Monday, December 28, 2009

Day +33 - GVH Battle - 12/27/09

The view from Charles' window is wonderful much of the time. Here is Mt Hood looking magnificant. Some say a champion to be conquered.

Hello everyone. This is Charles' Dad, Don, making an update.

Charles has been battling Graft vs Host Disease (GVH) for the past 2½ weeks. The Drs tell us that he has a severe case. GVH attacks the skin, liver and guts, as the Drs say. It is his full intestinal tract - it is highly inflamed. What has happened is that the new bone marrow cells have taken root and are producing - creating a new immune system for Charles. The new immune system "sees" Charles body as foreign and attacks. To take care of this the Drs give Charles anti rejection drugs and steriods. The steriods suppress the new immune system.
As a result when we visit Charles we see several notices on his room door. You will notice the red maple leaf. When I first saw this I thought it meant that Charles was Canadian. It made sense since Charles comes from two generations of Canadians - his Dad and Grandma Garrett. But, alas, to be educated - it has to do with leaves falling and means that this patient needs assistance while standing to avoid falling. "Patient is NPO" - I didn't have a clue. Turns out it is Latin - Nil Per Os and being translated means "Nothing through the mouth." Because of his raw intestines and general situation, he has become weak. He has been on nutrition thru an IV for close to two weeks. Yesterday he took a pill orally with a spoon of applesauce. His antirejection drug has also given him a slight tremor.

The other signs on the door are the things that need to be done by everyone entering and leaving his room to control the spread of disease - bacteria, virus & fungus - the big three enemies when your immune system is down. It is hard to read the sign but it has to do with masks, gowns, gloves and cleaning your hands both entering and leaving.

We had a visit with Charles' Dr, the one that makes the rounds each morning, Saturday morning. Dr Chan, wanted to visit with us about Charles' situation. He noted some improvement but also noted that Charles condition is serious. They had been giving him steriods to lower his immune system to help with GVH, as mentioned, and now the immune system was low enough that he was very susceptible to disease. So, beginning Sunday they were going to lower his dosage of steriod. It is the best of the two things to do. Hopfully this will be an improvement for Charles.

Today when we visited Charles had a little twinkle in his eye and that little laugh and sense of humor that we all enjoy in him - a good sign. Through this all Charles has been patient and enduring, never complaining. He feels the strength from his family, girlfriend, Karlin, and many dear friends.
The past few days he has spent much of this time sitting in a chair wrapped in his snuggy and Batman blanket. This evening as he retired he was wearing a cap that Karlin had knit for him. His nurses are "jewels" taking care of him and pressing him to do things to keep in shape. They are wonderfully patient, kind, caring and informing. Charles is in a very good place!

We thank our family and friends for your love, faith and prayers. We feel your love and support! Don

Monday, December 21, 2009

Day +27, setting up for Christmas

Hi folks!

Not much to update since the last post Don made, but I thought I'd share some pictures too.

Charles is doing a little better since the last post. His arm is still improving by the day, and his rash has been getting a tiny bit better each day too! He is still having troubles battling the GVH, but the doctors are doing their best to get a better handle on it. They have to find the right balance between bringing him down enough to get rid of the GVH and not bringing his counts so low that they are killing the graft (the new marrow) itself.

Right now he's still on a few meds at a time, so it makes him pretty sleepy most of the time. He's getting lots and lots of sleep and said it feels like good rest.

By now Charles has been in the hospital longer than we were thinking he'd be. We were pretty excited to think that Christmas could be spent at my mom's house, but now I think we're facing reality that it will be spent here at the hospital.

Charles and I have a tiny Christmas tree that we've been using for the past couple Christmases, and I was able to dig it up out of all of our boxes from moving! We've developed a small collection of little ornaments over the last couple years, so I brought everything over here to make Charles' digs a little more Christmasy.

He's been really sleepy tonight so I didn't wait for him to help me decorate, but I saved his favorite ornament from his parents' house (the little mouse seen in the last post) for him to put on maybe tomorrow when he's more awake. :)

We hope you are all having a great holiday season!

