Radiation Day 2 and Day 3

RADIATION DAY 2 Yesterday (Wednesday Jan 25th) went much much better than Tuesday. I know it was due to everyones prayers. And we can't thank you enough. First things first... HE SLEPT!!! It was with me and Eric, but who cares. He actually slept. Not perfect, but pretty darn good. It was a much much needed nights rest. Sleep is a beautiful thing. He was not too happy about having to wait to eat breakfast but, fingers crossed he will get use to that soon. Waiting his turn to go back! When it was his turn, Eric took him to the radiation room. Atticus said, "Im not afraid of that!" referring to the big radiation machine, and two seconds later was out. While he was getting his treatment I made a ton of phone calls, insurance- both medical and auto, hospital billing, made appointments, canceled appointments... you get the idea. It was a really productive 35 minutes. They came and got us to be with Atticus and thank heaven it wasn't nearly as bad as yesterday. He was still feisty but not out of control. He did NOT want to lay down on the bed, so he was sitting up 99.99% asleep with Eric and I taking turns supporting his head. In approximately two weeks the radiation will start affecting his skin; looking similar to a sun burn, so they gave me cream to use. The radiation goes in from angles so he will have a few "burn" locations on his head and his ears. Hopefully not too much on his face. After he was awake enough to leave, we went upstairs to see the Oncologist team. We met with Dr. Goldman- also amazing, he was the on-call Dr. I talked to Tuesday night. He gave Atticus a thorough check.. As, mentioned yesterday, Atticus' vision went downhill as well as his mouth function. He can no longer pucker his lips. So when he tries to suck through a straw, the liquid comes out on the right side. Anyway, Dr. G. checked out his eyes, reflexes, yada yada. Their concern is that there may be too much swelling in his brain and may need to have surgery to put a shunt in (basically a straw in his head). They don't feel like he needs it now, but it is something we need to keep a close watch on. Dr. Goldman spoke with the other Oncologist and decided that we need to go back to the higher dose of Decodron, that with Atticus' symptoms coming back so quickly with only one dose being lowered, it's clear he's not ready. So he now takes, 2 mg twice a day and 1 mg once a day. I packed him a lunch to eat while at the doctors, but he refused to eat it, then I finally put two and two together. For some reason Atticus got it stuck in is head that he can't eat at the doctor's. So I told him a little white lie, that I "had to use the bathroom", but really went and asked the nurse if she could let him know that it's ok to eat at the office and that it would help his tummy feel better. It worked. He started eating and it made a HUGE difference in our entire day. The day went soooooo much better than Tuesday. He still complained about his vision in his right eye and can't pucker his lips but he was the happiest he's been since diagnosis. It was so so nice! It gave Eric and I hope. Hope that we will get him back for a period of time. It was such a blessing. Such an amazing day. Proof of our HaPpY hApPy DaY... Thank you to everyone he prayed for sleep. Thank you to everyone who prayed for us to have a better day. Thank you to everyone who prayed to give Eric and I strength. I cannot express how much it means to me. Last night was his first Chemo treatment. Can I just say how much I love my husband. I love him. Like, love love love. He has been so good to keep me in check but more importantly keep me laughing. He took the seriousness of preparing Atticus' Chemotherapy and threw it out the window, we were laughing at each other and had one of those, "If we have to be in this crappy situation, we wouldn't choose anyone else but each other." We prepared the chemo exactly as instructed, and mixed it with applesauce. We had to wake him (it was 10pm, it has to b given on an empty stomach... obviously we need to do some med. rescheduling), he did awesome. We didn't tell him is was medicine, but told him that Dr. Lenarsky wants him to eat applesauce every night to stay healthy. After the first few bites he said, "This applesauce is yucky. It tastes like medicine." But that was it. 1 down 41 to go. The "Chemo" station... It was his 2nd day being kept "accessed" and did really really well. He's extra cautious but other than that he's not had any other complaints. He's amazing. Such a good boy. I love him so much. He is a big BIG fan of daddy right now, which of course I love, but am jealous too! Here a some funny/cute things he has done and said lately, * "My tummy say's, "Grrr, Im ready for macaroni and Grrr, I do NOT want toast!" * "Mom, I don't want any of those yummy carrots!" *He picked out my outfit the other day and said I was beautiful. * There is a valentine Christmas tree in the hospital's pharmacy and Atticus told Eric that Santa would say, "ho ho ho! What a beautiful tree!" in his best 'santa' voice! *The other night while bathing him he wanted to make a grocery list, he asked me to get a pen and paper. This is what he wanted on his list... meat, cheese, razor, eggs, bacon and sausage, baby food for Isaac, a few cool shirts, 2 boxes of eggs, 1 pack of tomatoes, spaghetti, and that's it." *"Isaac Hinckley Hansen is a wiggly little boy!" * The nurse asked him if he needed anything, "I probably need my wallet, and keys and some money!" Nothin can keep this kid down! RADIATION DAY 3 This morning went the same as yesterday. Atticus was upset that he couldn't eat but nothing too crazy. We had to wait a long time, the Anethesiologist was running behind, so poor Atticus was more than ready to go back. We met another family today whose daughter was diagnosed with DIPG also. Crazy right? It's so rare, but a 4 year old and 3 year old, get diagnosed within days of each other. After 40 minutes the RN came for Atticus, he wanted daddy to take him back again, I'll be honest, it hurt my heart. Im a baby I know. I just want to be there every step of the way. But I am of course glad he and daddy get time too! I am a "time" hog:). We didn't have to see the onclogist today (last night was the first night I didn't have to call the on-call doctor! I was quite proud of myself). So as soon as he woke up from sedation, which was about the same as yesterday, feisty but not out of control, we got to go home. I wish he would eat right away. I don't know what his deal is with wanting to wait until we get home. But he does. He waits til we get home and by that point he is past the point of recovery so it takes another 15-20 minutes to calm him down and convince him to eat. But after that, we had a great day. Well the boys did. Today was hard for me. I was pretty down today. Atticus is on a big daddy kick, and Im glad, but it hurs, he's been a little mean to me. I know that boys need their daddy's, but mommy's need to be mommy's. I just want to hug and kiss and squeeze him all day long (mabye that's why he likes daddy so much, he doesn't smother him !!). Isaac wanted nothing to do with me either. I feel like since I lost my milk he couldn't care less. So after we got home from the hospital, Isaac wanted Daddy, Atticus wanted Daddy, I went to my room shut the door and cried for two hours. I totally had a pitty party. I feel like Im entilted to one every now and again right? A teary eye mamma with her two cute boys! Another treatent under out belt! We are on our way. Thanks again for everyone's love and support. Im going to try really really hard to pick myself up by my boot straps and put a smile on my face! Update on Chunk... He is seriously the best baby. He difinitely senses the changes going on but is being a trooper. He likes to wave. Is army crawling everywhere, loves to be held (great arm work out), and loves to eat! Still not fan of milk, in any form. He loves chocolate... at least the chocolate boxes! His new "face" Cracks us up every time.