Katie MacRae was diagnosed with cancer when she was only 16 years of age.

Katie’s mum Nanette explains the background to Katie’s journey and challenges she faced going to her prom in 2018.

Katie looking gorgeous on her prom night.

“Katie was diagnosed suddenly in September 2017, after showing no symptoms, with a rare form of neuro-endocrine cancer. The cancer was found in her liver, pancreas, spine and lung.
We were told that as the cancer was so rare and so widespread, the doctors were not sure if chemotherapy would work, so they would scan after 2 rounds of chemo. The second dose had to be reduced in strength as it made her so so ill that she ended up in hospital for about 6 weeks. She didn’t eat for about 12 weeks and lost so much weight. They insisted on putting in an NG tube to give her feeds which she hated. They managed to get her on a different anti-sickness drug and after this she seemed to pick up a bit and start to eat. Slowly her assertiveness or “Katieness” as we call it, began to come back and she fought her case to take out the NG tube.
Katie eventually underwent 6 rounds of chemotherapy.

After the last chemo in February 2018, she began to gain her strength and began to regain her appetite once again. It was only really at Easter time that she was strong enough to look at prom dresses. We had discussed prom before this but she felt that she just wasn’t strong enough to get her head round going shopping and she was so thin that I had no idea what size she would be by the time the prom came as I knew she needed to put some weight back on.
Thankfully the tumours reduced in size but left her with compression fractures in her spine. The cancer was now gone from her lungs but the doctors weren’t sure if the mass they can see on the scans is now dead cells or active cancer cells so Katie would have to have further scans in June. The Christie clinicians have shown a great interest in Katie as this tumour is so rare in adults and especially rare in children.

Our lovely Teenage Cancer Trust, Youth Support Co-ordinator from Manchester Children’s Hospital Nicola mentioned about the Cinderella Project. What a God send!
Just from the point of me hating shopping for a start, I really had no idea where to start looking for dresses. Katie has only just had her Hickman line removed (the Sunday before her styling appointment). This was also a consideration as Katie would feel so self-conscious of the line had it still been in. She was originally looking at dresses with one shoulder strap to cover the line.
After all that Katie has been through these past 6 months, I really wanted her to feel like a princess at her prom. “

Margo Cornish, founder of the Cinderella Project helped Katie find her dream prom dress:

“It was important for Katie to feel comfortable in her prom dress and we needed her to feel beautiful and elegant. The team at Diamante were used to meeting teenagers going through treatment so they knew exactly how to handle her self consciousness sensitively and make the styling such a positive experience . We had It wasn’t long before we found Katie a beautiful sapphire blue gown with a matching stole which she could use to cover up if she wished. The smile on Katie’s face was priceless and she couldn’t wait for her prom night”

“The whole prom experience was amazing. Nine months ago I didn’t think I would be well enough to attend, but I felt amazing on the night. I met eleven of my friends and we all went together in a limo to the prom. It was great to be with my friends again after spending so much time in hospital.

Katie X

10 beautiful young ladies whom all were helped by the Cinderella Project

Katie looked stunning in red dress by Diamante

Fast forward as few months later to October when Katie went on to take part in a special photoshoot with the Daily Mail along-side Margo Cornish, who organizes the Cinderella Project and nine other young ladies all whom had received a cancer diagnosis during their teenage years.

Katie looked dazzled once again in a red sparkly evening dress from Diamante.

Around that time Katie had another scan…

Nanette takes up her story

“After 3 months of living life something close to that of a normal teenager, we had a scan in Sept 2018. Katie had dyed her hair, been to parties, had days out, had sleepovers and had also been to "Find your sense of Tumour" camp with Teenage Cancer Trust.

Katie’s scan results unfortunately showed the cancer was back and had spread much further. Katie’s consultant as RMCH decided to refer us to the team at the Christie as he was working under their instruction and as Katie was very mature for her age he thought she would find the Christie more of a relaxing and adult setting.

Katie had started Cardinal Newman college in September to study A level combined English, Law and German. (She fought hard to study German and she had insisted on taking the GCSE knowing she wanted to study at A level). We had a feeling it was back, just little things, that made you think things just were not right. She complained a little of back ache from carrying her college bag and she looked pale. College were absolutely amazing; they really couldn't do any more to help. From letting Katie put her heavy bags in staff rooms, to lift passes, to passing on work missed, to just generally being there and checking in on her to see if she needed any support.

Katie wanted to start afresh. None of her friends (other than school friends) knew about her cancer and she didn't even let on to her school friends it was back as she didn’t want to be treated any differently by anyone. She didn't want them to worry.

Chemo started again in October. It was in the form of tablets. 2 weeks on 2 weeks off. This meant she could carry on college as normal. She didn't lose her signature bright red hair either. If she was off college due to pain or tiredness or clinic appointments; she said she was skiving - it gave her kudos! ☺

She studied so hard - always came top in her exams. She absolutely LOVED her law lessons. Missing college meant it was hard to keep up with the missed vocab for German so she took the difficult decision to drop that subject after a few months.

Scans revealed that this chemo was not working and the cancer was spreading further. Throughout this Katie was valiantly still attending college, completing work etc, though days out with friends had to be minimised to cinema trips as she could not stand or walk for long periods.

