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

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!

Love,
Karlin and Charles

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 ( http://en.wikipedia.org/wiki/Graft_vs_host_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!

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.

Love,
Karlin

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

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.

http://en.wikipedia.org/wiki/Mucositis

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,
Karlin

Day +6

well first I have to give a big hug and thanks to the Carroll's (Ashley and Tony) for getting me and Karlin all of Mad Men season two on dvd. You have no idea how perfect this is for us! We've been trying to catch up on season two for quite some time now. I promise that once I'm better we will hang out, it's almost comical how many times there have been events that I couldn't make it to because of all the appointments, etc.

Well they have me on a Morphine drip now which allows me to dose myself. This is to help with my throat soreness which has gotten really bad. I wasn't sure if I would be able to eat breakfast or even take my pills this morning. I hope they don't have to feed me through an iv, which they said is a possibility.

It's times like these in which I like to draw in my "comfort book". This is an example of how I felt on November 22nd.

Dos Photos!

Day +5

Well today has been pretty uneventful. My mouth continues to be sore in the throat and everywhere else really. This makes it hard to take pills and eat, obviously. Breakfast went down in a relatively successful manner though. They've given me some "magic mouthwash" which basically coats and numbs the throat and mouth. I also have to continually rinse with a saline solution. They don't like to mess around either though. This morning because the pain was too bad they gave me some morphine. Some combination of these items will be used to thwart off the mouth and throat doldrums. (I hope I used that word correctly, I like it)

Day +4

My dad went and got me some shirts. Big thanks to Harold for hooking us up on this one. Seriously, what a great guy you are Harold! Can't wait for the victory tee now!





well kind of a long waiting game now. My blood counts are coming down nicely, as they should. I just can't wait for them to return with help from the new marrow. That will be the day! The doctors think that will start to happen later this next week, maybe Thursday or Friday. Day +9 or 10.

The doctors say for now I couldn't be doing better. No infections, fevers, or any serious worries to address. My mouth has been getting pretty dry and sore which is a pretty common side effect from the chemo. The reservoir in my head looks great they say, same with the neostar in my chest.

The main thing bothering me is just being jailed in this room/unit. I gets unbearable. Yesterday Karlin was able show me some awesome Duckstore photos that really brought me back home. Thank you Hideki so much for taking the time to help with those. They made my day and I put them on my digital frame so they can always be on when I need them. Make sure Harold stays away from large packs of butter though. My only request.

Anyhow, love you all
GO DUCKS!

p.s. my brother's just bought me the new Wolfmother cd "cosmic egg". If anything, this is beneficial to my rock 'n roll soul! Thanks dudes! I've also been reading, but mostly staring at the book "Understanding Comics" by Scott McCloud. Couldn't recommend it higher if you have an interest in the medium.

More Pics from thanksgiving day

My mom's kindergarten class sent me a bunch of get well Aaron cards. Gotta love it.


My most-creative girlfriend. Who would've thought to bring back the "hand turkey"!! What a gal.


Oh! There she is, and me showing off the brand-new cozy-green beanie. Soooo niiiccee.


the fog.

Happy Turkey Day to you all!

I scored this morning with my meal. I wasn't feeling too great when I first got up, but as soon as my morning meal came the sun began to brighten. It was yet another beautiful, foggy morning in Portland by the way. Anyhow, when I received my meal I realized that I could create something outstanding by combining some of the ingredients that I had ordered. The nurse and I started with the english muffins and spreaded the butter over them. Next, we cut the omelet in two and placed each piece on its assigned muffin. The nurse then broke up the bacon and spread it over the omelet. annnnnddddd..... wwwwwwwaaaallllllllaaa!! A OPEN - FACED BACON EGG MCMUFFIN! made my morning because this day is a celebration of food and feast! well... among other thing. Anyway, I hope you can understand the kind of triumph that that was. :^)

love


This is Nurse Mat with the crafty breakfast hands. What a great nurse he has been. We've discovered we have a bit in common. Music, football, Harvey Pekar, etc.

The week in pictures...

Karlin here, thought I'd do a little photo recap of the last several days!

We started getting settled in quick... we've done this before. : ) Doing a little knitting in our "home."


The bathroom... which is actually really large and gives Charles his own shower, which is sooo nice in situations like this. And yes, that is his pee, sorry!


