Radiation Day 1

1 down 29 to go. The word that best described today is "sucked." I apologize to the parents that are reading this. I realize that is not a very lady like word, but its the absolute truth. It was an incredibly trying day. Atticus woke up absolutely exhausted and starving (even though at 2 am he ate, and this is no joke, 5 chicken nuggets, a cup of peaches, pretzels, over 1/2 a grill cheeses sandwich, macaroni, and a few cheetos), and was pretty upset when he couldn't eat anything. It broke my heart to tell him he had to wait, I try to tell him in the most upbeat positive way I can. Reassuring him that we will get LOTS of food after his appointments. Once at the hospital they took us back to our room "accessed" his port (meaning they inserted a needle connected with tubing). It doesn't hurt him but it really scares him. He even asked me this am if he was going to have to get the "yellow" poke. The needle has a yellow plastic 'house' to protect it from going in too far. He was so brave. So so brave. I held him and walked to the radiation room where the anethesthiologist gave him the sedative (while in my arms, which I am so grateful for). They I leaned him back in to Dr. Davis' arms and they walked me out. This particular part went amazing. He didn't cry. He wasn't scared. And I am so so grateful that he gets to be in my arms while putting put under, that he is totally out before he even sees his radiation mask. Then we waited. Exactly 41 minutes. I cried a bit but had an amazing hubby and family to support me and remind me that this will help him feel better. Once done with radiation, they got me and Eric to be in there while he woke up. It didn't go so well. He was really agitated. Crying. Didn't know who he wanted or what he wanted. Was super hungry but didn't want a snack at the hospital. He wanted "subway at home." We then went to see Dr. Lenarsky the Oncologist. He truly is the most amazing doctor. He is so good with Atticus. It was Dr. Lenarsky that got him to snap out of his "bad attitude." Dr. Lenasrky to him for a walk to the secret room to pick out a toy. Atticus of course picked out a racer. We talked about the many side effects Atticus is having and he said there are really only two options. Medicate more... add a sleeping pill. Or, medicate less and back off the Decodron (steroid). We opted for the medicate less option and are going to reduce the Decodron by half.. since that is what's causing the sleep issues and tummy aches. And if that doesn't work than will try the other option. We stopped at Subway, as requested, to grab some lunch and Im pretty sure he had 10 mini meltdowns in 10 minutes. Steroids are a double edge sword. I realize he needs them and help him, but holy cow! Talk about mood swings and roid rage. I don't blame him, he had a lot going against him. He was absolutely STARVING. We sat down at the table but he wanted daddy next to him and me across from him (meltdown 1). He didn't know where to put his new racer (meltdown 2). He took a bite of his sandwich and bit his cheek (meltdown 3,4,5). At that point we decided we better go, we were getting plenty of stares, but leaving caused meltdown 6. Meltdown 7 was him wanting to eat at McDonalds and I said, No, that we needed to get home. We were finally able to get him in the car and I was able to convince him in to letting me tare off bites for him. Thank heaven because getting food in his tummy helped. We did stop at McDonalds because he at 4inches of a 6 inch subway a bag of Dorrito's and a chocolate milk and was still hungry. He then ate an entire happy meal. I'm exhausted even typing this. It was seriously insane. Eric was able to make us all laugh... ERIC: "What to you get when you mix a four year old with Decodrn, Temodar, Prevocid, Prilocane, and Sulfamethoxazole? ERIC: "I'll give you a hint. It rhymes with 'Bell on earth'!" Its what we all needed. A good laugh to ease the tension. At 2pm we gave him dose of Decodron at his new dosage of 1MG. And things went downhill from there. He started complaing that his right eye was hurting him. I noticed that is was starting to get "goobies" in it and the eyelid was getting puffy. The right side of his face was getting more droopy and and his breathing started getting shallow and fast, like he had just ran a marathon. He was inconsolable. It breaks your heart when you don't know what to do. We tried cuddling up in my bed and watching a movie, but he cried because it hurt his eye and he couldn't see. Then I tried reading him stories, but that upset him too. He pulled the book maybe 3 inches from his face and started to meltdown because he couldn't see. I'm pretty sure he has lost most if not all his vision in the right eye and its killing me because I know its hurting him. I got him in the bath and sang songs, that calmed him down a bit. I got him in jammies, and called the Dr. on call. At 6:30pm I gave him 1 tsp of Motin was was to call the Dr. in 45 minutes, if he hasn't calmed down to go to the hospital for IV pain meds and an evaluation. After about 30 minutes, he finally fell asleep next to me in my bed. His breathing still labored but not as bad. I called the dr back and opted not to go in... I didn't want to wake him. The kid had not slept in days. But promised to call or bring him in with any changes. I had a mini meltdown of my own while talking to the Doctor. It is so hard to know, do I call or not call, is this normal or not normal. Are they going to think I'm narotic if I'm calling all the time... But it is so scary. This whole thing is so scary. I have never dealt with cancer before. Eric has never dealt with cancer before. We don't know what normal is. Or if there even is one. Let me just say this now, Children's Medical City Oncology is AMAZING. The doctor, whom I have never met before, new all about Atticus and was comforting and reassuring. He told me how sorry he was and to patient with myself. This is new. That they want me to call. That's why there are four of them working round the clock. To answer our quesionts. He said, "If he's got a hangnail... call!" He was really great. To wrap this up (sorry these are so long, it's really therapeutic for me to write it all out. It takes one less stress off me. Writing every detail so that I don't have to worry about forgetting anything), it's 4 am, He had his mega meal at 1am and is asleep HaLleLuJaH! I'm heading to bed. Day 2 starts in 5 hours!! Love, Cindy ALSO.... ThAnK YoU Richardson 2nd ward! Atticus LOVED LOVED LOVED his BIG card and gifts. That was so thoughtful of you! It made his day. He has the card in his bedroom and all the pictures you drew for him in his special book! He is such a lucky boy to have friends like you! We love you...