My sister has a brain tumour.

THEY ARE THE words of five-year-old Cian as he looks on adoringly at his little sister.

Sylvie Gray was diagnosed when she was just eight months old.

Her mother Tana told TheJournal.ie, “When she was first diagnosed she was a typical baby who was just a bit thin, but she was doing everything developmentally she was supposed to be doing.”

“We had no idea what we were in for because she was diagnosed first – and then became very symptomatic.

Within two to three months she turned into a ghost, she slept, she got sick a lot, she made no noise whatsoever and in that period she lost her sight.

“I try not to think of that time because it’s a little painful. I think about the time when she was most symptomatic and how much she has come from there.

“It’s been such a rewarding process because she got so sick we thought we had lost her.”

Walking on the edge

Sylvie has been on chemotherapy since November 2013 and has tolerated it very well but Tana says that every so often “she’ll have a week where she’s really sleepy and I think that’s the chemo”.

She is peg fed and gets sick at least once a day, usually after her third feed of the day.

Tana said Sylvie’s big brother Cian has an idea what is going on. “I’ve explained to him that it will take longer for Sylvie to do things because she has a brain tumour.

It will take longer for her to walk and talk …in reality we don’t know if those things will happen. I hope they will, I think they will but I also really don’t know.

“We can’t predict how her treatment will go and if she’ll need surgery soon or way down the line.

“We also recognise that we can’t really control our lives that much and it’s pretty much dictated by what’s going on with Sylvie.

Tana with Sylvie and Cian

We always feel like we’re walking on the edge of a cliff and if something were to happen with her it could throw everything off course.

Making memories 

LauraLynn has been providing nursing support to Sylvie since January of last year. After being diagnosed, Sylvie wasn’t fit to be taken out and Tana said it had made her housebound without realising it.

Tana says the home care gives Sylvie and her brother a great chance to play together and make memories.

It’s much more than just babysitting, it’s a mini therapy.

Cian is very affectionate towards his sister and adds in, “My sister shares her toys. She shares her toys and I share my toys.”

Tana said, “At the beginning they were looking after Sylvie and she was sleeping, being fed food and that was about it.

“Now that Sylvie is much more healthy and alert and energetic, when the nurse comes from Laura Lynn she brings crafts to do and sensory stimulation toys so it’s almost like a therapeutic experience for her.

“And the at home service is great because she is much more comfortable here. It allows kids to stay where they are most comfortable.”

Looking ahead

Sylvie had her last chemo session on Thursday.

“I hope is that she’ll get more energy and that she’ll have more energy to progress a bit more with her development,” Tana said after.

“I think there will probably be periods where we do have major upset where she becomes sick again and hopefully we’ll come back from that. But if she were to continue to do well- it’s a very manageable life, especially compared to what a lot of parents have to do.

“The fact that she’s developmentally delayed and blind. It’s not that bad, it’s all very manageable.

“Really the worst case scenario that we saw from the outset is that we would have a long and protracted descent towards death and that we could see it coming but it would take forever to happen – and it would, therefore, be like pain drawn out.

Even if she doesn’t live a very long time, we are getting such good quality time with her. And her brother is getting such good quality time with her, he will always remember that he has a sister, and that’s so important so the effort that has gone into keeping her alive and helping her get well, the reward is just in her and that it has worked is amazing to me.

“It still amazes me to look at pictures from her a year ago when she was so thin or when she couldn’t smile… and now I look at her and she’s so robust. There was a time when she was so delicate.

So it’s been it’s own reward, it’s been intense but it’s totally worth it and I can say that even if it doesn’t end the way we want it to, it will have been worth it.

Children’s Hospice Week takes place from the May 11 – 15. LauraLynn is Ireland’s only children’s hospice providing paediatric palliative care in Ireland. For more information click here.