Thursday, November 14, 2013

God only created so many perfect heads, the rest he covered with hair

Today was day 5 of radiation, and it was my turn to drive in and spend the day with Daniel. I arrived at my parents house around 8:30 and helped Carley get Daniel ready to leave. This was my first morning with him since he started radiation and I'll be honest, it was difficult. He is angry, hungry and taking it all out on his mom, which is heartbreaking to see. She tries to make him happy with rewards and will do anything to just get him in the car. Avoiding the kitchen is impossible! No one eats or drinks anything until he is under and receiving his radiation.

Once we were in the car and moving he was fine. He played with my Ipad, and then his Nintendo DS. He was entertained the entire ride. We arrived at Brigham and Women's hospital, parked the car (a cool 27 degrees outside) and went down to the bottom floor to radiation. He showed me the playroom and we played with most of the toys. We built a castle out of blocks while he was given some medicine for nausea through his port. He covered his nose because he hates the smell of the alcohol wipe. We painted with dot paints and took turns smelling markers.  Little does he know I was cheating because I have no sense of smell:) Just as we started a game of tic tac toe they called his name. He gave me a huge and told me to hold off on our game until he came back. Carley walked him down the hall to the radiation room, he cried for a minute until he fell asleep.

I looked around the playroom at all the art work on the walls from the other patients. It broke my heart to see the ages of the kids. Why are kids getting cancer? Why do they have to go through these horrible treatments? Poison being pumped into their little bodies to kill poisonous blood cells. It infuriates me. These kids have such a positive outlook on life. They are smiling, playing, making new friends and having their hearts broken...a blog for another day. As I walked around the room I found this picture with the words, "God only created so many perfect heads, the rest he covered with hair."
It gave me chills, but put a smile on my face. It was exactly what I needed at that moment.

While he was in the room we chatted with the life coach specialist. We asked what is so scary about the room, how long the treatments last and why he goes to sleep. Having an 11 AM appointment is difficult for a hungry 5-year-old. He's not allowed to eat after midnight and by the time we get in there he is starving. He has to go to sleep to hold his head in place while wearing a scary looking mask. There are doctors, nurses,  and specialist in the room looking at him while he falls asleep. Talk about intimidating a 5-year-old, however, they are there to make sure he is safe. Other kids that are receiving treatments can stay still, however they don't have a scary mask holding them in place and are in for treatments for only 15 minutes. I can barely sit still for 5 minutes let alone in a machine for 30+ minutes. Sleep is the best way to target this tumor.

The nurse let us know he was done and that he would be wheeled by any second. We gathered our belongings and went to recovery. He was trying to get off the bed, but he was still asleep and the nurses needed to get his vitals before he could get in the carriage. His carriage is his safe place. Once they said he could be moved, we put him in the carriage and I wheeled him around to help calm him down. We went back the playroom area for a quick snack while he woke up. After a few bites of food he asked if we could finish our game of tic tac toe.  5-year-olds don't forget anything!

After he ate his cereal, we walked over to the Yawkey Center for Clinic. My emotions were all over the place, wanting to cry my eyes out walking into the radiation room, seeing how comforting all the toys were to Daniel, to walking back down the hall to Dana Farber.  How does my baby sister do this everyday?  When does she get to breakdown and cry?  How is she feeling inside?  I can't imagine how broken up she is.  I know she'll talk when she's ready, I know she'll share on here someday.   I wish I could hug her all day and tell her it's going to be okay.  She has so many people around her holding her up and praying for them daily.

Clinic day always falls on a Wednesday, at every hospital, I remember from my days at Shriner's. We walked into the crowded waiting room, filled with lots of kids with bald heads and huge smiles. Overwhelmed, Daniel jumped out of the carriage and ran back to the elevators and pressed the down button just as one of the doors opened and jumped into the elevator. Good thing I was right behind him to get him off. Only problem with picking him up, you CAN'T because of his port. I had to scoop him up like a baby.  After a few minutes he felt comfortable walking into the crowd and found a toy to play with until the nurse called his name. He was brave getting his blood drawn via the port. Then we met with the team of doctors. They checked his strength, watched him play and checked in his mouth. The doctor told him he had a blue tongue, and of course like any other 5-year-old he tried to look at his tongue until he decided I needed to take a picture so he could see it.
We went over the next steps in his treatment. He starts Chemotherapy on November 25th and will have it every two weeks. He should not get sick from the Chemo and will not lose his hair.

After his appointment we had a little pizza party in the cafĂ© before heading home.  As we walked back to the car over the hospital connectors, Daniel sat down in one of the hallways.  I knew exactly what he was thinking...slippery floor, slanted hallway, maybe I can slide down to the other side.  Everyone in the hall burst out in laughter because they all thought the same thing.  Come on Dana Farber, you make things fun for sick kids, why not make a hallway made of slides?

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