How it started

I only want to type this once and don't want to re-read it for spelling or grammar errors, but here it is. The story of how this stupid thing began. Two weeks ago I started noticing that Atticus' eyes looked funny. You know when your kids get sick and get the "glossy" eye look? It was kind of like that but I couldn't pinpoint exactly what it was. They were just off. You would look at him and think, "Hmmm, they didn't use to look like that." Then I started noticing that he would get a really weird facial expression every now and then. But again, I couldn't pinpoint exactly what was weird, just that it was. I kept asking Eric, "Don't his eyes look weird to you?" and "Look. Did you see that. He had the weird facial expression again." Eric and I together started noticing that he was tripping a lot more. Loosing his balance for no reason. That instead of him running up and down the stairs, he would hold on the the railing of the wall. Two weekends ago we were in the backyard playing baseball and he didn't hit a single on. Not one. Those of you who know my Atticus, know that he can hit it over the fence. We just chalked it up to an off day. As that first week was coming to an end I started noticing that instead of looking at something straight on, he would turn his head so that his LEFT eye was the dominant eye. Last Sunday/Monday is when things started going downhill. Symptoms getting significantly worse. It went from both eyes looking "off" to just his RIGHT eye. Instead of looking at things straight on, he would turn his head so that his left eye was in the lead. But at that point he had no complaints. His right eye started moving upward and inward. His occasional weird facial expressions was almost permanent. I didn't realize it then but when he talked, ate, smiled, the RIGHT side didn't move or respond. Monday we went to Joceyln's house for a playdate and I asked her to watch Atticus (without him knowing) and tell me if she thought he looked "off." She agreed that his eye's especially did not look like they use to. Wednesday evening, we had a picnic dinner outside and after he wanted to play golf. But couldn't hit a single one. Again, if you know Atticus, you know that he's crazy athletic. So for him, thats really weird. He got really frustrated and didn't want to play anymore. I just thought that maybe it was because he had woken up from a late nap and was groggy. Thursday morning we were in the playroom looking for a particular car he wanted. I was by the bookshelf and he was by the train table (not far from each other). . . Me: Atticus, I found your car A: Where? Me: Right here bud A: Where? I can't see it Me: Bud, it's right here in my hand (I started to walk closer to him) A: Oh! Now I see it That's when my heart started to race and I knew something was definitely wrong. I took Atticus to preschool and talked to Mrs. Cherry to keep an eye on him and informed her that I was going to make an appointment with his pediatrician, but to keep a close watch on him. (As mentioned earlier, his balance was getting, not horrible but worse.) I got in the car, called Eric and expressed my concerns then called the Doctor and made an appointment that day at 3:30pm. Mrs. Cherry called me a couple hours later telling me that the kindergartners were getting there eyes screened and she went ahead and had them examine Atticus. This is what was said, "His right eye stay in the upward inward position." "That his eyes can follow something to HIS left but not to HIS right. He would have to move his entire head or body to look to HIS fight. The also noted the non movement of the right side of his face. It wasn't like I was excited, but I was excited. "That's exactly what I have been talking about" was my response. I picked Atticus up from school. Gave him a snack, talked about his day, then headed to the pediatrician. I explained everything to Dr. Straughn (we love him). By this point his symptoms were very obvious to everyone, not just me. So he immediatley saw what I was talking about. He turned the lights of and got out his flashlight and began examining. Again. Then again. Then again. My heart started racing. I was watching Dr. Straughn's facial expressions and knew that he was doing the same thing over and over and over. He turned the light's back on, checked his reflexes (now my eyes are filling with water, heart ready to jump out of my chest). Dr. S: "I have to be honest. Im concerned." Dr. S: "There is a possibility that it could be Bells Palsy. Which can come after an intense infection. And after the chicken pox and rash he had in December, it could have caused it. But, there is a possibility that it could be something neurological. I want to get a 2nd opinion. And send you to the