Update

Chris passed his swallow evaluation and is eating normal food. He has been moved out of the ICU and they expect him to make a full recovery from the stroke. That is all the new news.

Christy

The Latest

I wanted to clarify/correct some of the information in Ryan's last post. All of this is based on the report from Meghan, not actually talking to the doctors. Chris had a small stroke and that is why he was moved to the ICU. A stroke is an injury to the brain caused by the disruption of blood flow. They can be either thrombotic (caused by a clot that disrupts the flow of blood to an area and starves it of oxygen) or hemorrhagic (caused by bleeding from tiny vessels which injures brain tissue). The bleeding is not actually in his neck but in his brain, probably at the base in the brainstem (or possibly the cerebellum) which is why everyone was talking about his neck. It has caused a problem with his speech (just in the mechanics of him talking, not his ability to understand or create speech) and possibly some problems with his ability to swallow. This most likely was due to problems with clotting related to his low platelet count. The heparin may have contributed although they took him off as soon as his platelet count dropped so it may have worn off by the time the stroke actually happened. This is just one of those things that can happen when you don't clot normally.

He did well overnight with no evidence that the bleeding worsened. They probably have him on medicines to keep his blood pressure under tight control (too high and he may bleed again, too low and the injured area of brain won't get enough blood flow to heal) and probably some steroids to reduce inflammation in the injured brain. That's really all you can do and then you wait for the brain to heal itself. They are not letting him eat anything until he is evaluated by a speech pathologist (they do a swallow eval to make sure he can swallow without aspirating material into his lungs). I think they did the same thing when he had his cerebellar injury in St. Louis. As far as recovery goes, each person is different but most people recover at least partially and many people experience a full recovery. Because of where the stroke is, there hasn't been any involvement in his movement (other than his ability to coordinate fine motor movement like pointing and grabbing objects) so it isn't the kind of stoke with paralysis on one side or anything. Meghan said his speech is better today so that is a good sign. Meghan also says that his other counts are continuing to improve (kidney function, liver function, the ascites or fluid in his belly is less and so on) so that is all good too.

We'll keep you posted if we become aware of anything else.

Christy

Update on Dad

Well Meghan flew into see Dad today. I just got finished talking with her, and he has been moved to the ICU for the night. He complained of a headache so they did a cat scan and found bleeding in his neck. This can/is going to his brain. The last couple of days his speech has been slurred, so I am assuming some blood has gone to his brain. So what happens now? Well they watch him and make sure it doesn’t get worse. That is just about all they can do. It is most likely a small vein that is leaking and it will eventually clot on its own, it could just take some time. They have given him some platelets to help with the clotting as well. I will keep you posted as I hear it.

--RM

Update 12/21/04

Quick update to kinda' sorta' explain things: I'm still in rooom G1281, may bd here another week or so.

Here's the problem. Mylotarg is not a standard course of treatment that does not involve splenatic injury. Heparin has been studied to determine the effficacy in V.O.D. (See Christy's notes for an excellent study on V.O.D.)It has been argued successfully that Heparin is NOT indicated in V.O.D. Having said this, I was placed on heparin to see if it were successful-it was. I was taken off heparin and worsensened. The procedure was repeated with similar results; I went on heparin and got better, went off and got worse.

The bad part of the experiment is that it has < 10% chance of success, and now the problem, I've outlived anyone else who has undergone this type of treatment. So here I sit, the subject of some of the most brilliant minds in the world dealing with luekemia, I've outlived all other subjects, and am the subject of several brain-storming sessions with no ideas where to go or what to do.

We've decideded to stay here over the holidays, simply because it is safer to be on this floor than just "out and about" trying to regulate the heparin drip based upon results of a vanacomycin trough.

Here we sit, I'm doing as we as can be expected. It is now official that Dan is the last person on earth a complete match for my bone marrow transport. The other possible matches don't, so they're out.

Cards are on their way, this whole thing is still scary, but I'm so grateful for each second, and every morning I awaken to to the flags flapping in the breeze, I remember just how lucky we are that there are people out there pulling for us.