Karlin and Charles

Friday, December 18, 2009

Managing Graft vs Host (GVH) Disease, Day +25

This is Charles'(Aaron's) dad, Don, making this update. Charles has been dealing with Graft vs Host (GVH) disease ( ) for the past two weeks.

The three things that he has been dealing with are 1.) temperature (104), 2.) mouth and throat sores and 3.) diarrhea. GVH is something that all marrow transplant patients have to deal with. The body is quite particular about what is put into it. When those things are foreign - is gets very defensive. The main task of the Drs/nurses here at OHSU is to help the body deal with the new marrow. They deal with GVH and its side affects. The wonderful nurse, Emily, tells us that GVH predominately affects: gut, skin and liver. The cause of the mouth and throat sores was his lowered white cell count from the heavy duty chemo therapy before the transplant. Once his white cells began to return the sores began to heal. While he had the sores his meals hung from a med tree and were introduced by IV. These sores have healed. His temperature went up to 104 and they gave him Tylenol and benadryl. They did many tests to determine the cause of the temperature but found none. The most likely cause is infection of some sort. They even gave him an H1N1 vaccination. Temperature is now normal. The most challenging has been the diarrhea. They took a CT scan of his intestines last Tuesday and a colonoscopy yesterday to determine the cause. They found that his intestines are inflamed because of GVH. They are letting his intestines rest by giving him his meals IV again and they are treating with steroids.

Another affect of the GVH is a skin rash. The rash is treated with skin creams. This is not too bothersome but can itch. Check the photo out.
So, Charles as been kinda "drained" with all that is going on. He appreciates the many dear friends and family that he has. He is looking forward to the time he will be released. After a month and 2 days his hospital room is pretty small. The Drs/nurses and staff here at OHSU are wonderful!!!

The Christmas ornament at the top of this posting is Charles' favorite.

Sending our love to all!

Friday, December 11, 2009

Day +17 (can you believe it?)

Hey everyone, thanks for hanging in there during this blog drought. Though Charles really wants to blog the good and the bad, the reality of it is, you don't really feel like doing much of anything when you feel crappy. :(

First the good news- after lots of uncomfortable days and I'm sure far too many bowls of broth and cups of applesauce, Charles' throat is finally doing a lot better. He's back to taking his pills in pill form, and starting to be able to eat a tiny bit more. He's been on IV nutrition for the last week or so as well as lipids at night. It's enough to keep his body going, but who doesn't love to eat?? Not being able to eat has been a big dissapointment lately so it's good that he's starting to be able to. He's still battling some nausea issues, however, and unless he gets medication early enough, the food gets cold before he can get to it. :( Timing is a constant battle, but even getting in a few bites here and there of some meals is a good thing, so we're glad for it.

Now for the not so fun--Charles has been having a rough last few days. As you know, his counts had hit bottom about a week ago. They've been building up since then, (almost doubling every day) thanks to his white cell booster drugs. This is good, because Charles' immune system needs to come back, but it's also really hard on your body. Between the new cells, and Charles' counts rising so rapidly, his body is working REALLY really hard to deal with everything. When your counts rise so quickly your bones get achey, so Charles has had some pretty strong full body aches the last few days.

The other main player in Charles' body reacting to the new cells is the tiredness. To say he's been exhausted is a huge, huge understatement. He is wiped out. On top of the usual tiredness, Charles has had a fever for the last 3 days or so. Last night it spiked as high as 104. The fever makes him exhausted and weak.

Because of this, for the last 3 or 4 days Charles has pretty much been sleeping 24/7. Sometimes when there is enough going on or if you carry on a conversation with him, he'll be pretty alert, but most of the time he can barely stay awake long enough to answer a question or eat his food. It's good because his body needs rest, but it's hard for him to miss out on so much. He told me the days are all kind of running together at this point. I don't think he's even had the tv on in the last couple days.

Charles has had a minor rash on his chest that comes and goes and has been happening since he started getting fevers. The doctors did a small biopsy of his skin to help determine what the rash is being caused by and we're waiting to hear back on those results. He's also had some headaches, chills and shakes... all the fun stuff that goes along w/ high fevers.

