Our Story

I did think long and hard before writing Our Story and then the question was, how to write it? Do I skirt briefly around the edges or go into greater detail? I feel I’d somehow being doing an injustice if I was to try and cram it into a nutshell – not just to Ella but to all the families that Ella Gracie’s Garden has set out to help. I feel it’s important for you to understand, even if it’s only ever so slightly, the suffering these little children and their families have to endure. Ella Gracie’s Garden is not just about ‘aesthetics’ and turning a disused space into something pretty; it’s about making a difference.

Picture of Ella

Until we were cruelly launched into this devastating world, I had no knowledge of cancer and its effect on lives. I’d heard of someone who knew someone but never a child .

When a patient bounces out of the other side of months, years even, of treatment we all celebrate their health and don’t question how they got there and understand the uncertainty of it all. Or when we learn of a sad loss to a horrid disease it is impossible to have any idea of the battle faced and devastation it brings along the way to an entire family.

It would be by far the easiest option for me to walk away. It’s taken me months to muster up the courage and find the strength from somewhere to write down my memories but I’m determined. I made a promise with Ella that once she got better, we would go back to The Marsden and do something to help.

 

Remembering Ella’s 7th Birthday and looking back over photos of that happy day in the garden one sunny September day. Her beautiful long blonde hair, pretty party dress (still with her school shoes and socks in her haste to play!) she was happy, energetic and so full of fun.

But pouring over photographs following this, I could see a a slow deterioration. Over the coming months she became pale, quietly withdrawn and didn’t have as much energy as she had before. It was the October half term when she contracted a virus that was doing its rounds. Whereas she would simply shrug it off, it lingered. She got better only to be floored by it again. Some days she would be my little girl, others she’d be lethargic and withdrawn but always insisting she was ‘fine’!

I popped into the school office one Friday late November to say I would be keeping her off school on the Monday to take her to the doctors as she wasn’t ‘quite right’. They expressed their concerns also; that day she looked quite ‘yellow’ but ate her lunch and went to play as normal. I was becoming very concerned and so not prepared for events that followed.

The weekend was relatively normal but on the Monday morning she could hardly breathe and had developed a ‘rash’ on her face. Walking her across the car park to the doctors surgery, I put my arm around her and noticed her heart was beating very fast… The doctor said it was a sign the body was fighting infection and gave her anti-biotics. He couldnt explain the rash on her face but hoped she would respond within a few hours but if she didn’t, I was to take her to A&E as it was the quickest way to get her seen…

I called her dad to let him know she was poorly and he called in after work to see her. We had seperated a few years earlier and thankfully, remained friends. I remember, as I was putting her younger sister to bed, hearing her happily chatting to him, everything appeared fine until he screamed to out to me ‘Ella’s collapsed – I’m taking her to A&E!’

In that tiny moment, life as we knew it was about to change forever. There are no words to sufficiently describe the sheer panic, fear even and almost instinctively, I knew something was so very wrong. He kept in touch throughout the night, phoning me with updates, not that he had much to report, they were unsure and at one point they were about to send her home and he confirmed she was back to her usual self again. Perhaps she had a reaction to the anti-biotics? Relief. My baby would be home soon.

He called again. Someone had asked for another blood test, they thought she may be anaemic and had decided to keep her in overnight (what was left of it). It didn’t make sense to me. I googled it and followed links around and about. Leukemia popped up on more than one occasion. Denial now, no way, not my little girl.

I dropped Millie at school and went to the hospital. There was a ‘team’ waiting to see us and they ushered us to a quiet area, to talk. Along the corridors through into the Oncology unit – still denial. It’s just a quiet space, surely? They pulled up chairs and sat around us with pens and notepads and finally, a box of tissues… The consultant put his hand on my knee and calmly said ‘we’ve found blasts in her blood, we think its Leukemia’. I’m not sure of the conversation after that; it was like I was just hit by a truck and my world stopped. I had to fight to breath. They left us alone together to digest the devastating news, as he left he said, ‘it’s not hereditary, it’s not catching – it’s just bad luck and the good news is, we’ve caught it early…’ Good news?! My baby has Cancer. Not my baby, my precious most beautiful, gorgeous little girl. Not my Ella.