Chris and Terri.

Almost Christmas

Well a couple of things have happened recently. Trevor was recently baptized at Kirkwood United Methodist Church. Our church does a great job with baptism, it was a really good service. I talk with Dad just about every day. He is doing well. There are a fair amount of complications with his treatment, but he is beating just about everything his body has thrown at him.

Trevor is growing like a weed. It seems like he is learning something new just about everyday. I have gotten a few requests for pictures so check them out below.










-RM

Update on Chris' Condition

I talked to Chris' doctor this morning so I could get a better understanding of what has been going on with him the last couple of weeks. I'll do my best to summarize what I found out for all of you. The bad news is that I think he has been sicker than any of us (or at least I) realized but the good news is that he seems to have stabilized for the moment.

After his fevers subsided in the hospital (the reason he was admitted) which was about 2 weeks after his myelotarg, they noticed that his liver enzymes has risen dramatically. This is the same thing that happened after the myelotarg in St. Louis as I think I mentioned before. There is an entity known as veno-occlusive disease (VOD) of the liver that is associated with myelotarg and also with bone marrow transplant and this is what he has. They did an ultrasound of his liver to diagnose this and this is when they coincidentally found the blood clot in his inferior vena cava. The treatment for both is heparin which keeps your blood from clotting. As we discussed before, this is not totally straightforward in Chris because he is already prone to bleeding because of the cancer. The clot in his vena cava has resolved but they still have him on heparin to treat the VOD. Also, he needs some sort of anticoagulation to prevent another blood clot but there is some question as to how long they will treat him with it because of the risk of bleeding.

So, let's talk about the liver for a few minutes. The liver is probably the most important organ in the human body. The heart is pretty important from a mechanical standpoint but the liver is responsible for many vital functions. First, it acts as a filter for chemicals and toxins. The blood from the intestines and spleen come together in the large portal vein that then empties into the liver. This vein splits up into tons of tiny veins that then basically go through little filtering chambers and the blood comes out the other side and the vessels come together to form the hepatic vein which empties into the vena cava. The liver is also responsible for all metabolism in the body (it metabolizes medications and all food and energy sources - breaks down fat to make sugar for your body to live off of, etc). It is also responsible for making clotting factors (so you don't bleed to death) and the proteins that are the building blocks of the body. VERY important organ.

So, what happened with Chris is that all those little veins in the liver got occluded or blocked which leads to a back up of blood throughout the system and increased pressure within the organ. That makes all the little cells in there mad and they get injured which is what causes the liver enzymes to go up (they release stuff when they are hurt). It also causes bile not to flow through the liver and that causes bilirubin to go up and sometimes for people to turn yellow or jaundiced. If the pressure gets bad enough, the system backs all the way up into the portal vein and causes elevated portal pressure (called portal hypertension). This is a common problem in people with liver failure and can cause several types of badness. First, you can think of veins as similar to garden hoses that are put together with a connector. Sometimes, if you turn the water on full blast, water will leak out where the connector is. Well, consider that each cell that makes up the wall of a vein is one garden hose and so there are millions of hoses and millions of connectors. When they are under increased pressure, they leak and that is why you get fluid in your belly or ascites which is what Chris has. So, having fluid in your belly is a sign that the portal system is under pressure. It also serves as a great swimming pool for bacteria. So, they will put Chris on special antibiotics to try to prevent him from getting an infection in the fluid in his belly. They drained a bunch of fluid off the other day to make him feel better but they will not continue to do that unless they have to because it just re-accumulates anyway and whenever they go in there with a needle they run the risk of giving him an infection. The way you treat it is with certain diurectics that make you pee a lot and medications to try to lower the pressure in the portal system. Chris seems to be responding to these medications. The other badness that can happen is that the vessels get all distended from the pressure and you actually get like varicose veins inside around your esophagus, stomach, and intestines. These vessels can start to bleed which would be very bad in someone who can't clot well.

