Izzy’s Story by her Mom Kelly
Hi, My name is Kelly Touhey, I am 36 years old, I’m married to Scott and we have two beautiful little girls, Lia Grace aged 9 & Isabelle Rose ( known to all as Izzy) aged 4. We live in Ecclesfield, Sheffield.
Up until June 2012 we were a little family enjoying the normality of everyday life.
In June 2012 Izzy was a little unwell, running a temperature, off her food a little and just generally not herself, I took her to our GP who suspected Izzy may have a water infection and prescribed a course of antibiotics. Our GP called me the following day, which happened to be a Saturday to ask how Izzy was doing, I said she was a little better but still not right our GP asked me to bring her to surgery on Monday morning if she was still not right. Over the weekend Izzy did pick up a little but I thought I would take her to surgery anyway as she was still drinking lots of water and spiking a temperature. On the Monday our GP checked Izzy and said she would like me to take her up to Sheffield Children’s Hospital (SCH) to have her blood sugar level tested as she thought there may be a possibility she could be diabetic. I took Izzy straight up to hospital where she was thoroughly checked over and all checks came back normal the Doctors up at SCH concluded that it was more than likely a nasty viral infection. The doctor at SCH asked if I would mind if Izzy had a chest X-ray just to rule out a chest infection which I reluctantly agreed to. This also came back clear of any infection and we were able to go home.
The following day I was at work and checked my mobile at lunch time to find I had a voice mail from the Doctor who looked after Izzy the previous day at hospital. I returned her call and she said they needed to see Izzy immediately as something had been picked up on the x ray upon reviewing it.
The journey from work to collect Izzy and take her up to hospital will stay with me forever, my mind was racing with all kind of thoughts of what they could have seen. I called Scott who met me up a the hospital, we were taken straight into the X-ray room where Izzy’s chest X-ray was repeated.
We were then met my the same doctor who had called me and taken into a side room, my heart felt as though it was going to break through my chest, I almost felt as though I was watching the situation happen to someone else. We were met in the room by Dr Jenkins who is now Izzy’s consultant. We were given the news that a mass had been found at the top of Izzy’s chest.
I immediately went into overdrive asking lots of questions, what could it be, what was next, etc? Scott was silent just trying to take it all in.
We had to go back up to SCH the following day for Izzy to be sedated and have a CT scan, the next few weeks were then a whirlwind of tests, procedures and hospital visits.
The results of these initial tests showed that the tumour was situated very close to Izzy’s spine at the back of her chest and part of it had grown between her vertebrae. She would need surgery to remove as much of the tumour as they possibly could do safely (without risking damaging her spinal cord). The tumour would then be tested to find out exactly what it was.
Izzy had major surgery on 13 July 2012, the surgeon had prepared us that Izzy’s surgery would take around 4 hours and she would be transferred to (HDU) High Dependency Unit afterwards.
Those 4 hours were endless, we sat in Starbucks watching everyone around us going about their normal everyday lives, while out little girl was an the operating table being operated on by a team of surgeons. We sat talking to each other trying to pass the minutes by, keeping our family and friends updated passed a few minutes on. We sat not daring to take our eyes of the pager given to us by the hospital. When the pager finally buzzed we both jumped up and ran back to the operating room. We were met by Mr Marven (Izzy’s surgeon) and told that her surgery had gone really well and the team managed to remove over two thirds of the tumour.
Izzy was very poorly afterwards and spent 5 days in HDU, this was such a heartbreaking time, she was connected to so many machines and monitors. Izzy contracted a lung infection and one of her lungs began collapsing which caused her recovery and stay on HDU to be longer. Although this was such a hard time, Izzy kept us all going with her cheekiness despite being so poorly she still managed to smile.
A week after Izzy’s surgery on 20 July 2012 we met with Dr Jenkins for the results of the tests on the tumour. This was the day Izzy was diagnosed with Neuroblastoma.
Neuroblastoma is a very rare form of childhood cancer and is in effect cancer of the nervous system. Less than 100 children a year are diagnosed with Neuroblastoma in the UK and the majority of these are Stage 4. As Neuroblastoma is very often symptomless it is often only found in the later stages when the tumour has grown to such a size where it is pressing on other organs. Thankfully Izzy was stage 2A as her tumour had been an incidental find, due to the chest x ray being taken.
I think Scott and I had already prepared ourselves for this news and although we were heartbroken to hear the actual words I think we knew in our minds what Dr Jenkins was going to say.
This day was the day we were due to go on holiday to our beloved Isle of Wight. Dr Jenkins told us that Izzy would need an operation to fit a portacath (a line straight into Izzy’s chest through which her chemotherapy would be given), then she would begin her chemo treatment. This was six courses in total which incorporated 5 different types of chemo, each course would be either 3 days or 5 days.
Dr Jenkins told us that there was no reason that we couldn’t still go on holiday for a week and that Izzy’s portacath operation would be the scheduled for the week when we returned from holiday and her chemo due to start the week after that.