I wiped away the tears from my cheeks and dried my eyes, took a deep breath, painted on a smile and sat beside Ella on her bed, who by now was sitting up, quite perky wondering what all the fuss was about (and quietly enjoying the attention I think!). I told her she had ‘bugs’ in her blood – the doctors and nurses would do all they could to fight them and that we had to do our bit; we had to fight back – sling mud pies at them and make them go away but for the time being, we weren’t going home, we had to stay in hospital for a while…. She laughed and then carried on playing, seemingly not bothered. Ok, if she could do this, with such grace and serenity, then so could we.

Easier said than done. Many times over the coming months I had to find a private space – mostly in the parents shower room – to clear my head, digest, process and gather the strength to remain positive and take on another day when all I wanted to do was scream, wrap her up and take her far, far away to a world where cancer didn’t exist…

Early that December, we were transferred to the Royal Marsden Hospital in Sutton, a specialist Cancer hospital. We arrived by ambulance and Ella was wheeled onto the childrens ward. She was so not bothered! The ward was new and shiny; the bed went up and down and there was a telly…. She was taken to theatre to have a Bone Marrow Aspirate in order to confirm the diagnosis. Surrounded by other ‘shiny headed children’ as we affectionally called them; bleeping machines pumping life saving drugs into their precious little bodies, suddenly dropped into a world I had no knowledge of; it was so scaringly real yet I was still in denial and hoping beyond all hope the initial diagnosis was wrong and we could all go home.

 

The diagnosis was ‘ALL’. Acute Lymphoblastic Leukamia. Devastating. But hey, good news (again!) It was in its very early stages and prognosis for this type of blood cancer is very good. Ella would have a course of high dose chemotherapy in order to get her into remission (kill all cancer cells) then we would go over to ‘maintenance’ chemotherapy to make sure it stays away. After our initial stay, we would be backwards and forwards to Day Clinic – and sometimes our local – for probably the next two years, after which time, we could say she was cancer free and we could pick up our lives again.

It’s easier to say it – write it – read it even, than live through it. Chemotherapy in itself is toxic and the side effects alone are vile and debilitating. It can’t differentiate between good and bad cells so it wipes everything out, the theory is, the body fights back, eventually rebuilding the lost healthy cells and the cancer cells are destroyed forever. Blood samples are taken everyday to assess the ‘counts’ – white blood cells, platelets, HB & neutrophils … We were told we would see a pattern after each round of chemo; the counts would drop but rise back to normal levels soon enough.

The nurses would hand us a little piece of paper daily and it would lift our spirits to see the numbers rising (another step closer to going home!) but then there was the concern, when the stayed flat, or even dropped; it could be a sign of infection – most probably – and hopefully – not that we ever wished that for her as it would mean a longer stay in hospital and further treatment but it was better than the alternative; if her counts failed to recover, there was a very real probability the cancer hadn’t responded to the chemo….

As the immunity is also wiped out and the body can’t fight any infection, even a common cold could be dangerous if not treated early enough, her temperature was also monitored constantly. 36 something is good, 37 is a warning sign and 38 requires hospitalisation for a course of antibiotics and lots of hope for a ‘normal’ infection that will respond soon enough. Ella’s weakness seemed to be her chest. Her breathing would become fast and shallow, I lost track of the amount of X-rays she had, always inconclusive. Many nights I would lay awake, just listening to her breathe…

Then there is the loss of appetite – food tates metallic apparently and even if she found something she fancied to eat, some of the other drugs induced vomitting… and when she was on steriods, oh! the mood swings and ravenous rage! Roid Rage we used to call it! And hair loss of course, eyebrows, eye lashes too… Hair is a big part of your identity, more than I gave it credit for. Ella was known for her beautiful long blonde hair and when it started falling out in clumps, I had to cut it to just above her shoulders. We both cried but she was pleasantly surprised with her new look and said she wanted to keep it like this when it grew back! Ultimately, she lost it all and seemed to deal with it extremely well and very rarely wore a hat. She was still so beautiful and I think inside she grew an inner confidence and was simply happy ‘in her own skin’. How many of us, even on a good day, can say that I wonder?

