September 11...........Day 9 after transplant

For the last 3 days Charmaine has been so very sick and in extreme pain with the mucositis. She has been on morphine constantly until yesterday. The mucositis seem to be getting a little better so the morphine drip was removed. She has a button she can push when needed. She was able to swallow some liquids for the first time yesterday.

Wednesday she broke out in a rash over her entire body itching like poison oak. Nothing they could give her would stop it. They did not know if it was a drug reaction or graft verses host disease setting in so they took a skin sample and sent it to the lab. Turns out it is GVHD. They started treating it with steroids on Wednesday night even before it was confirmed which is the protocol for that problem. This brought on a new problem with the side effects of this drug. No sleeping, talking completely out of her head, seeing things that are not there, hearing peoples voices who are not there, and forgetting where she is. Someone has to be by her side at all times while this is happening as she tends to tug on all the lines coming in the IV.

Yesterday afternoon late the steroid effects let up a little and seem to be helping the itching some.

It is very rare for graft verses host to appear this early. Usually it is a month or two before it surfaces. That is her body realizing the new cells are there and they start to fight with the old ones. Some of this is normal. It can be mild or so severe it can kill you. We are not sure yet if this is good or bad.

According to the Drs., on the 10th day or so some new white cells should start showing up in her blood. This is the first evidence that the engraftment is starting. When this happens her mucositis will start healing.

She has to have lots of blood and platelet transfusions and will need more until she gets stable.

I think the catheter will be removed today. It's early now so I do not know what has happened during the night. Stefanie is with her. She is relentless in taking care of Charmaine and is as informed on whats going on as the nurses. I don't know what I would have done without her. Natalie helps all she can but has 3 babies at home and is restricted somewhat.

It is almost more than I can bare to see her in this condition but I do know each day we are one step close to getting her well and home again.

I still know that God is always in control and He is always with us but I guess sometime humans emotions take over.

Pray that she will not have GVHD to a high degree and that her white cells build back fast and soon.

I hope this post makes sense.

Sam


****UPDATE****

Charmaine was able to sleep all night! Very much needed sleep for both of us!! The doctors have said they are very pleased with her body's reponse to the steroids and the rash looks much better. The catheter was removed and she has sweet freedom from that. The side effects from the high doses of steroids are still very evident and require us to stay close by her side at all times because she gets very confused and disoriented. Her white blood count is up to 700! It has been 300 for the last 2 days, and zero the 4 days before that. This could be the beginnings of engraftment, which means her new cells are growing. She was able to drink an ensure, and eat an entire packet of oatmeal this morning for breakfast!! Her mucositis is much better. Keep up the prayers that the GVHD will get nipped in the bud so her body will allow the new stem cells to grow.

Stefanie