How can it be one month already? One month since she last cuddled us. One month since she last spoke to us. One month she smiled her amazing smile. One month since our hearts shattered to pieces.
How is it fair? Why did it have to be Eileidh? Eileidh fought with everything she had, for three and a half years and it still snuck up behind her when we were all least expecting it.
Until now, I’ve not really posted about what happened but the reality of neuroblastoma is too important to hide. Many people saw Eileidh smiling, happy and running around but that was only small parts of a day. Most of the time she was too sore and tired to do anything other than lie down and watch her tablet or play with her kittens.
On Wednesday 28th June, Eileidh went in for her usual platelet transfusion before we headed to Dundee to see Little Mix, but then she spiked a temperature so ended up being admitted for 48 hours of IV antibiotics.
In morning of Thursday 29th June, I felt a small lump next to her PEG site, which her doctor thought may have been a new tumour so she went for ultrasound scan at lunchtime. Eileidh was relatively bright for a while but as the day got later, she got more tired.
Eileidh managed a game or 2 of cards with grannie before she had enough and wanted to lie down again. By evening, Eileidh was having constant nosebleeds, was very sore and started having difficulty breathing, which resulted in her requiring oxygen.
Because of the constant nosebleeds, she wasn’t able to have the nasal prongs. After a lot of fighting with the nurses, she eventually kept the oxygen mask on, albeit with her dummy still in her mouth too. I noticed that her tummy was getting more and more swollen so we started to measure it, which confirmed what I said and her tummy had grown over a cm in about 30 mins.
By now, Eileidh was requiring very regular pain relief (Oxycodone) although it wasn’t helping much so they decided around 6am that she would be moved to HDU so they could give her continuous IV Oxycodone with pushes as required.
On Friday 30th June, I had a meeting with both Eileidh’s doctors first thing in the morning. Another small little room in which you know it’s going to be bad news. There I was told that the neuroblastoma was now in her liver and she had days left, may a few weeks if we were lucky.
They said they could start her on chemo if I wanted them to but their opinion was that it would make no difference, other than making her feel worse. I had already filled out her CYPADM form for end of life care and we had discussed what my wishes were concerning this. Quality versus quantity was always in the forefront of my mind for a long time.
How could I put her through more pain that would make no difference? That was when she was moved back upstairs to the palliative care room and we called everyone in to see her. Throughout the day she was becoming more and more unresponsive, not opening her eyes a lot but she did still interact when she could.
We had her favourite films playing in the background so it was never quiet as she hated quietness. She was happy to see Harrison when they arrived and she kept asking for Harrison to sit with her. Zara even surprised her with Rapunzel and Belle that evening! Even though her eyes were mostly shut, she was still mouthing along with the songs and telling them off if it was wrong.
By this point, Eileidh was needing a push almost every five minutes to help with the pain and we could actually see her tummy growing in front of us. Once most people had gone for the night, I started to think I made the wrong decision about not starting chemo so after discussing it with my mum and dad, I decided to ask her doctor again about it in the morning.
Cerys went home with grandad that night while Callum and I stayed with Eileidh. That night was the longest, most horrific night of our lives. By the early hours the continuous IV Oxycodone and constant pushes were only giving her about 5/10 minutes relief and she would start screaming in pain again until the push kicked in.
After the doctor coming to check her, she was put onto medazolam (a sedative) with the Oxycodone, which helped greatly. She settled after that was started, although she still fought the oxygen mask every so often but her breathing was very shallow and she desperately needed it.
Her liver was so enlarged, you could feel it at each side as it had almost completely filled her abdomen, pushing her diaphragm up and starting to crush her lungs and heart. Callum and I stayed at either side of her the whole night and she stopped breathing a few times but managed to catch her breath again thankfully.
On Saturday 1st July at 6.30am, we were advised to call everyone in as Eileidh had limited time left so by 7.30am almost everyone was there. Eileidh was completely unresponsive by then although she knew we were all there, everyone taking turns holding her hands and cuddling her.
She was read stories and her films continued playing in the background. Eileidh was no longer in any pain and her breathing became more and more shallow until she took her final breath at 11.46am.
For the first time ever, the ward was completely empty so we were able to stay with her until Monday when she was taken directly to the rest room. Eileidh has never been on her own before as if I wasn’t with her, someone else was so there was no way I wanted her to go to the chapel of rest.
Thankfully our amazing doctor arranged for us to get a cooling blanket so we could stay with her as long as possible. I cannot thank every doctor, nurse and auxiliary enough for everything they did for Eileidh and our family.
Being able to stay with her until the very last moment meant the world to us all as our entire family and close friends continued to come and spend time with her too.
It meant I only had to spend one night away from her until she came back to us at grandas house, where she stayed until her celebration of life. Having her with us was a huge comfort as we could still speak to her, see her and touch her. She was and always will be the perfect pink princess.
It’s hard to comprehend just 13 days earlier she was having the time of her life at her ‘wedding’ to Harrison and that day will stay with us forever. Seeing her so happy and full of life is how I want everyone to remember her.
Eileidh always did everything by extremes, there was never an in between with her. She made the most of absolutely everything. Even the simplest thing could give her hours of amusement. Very rarely did she let anything get her down. No matter what she was going through, she always had a big smile and was quick to tell people if they were doing something wrong, especially when it came to her wigglies.
If Eileidh’s Journey has taught you anything, please make the most of every single day. Give your kids an extra tight cuddle. No matter what is happening in your life, always look for the positive. You have the power to change it. There is no such thing as can’t, always try.
Eileidh, I love you the whole wide world, every day and every night. There is an Eileidh sized hole in our hearts that will never be filled.
I have been debating whether to post this as if prefer everyone to remember Eileidh and be able to smile. However, this is the reality of neuroblastoma, showing how quickly and aggressively things can change. This is a necessity when it comes to raising awareness and if her journey has raised enough awareness to help diagnosed one child earlier and maybe save their life, then that is Eileidh’s Legacy.
Thank you to all the staff at RACH, Schiehallion Ward, UCLH and Helen DeVos Hospital for everything you did for Eileidh. Thank you also to everyone who supported Eileidh, followed her Journey and to the strangers who became family. We love you all.
For more information on how you can support families living with cancer, please visit SolvingKidsCancer.org.uk