So uncertain times, worrying, stressful times in a completely alien environment lay ahead. Our lives were now dictated to by this thing they called ‘cancer’ – years of chemo cycles, coping with the side effects; anxious waiting and uncertainty, hoping for a good result but constantly living in fear of something we couldn’t even see, least of all understand, feeling its destruction and devastation all around.

Ella did well and we were allowed home just in time for Christmas. She didn’t look so ‘well’, naturally, but her energy was back, we had lots of giggles and seemed to be careering along the predicted path to recovery. A few days later, her temperature started to rise and before we knew it, we were back in our local on a course of antibiotics to treat what they thought was an infection in her PICC line. We were there for a while without any improvement and she seemed to me to be presenting with the same symptoms as when she very first diagnosed. I asked, out of curiosity but secretly, I was concerned. How was she responding to the initial round of chemo? For some reason I can’t remember, they didn’t have an answer but were sure it was just an infection that would respond and we’d get home soon. Sure enough, we were discharged on New Year’s Day only to be called back in again the same afternoon. This bit’s a blur but we were soon back at the Marsden for the next three months whilst Ella was put on different chemo cocktails, one cycle after another with many infections in between.

I stayed with Ella during the week whilst her dad looked after Millie and then we would swap at weekends. The situation was totally beyond our control and we had no other choice; someone had to be with Ella always and Millie had to have a normal life as far as possible. We received tremendous support from family, friends and the local community. I really don’t think we could have coped otherwise, our lives were suddenly turned upside down, backwards then dropped in a heap on the floor. I will always remain eternally grateful to the people who were there to pick us up and piece us back together again.

 

The diagnosis was not as straight forward as was initially thought. She hadn’t responded to the initial treatment as hoped and I was right to be concerned. In fact, the cells in her body had risen, to quite a scary level. They now called it T Cell A.L.L – high risk. It was a rare form of A.L.L and they hadn’t had a great deal of experience with it, we were now in unknown territory. Her Consultant was positive however and assured me they would do everything they could; they would keep trying with different chemo cocktails until they found one that would get her into remission. I remember feeling positive and until she mentioned a bone marrow transplant.

A transplant was now our only hope of a cure and transplant came with its own risks. I desperatley didn’t want to put her through any more than we had to. Surely if they found a chemo cocktail that works and if she’s cancer free, why not maintenance? They explained in more detail, that her particular cancer was very aggressive, if they did manage to get her into remission, there is a high risk of it returning. They couldn’t keep her on the same chemo cocktail forever – my understanding was, this particular cancer learns and can find a way back… By introducing healthy bone marrow cells, the idea is, they actually fight and kill the cancer that Ella’s bone marrow were unable to fight.

I tried to explain to Ella the best I could without scaring her. She needed to remain positive and focused – we were going to beat this! but by now, she knew too much and was well aware of the implications, as much as I tried to protect her from the scary bits. There was always hushed talk and stifled tears amongst the adults when we learnt another Angel lost their battle. This was a cruel world we found ourselves living in but she kept me sane, she always had a smile and never complained, ever. She became so well versed in the routine and proceedures and insisted on helping the nurses where ever she could. She’d change her own dressings – even removing a temporary cannula from her hand and amazingly, putting down her own nasal gastric tube on more than one occasion.

Finally, in the June, we were overjoyed to learn that the last round of chemo had got her into remission and it was all systems go for transplant! We were given a date for early July and thankfully, Ella remained well enough to stay at home during this time. In the meantime, a bone marrow donor had to be found on the Anthony Nolan register. It was a worrying time; the sooner we did this the better and there was a real possibility a suitable donor couldn’t be found. Thankfully for us, they soon found a donor – from Norway – a 10/10 match, it couldn’t be better and they we going to do a ‘live’ transplant which was better still.

Apart from the shingles on the side of her face (a result of her low immunity) Ella was so ‘well’ it was hard to believe she’d been battling cancer for the last 7 months and harder still to know what I was about to put her through. Conditioning for transplant is quite gruelling. She had to have triple dose chemo this time and total body irradiation. The side effects were awful but ‘academic’ as we had no other choice, by now, we had learnt that the cancer was making itself known again and the cells were climbing.

