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Harper’s Story

5 year old Harper from Mayo was diagnosed with cancer when she was just 2 years old. This Giving Tuesday, her family are sharing their story to help raise awareness of the impact of a childhood cancer diagnosis.

We’ve always said Harper is unique. I know everyone says that about their child, but Harper has always had a wonderful, vibrant personality. She’s a little ball of energy.

In December 2020, we noticed a very strange little bruise on her cheekbone. By the end of December it hadn’t gone away and it was growing in size. We brought her to the doctor a couple of times and eventually we were told to go to A&E. Harper was put straight through to paeds where they did tests and checked her bloods. On the 24th February 2021 they did a biopsy on the mass on her face and we went home and were told to wait.

You never think you’re going to hear those dreadful words that we heard on Thursday 25th February ‘21. I had Harper and her older sister Amelia at the playground when I got the call from the dermatology consultant who told me they had found malignant cells in her mass. I just remember feeling like I was absolutely stunned and my whole body went into complete shock but I had to pull myself together because I had the two children with me. From that moment, we went into survival mode. We didn’t know what to think because we didn’t know what was going to happen. All I knew was I had to keep things normal for the kids. That’s your gut instinct.

That was the last week of February and in March 2021 Harper and I left to go to Crumlin. It was so soul crushing because I would never have gone anywhere without both kids and all of a sudden I was leaving my other 5 year old daughter for a week. I explained that Harper was going to the best place to get the best medicine and Amelia seemed to accept that. The creches reopened after lockdown at this time and we organised for Amelia to go back because we wanted to get her back into a normal routine. I was delighted for her to see her friends again. I just wanted her to think about playing and having fun.

At the beginning of Harper’s treatment, chemo was very heavy. It’s intense and some weeks she would  be getting a few rounds of chemo. Harper was also prescribed a heavy dose of steroids for 6 weeks. This changed her beautiful little personality. There were times she wouldn’t move, speak or look at anybody and she lost the power of her legs. There were other times when she would be out of control with sheer frustration and intense anger. She had no control over these emotions. Looking back now we laugh, because she was only 2 and we would have been afraid of her moods but it was so difficult to see this change in her. It was absolutely heart-breaking. We kept telling ourselves it was worth it and unfortunately she had to go through it. We kept that at the front of our minds so that we could get through this very intense phase.

That was a very difficult period.

To feel so helpless and not being able to help your child was the worst feeling

 

She didn’t want to be held and so I felt like she was dealing with it on her own and that used to break our hearts.

Our other daughter, Amelia was so brave through it all. She was almost being the reassuring one saying, “I’ll be ok mummy.” But that’s a lot to expect from a young child. They shouldn’t have to say those words because it’s our job to be fine and our job to protect them from all that is scary in the world and suddenly our world had become so very scary.

One year later, in April ’22 during Harper’s maintenance treatment, we had a short break at Daisy Lodge. We got there on a Friday evening and it was warm, sunny with blue skies. When we saw this centre in the setting of the mountains it was breathtaking. In Daisy Lodge, the environment was so safe. Amelia made friends with other children on the first evening and played safely outside for a couple of hours and this sense of freedom and normality was just what we needed as a family.

It takes a unique person to work in Daisy Lodge and the staff were so lovely. They were so inclusive of all children and they were made to feel very special for the weekend. Amelia had made a friend and the two girls went to the beauty salon on Saturday and got their hair and nails done. The hairdressers that were there made such a big deal of them. Amelia and her buddy were so happy because this was just normal childhood.

Unfortunately, on the Saturday poor Harper became ill and had to stay in bed for a lot of the day and so myself and my husband took turns spending time with Harper and Amelia. We took care of Harper but we wanted Amelia to live her life and have fun this weekend too. We needed Amelia to have positive experiences and enjoy herself without feeling guilty or worried or sad.

Harper felt better on Saturday evening and she said she wanted to get out of her bed and have fun. She did a lot of activities. They did a light show and family pictures.

There’s nothing you couldn’t love about Daisy Lodge

 

There’s a sense of calm and as much as you are able, you feel like you can leave illness aside for those couple of days. It’s therapeutic to go out onto the decking area and have the mountains there in front of you. It’s good for the soul. I got a massage in the therapy rooms and I actually fell asleep during it.

Unless you’ve been in this situation, you can never understand how important it would be to have a second Daisy Lodge. For us, packing for Daisy Lodge had to include Harper’s supplementary feeds, feeding tube, anti-sickness medicine, chemo and morphine.  We would have travelled to the end of the earth for our experience but it will be great to have a second centre in Cong, which is more accessible for so many other families who are or were in the same situation as ours.

Harper had her last treatment at the end of July ’23 and had a 3 month check-up in October and got a wonderful report. We are so happy and grateful that our little girl is now in full remission and we are grateful every single day and will never take her good health for granted.

Now the two girls will sit and talk about her treatment and her cancer and laugh about their memories. Harper will laugh about some of the things she did when she was on steroids. She says “Remember when I used to…….” I think it’s amazing that she’s able to look back and talk about it. I think her vibrant personality really helped with this.

We will always remember our special time in Daisy Lodge and please God other families will soon experience this wonderful place but closer to home.

Thank you Daisy Lodge.

From Harper and family

You can help us be there for more children like Harper this Giving Tuesday. Donate to our services and help ensure no child has to face cancer alone.