Dear Hayden,
I want to keep a little journal of your experiences and recovery during this time in your life. First I want you to know that you are the most amazing little girl in the whole wide world! Mommy and Daddy love you more than you’ll ever know! You’re doing great and we are soo proud of you! Today is Friday the 20th 2011 and its been a really great day! You’ve been moving and talking and drinking your chocolate milk for the first time in a few days (you really love your chocolate milk)! We ended up here because for the past few weeks you’ve had some really bad headaches and have thrown up and just haven’t been yourself. We took you to your pediatrician a few times but they didn’t suspect anything, so we just kinda watched it. You would complain of a headache but then get distracted by swimming or soccer, so we didn’t think much about it either. It started to get really bad the weekend of the 13th. You actually just wanted to lay on the couch all day instead of playing and running around. On Sunday the 15th you threw up and we decided it was time to go to the ER. At the ER they gave you a CT scan and found a large mass in your brain. We were emitted into the hospital and scheduled for an mri the next day. You didn’t sleep very good and you were really mad that you couldn’t eat. They also had a lot of trouble with your ivs and that was really hard for all of us. I was really scared when you went back for your mri because they had to put you under, but you did really good! Woke up and drank like 5 glasses of apple juice. The results showed that it was very large and we were told that that was a good thing…since it was soo large it seemed as though it had been growing for a very long period of time and hadn’t caused you too many problems until now so they were very hopeful that is was benign. They scheduled surgery for wed the 18th, so you could have Tuesday to play and run around. Tuesday wasn’t really a great day for you. Your head really started to bother you along with the fact that you were sick of ivs, having medicine shoved down your throat, and just wanted to go home. Natasha, Eric and Chester (your bff since you guys were in our bellies) came to visit. You two were both in moods and didn’t really want to play. We tried to get some sleep that night but it didn’t work very well for any of us. We were scared for surgery in the morning. I know you knew what was going on too. You said you were scared and wanted to go home. You don’t know how much I want to take you home, right now and then.
Today is Aug. 19th 2011, this is the first time I’m writing since the first MRI you had. It’s been about three months since we found out about your diagnoses. It seems like a million years ago and at the same only yesterday. That wed was one the scariest days of my life. The night before we decided to get you baptized, just in case god only listened or helped if you were and the terrible thought in the back of my mind… what if everything didn’t work out. The morning was awful, you were so sick and in so much pain. I rode in your bed with you down to surgery just holding you scared to let you go. I knew we needed to have the surgery but there is always a thought that at any time I would wake from this terrible nightmare and I would just be holding you in my arms in bed at home. The morphine they were giving you wasn’t working anymore and your head hurt so bad we kept the lights off in the room, you were shaking and throwing up chocolate milk everywhere. I didn’t even know what to do, I yelled at them to fix it; you needed something for the pain. They gave you something that went up your nose and seemed almost instant. I was relieved but scared. Knowing how much pain you had to be in made everything worse. I just wanted you to be all better, I prayed and prayed that everything would go smoothly for surgery, that there were no complications, they got the whole thing, you wouldn’t have a stroke or experience any paralysis and you would have no more headaches. I prayed that the mass would be benign and we would just go home from there and pick back up where we left off. I also cried more than I ever thought was possible. (I do a lot better these days but I still have my moments). When they took you back they promised they would take the best care of you and that you wouldn’t remember leaving me. They gave me a pager, said the surgery would take about 4-6 hrs and they would call my cell every 1-1 ½ hrs to update us. The pager they said was for if they needed us and couldn’t get a hold of us through our cells (which don’t work in the hospital very well). They threw in something about how the pager doesn’t necessarily mean anything bad… About an hour into they called on my cell and said that you were doing great and everything was going smoothly; that they would call in another hour or so. Well an hour and 45 min went by… I was pacing, crying, and praying…thinking the worst. They said they would call in an hour and it had been way past an hour. Didn’t they know to not tell people that if they didn’t really plan on it? At that point the pager went off, my stomach dropped to the floor, I didn’t understand why they weren’t calling my phone. Suddenly “doesn’t necessarily mean anything bad” ran through my mind and we all starting running to OR. We ran in the doors and the nurses were smiling, I figured if they knew something was wrong they wouldn’t be smiling. There wasn’t anything wrong, just letting us know that everything was still going great and you were almost done. I was so relieved. I thought I was going to have a heart attack. I was so mad at them for paging me. Why didn’t they just call? Oh well, everything was fine. You came out of surgery and we were brought back to picu where you would stay for the next couple of days to monitor you closely. You looked beautiful, like a little doll. They saved so much of your hair; I was so surprised. On the side of your precious little head was a giant incision. It was hard to take it in.
The next week was hard. Your little eye swelled completely shut. You just slept, wouldn’t eat, speak, or look at us. There was paralysis on your left side, nothing moved. Physical therapist came in and made you sit up. You didn’t want it at all. You cried and sat there helpless. It was horrible. A few days went by and your eye opened, your cheeks weren’t so red, and I finally got you to start drinking! You had a bite of turkey sandwich and one teddy gram! I was ecstatic. (This reminds me of the obsession you had during our stay at the hospital with the “lunch boxes” which consisted of a turkey sandwich, teddy grams, an apple and an apple juice, you seriously loved them). Anyways, things went on and you were starting to do better.
The day had come that we were to talk to the doctors about what they found. Some stupid nurse let it slip that were getting a visit from an oncologist. The new fear set in. Sure enough, Dr. Wells, oncologist walked in. When I think about the past few months or even my whole life I have to say the news I was given was the single handedly the worse thing I’d ever heard, read, saw, anything. The absolute worst day of my life. Not only was the mass not benign it was rare, scary, aggressive and the highest grade of cancer you could have. I was told on this day that you would angel have less than a 20% chance of survival. Maybe 2 years. They didn’t know anything about it. I honestly thought my life was over, I would never be happy again. A few min past after he left, we all said a few things, basically in shock. I just needed to be alone and took off down the hallway. I ran outside. I thought for sure my heart would explode that instant. Or that it would just give out. My lungs would collapse. But they didn’t. I collected myself and went back to face our family and the realization that my perfect, beautiful, healthy, smart, funny, amazing angel had cancer. Any that it wasn’t going to be okay. I felt hopeless.
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