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,