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Brave CJ looks forward to her new normal life

CJ has a strong love-hate relationship with her radiation mask – she is not quite sure what she is going to do with it yet.
CJ has a strong love-hate relationship with her radiation mask – she is not quite sure what she is going to do with it yet. Erin Smith

"I WAKE up at 7.30 then I get ready for school and walk over to the hospital," Caitlyn Meiklejohn says.

"I run ahead of dad because I know my way because I have been over there so many times.

"I get to school and dad picks me up at lunch time to go to radiation.

"I sit in the waiting room and they have 50 or more

puzzles there and a TV and a kids' area.

"Then I get called in for radiation."

For four whole weeks, this was 11-year old CJ's daily routine.

But last Monday she did it a little differently.

Last Monday CJ did a "dancey prancy" down the halls of the Brisbane Royal Children's Hospital.

She was celebrating what will hopefully be her last ever time facing the "zapper" - or radiation room.

It was her 20th radiation session, which was to make sure the tumour, which was once growing on her pituitary gland, was well and truly gone.

"When I have radiation you get a smell; a really yuck snotty smell," CJ explains.

"And you can see lights when you are in the radiation room.

"They are purple, but when I thought about yellow they were yellow, I could make them whatever colour I wanted.

"My favourite colour is purple, so that is what I chose most of the time.

"Sometimes I was in there for 20 minutes, sometimes 15 and about 10 minutes for the last bit.

"I had to wear my mask to keep my head still and I wasn't allowed to move the rest of my body, the mask is really tight.

"I was really nervous the first week and I came out like a zombie, I didn't even know where I was.

"I was really tired and slept for two and half hours then woke up at 10am the next morning.

"You don't really get used to the smell, but I got used to the tiredness."

CJ says she is just relieved it is over.

For Caitlyn, the worst part was not how sore she was after her brain surgery, or vomiting 30 times in 24 hours after her first bout of chemotherapy.

It was a needle.

"The worst part was the peg GCSF needles," she says.

"It was in my leg and stayed there for about 30 seconds."

CJ's father, Neil Meiklejohn, qualifies CJ's statement.

"It just seems like that to you; it was in there for about 10 seconds," he says.

Caitlyn responded with a smile and a "well, still".

"The needle itself doesn't hurt, but the medicine going in is cold and it hurts.

"It is for my neutrophils to make sure I don't catch a cold."

She says she is just looking forward to starting her "new normal life".

"(I'm looking forward to) not having to worry about if something is going to go wrong when I have chemo or radiation," she says.

"I can just be pretty much stress-free and see my dog Neo, watch my own TV instead of the little box in Ronald McDonald House.

"My life will never be back to the way it was.

"I will still have to have MRIs for the rest of my life.

"But it is back to my new normal."

Well it will be in three to six weeks when CJ gets her central line removed.

The central line was used to deliver her chemo medicine and drugs into her system without the necessity for needles.

"Once I get my central line out I will have to have cannular needles again, which is what I am not looking forward to," CJ says.

"But I am looking forward to swimming again.

"The first thing I will probably do is have a proper shower for once instead of having to have a bath all the time.

"Then I will probably roll around in the backyard, I can't do that (now) 'cause I might pull it out.

"Then I will go swimming.

"Once I get it out my life will be practically normal.

"My new normal," she clarifies again.

CJ has been back at home for eight days now.

"When I got home I gave Neo a hug and mum a hug and I gave everybody a cuddle and (brother) Jacob a handshake," she says.

"Then on Tuesday I moved my room around, even my bed."

CJ is still deciding if her spotted radiation mask will have a place in her rearranged room though.

"I'm going to throw it in the garbage," she says as she pushes it across the table towards her dad.

"Well I won't, but I don't like it.

"I like the spots but I never want to see it again.

"I don't want to throw it out because I just don't want to.

"But I don't want to remember this, it is not a memory, it is a nightmare memory."

Mr Meiklejohn describes it as a badge of honour.

CJ, who had her first week back at school last week, says she is looking forward to showing off her new room to some of her school friends.

"I'm having an end of treatment party," she says.

"And it is going to be a sleepover and I'm inviting three friends.

"I missed my school friends while I was at Ronald McDonald House.

"I'm rarely tired now and I go to school and stay there for the whole day.

"Everyone was feeling my hair.

"They touched it like a million times when I first came back and they keep touching it heaps and heaps of times every day."

On May 23, CJ will go back to the clinic and this is when what Mr Meiklejohn describes as "scanziety" starts.

"The next MRI is on June 13 and basically aside from procedural things, it will be MRIs and possible lumbar punctures and stuff to keep an eye on everything," he says.

"Basically they will be quarterly MRIs for the next couple of years."

As for the tumour, it has shrunk from 8-9mm to back to normal.

"We certainly have it on the ropes if we don't have it beaten," Mr Meiklejohn says.

When CJ is asked if there is any other part of her story she wants to share, there is one thing she wants everyone to know.

She swings around on the chair, a full 360 degrees and with her infectious smile she declares: "I'm a happy chappie".

Topics:  brain tumour chemotherapy health


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