She didn’t appear to suffer any bad side effects from the triple dose chemo, no more than usual anyway. She flatly refused a porter with a wheelchair and scooted twice a day, for four days, backwards and forward to radiotherapy. I remember a doctor coming in to our room after the last day of radiotherapy treatment to find her scooting around the bed ‘She has had radiotherapy right?!’ (One of the side effects is extreme tiredness!!)

Transplant day was July 13th. We had friends and family visiting as 12 hours afterwards, we would be ‘on lockdown’ as we used to say. It’s how we referred to isolation. No one in or out (apart from doctors & nurses) until her counts had recovered, usually around 6 weeks. The nurse came in with a single bag of the donor cells which were given to Ella via a transfusion which lasted about 20 minutes and it was as simple as that (apart from constant monitoring in case she suffered a reaction) Ella was oblivious however and sulked the whole time because I had to interrupt her game on the computer! I dissapeared into the bathroom and cried. This day was enormous; as the Transplant co-ordinator had said, it was the beginning of the end. I knew what she meant but the word ‘end’ stuck and it scared me.

The next few weeks were awful if I’m honest, although Ella seemed to respond as they had hoped and it seemed like a lifetime before her chimerism results came back; she was 100% donor, cancer free! The best news ever but she didn’t seem to share in my elation. She’d lost her ‘spark’ and became withdrawn, refusing to eat and had no interest in anything at all and would just lie on her bed watching the telly. It was heartbreaking to see, after everything she had gone through…

She also contracted the Adeno Virus. Again, easy to say but to someone with no immunity, it’s potentially life threatening. The treatment is horrid but necessary and we had an agonising wait for her infection markers to come down and, as she was potentially a threat to the other patients, we had to remain in isolation for longer.

During this time, the shingles became worse and irritated her so much, she uncontrollably rubbed her face raw until she was barely recognisable.

I came back after a weekend at home and she had quite a noticeable squint and I asked she was aware, she calmly said ‘yes, and I can’t see out of it mummy!’ Panic. We were immediately sent to the specialist eye unit which was fortunately across the car park (our first outing in weeks!). They photographed the back of her eye, and with Ella still sitting one side of the desk, they called me to the other side to show me the image. “See that?” pointing at a grey area around the optic nerve “Leukemic cells”

Suddenly, I was back in the initial transplant meeting remembering the shock when I was told transplant was a cure but there was no guarantee it would work… ‘We dont know why it works for some and not others… There is always a risk the cancer could come back and if it does, soon after transplant, there is nothing we can do….’ Surely they are not Leukemic cells? We’ve just had her chimerism tests back, she’s 100% donor! Are you sure? None of this I could say out loud, Ella was sitting not more than a foot away, staring at me with her big brown eyes. I smiled at her as the doctor said she would send a letter to our consultant confirming her findings. It was a long, quiet walk back to the ward. I think we were both trying to rationalise and reason with what we’d just heard.

Soon after, the consultant came and found me. She was so apologetic. Nothing is certain until a biopsy is performed, besides, if it had got onto her brain, she would have violent headaches and sickness, it would be very apparent something was wrong. Still, she (the eye doctor) was the expert and they had to take her lead. Ella was booked in for an immediate LP and preventative chemo before the weekend. We’d have to wait until Monday for the results. I remember asking Ella is she felt ok? She replied as she always did ‘fine’ and I replied, as I always did ‘you are my superstar!’ and before I had even finished my words she stared back, holding her beautiful eyes wide open ‘I know!’

To our complete relief, her BM results were clear, still cancer free! The thought was, the shingles had attacked her optic nerve and sadly, we soon learnt that the vision in her left eye was completely lost. If only she had said something sooner, they could have upped her medication and probably prevented it, but that was my Ella, she wouldn’t complain.

We soon had another scare, there was ‘intimation’ they had again, like all those many months ago ‘found something in her blood’ and I was told to have someone with me when I was given the results the following day. I’d faced too many hurdles on my own and this time, my strength was waining so I took their advice and called her dad. He was there first thing and we waited all day, forcing happiness for Ella’s sake, playing silly games whilst constantly watching the door, desperate for news.

