Thursday, December 12, 2013
Today is Thursday, feels like Wednesday, and I'm writing about Tuesday! If it tells you anything about this week, we've one heck of one. Busy, stressful, heartbreaking, fun, and encouraging. Days that start at 7AM and end around 9PM. They've had appointments, meetings, family time, etc. With all Carley, Dan, Daniel and Matthew having going on, I'm not sure how they are functioning. I'm exhausted, not there every day, and in it like they are..
Monday after Radiation, the crew (Carley, Dan, Daniel, Nana Janet, Grampa Dave) showed up at the Dana Farber clinic. They were expecting a long day with radiation, clinic and then chemo. When they showed up in the clinic, they found out their appointment moved to Tuesday. The doctors wanted Daniel to meet with a nutritionist. He had lost 5 pounds in the past month and caused concern for the doctors. He was already a boney little peanut. However, on Tuesday, when we returned to clinic he gained a whole 3 pounds!! We are not sure how because he has been getting sick on the rides in, but he did. The weight gain delayed the day, but that is okay. We'll take it.
Daniel started out on Tuesday with radiation. He slept for a while after and then off to lunch we went. I love walking around the cafe with him. He checks out each counter but always ends up at the salad bar....followed by the pizza counter. After lunch, we were off to the clinic. We played cars, watched the snow and played under the chairs. I set up a bed underneath Carley for him. He is extremely shy, and it was super busy in clinic. Lots of kids, lots of bald heads, lots of masks. He needed a getaway, and that is what we made for him. I laid on the ground with him and played with his Mario characters while he dug through my purse. He was looking for dollar bills so we could hit up the gift shop. He loves it in there! After the meeting with Dr. S, he had blood drawn and then we were off for a quick break. Guess where we went....the gift shop. He walked around, check out everything like he always does. He knows the store like the back of his hand. He picked out some gifts for his cousins...a watermelon head rest for Abby so she can swim, a monkey wine bottle holder for Mae because she loves monkeys, a few others that I can not remember. Finally, he came to a decision on a mustache pen that says "How you doin?" when pushed down to write.
We went back to the clinic to visit with Dr. M. He checked Daniel's strength, eyes, mouth and movement. Daniel did awesome. We have a few concerns: he is nauseous and the back of his head is hurting. Radiation has caused the tumor to swell, which is causing Daniel to be nauseous in the area around the tumor. We knew this was going to happen, for now we are increasing his Zofran dosage(an anti-nausea med) if it cannot control it he will go on steroids. The pain that is on the back of his head is from the radiation "sunburn". His hair around the radiation site has started to fall out. We knew this was going to happen, as well. His hair will only fall out at the radiation site. For the first time, I noticed a significant amount of hair that has already fallen out. I had a hard time looking at it. With my heart being ripped in two, I reminded myself not to check it out when Carley was around because I would get teary eyed. I didn't want to make her nervous.
Daniel's attitude has completely turned around. He was excited to head to the Jimmy Fund Clinic for Chemo. He remembered the fun hallway with the bike lane and the hospital bed that moves up and down. He was able to have the Wii system to himself. He jumped onto the bed and started to play. We shared a room with another little girl. She was adorable, quiet but very curious of Daniel. She looks as if she has been fighting for a while. He looks healthy, colorful, energetic. Daniel asked why the "baby" was looking at him. Five year olds crack me up, yet instantly give me anxiety. They seriously have no filter. We chatted a bit with her and her dad. She was working on arts and crafts. She was a bit shy but wanted me to see her snowman she had made. She finished up before Daniel's Chemo started, so we were alone. We had to wait a while because of Daniel's weight gain. His Chemo dosage had to be changed. The treatment was only an hour long. Daniel did an amazing job once again. We were in the car by 5 and on our way home in rush hour traffic. The Jamaica Way is always a fun ride home in the snow:)
On our journey with Daniel, we have made a few friends in Radiation. One of our friends, Jesse, is not feeling well and has been admitted into the hospital. He is in a lot of pain and could use lots of prayers. Please pray for this warrior and his family. He's been on his journey since he was 3 and is now 7.