Julia and I went to clinic Thursday morning to check her counts. The hope was she would be able to have a port placed on Friday, if her counts allowed, but Julia’s ANC was only 10. This is the lowest it has ever been and an indicator that she would not be able to fight off infection, so port placement would have to wait.
With Julia’s counts being so low, she would most likely not begin her next round of chemo on Monday. We would come back to clinic Monday, check counts and if they were still too low for chemo, plan to have Julia’s port placed Friday. Until then, we needed to keep Julia away from anyone who was sick and have a quiet weekend close to home.
“I don’t want to lose my hair again – not a third time!” The tears started Friday morning after Julia dressed and saw the large amount of hair that came out into the comb. “Can’t they come up with a drug without this side effect?”
“Well Julia, when you grow up, maybe you will find a drug that doesn’t have that side effect.”
“I guess so Mom, but it still makes me sad.”
“It makes me sad too, Julia.”
The weekend brought quiet play and the thinning of Julia’s hair. Julia’s good friend Jake passed the “no sickness test” and come over on Saturday for a play date. They played some games and watched a movie. It was good to see Julia smiling again and just being a kid. We all went over to Jake’s house that night to dye Easter eggs, but Julia quickly got tired, so the visit was short lived. Dyed eggs in hand, we went home and Julia quickly fell asleep.
Julia slept late on Sunday morning, most likely from the extra activity the day before and her very low counts. It is so hard to see her feeling so tired. She was especially pensive, asking so many questions.
“What makes your hair fall out?” “Will it all fall out this time?” “Will I need another IV this week?” “If I do, will it make my hair fall out faster?”
Sunday afternoon, Julia decided she needed to get her hair cut. “I know it’s taken some time to grow my hair long, but I don’t like it falling out and being all over my clothes and falling in my food. Can I get it cut short?” “Of course you can, if that is what you want to do.”
I know Julia was thinking a lot about being sick again. When we lay down together to go to sleep, the questions started again.
“I don’t want to get another tubey. Do they need to do that?” I explained that if she didn’t have a port, they would need to continue to give her the medicine through an IV and the veins in her arms are getting very tired and not cooperating as much as they used to, making it harder to get blood or set and IV in “just one poke”.
“What about the fluid and the drain in my side?” I told Julia that if they tried to drain her lung next week and nothing came out, they may take out the drain when they place the port. “That will be good; this tube can hurt some times.”
“Will this chemo help me fight the cancer?” “That’s what we hope Julia”
“I’m scared too, Julia”.
“We can be scared together, okay Mom?”
“Yep, we can be scared together. But you know what – you are my best and bravest girl.”
“I’m your only girl, Mom”.
“But you’re still the best and bravest. Sweet dreams.”
Julia quickly fell asleep and woke this morning with a new energy.
We got to clinic and Julia presented Dr. Julie with a figurine that she had painted the day before. Julia received a kit with different figures to decorate – this one she painted with a large letter “S” on its shirt. It had a lanyard on the top of the big square head, so it could be attached to a book bag. Julia was so happy to give it to Dr. Julie.
“This is Super Kid” Julia said proudly, “Super Kid fights Cancer. It is for you.”
“My hair is falling out. Its okay, it will grow back. I’ve been through this before.”
And there she sat, my best and bravest girl.
Dr. Julie examined Julia and listened to her lungs – thumbs up, there are breath sounds in the bottom of her lung!
There sat Julia, my best and bravest girl… my “Super Kid”.