Team Cory....

October 22, 2010

As I typed the post last night, something clicked about this comment....Team Cory.....up here at TCH, it means a large group of physicians coming together to work as a team. They each have areas they specialize in but they all work like a well oiled machine. I have been updated each day with everything the wonderful people of El Campo and other surrounding communities have offered to do to help Cory fight this battle. When I was sitting here in the waiting room at 3:00 am, that is the time the hospital is the quietest, that's when it clicked, all of you at home are working together to heal this little boy, so all of you are Team Cory too.

Thank you from the bottom of our hearts for everything that has been done in Cory's name. I firmly believe in the power of prayer because if it wasn't for all the prayers storming heaven Tuesday night into Wednesday morning, we would have lost Cory. When Cory entered surgery, I had the strongest feeling of peace and calm come over me...I knew when our surgeon walked out the door, he would be carrying good news.

We have received so many texts, emails and calls asking what can we do for you? All we ask is you become a member of Team Cory and say a quick prayer to continue storming heaven for Cory to "teach the doctors" and for Cory to be cured of this terrible disease.

Another good day....

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....

A corner turned...

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...

The longest day..

Let me introduce myself, I am Jennifer. I am a single mom of two, Cheyenne, my daughter and Cory, my son and the subject of the blog I am starting tonight. It has been a crazy turn of events that began at 1:15 pm on October 19, 2010. But before I start with that let me give you a little background to explain how we made it to that point in time.

October 15, 2010

Starting Friday afternoon, Cory went to stay the weekend with his dad. He was little tired and moody a few days leading up to that day. We, Chey, Cory and myself, had discussed some events that were happening in class about a fellow student picking on him. Cory is a sensitive soul and would not do anything to get a fellow student in trouble even if that meant causing issues for himself. Well, we had discussed these events and formed a plan to deal with them. He was still a little down but I thought he was coming around and feeling better about what was happening in class.

October 17, 2010

Fast forward to Sunday...I called Wesley and asked when he was bring Cory home. Wesley had picked him up from school and usually Wesley is very good about bring Cory back around the same time he picked him up. Wesley said he would be coming back later than normal. Cory had been sick Saturday night and into Sunday. Wesley made some soup and Cory was going to eat some and then come home. I said no problem. Later that afternoon, Wesley called back and told me Cory was still feeling bad. I asked Mom if Cory could stay with her Sunday and Monday? She said no problem. Cory still was not feeling good and not keeping anything down. He was to the point were he wouldn't eat or drink because he didn't want to throw up.

October 19, 2010

Tuesday morning:  Mom called and said Cory was still not feeling good and his lips were cracked and bleeding. I made an appointment for him to see Dr. Winchell at STMC at 1:15 pm Tuesday, October 19, 2010.

This is where our story of Cory begins.....

We went and checked in at the front desk and had a seat. The nurse called us back and she did a preliminary check. She took Cory's temperature--good but he was a little clammy. He crawled on the exam table and we waited for Dr. Winchell. While we were waiting, Mom and I checked out our boy. I looked at his lips, they were very cracked and dry and they had been bleeding. I lifted his shirt and did not like what I saw...there were little pin sized bruises on his chest and armpits. I thought maybe they were some type of allergic reaction to something. All this time, Cory was laying down with his eyes closed. Then Dr. Winchell arrived. She asked several questions and then she did her visual exam. She pulled up Cory's shirt and saw the pin sized bruises. She told us we needed to get a blood test. We went down to the lab and did a pin prick blood test. After that, we went back to the exam room and waited for the results. The lab attendant came in and said she was sorry but we needed to do another blood test because the lab couldn't get a reading on his white cell count. That didn't set well with Cory! It was hard to get him to be still for the finger prick, how were we going to get him to be still for a normal blood drawing. Well the lab attendant was an angel!!! She did it and Cory was calm and not upset. He didn't like it but he let it happen. We went back to the exam room and waited for these results. A few minutes later, Dr. Winchell came in. She said we just couldn't get a reading on the white blood cells and she didn't like the pin sized bruises. She said to be honest, she didn't know what we were dealing with and she wanted us to load up and go directly to Texas Children's--do not stop at home, do not pass go and do not collect $200. Okay, I said the last two but you get the picture.