A further round of a different chemo was then proposed, this one involved attending clinic for 3 days in a row to receive treatment. Each time Katie needed her "wonder anti-sickness” as she called it as without it - she was horrendously ill.

Travelling to Manchester really did take its toll on us all as a family but more so for Katie. She really hated the early starts but we needed to set off at around 6:30 am each time to try to miss the rush hour traffic to get into clinic as soon as we could, as the sooner we were in the sooner Katie could leave! ☺

Further scans after 3 months of chemo showed it had not slowed the beast, so next treatment was an infusion that she would wear at home. Katie had a portacath fitted so the chemo could be administered in clinic and we would come home wearing the "bottle" of chemo . The outreach team would removed the chemo once it had all infused after approx 2 days.

This in itself created massive problems. Being aged 16-18 is a grey area in the NHS. You are too old to be classed as a paediatric patient and too young to be classed as an adult. The Lead nurse in the clinic spends most of her time going backwards and forwards from adult services to paediatric services in an area until one service "backs down" and agrees to take on the patient. A less than ideal situation given what some young adults have to go through.

Because the farce of which department should look after Katie hadn’t been resolved by the time she was on chemo, Katie had to visit the doctors surgery whilst neutropenic to have stitches removed (from the insertion of her portacath). Shortly after this - she gained a temperature and we had a 4 night stay in Preston hospital. We were only informed that no nurse would be able to attend our home to remove the chemo infusion when the infusion had finished. Paediatric nurses were told they must not attend under any circumstances (even though this would have been continuity of care) and that Katie would now fall under adult services as she was 16. Adult services told us they could not attend as they did not have the training to remove infusion sets from a portacath. This all came to a head when we had no choice but to jump in the car and head into Manchester in the hope that clinic was still open to have the infusion set removed. We got there with minutes to spare despite it being rush hour traffic, but the stress of this did take it’s toll on Katie.

We literally had to demand a nurse visit us to remove the chemo as the alternative Katie was offered was to go into the Rosemere centre in Preston or back to the Christie, which given Katie’s state of health was just not acceptable. Needless to say Adult services then attended after training.

Katie knew time for her was short - but always kept positive. She never discussed it with us, she had an amazing way of being incredibly strong, and just skilfully changing the subject when awkward moments came up, we realise now it was her way of protecting us from the pain. She was always the one her friends turned to if they had an issue that they needed to talk through and was always there to offer advice and listen to their problems. If only they knew of hers.... Katie purchased some poetry books that dealt with serious issues, death being one of them, which showed she had in a way come to terms with what was happening to her. Some of the poems were bookmarked by Katie in the books, when we read these we had to use them at her funeral.

We had booked a holiday cottage in Ullapool to go and see Katie and Ella’s Grandie during August 2019. Katie’s pain had been getting progressively worse and a week before we were due to go on holiday we had an appointment with the pain team to review meds. At this point she had another scan which showed the cancer had spread further and was now dangerously close to her spinal cord in her neck. She was immediately told to wear a neck brace and lie still - something that Katie is not good at doing at the best of times.... We were admitted to hospital for radiotherapy.

She told the nurses and radiographers they had to "hurry up as I'm going to Ullapool next week and I need to go home and pack!” Such was her lust for having a good time even though everything was so tough for her.

We spent a lovely week in Ullapool, by now Katie was mainly in a wheelchair but she made the most of her time there visiting as many book shops as she could find and indulging in her passion for restaurant's and cafe’s. It was to be her last holiday unfortunately. We came home from the holiday a day early and went straight to the Christie.

The dreaded cancer had now spread to her brain. It was really just a matter of time, but in her inimitable way she still kept laughing and smiling even creating Katie’s party room in her room and inviting all staff to "come in for a skive and cake" whenever they popped in to carry out their daily duties.

Being stuck inside in a hospital room was difficult for Katie she so wanted some fresh air, as it turned out thanks to a wonderful nurse - the day before she passed away, she was wheeled in her bed outside into the garden at the Christie. She was so pleased to feel the sunshine and shouted at a pigeon in case it thought it was ok to "Shit on her bed!”

We had a lovely evening with family and friends around her bedside eating pizza and chatting and laughing. This was to be last time we had with ‘our’ Katie and although it is sad to think of it as our last interaction with Katie it was beautifully perfect in every way. The next day she was unresponsive and passed peacefully away shortly after this with us by her side.

Her funeral truly was a celebration of her life with over 500 attending the crematorium and over 200 coming back to the venue for a "party". There was laughter and smiling all afternoon, as people remembered Katie and her cheeky Katieness.

We all miss her terribly but looking back at her determination, bravery and constant positivity keeps a smile on our face in her memory.

So.... to "Keep Your Katieness" means

Stay determined

Stay positive

Keep smiling. it's the only way

Always think of others and help them if you can

Just roll with it. Take each day as it comes.

Laugh lots - try to see a funny side of everything

We try to live by this always.

During her treatment at the Christie Hospital in Manchester, Katie and her family became a visitor to the Maggie’s Centre.

As a tribute to Katie her friends and family decided to take part in our bin-walk campaign in her memory and to remind everyone, to keep their Katieness!