Happy Monday!! Sorry I have been MIA this weekend! It has been a busy one filled with working, celebrating the worlds best dad and a lacrosse tournament. Before we get into the next part of my story, I wanted to take a second to thank my readers. Never in my WILDEST dreams did I expect all of the love and support I received. I cannot believe how many people took time out of their lives to look at my blog, and I was elated to 50% of you come back for more. For the first week, I couldn’t ask for more. So, I thank you from the bottom of my heart!
April 13, 2006
My entire family was headed down to CHOP. Dad was going to ask my doctor a million questions, mom was going to learn how to give me chemo and my brothers were along for the ride. This time I felt more calm. I knew what to expect. I knew where the parking garage was, how to get to the waiting room and what my doctor looked like.
When we got there Mom and I showed the boys the way. When we got off the elevator and walked down the long hall towards the waiting room. This time there were no patients, no kids in wheelchairs, no babies crying. It was silent. The nurse greeted us and walked us past the hall where the exam rooms were. She walked us through two huge double doors where all of the doctors had offices. Because there were five of us, she sat us at a table in the hall and went to tell my doctor we were waiting.
Dr. Sherry, this time wearing a Veggietales tie, came out of his office to meet us at the table. He introduced himself to my dad and the boys. The boys sat on the floor listening to their Spongebob Walkmen while the three adults and I sat at the table.. Dad pulled the list of questions he typed (he didn’t have time to make a PowerPoint) out of his folder and handed a copy and a pen to each of us. Dad, being the businessman he is, expected a game plan, an execution strategy and a drop dead date for my cure.
Every question my Dad had, my doctor couldn’t answer. Unlike business, medicine is a game guess and check. We try one medication, one treatment, at a time and adjust as we go. There was no cure, only symptom management. My doctor was able to give statics, but no real answers. He had no way of knowing how I would respond to the typical treatment. Dad was becoming more frustrated, but luckily for Dr. Sherry, we had another appointment to get to.
Two days before, in the blur that was my diagnosis day, we agreed that I would be in a study. They were looking at the DNA of children with arthritis to isolate the gene that is altered. I had to have blood drawn before my first dose of Methotrexate. A representative from the study met us outside the giant doors and led us through the halls of the massive hospital. We took countless twist and turns down hallways, two different elevators, and walked through dozens of doors to get to the room where they would take my blood. Mom and I went in to a room with oversized lounge chairs and Princess stickers on the wall. An Audrey Hepburn movie was on a tiny TV. Mom and I filled out paperwork. I signed my name more times than I could count. They took the handful of tube of my blood they needed and we walked the ten miles back to my doctors office, this time, to an exam room.
A nurse I have never seen before came in teach mom, dad and I to give me shots. She handed me a circle with tan plastic ‘skin’ to practice on. She watch as I drew back fake medicine and injected it into the ‘skin’. Then it was mom’s turn. After a few practice tries, the nurse demonstrated on me, with real medicine. My first dose of chemo. The poison burned as she pushed it into my skin. The nurse put a bandaid on the barely-there mark on my arm, smiled and asked if we had any questions. She reminded us that no pregnant women could be in the room where we kept the medication, how to dispose of the needles and sent us on our way.
After being poked and prodded, mom and dad said the boys and I could have a treat, McDonald’s. We were rarely aloud to have it so we jumped at the opportunity. After a quick lunch, we found our way back to the parking garage to being the drive home.
Several hours later reality hit. I was on chemo. My mouth was full of sores. I was throwing up uncontrollably and the pain was almost unbearable. My stomach felt like it was being torn apart and there was nothing I could do to stop it. This was my treatment. This was supposed to make it all better. I remember laying in my bed sobbing. My mom was in my bed with me, rubbing my hair. That was the first time I ever saw my mom cry. That was the first time my disease was real. That was the night my innocences was lost…the world was no longer unicorns and rainbows. There was pain and disease and heartbreak. I asked my mom “Why me?” and she couldn’t answer. There was and is no answer. No one is immune to life and this is part of it. I cried myself to sleep that night.
The next morning I learned the real definition of exhaustion. Nothing feels like the morning after your first dose of chemo. I stayed in bed all day because my body was too tired to move. I spent most of the day crying and sleeping. I didn’t want to eat. I didn’t want to talk to anyone. I wanted to be alone.
My mom let me cry it out until the following morning. On the second day, she came in my room, opened my curtains and told me to take a shower and get out of bed. I didn’t have to leave the house but I wasn’t allowed to sit in a dark room and feel sorry for myself. This was my new life and I could either embrace it or become a victim to it, and one of those wasn’t an option.
That was a defining moment in my life. Mom brought me back to reality and helped me become a fighter. I couldn’t change my situation, but I could change the way I handled it. I learned, at twelve years old, that it isn’t the things that happen to you that define you. It is how you react, learn and recover. I know now, chemo wasn’t nearly my biggest challenge or the hardest thing I would go through. Chemo taught me to be strong when I was weak and that everything (good and bad) is temporary.
Alright girls…I have to go to the gym and make lunch before work. I will have a lot of good stuff on the blog for you this week. More recipes, work outs and OCD organization tips. Don’t forget to follow me on social media so you don’t miss a thing!
xoxo,
K
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