While she was getting us ready to go to Houston, I called the school and had them pull Cheyenne from class so she could go with us. I knew when Cheyenne found out we were in Houston, she would be upset. Chey and Cory are like peas and carrots and if Cory is hurting, Chey is too and wants to make it better. My Mom called Wesley to let him know what was going on and she left the clinic to pick up Cheyenne from school. We left the clinic and met up with them at my house, I threw a set of clothes into a bag because we figured worst case scenario, we would stay one night because Cory needed to have an IV of fluids...and I know we didn't listen to what Dr. Winchell said but in hindsight, it might have been a good thing. We loaded up and set the GPS and took off for Texas Children's Hospital.

After a few wrong turns, we finally made it to the Texas Children's ER. We walked into the waiting room of the ER at 3:56pm...

Cory's vitals were taken and he was then put into a small exam room where a nurse asked us a few questions about why we were here and did a visual exam. Dr. Winchell had sent a copy of the last blood report with us and I gave it to the nurse. She called another nurse in and we were moved to an ER bed. Within seconds of walking into that room, we had 4-5 nurses drawing blood, 2-3 nurses trying to put in lines for fluids, 2 ER doctor's and several others I don't know who they were. Needless to say Cory became upset and wanted to leave. He said he wanted to go home and sleep in his big bed. Twenty minutes later, we were going for a MRI and we then returned to the ER. Cory's main ER doctor said the MRI results were in and asked if we wanted to see the film. Yes! We looked and we saw three places that were not good. There were two spots the size of dimes and one large spot the size of a half dollar. That was the spot she was concerned about. She had received blood work back and his white blood cells were 300,000...normal levels were below 100,000. That was the reason STMC couldn't get a reading, it was so very high! She said by that level, we were looking at cancer but didn't know what type. They sent Cory's blood work off for further testing and by 5:30ish we had a diagnoses of leukemia...and we should know what type shortly. We found out AML--Acute Myeloid Leukemia--the worst one.... At this point, we picked up two doctors...Dr. Alexandra Stevens, Fellow, Department of Pediatrics, Section of Hematology-Oncology, Baylor College of Medicine--Blood Cancer Doctor and Dr. Patrick Thompson, Assistant Professor, Department of Pediatrics, Section of Hematology-Oncology, Baylor College of Medicine.

A little background on AML. According the the Leukemia & Lymphoma Society website--AML starts with a change to a single cell in the bone marrow. With AML, the leukemic cells are often referred to as blast cells. About 12,330 Americans are expected to be diagnosed with acute myelogenous leukemia (AML) this year. The chance of getting AML increases with age. However, children and adults of any age can develop AML. About one in five children with leukemia has AML. The goal of treatment for AML is to bring about a remission or to cure the disease. The number of patients with AML who enter remission, stay in remission for years or are cured has increased significantly over the past 30 years. When I read that now, it sounds very positive. When you hear your son has cancer, your world is turned upside down.

It is around 6:30 and we were moved into Pediatric ICU. We have a team of no less than 10 people--we have at least three nurses, our two hematologists/oncologists, two ICU doctors and two neurosurgeons. We also have other individuals that consult on Cory's case. Right now as I type this blog and think about all the people we have met, Dr. Stevens, Dr. Thompson, Dr. Whitehead, neurosurgeon and one ER doctor are the only people who are a constant presence in Cory's case.

While Cory was being settled into PICU, we had our first official consult with Dr. Stevens and Dr. Thompson and they laid everything out on the table. We had several things against us at that point. Cory had bleeding on the brain, which as we all know is a very serious life threatening event in itself. But when you add AML, a high white cell count and those cancer cells starting to age and break open, you basically had a recipe for disaster. Let me clear something up about those white cell counts...they are not the wonderful infection fighting white cells, those are the dangerous cancer cells. Those cancer cells were crowding out the red blood cells and they were confusing the life saving clotting ability of his blood. We were told the spot on his brain was slowly leaking out and without the ability to correctly clot to seal it, he could die. Well, if that won't stop you dead in your tracks, nothing will. We all sat in stunned silence...we didn't know what to think, to do or anything. We all sat there...myself, Cheyenne, Wesley, my Mom and a wonderful friend to us, Jimmy. We didn't know what to say. Dr. Stevens began to explain our chemotherapy drugs to us, what dosage, when administered and the side effects. They also explained the treatment cycle--10 days for six months. At that point we slowly try and wrap our brain around the fact that our beautiful, fun loving, high spirited, joke playing, artistic, baseball loving son, brother, grandson and little buddy could die that night in this hospital.