Setting up camp with books, movies, and the moose that The Duck Store sent him last time he was here!


This is what Charles' crazy Busulfan pills look like. Busulfan is an oral chemo. He was taking cups of these guys 3 times a day for several days. That's a loooot of little pills.



Us! This was day -7 I think.


We love the huge window (my bed is right under it) and our awesome view of Portland.



Melts my heart...


All that physical therapy makes a man pretty buff.


Just part of the awesome awesome team (left to right): Manami, who has been doing Charles' spinal and Ommaya reservoire taps, doctor Meyer, an assisting doctor, and Dr. Hayes-Lattin, Charles' main transplant doctor. He is also a young adult cancer survivor and has been amazing to us. He does a lot of work toward bettering the treatment experience for young adults with cancer. Charles really couldn't be in better hands.

Day +1 and Day 0 recap!

Day +1 has started off fairly well. Yesterday was day 0! Karlin was able to stay the night with me through the transplant and that made things so much easier. I was able to gather some kind of rest last night thanks to some help from sleeping pills. Otherwise I was up 'til about 1:00 on my own. The transfusion started at about 11:45 pm. The doctor had to come in for about 15-20 minutes to make sure everything was going as planned. If there are no bad reactions within the first half hour, none are expected. Once the doctor left we knew everything was okay as far as my system accepting the new marrow cells.



Karlin was a real trooper, she stayed up a good three quarters of the whole process before finally succumbing to the uncomfortable bedding as available. Everything felt just like a normal blood transfusion. I'd heard that some people could smell weird things, like the cells could smell like garlic or creamed corn, but I didn't get any of that stuff. It was just like a normal transfusion for me.

An interesting fact for all of you guys: when you get a bone marrow transplant, your blood type will eventually change to be the same type as your donor's. So my type will be switching from O positive to A negative because my donor is A negative. In this regard it's unlike other organ transplants, where the blood type has to match between the donor and reciever.



As for the beginning of day +1, me and Karlin were greeted with a stunning view of the city complete with fog, city lights and a beautiful sunrise. It felt like new beginnings! I was able to put down a hearty breakfast with no nausea problems which is always a bonus. Me and Karlin have already put in a walk and a lot of physical therapy and stretching this morning. Now we're just taking a relaxing break for some blogging and maybe watching a movie. I'll be recieving some further low-dose chemo and anti-rejection medicine throughout the day, but it's all scheduled, nothing out of the ordinary.




We'll update with any breaking news, but most likely it's going to be a smooth day.

Love, Charles and Karlin

Day 0 has arrived!

My apologies for the lack of posts. These past few days have tough as far as anxiety goes. I've had to take a medication called Ativan to help me with this. http://www.drugs.com/ativan.html It has helped a bit. We'll see if the anxiety dwindles today with the prospect of the new marrow cells. They will actually be collecting them today and shipping them as well. They will get here late tonight and the transfusion of them will be done around 10,11,12? p.m.? something like that. Pretty wild stuff coming from an international donor.

The past few days have also been time of rest when possible. Although I have seen a lot of physical therapists for my left-arm and just general strength and leg exercises.

love all of you and hope you are doing well. I'm sure Harold has pulled all of his hair out by this point with the ducks doing so well right now. I wish I could be there for this!

love
Charles

Pictures

my dad getting artsy?!








No big deal.


After my Picc was taken out. Thought it would hurt more.

Day -3

Ok I might just throw up some photos and a little text today. Feeling a bit tired beaten up by the chemo. Today was a good day even though Karlin and I still can't seem to make it to the end of Star Trek. I had a scheduled radiation this morning at about 9 that went very well. I also started a new iv chemo today called Cytoxan. I've had it before just not in such a high-dose. I will be getting another dose of Cytoxan tomorrow and that will be the last.

My family showed up to watch the Oregon Football game with me which was rad. What a game! Been thinking about everyone in Eugene. The Rose Bowl Cometh!!

Here are some random pics to finish the day:


This is what my new 'neostar catheter' looks like. It. is. awesome.


What a view?! Well done dad!


This nurse's name is Hugh. He's been my night nurse for the majority of evenings so far. He's a lovely and informative person and resembles Andre Agassi quite a bit. There has been no crystal-meth abuse in the past for Hugh though.