October 21, 2010
I am finally writing about the current day.......our first hours here were filled with prayer and consults with doctors and just trying to wrap our mind around how did we get here. Wednesday was filled with family and friends visiting, trying to get some order in the midst of chaos and dealing with a new challenge. We made it through one little baby step at a time.....
Mom woke me up around 8:00 this morning. Dr. Stevens was here to have our morning consult and update about Cory. She had the results of Cory's blood work after the leukapheresis. It had reduced his white blood cells to 50K! God is good! The procedure had cut the amount in half. Dr. Stevens was pleased with the results, I knew Cory was accomplish a reduction but not this large of an amount...the night before, Dr. Thompson had told us that his levels would slowly start to drop in small amounts not the large drops we are seeing now. He said this slow drop is perfectly normal, we didn't care the amount, just as long as they were dropping. She said his clotting function is still out of balance. She said the head of Cory's team of hematologists which have been working on Cory's case from the beginning, have decided instead of being reactive and waiting on the results of blood tests every 4 hours, we are going to be proactive. That means we are starting a continuous drip of plasma and platelets. She said this will help Cory and put us in a better position with the clotting issue. I asked her if this situation with the clotting being out of whack "normal" issues someone with AML deals with and she said yes. She said if we didn't have the brain bleed and we are having to watch so closely the fluid levels and pressure issues, everything else would be very typical issues an AML patient would experience. She also said the dressing around Cory's head has been removed. We will be able to see the incision from surgery early Wednesday morning. I asked when the bone flap would be returned and she said his brain pressure would have to decrease and stay stable before Dr. Whitehead would even consider replacing the piece. So for now, the bone is frozen in a freezer. After we discussed everything, I asked her just how many people do we have working on Cory's case? She said we have several teams of experts in different fields--hematology, oncology, internalists, our ICU doctors and our team of nurses--she said she thinks at least 40-50 people working to help Cory heal. I had no idea of all the people working behind the scenes to make our little boy healthy again....our angels. She said she would see us again around lunch and give us another update then.
We had a visitor again today, our friend Jackie Rachunek. Jackie is one of our angels in El Campo. She picks up Cory and Chey from school and takes them home while I am at work. Jackie and I are also leaders of the den Cory and her son, Hunter are in together. We went in to see Cory this morning and talked to him and we had some reactions to what we were telling Cory. Jackie was talking to Cory about his friends from school worrying about him and how Hunter was praying for him and couldn't wait until he was well enough to come for a visit. I also told him I had talked to Miss Tiffany, another good friend, and she said she had picked up her son Cole from school and he asked Well, are you taking me to see Cory in the hospital? I told Cory all of his friends really miss him and are praying for him to get better so they can come and visit. A few minutes later, I saw Cory's foot moving....and then his hand started to move and then he started having the gag reflex of having something in your mouth. I told the nurse I thought something was going on with Cory. She said okay and turned to get someone. Another tech walked in and started to change some settings on the machine connected to Cory's breathing tube. When she was finished, I asked her what was that? Was that normal or just what was it? She said Cory was trying to wake up and that was the natural choking response. Jackie and I both said he heard us talking about his friends and he wanted to wake up and go! Just another example of the power of positive thinking and prayer! We visited Cory at a good time because a group of doctors giving our ICU doctor, Dr. Desai, an update on Cory's night. We jumped in during the time they were talking about Cory's levels in regards to his blood pressure and pressure in the brain as well as other areas this could effect. He said in an accident, you would have trauma to the brain. Yes, that is bad but you couldn't do anything about what happened. What you need to focus on what is happening because of the trauma to minimize any type of damage to the brain. He said Cory is different because he didn't have a trauma to get the brain bleed but he is also unique because you normally don't have a brain bleed with AML. Remember this comment because I will address this later in our day.
That took us up to lunch time and another consult with Dr. Stevens and Dr. Thompson. We introduced Jackie to them and they began. Dr. Thompson wanted to re-emphasis that what happened to Cory was something that was meant to happen. It was not caused by food, drink, anything he did during his normal day to day activities, not anything I did while I was pregnant, not heredity...nothing. He also stressed we would not have to worry about having Cheyenne tested. He said in Houston and the outside area, which is around 4 million people, they only see 25 new cases of AML a year. It does not run in families, it doesn't matter if you have any other type of cancer history. We just don't know why Cory developed this disease. Dr. Stevens said Cory would be getting another round of chemo this afternoon and we were going to do another procedure, leukapheresis on his plasma. They didn't want to wait on Cory to make his own and so they are going to give him a boost. It is the same procedure as removing the white cells but we would be removing the bad plasma cells and putting in good plasma. The procedure would take 2-3 hours and hopefully we would have good results. We will probably hear the results Friday. We had a good laugh, Dr. Thompson called the procedure, getting the oil changed. It was a relief to laugh over something so simple but we all needed to release.
Cory is retaining lots of fluid, which Team Cory stresses is normal and very expected considering our course of treatment. They have to be very careful and figure what can be put in and they measure everything that comes out from the drain in his head, spinal fluid and urine. He is face is very swollen, some from surgery but mostly from the fluids and he is also retaining fluids throughout his body.