hospital for an MRI. He grabbed another pediatrician who did the same type of tests... examined his eyes, had him balance on one foot, squeeze his fingers, follow his finger with his eyes, checked his reflexed. But came to the same conclusion, possible bells palsy but that he agreed with Dr. Straughn in that Atticus needed to see a Neurologist and get an MRI. So we went straight to admissions (our pediatrician is in the same medical center as the hospital). I called Eric in tears and told him to meet us at the hospital. We got checked in. They started an IV (which although Atticus cried he did amazing), took him to a "treasure chest" to pick out a stuffed animal, then we got settled in our room and waited. The Neurologist and attending hospital Pediatrician came in and did there examinations. What's funny is, while being admitted I was all knots inside thinking "something is wrong" but during the Neurologist's examination is thought, "It's bells palsy. He's totally fine. Or will be soon." Once the examines were done, the Neurologist informed us that it was NOT Bells Palsy, That bells palsy only causes facial paralysis. It does not affect the eyes or balance/coordination. He said, "So, the investigation starts now. We will get an MRI in the morning and go from there." Eric and I got emotional but we obviously didn't know what we were in for. Atticus was handling everything great. I really tried hard to pep talk the hospital before we acutally got to his room. Telling him it was his very own hotel room with room service and a cool bed that moves, his very own tub! So he wasn't nervous. Once we got him dinner and ready for bed. I took Isaac home to nurse him and put him to bed. Called Leah to make arrangements for Isaac. Called family and cried. I thought, "okay, so he may not be able to see out of his right eye. No big deal. Or he may have to use a walker or wheel chair, still no big deal. Those are things we can fix." On the way to Leah's to drop off Isaac. I had the biggest pit in my stomach. I knew something was wrong. I knew it was going to bad (not this bad though). It was the weirdest thing, I had a cd of primary songs playing, when out of the blue Atticu's blog books popped in to my head. How I have every second of the first 3 years of his life documented almost to the minute. The first time he rolled over, ate rice cereal, first word, funny things he's done and said. Now don't get me wrong I am still documenting my boys but have not been as good. Then I thought Atticus is like no one I have ever known. We have always said, "He's our intense child." Always ahead of the game. Wise beyond his years. Then I thought, "what if we had so much packed in in his little body because he won't be here." I of course lost it called my sister, who calmed me down, then got to the hospital. They took him for his MRI right at 8am. It took about 45 minutes. Then after monitoring him out of sedation we got back to our room. I don't know how much time passed, but it wasn't very long before Dr. Lenarsky and the attending Pediatrician came in to talk to us. He informed us that Atticus has a brain tumor. Located on his brain stem. From there my memory gets very blurry. I know I immediately started crying and remember asking a question or two but it was Eric's question the really turned our lives upside down. He asked a question something like, How long or what's the outcome, something along those lines. I specifically remember the Dr. looking shocked and said, "When you ask it like that, Im not going to lie. Your up against the worse of the worse with little to no success." Even as I type this, it doesn't seem real. This is not my life. After I heard that It gets really blurry. I don't remember much (which Im grateful for, no one wants to remember the moment they are told their child is going to die). I remember Atticus, Me, and Eric were sitting on the couch, Dr. Lenarsky broke the news and I screamed/sobbed started kicking and stomping my feet, and held on to Eric. I do remember seeing the Pediatrician taking Atticus out and shutting the door. I don't know how much time passed. I lost it. I absolutely went crazy. Crying, saying "no no no" over and over and started hyperventilating. That day was absolutely crazy. It felt like we saw a million doctors. Atticus was asked to to test after test.... touch your nose, squeeze my hand, walk to there and back, jump, close your eyes, smile... I just went through the motions numb. I don't think Atticus remembers much. The sedation from the MRI that morning took a long time to wear off. Maybe Im just telling myself that to feel better. One thing I know for sure is what a good boy he was. So patient. So obedient. So strong. So Atticus. Pontine Glioma... let the fight begin.