So we did, we went on holiday, me, Scott, Lia, Izzy, my Mum, Dad, my sister Lindsay and my brother in law Pete, and we had the most amazing time, appreciating every single moment. The little things that previously we would have perhaps taken for granted or that would have gone un noticed, like the pure joy in our girls little faces as they jumped on the trampolines on the beach or watching them run so freely and innocently along the beautiful beach, this time just seemed so much more important. The colours with which I recall that holiday seem so vivid and bright in my mind, the sun seemed to shine so much brighter, it really was a truly healing holiday we all needed.
We returned home ready with our amour on ready for the fight of our lives. We were together and strong our hearts and souls were united in the battle ahead.
Izzy then had an operation to fit her portacath and then started her first course of chemo on 6 August 2012.
The chemo was tough, it really took its toll on Izzy’s little body, she was very sick and tired. Over the 6 courses of chemo Izzy had to have countless hospital stays when she had spiked a temperature and needed to be given IV antibiotics as her body had no immune system to fight of any infections, she needed many blood transfusions and platelet infusions. There were many tough days throughout these months but again throughout Izzy never complained once, she never ever asked ‘why me?’ She just accepted what was happening and got on with it in a way that I can only describe as courageous. She really is such a character, she would be dancing on her bed while having chemo infused, riding up and down the ward on her drip stand. She loved spending time in the playroom on M3, making things and playing with play doh.
Our world so quickly changed we would talk about HB, Platelet and Neutrophil levels, which a few months ago would have been completely alien to us, now we knew what each level meant, what was good and what would mean that Izzy would need blood or platelet transfusions. We knew the signs to recognise that her levels were falling, petechiae spots if she knocked herself, the ‘chemo colour’ of her skin. There were times when Izzy’s chemo had to be put back as her levels had not recovered from the previous dose.
We would learn the names of all her medicines, we had a kitchen cupboard solely for all Izzy’s medication and equipment. I remember looking at it one night and thinking to myself that ‘no 2 year old should need all this medication’ I quickly shook myself out of that feeling and got on with the job in hand of recording what meds she had had.
We learnt not to plan or expect anything, to take each day as it comes, to embrace the days Izzy felt well and to ride out as best we could the ones when she was not well. I tried to make sure that each and every day she was as happy as she could be, even if she was in hospital and feeling really poorly we would play games, Peppa Pig bingo became somewhat of a favourite, or do some craft or maybe just snuggle up together in the big armchair which I slept in at the side of her bed to watch Disney Channel. Whatever it was even just the small things if Izzy smiled and was comfortable I felt I had made it that little bit easier for her.
In early October after Izzy’s third course of chemo she really was loosing a lot of weight altogether she had lost over a third of her body weight and was down to 11kg. Izzy had an NG tube fitted which goes through her nose and into her stomach, this would mean that Izzy could be fed overnight through her NG tube to try to maintain her weight.
Izzy’s last chemo day was Sunday 9 December and on Wednesday 12 December Izzy and myself were taken on the trip of a lifetime with ‘when you wish upon a star’ to Lapland. It was such a magical day, although Izzy was still very weak from chemo she loved every part of the day. She went sledging, had a snow bike ride, reindeer sleigh ride and ate toasted marshmallows by the open fire, watched a wonderful firework display, then it was off to meet the main man himself. I will always hold very close to my heart Izzy’s little face as she spotted Santa walking though the snow with his reindeer, tears rolled down my face to see her delight. We then were taken to the Arctic Circle to Santa’s post office to see where all the letters are sent and sorted.
After completing her course of chemo Izzy required a course of radiotherapy. When Izzy’s consultant spoke with us about what would be required of Izzy during her radiotherapy they initially thought that she would have to have each and every radiotherapy treatment under anaesthetic.
Her radiotherapy course would be everyday for 3 weeks. We were given an option to work with one of the wonderful Play Workers, Charlotte from M3 to prepare Izzy for her radiotherapy so that she could have it awake and without anaesthetic, her treatment would require Izzy to be alone in the treatment room and lay perfectly still whilst the treatment took place.
We met with Charlotte and had lots of visits to look at the machines that Izzy would be treated with up at Weston Park. We used lots of little games and our brave little girl amazed us all once again by having every scan and radiotherapy treatment awake.
Izzy became somewhat of a superstar at Weston Park she was one of if not the youngest to ever complete radiotherapy without anaesthetic.
Izzy completed her radiotherapy treatment on 6 March 2013.
In August 2013 we went on a very special family holiday to Disneyland Paris for 5 days then over to Isle of Wight for a relaxing week in the sun. To say this was a magical holiday does not come close to describing it. It was wonderful to see both our girls enjoying themselves being ‘normal’ little girls was truly wonderful.
Throughout the past 2 years our big girl Lia Grace has been amazing, she has shown patience & understanding well beyond her years. She accepted that on many occasions she had to stay over at Nannie & Grandad’s again whilst we were in hospital. She really did show such strength and courage during this time, always putting Izzy’s needs before her own. Izzy’s face lit up every time Lia visited her in hospital, she really is such a wonderful big sister whom Izzy adores.
Izzy had a scan in March this year which to our absolute delight is clear. Izzy is really well, she has regained all the weight she lost and is a healthy and very happy little girl. She loves all things most little girls do, Disney Princesses, Mickey Mouse, dancing and playing outside in the garden. She started school in September and is really enjoying it.