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!

Love,
Karlin

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!

-Karlin

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.
Don

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.
Don

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