So, to summarize, Chris has a very serious condition right now known as VOD. The reason the doctors quoted him some nasty percentages last week (which Ryan might have relayed to you) is that most people who get VOD progress pretty rapidly to liver failure. They are very pleased that he seems to have stabilized for the moment. There are still lots of risks with this new diagnosis (infection in the fluid, bleeding to death, progressing to liver failure). The good news is that his blast count in now 1% which is great. This particular doctor wasn't sure what the plan was regarding the cancer treatment but they are supposedly going to discuss that later today.

On a lighter note, Trevor was baptized yesterday. He did great - not a peep out of him while the water was put on his head and then he just smiled and looked at everyone as he was taken out among the congregation. I'll get Ryan to put up a picture or two in his cute little outfit.

Christy

PS - here is a link to a site that discusses VOD in a much more eloquent manner than I did:
http://www.merck.com/mmhe/sec10/ch138/ch138c.html

Greetings;
Started a 66% Mylotarg Wednesday, normal results until Sunday with swelling of spleen and liver. Ultra-sound shows reversal of splenatic artery and vein functions with increased edema. Parocentesis was expected to remove 50ml "fluid" for ananlysis. We were able to remove just over 4L of juices. I may never look at Clamato Juice the same way again.
It's now Thursday, my liver has taken on a little more edema, but the counts are down, on the low side of what the doctor want. Hi suggesttion is that the "problem" will spontaneously reduce, so we're just enjoying the 80 degree weather and 21% humidity. Terri's mom, Joyce flew in so they've getting a few of the essestials needed for everyday living.
It seems I no longer have Mylotarg on my list of availables, but Dr. Ferrajeloli still has several testing options available.

More later as we know them, keep the thoughts coming our way.

Chris and Terri

Is Trevor Growing?

Dad is supposed to be blogging right now with all the recent information he has gotten. I will check back in a couple hours to make sure he has posted something.

Sorry it has been so long between posts. All is well in the Morgan household. We are enjoying 55 degree weather, and getting ready for the holiday season.

Latest update

Noticed that there haven't been many posts recently and don't know how informed everyone is. Chris went back in the hospital on Tuesday (I think) because of a fever. They started him on IV antibiotics and told him he had to stay until he had been without a fever for 24 hours. This is not unexpected since the chemo is making him neutropenic (low white blood cell count which is your immune system). Ryan talked to him again yesterday (Thursday) and apparently he has developed a blood clot (a DVT or deep venous thrombosis) which I believe is in his inferior vena cava (IVC)(the really large vein that returns all the blood from the lower portion of your body back to the right side of the heart). Cancer can make you prone to clots so this is not entirely unusual either. The tricky part is that he is also prone to bleeding (seems counter-intuitive I know) because the chemo is killing his platelets that are responsible for starting the body's clotting mechanism so they have to put him on anti-coagulant medicine (heparin) but not too much or there is serious risk of bleeding. Hopefully, his body will chew through the clot and it will be no big deal. The concern is if a large chunk of the clot were to break off, travel to his heart and then to his lungs where it would occlude small ( or large depending on the size of the chunk) vessels and cause problems with oxygen exchange. That is the danger of a DVT.

There was also some talk about elevated liver enzymes again which Ryan thought was related to the DVT but I think is probably related to the Myelotarg because he had elevated liver enzymes when he got it in St. Louis which is why they only gave him one round of it instead of two. Wow, that was a tremendously long sentence (my former English teachers would be having a cow). Also, for a DVT in the IVC to cause hepatic congestion and damage, it would have to be like completely obstructing the vessel and he would have bigger problems than just elevated liver enzymes.

As you can see, I've gotten most of my information second-hand from Ryan because I was at work yesterday but this is my best interpretation of what is going on. We will keep you posted when we hear more.

Ryan's better, I'm sicker, and Trevor is still doing fine. It seems he isn't just getting some of my antibodies from the breast milk, he is commandeering all of them!

Christy