Megan's Brain Surgery and Tumor story

It all started when Megan started noticing that she had bruises all over her body and couldn't explain why. We thought that maybe her iron was low so we took her to the doctor on July 7, 2012 and they did some lab work and told us her platelet count was extremely low. It was 13. So they started doing blood work to check to see what could be wrong. We went back when the lab work was back and everything else looked good so they checked her platelet count and it was still extremely low at 19. So they decided she needed to go to a hematologist. She is will be 18 in just a few months but she still had to go to a pediatric hematologist. But they couldn't get her into a pediatric hematologist for 3 months and by that time she would be 18. So the doctor called a friend of his who was a hematologist and he said he couldn't legally see Megan until she is 18 but would tell her doctor what he thought was wrong and tell him what to try until then. So her doctor called us and said he thought she had something called Idiopathic Thrombocytopenic Purpura ( ITP ). They treat it with high doses of steroids. They started her off with 8 pills a day for 4 days then it went down to 7 a day for 5 days and then 6 a day for 5 days and so on until it was 1 a day for 5 days. By the third or fourth week Megan's face was swollen, she had gained a lot of weight and she couldn't sleep. Her platlet count was back up though. They said it was a result of the steroids. Then she started acting different. she was very quite and just wasn't acting like her normal self. We started getting concerned and took her back to the doctor on August 14, 2012. They decided to do some more blood work. Well we left there and had some errands to run and got some lunch. By the time we got home Megan was acting really confused and scared. She looked me in the eyes and said, Mom I feel like I can hardly breath and said I think I am going to die. I was really scared by the look in her eyes I didn't know what to say or do. My older daughter Miranda said, I think she is having an anxiety attack. I wanted to take her to the ER but then she said I think i am ok now. So we ate supper and decided to lay in my bed and watch television. About 9:00 Megan started getting confused again and I started getting very worried. Her Dad and I decided to take her to the ER. On the way there she all of a sudden said, I'm good. I think I am alright now. I said we are going anyway and see what they say. I knew something was wrong but I didn't want to scare her. That was the best decision we will ever make. When we got there they did a cat scan and found out she had hydrocephalus and she was in a lot of danger. She had to get an emergency shunt put in to relieve the pressure. We were at grand strand medical center in myrtle beach, SC. They told us she had a blockage in between the 3rd and 4th ventricle of her brain. After they put the shunt in, Megan was so much better, but she had a tube running out of her brain and had to have another surgery done to bypass the blockage. They had to fly her to the children's hospital at The Medical University of South Carolina (MUSC). They wouldn't let us fly with her so we had to drive 2 hrs to get there, first we went home (45 min. away) took showers and got everything we needed and then drove to MUSC. That was so hard for us as her parents to watch that helicopter take off. So I wouldn't stay there and watch it. I went straight to the car and started crying. It had been a long night and day, and it was only noon. We finally got to MUSC around 4 or 5 and she was talking and the confusion was gone and we were so happy to see her. About 20 of our family and friends showed up at the hospital. Megan was so strong and didn't complaint about anything. She didn't even need any pain medication. So the next morning, Thursday August 16, 2012 they brought her to surgery for the second time to make a new passage for the brain fluid to drain and to take the shunt out. The surgery went great. Megan was feeling so much better. They had to start her back on the steroid taper and she didn't like that cause she hated the way they made her feel but she was going to be able to go home on Friday August 17, 2012. By this time we were so relieved that we laid down and finally got some sleep. Everything was going to be alright. Well it wasn't long before everything came crashing down again. Some new doctors came in and told us that Megan had a tumor and not a blockage that stopped the fluid from draining. We were devastated. We didn't know what to think. This couldn't be happening. They moved her to a new room out of the ICU to a quite hall so we could try to get some rest. So now what? The neurologist came in to talk to us and told us that the type of tumor she has is a slow growing glioma. They won't do a biopsy because of where it is located. Megan will have to get another MRI in 3 months to see if it is growing but they are very reassuring that it won't. She will have to get a third one three months from that one and then go from there. We are trying really hard to be optimistic about this. Sometimes it is very hard and I see the fear in my daughters eyes and I wonder about her future. She will graduate from high school soon in May. We are just living day to day right now and hope for the best. I just know that whatever comes our way, we will get through it. There will be a BBQ fundraiser for Megan on October 20, 2012. This will help us with the medical bills. We spent a week at the hospital and that set us back financially so this will help us out a lot.