO.
But, he is taking small amounts of applesauce with pills and small amounts of non acidic fluids. His main "meal" are still via IV and are called TPN (Total Parenteral Nutrition).

He has been having some disorientation yet. They think that it is a combination of being in the hospital for quite a while and the meds he is taking. It might also be that because the meds make him drowsy he gets disoriented in time. He wants to leave, occasionally, too. We have to let him know that he has more healing to do first. They continue to review his progress and meds. They have lowered his steriod dosage to half of what is was when he first got GVH.
He enjoyed his escape from the floor and room. It is a beautiful clear day and Mt. Hood is radiant display. As we moved around we passed a small snack bar the was closed. I mentioned to Charles that his is where we sometimes get a drink. He wanted to look and see what kind of drinks there were. (Another simple thing.)

Another thing that is nice here at OHSU is that the halls are filled with art. Here is Charles in front of a painting titled "Self Potrait." The variety of art is quite amazing too. It looks like it gets changed every six months or so too. Nice touch, OHSU!
The Drs meet and plan frequently for the patients. The nurses and cnas are wonderful. Charles is in his 7th week and will begin his 8th week on Tuesday. To be released he has to reach a certain degree of health and self-care. In the next blog entry I'll list the release criterion.

Karlin, Charles' girlfriend, is wonderful!

We thank our family and friends for your faith, love and prayers.

Sunday, January 3, 2010

Day +40 The Battle Continues - Sunday

[<--- Charles Aaron - 2005]
Charles finishes six weeks at OHSU with more to go. He is still battling GVH while making a bit of headway. This past week has seen him with a loss of strength, falling twice with occasional disorientation. He was not hurt during either fall but during his second fall he damaged his port-a-cath where he received all his IV insertions. As a result of this they removed the port-a-cath and installed two 2 port PICCs. One each in his upper arms. He had one in his upper left before. This time he has two because of the number of meds and not being able to mix some. He first had a PICC until coming in to OHSU for his transplant. Since the port-a-cath was primary for the transplant infusion the PICCs will be fine now for his needs.

He is still taking his "meals" IV however they are beginning this last week to give him pill meds and he takes that with a spoonful of applesauce.

From last week his guts seem to be a bit better. He now has a few areas with blisters and skin abrasions. The abrasions are raw and case pain.

They are not sure about his disorientation. There are many factors that could affect that. The biggest factor, probably, are the meds, mostly steroids.

They began reducing his steroids a week ago because long-term use of the strength he was receiving can cause lasting damage. Now they have to watch the GVH close because the steroids purpose was to subdue the new immune system.

Today when we came in we noticed that they had replaced Charles' mattress with an air mattress. This gives more even pressure over the whole body thus reducing pressure points and the possibility of bed sores.

His mom and I saw his original OHSU oncology Dr a few days ago. He had been out of the country for the holidays. He said that he had kept up on Charles' progress. He mentioned that the good side of more difficult GVH cases is that the likelihood of a relapse is lower. So, for the difficulties, there are bright spots. He said that in time the immune system and body will reconcile their differences. Each case is unique.

Today, Charles received two 300ml packs of blood and a "pint" of plateletes. His blood was getting weak so this is to fortify it.

His vital signs, taken every 4 hours, are good. (Vitals: Temperature, blood pressure & blood oxygen)

The nurses and CNAs (Certified Nurse Assistants) are wonderful. And all the staff are wonderful. Of course the best care is given by his girlfriend, Karlin. She is more than wonderful.

We thank you all for the thoughts, faith and prayers. They make a difference!

Don, aka Dad