30 Never Looked So Good
Today was Clare's 30th and final radiation treatment at Seidman Cancer Center. The initial thought of radiation treatment for a 2 year old was so upsetting to me. I could not imagine a toddler going through such a serious treatment. When we walked in the waiting room for our first consultation 2 days after she was diagnosed I noticed that she was the youngest patient by at least 60 years. I couldn't imagine that a little blonde weighing 28 pounds (counting the bow) could handle this treatment for 30 days.
It wasn't easy, but we replaced some parts of our old routine with a new routine. The stress of getting Clare to eat french toast sticks and asking her to put on her shoes 18 times before school was replaced by the stress of distracting her for 4 hours each morning in an effort to have her forget how hungry she was. The stress of the daycare drop off was replaced with the stress of the UH parking garage. (Clare learned how to say "Come on, GUY!" due to a close call on level 3.) The excitement of playing with our toddler friends at school was replaced with new friends, including the best child life specialists, nurses and pet pals we could have ever dreamed of.
Each day became easier for us as a team. We had plenty of "radiation treatment buddies" who came with us to play. (A special thank you to Gaga, Pop Pop, Mo Mo, Nina, Pam, Dena, Jeremy, Krissy, Stacey, Karen and Kathy.) Clare took pride in showing her buddies her special room and all her toys. She also LOVED her nurses. We are so thankful to Beth, Cindy, Nancy, Stephanie, Bianca and Cynthia in the Pediatric Sedation Unit. And we love Zak from Radiation Oncology. And, of course, we are forever grateful to her child life specialists, particularly Jeff, Stephanie and Lisa.
While she was certainly unsure of her button and tubey in the beginning, she grew to love them. Now when the doctor comes in the room to sedate her, she lifts her shirt (or massive layers of glitter and tulle) to show them her tubey. She gladly removes her shoe to put on the pulse ox, and happily hands over her arm to receive a hug from the blood pressure cuff. She even developed a "tell" when the propofol was working. Have you ever heard a 2 year old yell "whoa" a la Joey Lawrence. It's the sweetest thing you ever heard.
As much as I hated the idea of Clare having radiation each day, it became such a wonderful experience. We grew to love all those who were treating Clare. And it was so nice to know that we were doing something to hopefully help shrink or suppress her tumor.
The day before her last treatment we decorated her room, Room 11, with the most ridiculous decorations you could imagine. We found pink and purple crepe paper, shiny flamingos, bright suns and decorated the room with inspirational quotes and balloons. We brought leis and beads to pass out to the staff. It was like a luau/mardi gras mash-up party, which is my new favorite party theme. We wanted Clare to know how proud we were of her for accomplishing this round of radiation treatment.
After her final treatment, the team of radiation technicians allowed us to come back into the treatment room. They showed us the table they placed her on each day; they showed us the mask they put over her face and then snapped to the hard table; they turned on the machine so we understood how it appeared when Clare received her treatment. They even allowed us to take her radiation mask home. We will be getting crafty this weekend, as we have big plans to turn it into a superhero mask.
Today was day 30. And as happy as I should have been, I cried and cried. I was so sad to leave these amazing individuals who loved Clare so much. I was so scared that we didn't know what to do next. We were leaving the place that gave us the most devastating news we ever received, and yet I didn't want to walk out of the doors today.
We celebrated this evening with a small cake and 30 candles. Despite our terrible attempt at changing the lyrics to Happy Birthday again, Clare thinks we just really like to celebrate her birthday.