I ended my first post at a point where we could actually breathe. We had been holding our collective breath for 16 hours. Now we can stop...take a deep breath...and just breathe...
Our journey continues...
Wednesday, October 20, 2010
We met with Dr. Stevens and Dr. Thompson. We were told Cory had a good early morning after the surgery. His pressure level had stayed steady and that was a good thing. They decided Cory was in a good place to go ahead and begin his chemo treatment for today.
Cory's Chemotherapy Treatment Plan
Dr. Stevens had told us in an earlier consult that with AML they use three different medications. They are as follows:
1. Cytarbine
2. Daunorubicin
3. Etoposide
Cytarbine is given in two different ways with AML. It is given through an IV and it is injected into the area along the spine that holds the spinal fluid. At this point in our treatment, Cory is only receiving Cytarbine through his IV because of his brain issues. Daunorubicin and Etoposide are also given in IV form. We are not real positive if treatment of the spinal fluid is going to be part of our treatment. We will know more further into this treatment cycle.
Cytarbine is given every 12 hours for 10 days. Daunorubicin is given on Day 1, 3, and 5 and Etoposide is given on Days 1-5. It takes from 4-6 hours for the medicine to be given. A round of treatment is a thirty day cycle. Each round of treatment has a window of medicines given from Day 1 to 10 and a window of recovery from Day 11 to 30. Let me show you this way:
Day 1 - Chemo
Day 2 - Chemo
Day 3 - Chemo
Day 4 - Chemo
Day 5 - Chemo
Day 6 - Chemo
Day 7 - Chemo
Day 8 - Chemo
Day 9 - Chemo
Day 10 - Chemo
Day 11 - 30 - Recovery
All treatments are given as in-patient and Cory will have to stay in the hospital during the recovery period as well. We were told if he "recovers" sooner, he could be able to come home for a few days but then we would have to come back to the hospital and stay during the next month of treatment. His will go through six rounds of treatment. Right now our lives are in a holding pattern until Monday or Tuesday. His team feels like Cory should be at a point where they can bring him out of sedation. Cory has different ideas about that but more on that later. Friday, October 29th will be Day 10 of treatment. We should have a better idea of how our lives are going to be. This I do know, Cory will not be able to participate in any of his activities--archery, cub scouts and baseball and he will not be able to attend public school. Anything else, we just don't know...
Now back to our day...
Since Cory had such a good night, it was decided to go ahead and get his chemo started. They are continuing to given him red blood, plasma and platelets. He is still having issues with his clotting ability but when we questioned Dr. Thompson yesterday, he said until we get his AML under control, that will continue to be an issue. He said this is now an issue we can control. The brain bleed was something that couldn't be controlled but everything else from here on out, can.
We have seen a change in both Dr. Stevens and especially Dr.Thompson. I can tell a difference in his posture, his mannerisms and in his overall appearance. In our consult with him yesterday evening, I told him the differences I saw in him. He kinda shrugged and said it was a scary time with Cory when he arrived but with the bleed under control, he felt we were at a place where we could stop and take a breathe. It hit me...unknowingly, we were all thinking the same way. At 8:00 am, everyone on Team Cory was stopping and taking a breath. We had come from Death's door and it was now time to stop and just breathe....it gave me a wonderful calming feeling that we were definitely at the right place and God had placed us with the right team. Dr. Stevens looks more relaxed as well. She doesn't show her emotions as much but I can look at her and tell she is breathing as well. She smiles more and is more relaxed.
The day started with at 8:30 with a procedure called leukapheresis. This involves a special machine which is used to remove white blood cells from the blood. Cory's blood is put through a blood cell separator where the white blood cells are removed. The rest of the blood is then returned to Cory's bloodstream. Since Cory's white cell count was at 300K when we arrived, he needed help to get that cell count down. I went in to see him around 9:30 and received lots of news. When they started the procedure, his level was at 220K! It had dropped that much since 4:00pm Tuesday. I don't know what the reason was but I was thanking God it dropped. Our nurse, Jenny--how appropriate!--said the procedure should take until 11:00 and that is when Dr. Stevens wanted the chemo to start. I asked her how Cory was doing and she said fine but they had an episode with him earlier. He had opened his eyes and started moving around and reached for his breathing tube. I smiled and laughed. That was our Cory! I told her that doesn't surprise me, Cory is just being Cory. He wants to do things his way.
