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...