The doctors have tried a few different antibiotics, but the fevers are persisting. They are thinking it could be infection, so today the infectious disease team came in to see him. They asked us several questions and are hoping to come up with an answer quickly. They are going to start him on a new antibiotic tonight and see if it helps.

Unfortunately, getting fevers and infection can very easily happen to marrow transplant patients. We learned in the caregiver class that we could expect to need to take him to the hospital about 2 times in the course of his recovery because of this. In a way I'm glad this is happening while he's still in the hospital.

Well, Charles' dinner is here and he feels like he might be up to sitting up and eating it! That's always a good thing.

We thank you all for your support, encouragement, and patience with us as this blog might get updated less frequently.


Friday, December 4, 2009

Day +10

I can't believe it's December already friends and family! And its already the 4th at that! I can't believe the Ducks are going to the Rose Bowl! I can't believe I'm almost out of here and off to Karlin's mom's house! AHHHH! Thats right, the docs say I could leave this next week. They expect my blood counts to begin to climb soon and they that once they start too it will happen pretty fast. I've got a picture of the reports they come up overnight when they test my blood. I figure we can follow these together because it will be more enjoyable. This is what they look like (the highlighted lines are the more determining counts as to when I can go):

Hematocrit refers to red blood cells. The "White cell count" that you see needs to get to between 2 and 4 and will need to sit there for 2 days before I can go. As you can see, right now it sits at 0.1 because I have nooooooo immune system. Also, I will need to be fever-free for 24 hours and be off of the morphine drip and iv nutrients.

These past few days have been very trying but Karlin's constant support and just her physical presence here have been pushing me through. She won't let me quit on this. Not to get to cheesy, but the prospect of creating so many new memories with all of you drives me everyday as well. I've got my digital photo frame thats got all of your bright, smiling faces in it so I can get my fill.

Here is the OHSU Tram from my window. Kind of like it. I think I was in a morphine trance because there were way too many photos of the tram in my camera.

anyway thats all for now. more later.

love, Charles

Wednesday, December 2, 2009

Catch up...

Hi everyone, it's Karlin...

Just wanted to do a little post to keep everyone from wondering. Charles has been having a rough couple of days. This is about the time in the recovery process that you start feeling pretty crappy, and Charles seems to be right on schedule with that. :(

As he mentioned previously he's been having pretty bad pain in his throat. This is an effect of the different chemos as well as radiation, and is called Mucositis. It's common, especially with patients who have an unrelated donor. His throat is extremely enflamed and painful. It's gotten worse since the last time he wrote. His pain is at about a 4 when he's resting and somewhere from a 7-10 when he's swallowing, so it's pretty bad. Unfortunately, along with the pain is a lot of congestion. Since it hurts to swallow, Charles is having to use a suction tube to keep the congestion out of his mouth and throat.

Last night he was awake most of the night trying to rid his throat of congestion, so he didn't get much sleep at all. He also can't really eat or drink, so he's really kind of running on empty today. Unfortunately a huge part of the routine here is taking pills, so we've had to find creative ways to get those down ranging from crushing them into shakes, to taking some of them in liquid form. Unfortunately we've learned that some of the liquid medications burn his throat pretty intensely, so we're still trying to figure out what's best to get things down. We are going to try crushing them into applesauce next time around and see if that works okay.

All of this going on makes it pretty hard to do much of anything. Even walks are a struggle right now, since he can't take the suction tube with him, but he is such a trooper, still doing 5 laps at a time and doing some of his stretches too.

Charles has also spiked a fever the last three days, which make him feel pretty tired and uncomfortable. The doctors say this is a common reaction and is to be expected. They just put him on a new antibiotic that will help fight the fevers.

So, basically none of these effects are much to worry about, and are just part of this whole process, but that doesn't mean they don't suck. Charles is doing his best at trying to do the things he should be doing, and that alone is amazing. I certainly don't think I would be as calm and collected as he is through all of this if it was me!

Thanks everyone for reading and supporting!

Love you all,