The doctor came and found us late in the afternoon “So, its good news then?” ‘Good news?!’ we asked “Oh, has no-one told you?!” We were to relieved to be cross that we were kept waiting. It transpired the Adeno Virus was slowly creeping up again…

We’d been in isolation for the best part of two months and were carreering toward her 8th birthday. I was determined to get her home but were stuck in a catch 22 situation. By now she was so scarily underweight they wouldn’t let me take her anywhere until she started eating. I remember putting her in the bath, collapsing to my knees and crying, begging her to eat. She’d lost almost half her body weight and was quite literally, skin on bone. I was convinced if I got her home, she would eat. I was also convinced that being in one room for months with just me and her dad for company was driving her mad! Her infection markers had dropped and we were finally allowed visitors; family and friends rushed to see her but she barely acknowledged them. I was concerned that she was slowly sinking into depression and desperate to get her out into the fresh air which I thought would do her the power of good but there was nowhere to go. We tried to go for a walk in a nearby wood but the path was not wheelchair accessible. On another occasion we ventured out to a park and had to negotiate kerbs and dog poo, exhaust fumes and people staring. She didn’t enjoy it one bit, just wrapped her blanket tightly around her and pulled her hat as far over her face as she could and said nothing. Much to to my despair, she seemed happy to be back in her room, on her bed, just watching the tv.

 

We were finally allowed home, just for one night, so she could celebrate her birthday in familiar surroundings. It certainly lifted her spirits and I was determined that home was were she needed to be. It took a while as she had a few high temperatures in between but she slowly started making progress. Her counts remained flat but this was put down to the treatment for the Adeno Virus, although it still worried me. Along with bags and bags full of her medication and possessions gathered over the months, there was barely room for Ella in the car but finally, after a long and scary journey, we were on our way home! It felt so good that night, tucking her into her own bed, wishing her happy dreaming.

We had clinic visits at the Marsden twice a week and visits to the RS on weekends for GCSF but that was a good excuse for MacDonalds and a skate around the park. Well, her sister would skate at the same time, pushing Ella in her wheelchair, giggling as they went. On the Sunday she and her sister had great fun shaving their Daddy’s head into a Mohican and then dying it red and pink (well, why not?!)

Monday’s visit to the Marsden was ok although she was tired and unusually slept in the car on the way home. I put her to bed as normal, thinking her little body was exhausted from all it had to endure over the previous months. She did say her arm hurt, and her legs ‘ached like they did before she was poorly’ and that she had a headache. I asked if she wanted painkillers but she said no. She seemed a little delirious but was soon asleep. I went downstairs to make up the night medicines and immediately heard her crying. I raced upstairs and it was painfully obvious something was terribly wrong. I told her not to fall asleep, to keep holding my hand – she shouted at me – ‘I am!’ which somehow made me smile…

I called her dad, trying not to show panic in my voice, he had a 20 minute drive and I didn’t want to scare either of them…. He raced her to A&E where a CT scan showed she had suffered a massive brain hemorage. Again, we were both called into a side room only this time, there was only bad news. We were blue lighted to St George’s hospital in Tooting where they confirmed the RS suspicions. There was nothing they could do for her, the bleed was just too big. They offered to turn off her ventilator there, or we could always take her to a hospice but to my my mind, there was no other option. She needed to be home.

They said they fully expected she would slip away almost as soon as they removed the ventilator but her little fighting spirit decided otherwise. She went on for another three days, in between times, finding something from somewhere, seemingly laughing at one point at her favourite TV show, moving her hands to find her favourite toy and rubbing her face and head like she always used to. When I asked if she had a headache, she nodded. The nurse was baffled, the Marsden said it wasn’t possible and for a moment, there was a flicker of hope, what if they had got it all wrong?

Ella slipped away peacefully in the early hours of the following morning, almost 10 months after she was first diagnosed. The Marsden called a few days later. They said her recent chimerism test had shown the donor cells were falling. I knew what this meant and didn’t need an explantion, she carried on and confirmed they had also found blasts in her last blood sample. Inspite of everything, the cancer had returned.

“The End” as Ella would say, triumphantly snapping the pages shut when she’d finished a good read. Except its not the end, I, we, family, friends, a community, are struggling to come to terms with such a tragic loss. I miss her every day, with every heartbeat; we may have lost our battle with cancer but our story doesn’t end there; learning to face another day without her in our lives is a battle just begun….

 

Ella Grace

22.09.04. – 18.10.12