I went in later to see Cory after lunch to get an update on the chemo treatment. Jenny said he was doing well and said Cory had another episode again. She said this time Cory opened his eyes and looked around. She talked to him and he started moving around and reached for his breathing tube. I smiled and laughed. I did ask her if that was something that was normal, meaning reflex or is Cory coming out of sedation on his own. She said that is a good sign he is waking up and moving and especially reaching for his tube. Dr. Thompson said that is a very good sign because it takes deliberate movements to reach for his tube. He has to think and get his arms to move so he is pleased with those responses. He did stress that just because Cory is doing this that's a good thing BUT he will not feel comfortable until he has Cory fully awake and talking. I will not feel comfortable until I talk to Cory and I have responses I am comfortable with.
Cory continued his chemo treatments throughout the day. Team Cory continued to monitor his plasma levels and various pressures. They were happy to report his brain pressure has not changed but his plasma levels were not at the level they needed to be. He continued to receive blood products--whole blood, plasma and platelets--every 4-6 hours depending on his current blood test results.
Other issues we are facing...
With Cory's vitals, we are having to walk a very, very delicate line. Dr. Thompson explained to us with chemo treatments, patients are normally given fluids to help counteract the effects of the medication. He said with Cory, we are not going to be able to. We can't because he already has high fluid levels because of all the blood products he is being given. If the fluid level increases, it will increase the pressure in his brain. Cory is getting lasics to help reduce the fluid he is retaining. In a way, that is a good thing because we can watch his output of urine and the function of his kidneys. We are also watching his blood pressure. If his blood pressure rises too high, it will also increase the pressure in his brain but if the blood pressure is too low, then Cory's blood will not flow into his brain. He was only given a small dose today to bring it to the desired level. We are watching his temperature levels. Some patients run fever with their chemo treatments. Cory did develop a fever and it was staying around 103 degrees and Team Cory is giving Tylenol to help bring it down plus putting ice packs on him. We don't know why the fever developed. It could be from the chemo treatment, it could be from an infection or because of the brain issues, which is how fever is regulated. To me, this is just another way Cory is staying in control and doing what he wants to do. I always tell Cory before I leave his room, behave and don't cause any trouble for the girls and stop flirting with them.
We had lots of visitors today. Friends and family made the trip to see us and to tell Cory hello. We are trying to keep any visit to Cory as normal as possible. When I go in to see Cory or we take someone in, I tell them to talk to Cory just like he was sitting up and awake. Touch his hand or stroke his foot and to always sound upbeat and positive. I want Cory to know that everything is okay and I feel like we are sending good positive energy to Cory which in turn keeps he calm and he can use his energy to heal. I always warn them as to what Cory looks like. He has a wrap around his head with a drainage tube coming out of the top. He has a breathing tube, he has several IV sites on his arms and feet and he has two catheters, one in the groin area of each leg. He also has an internal blood pressure monitor at his wrist. It is extremely scary to see your child laying there with numerous tubes and monitors and knowing his life hangs in the balance. I hold my breath every time I walk down the hall to his room. I cautiously glance into his room to see if there is activity going on or if his room is quiet. He has wonderful nurses who no matter what they are doing, they stop for a second, listen to what I am asking and provide me with the answers, if they can. I try to tell them how what type of person Cory is, someone who likes to pick on his sister, which he is very proud to tell you about, he likes to draw pictures, play with his Star Wars and tractors. I want them to know Cory for who he is...now he is just a little boy laying motionless in a bed, not talking or playing or telling Momma I love you. Although I know deep in my heart, he will be talking non-stop again, he will have his toys scattered across my bedroom floor again, and he will be curled up in my arms again telling me Momma I love you...I know this just like I know the sun will rise everyday...I have the faith.
This brings me to another stopping point in our journey....it is at night when everything is quiet and I can just sit still and breathe...to think about how far we have come in such a short period of time, to be amazed at the power of pray, to appreciate the wiggle of a finger, a enjoy visit from friends, to read a text saying we love you or sending prayers your way, the warm hug of family or just the sound of quiet...