Our plan of action for Cory at that point was the following:

1. We were going to continue to watch the brain bleed;

2. Cory was going to continue to receive red blood, plasma and platelets. He also was given antibiotics to help fight any infections;

3. Cory was going to undergo a procedure called....well, i can't remember the name right now but basically it takes Cory's blood and removes the excess white cells and returns them to his blood system; and

4. We were going to start Cory on his chemotherapy medicine.

Everyone agreed, well the doctors basically told us this was the best line of treatment for Cory to give him a chance to survive. We left the consult with Dr. Stevens and Dr. Thompson around 8:30 or 9:00. Well, as usual, Cory did not want to do it the way we wanted, he wanted was going to do it his way.

When he was moved to PICU, Cory was given red blood, platelets/plasma to replace the blood he was losing and to help with the clotting. It was a very delicate balance because we didn't want to increase his fluid level which in turn would increase the pressure in the brain...but we needed to have these blood products to help Cory get the strength and ability to survive. They continued to watch the brain bleed very closely. They also inserted every type of line you could imagine. The doctors updated us that Cory was doing as well as he could. We lived hour to hour...we made it to 10:00. The blood rinse was supposed to start at that time but Cory had other ideas...he was continuing to have issues so all procedures were pushed back. 11:00 came and went without any new procedures. Finally, 12:00 came and our ER doctor came out and said they had decided to inserted a small tube in Cory's head to monitor the pressure in his brain, they called it a bolt. It actually was a narrow tube and it would only be 1/2 inch in Cory's head. Well, like I said Cory wanted to do things the hard way.

Around 12:30, our ER doctor came out and said Cory is not doing well. His pressure had risen, he had begun to bleed from his nose and his vitals were starting to spiral down. He said Cory would be going into surgery now. Dr. Whitehead came out and said he was taking Cory into surgery, we couldn't take the chance and wait any longer. He was going to open his skull and remove the clot. He was going to watch the area for awhile to make sure pressure doesn't rise or no additional bleeding. At that point he didn't know if he would close the skull or leave it open. So the delicate surgery began....I will tell you that had to be the longest three hours of my life. Just the total unknown, lack of control but the wonderful feeling of turning everything over to the most powerful God. I took my feelings of total hopelessness and worry and turned it into positive energy...I thought I will not lose Cory...my tears of sadness will be tears of strength and I began to send positive thoughts to Cory...don't give up, you will heal, you will be strong, you will win the battle of cancer. You will make it through surgery and you will fight cancer and win! I just repeated those words and I felt the energy coming from all the prayers being sent our way from our wonderful family, friends and even from people we didn't even know. I know in my heart a miracle happened for us last night, all of you who prayed for Cory made a difference and saved his life and for that, my family will always be eternally grateful.

Around 3:45, Dr. Whitehead came out and said surgery went good. This is a man that doesn't get in a real big hurry and says very few words. He said when he opened Cory up, the clot floated to the top--don't know what that meant--he removed it and now the pressure is stable. He was very pleased at the outcome of the surgery. He did not close the area skull, he is planning on leaving it open for 48 hours to monitor the pressure. A drain was put in and Cory is now wearing a gauze turban for a couple of days. Dr. Stevens and Dr. Thompson were very pleased at the outcome of the surgery. He went back to PICU so they could monitor him and try to get him ready to proceed with our plan of action. Around 8:00, we were ready to proceed.

I will close this entry at this point. This time frame is only 19 hours but it felt like two days. I learned alot in this short time...I have relearned to appreciate every moment you have with family, I have learned small victories are sometimes the best victories, I have learned to always be prepared because you never know what life will bring you, I have learned that nothing compares to living in a small town. I am completely blown away by the love and support of everyone. You have opened your hearts and let us rest in them. I truly am blessed to being living in El Campo and to have the support and love of everyone...thank you, thank you, thank you...