Cory had another visitor this afternoon, his 1st grade teacher, Miss Bartek. Dawn and Cory were fast friends and that friendship continues today even though Cory is now at Hutchins in the 3rd grade. Every time he see her, he runs over and gives her a hug. We even have a book from her personal school library Cory forgot to return before the end of school, which is on my desk at home. Every time he sees it, he reminds me we need to return it to Miss Bartek. Dawn, I think I will give the honor to Cory to return it when we leave the hospital in March. I took her in to see Cory telling her to talk to him and rub his foot. We stayed for awhile and then we left the nurses to do what they needed to do. We sat in the waiting room and Dawn started talking about the fundraising she does for the Leukemia -Lymphoma Society. Dawn runs marathons and half-marathons and she travels everywhere. If I remember correctly, she recently went to San Francisco to run a marathon to raise money for the Society. She said she started three years ago giving her time to this worthy cause and now it means more to her because she is raising money for Cory and his disease. I sat there listening to Dawn and just amazed how here we were bonded by friendship that was created in the classroom, we just added another layer by fighting to beat the disease of Leukemia. What wondrous ways our God works to bring us together....Dawn, don't give up the fight, God has given you a symbol of what your hard work and determination is doing to conquer the disease. We will be your strength when you are tired and feel you can't go on and we will be there to lift you up in celebration when the job is done.
After Dawn left, Mom, Cheyenne and I felt like we needed to see something different and we needed to get something to eat. We walked over to the cafeteria. We sat by the window and looked out and tried to be normal, whatever that means anymore. As much as we are here focusing on Cory's healing, we as humans still need to take a break from the constant tension. I don't want you to think for a minute my little boy is ever off my mind but I still have a daughter who needs the attention just as much as he does. We sat and talked about what her plans were for school and possibly for the next few weeks. She said she didn't know and I said that's fine we would talk more this weekend. We stayed down there until around 5:00 because our doctors were supposed to be back for the evening consult.
We had more visitors stop by, Wesley's mom and dad. Wesley took his dad in to see Cory which I know was very hard on him for two reasons. Bug has always seen Cory on the go, playing with his tractors or walking the fields with Wesley and just generally on the go being a boy, this is not what his grandson is supposed to be doing. Another reason and perhaps the worst, is because on September 2, 2010, Bug had surgery to remove a cancerous tumor along with 18" of his colon. It killed me to see this man come out of ICU with tears streaming down his face. How devastating it must be for a father to go with his son and both see their own flesh and blood hurting and so very, very sick and not being able to fix the problem. As men, that is what they are expected to do, take care of their families and to not be able to do that is so very hard. Wesley's mom went in with my mom and they visited with Cory. As parents, we hurt when we see our children dealing with difficult situations in life. As grandparents, it hurts twice as much to see their children and grandchildren dealing with difficult situations. What great parents Wesley and I have....they are being strong for us during this time.
Wesley's dad, my mom and I were talking about what was happening with Cory and trying to figure out the meaning behind all of this. Wesley's dad said Cory is here because he is going to teach somebody something. Remember the comment Dr. Desai made to the group earlier in the morning. Cory is different because we don't see brain bleeds with AML. Cory is teaching something to these doctors. That is one part of why we are on this journey. We continued to talk about Cory and other different things until we saw Dr. Stevens and Dr. Thompson walk through the door. They motioned for us to walk down to the conference room.
We all sat down, Marcell, Bug, my mom, myself, Cheyenne, Wesley, Dr. Thompson and Dr. Stevens. They made the comment new people and I said yes, more people on Team Cory. I told Dr. Thompson since we have new members if he could give just a brief update on Cory in medical terms what has happened since we arrived and he did. When we were all up to speed, he started giving us an update on Cory since mid-day. He said the chemo went fine no issues and he talked about his white blood cells. He talked about where we started at 48 hours ago he was at 300K, how Cory dropped that level 16 hours later to 220K. He said after the white cell removal process dropped his levels to roughly 100K and how the first day of chemo, those levels dropped to roughly 50K. He said after the second day of chemo, those levels dropped to 12K!!! We were all overjoyed....smiles and laughter abound. That is amazing but I knew it could be done...because when you have our amazing God and Team Cory working together hand in hand, miracles will happen. We were so excited but Dr. Thompson said this is great but let's not forget, Cory is still very critical. We are still dealing with a major issue of his not clotting and he is still at risk for additional bleeds but do I feel better about Cory, absolutely. We are in a better place than we were 48 hours ago but we still have a long way to go. We are just making baby steps...which is just fine with me. They then opened it up for any questions which they always do after they share Cory's progress. Wesley's mom and dad had several questions about Cory....the main question was why? Could have been this or that, how long could have been there, etc. and this was the response.....
"You know what....what happened before you walked into the doors of Texas Children's Hospital doesn't matter, forget it, what matters is you are here. We need to focus on what happens from this moment on. We are going to treat Cory and we will cure him of this disease."
--Dr. Patrick Thompson
Notice the word will...they do not think in the terms we normally think of when talking about cancer. Here, it's you have AML or you don't. They don't talk about remission, they talk about cure, where there is no more disease. Both doctors talk in the terms of you have cancer and after treatment, you won't. Very positive but very honest talk.
I will end here....another good spot to just take a deep breath and to let it out....