January 17-19

TUESDAY Jan 17th: We got to go home. It was a roller coaster day. Full of lots of emotions. Eric and I woke up pretty somber and down. Then were excited to be going home. Then overwhelmed as we were bombarded with discharge information... do this, don't do that, meds here, meds there, look for this, call for that, dress his port, make this appointment. Thankfully we always had amazing nurses but it was still so overwhelming. When we got home Grandma and Stacie had a surprise for him. We asked them to move his bedroom downstairs so he is closer to us. Not only did they do that (with the help of Grandpa) but totally redecorated it. He has the cutest sports bedding and accessories. He was really excited. Some amazing friends of mine came to the house before we got home and hung balloons and a welcome home sign. And we all know how Atticus feels about balloons. LOVES them! So it started of good but it changed pretty quickly. It was probably the most "emotionally all over the place" we have seen him. Lots of fits, yelling, and tears. It was a huge slap in the face. I cried to Eric, the realization of how hard this is really going to be. WAtching our son transition. It breaks your heart. More than anything else could. As parents our sole purpose in life is to raise and protect our children. And we can't. We can comfort him as best be can. Love him. But I cannot take the pain away. I can't make him see better, or walk better. And it's the worst feeling in the world. WEDNESDAY Jan 18th: He woke up (happy) yelling from his bedroom! "Hellllooooo!" For a split second we forgot reality. We had a good morning. He was happy and we played cars for a bit, ate breakfast (he helped Stacie make german pancakes). His appetite wasn't very big which concerned me a little. Steroids really increase your appetite and he was eating A TON at the hospital but didn't eat much breakfast. From there he went down hill. He was very lethargic. I couldn't get him to eat or drink during that day. Was falling asleep. It was the worst we have seen him. I called Dr. Lenarsky (oncologist) and they told us to bring him in and to pack a bag in case we needed to stay overnight. It was the first time I had to put the numbing cream on his port. He did good considering it was our first. He flipped out more about the dressing I had to put over it than the actually cream. Once at the doctors, diarrhea started. He just want not feeling good. The entire day he complained about his tummy hurting. Not his "PORK" his tummy. (WE LOVE THIS...He calls his Port, his "PORK!"). They took him back got and got vitals. Dr. Lenarsky (maybe the most amazing DR. in the world) took him to a secret room where he got to pick out a racer. The "accessed" his port, meaning they stuck a needle in it to draw blood (another first, and that is why I put the cream on before we left, to numb it). The nurse explained that the cream mommy put on is magic cream so that he won't feel the poke). Atticus was so brave. He was really really scared, but held so still and didn't even cry. Just sat in my lap and held on tight. I am SO grateful for the port. I know it will take time for Atticus to get use to it being accessed but it prevents us from having to start IV's all the time. And really, although its scary for him, it does not hurt if the cream is on. Labs came back ok. So they think his behavior is due to the steroids. A side effect can be tummy trouble. We got to choose whether we wanted to be hospitalized or go home. We decided to go home, with strict instructions of what to look for. On the way home he wanted strawberries so we stopped at Target. Once home he ate a few of those a couple raspberries and maybe 3 bites of rice but that was it. Poor guy had diarrhea at least 5 more times. THURSDAY 19th: We had our first appointment with Dr. Munoz (Radiologist). We first met with the financial/insurance people, which can I just say is a huge blessing... yes we have a high deductible, but we have an amazing insurance policy. Once we have met our high deductible, we are covered at 100%. 100%. I totally cried when they told us that. I thought for sure we would have a cap and knew we already have a hefty bill. Wendy (our Radiology RN) got his vitals then we met with Dr. Munoz. Stacie cam with us and took Atticus to the waiting room so we could discuss the not so fun details. We didn't hear anything we haven't heard before. But it still made us cry. They accessed his port and once the anetheaseolisgt got there they sedated him to get an MRI and CAT scan. It was MUCH better than I had anticipated. They inserted the sedative while he was in my arms. So he didn't know. With the MRI and CAT scan they make his mask. It look like fish net but hard. We opted not to show Atticus, for obvious reasons. So this is how the radiation will work for our appointments... Vitals, access port and administer a sleepy med, I'll carry him to the Radiation room where the Anethes. will administer the actual sedative. I go our room and wait. Everything is computerized. The computer uses a 3-dimensional picture of the tumor and shapes the radiation beams to fit the tumor. This allows a high dose of radiation to reach the tumor and causing less damage to normal tissue in and around the tumor. It is painless and just like having an x-ray done. Once finished the bring him back to our room and we help him wake up. This particular appointment took 3 hours but it will normally take and hour to an hour and a half. The percentage rate of him becoming symptom free is really high. The amount of time it will last us unknown. When he was awake and able to drink juice, we took him to McDonald's to play. He had not eaten since 7pm Wednesday and it was 12:30pm Thursday, so the poor guy was absolutely starving. He at a cheese burger, chicken nuggets, fries, and chocolate milk. Happy happy boy! Then Eric and I played with him in the playset (Im surprised our weight didn't break it!). We had our appointment with Dr. Lenarsky at one, which were late for... it was such a beautiful day and Atticus was having so much fun playing, we didn't care. Dr. Lenarsky examined him (we didn't have to do labs since they were done yesterday. We had Stacie take Atticus to the playroom and Eric and I were taught how to administer the Chemo. It's no joke. His chemo is Temodar. Its taken every day at the same time. We have to wear gloves, a mask, and goggles. The work surface needs be covered with an impermeable and disposable mat... place apple sauce in disposable container, put on gloves, mask and goggles, open each capsule (3 for him) and place powder in medicine cup. Add to apple sauce. Anything that comes in to contact with the medicine must be disposable. Once medicine is taken throw away in the biohazard bag: medicine cup, container med was mixed in, work surface cover, gloves, mask... He will take it every day for 42 days then does cycles. 28 days OFF 5 days ON. Ten times. They introduces us to "Beads of Courage." It is a program designed to honor the challenging journey our kids take while receiving care for their cancer. The Beads of Courage symbolize their courage and honors their milestones. We were given a string with beads that spell out his name. Then he was given colorful beads that represent all that he has done and overcome. Each color or specific type of beads represents a specific thing. He will get a BLACK bead every time he is poked. A BLUE bead every time he goes to the Dr. Light green for MRI's and CT's, Yellow for hospital stays. But the coolest according to him, are the glow in the darks ones from Radiology! He was really excited about this. It was almost 3 by the time we were heading home. Eric and I were so relieved. It went SO much better than we thought it would which gave us hope. Our biggest concern was coming out of sedation and he did great. It took awhile but he wasn't nearly as upset and irritable has he had been the other times he was sedated! It was such a relief for us. He gets his first treatment Tuesday January 24th. Our appointment time is 9:30am Monday - Friday for six weeks. He gets 30 treatments. The bummer is, since he has to be sedated each time and can't have anything to eat or drink. So he won't get to eat breakfast until 10:45-11am. But will work through that! Again, thank you! Thank you for commenting, for texting, for leaving messages. You will never know how much it strengthens me. Im sorry I don't always text back or call back. Its just too painful and exhausting. Please know, I ALWAYS read the messages and ALWAYS listen to the voice messages and it helps carry me throughout the day. We are lucky. Lucky to have Atticus. Lucky to have each other. XOXOXO