It is almost impossible to imagine that this time last year Mary had a full head of caramel coloured hair.
Hair that I took for granted.
Intense chemotherapy has resulted in those locks being replaced by a tell-tale bald head. The look of a child with cancer.
As I admire Mary’s new crop of velvety mole coloured hair it is hard to believe she is still having daily chemotherapy. A whole year of chemotherapy treatment, and still such a long way to go.
In the early hours of November 22nd 2018 my life changed irreparably. Our youngest daughter Mary, aged just 20 months, was diagnosed with Acute Lymphoblastic Leukaemia.
Even writing those words some 300 plus days later it brings up a whole host of emotion, yet still waves of surrealism and disbelief. I didn’t sign up for this.
One year on it feels only right to honour Mary’s journey, recognise and pay homage to how far she has come, as well as the brutal undulating journey we have endured as a family.
I am frequently asked by both friends and strangers how I ‘do it’, how I live this life as a Cancer Mum (how much do I hate that term) every single day, as they question how I keep going.
Sadly it is not a choice I have, but I appear to have cobbled together a technique, or blend of techniques. I hope this piece goes someway to explaining my reality and what keeps me putting one foot in front of the other, and in doing so I hope it may be of help to others.
Charlie and I, plus her lovely key worker at nursery, had noticed some slightly unusual bruising on Mary’s legs which didn’t quite fit. She had been walking for months and wasn’t particularly adventurous.
The bruises mainly covered her shins and looked like she had been poked repeatedly with a finger. They simply didn’t quite make sense.
I could barely say the words. I was desperate to find an alternative option for the diagnosis, yet I couldn’t.
Together with a handful of other relatively vague symptoms (she hadn’t been eating quite as enthusiastically as normal and had been waking up whinging rather than chatting in her cot) we made an appointment with the GP who was keen to see her as soon as possible – the first alarm bell.
On examination by the GP it was clear that Mary’s tummy was extended and her spleen significantly enlarged – another cause for concern. The GP requested a second opinion from another doctor at the surgery who is notoriously laid back.
Within seconds of seeing Mary’s bruises combined with her enlarged spleen he said she should immediately be referred to Paediatric A&E. The GP informed the hospital we were on our way and having arranged urgent childcare for our other two children, Max and Molly, we headed off, minds whirring, mouths dry from a flood of adrenaline yet both desperately trying to remain positive.
Somewhat ironically I had a long awaited spa day planned with my oldest best friend the following day. I called her en route to the hospital to give her the heads up.
She tells me now that she felt sick with worry, yet she focused hard to keep her tone upbeat during our conversation.
The wait at A&E was long and painful, many children struggling with respiratory problems and Mary meanwhile perky and playful, enjoying exploring the unfamiliar toys.
We knew she needed a blood test and grew increasingly frustrated as the wait played out. Eventually our name was called and after yet more questions blood was taken and the excruciating wait began. The registrar asked me what I was thinking, and I could barely say the words. I was desperate to find an alternative option for the diagnosis, yet I couldn’t.
Charlie was angry when I spoke the word “leukeamia” even being used in the context of Mary – likely due to his fear and own suspicions – understandably wanting to bury his head in the proverbial sand.
We were then taken up to a children’s ward to await the results, a ward packed full of sleeping children and their parents with machines beeping and buzzing, oxygen whirring. I called my darling sister Tula in Singapore – the time difference working in our favour.
She was surprised, and concerned, to see me calling realising it was 1am in the UK and she immediately sounded concerned. I huddled in the corner of the stuffy ward kitchen and struggled to get the words out, “Tula – they think Mary may have leukaemia”.
I felt her shudder across the other side of the world.
The wait was sheer misery, time ticking by seemingly unmoving and the crushing tiredness making staying positive so hard.
Finally I heard a door slam and the registrar appeared. My first gut wrenching realisation was that she wouldn’t have come up from A&E to deliver news of a ‘normal’ blood test.
When she invited us into the Relative Room for some privacy, accompanied by a nurse, a crippling sense of foreboding washed over, limbs feeling numb.
The registrar confirmed Mary’s blood work strongly indicated blood cancer, Leukaemia.
I recall swearing, loudly, and both Charlie and I cried. We then rushed back to a tranquil sleeping Mary and attempted, somehow, to attempt to digest this soul-crushingly devastating news.
Mary was immediately moved into a room off the ward to keep her away from infectious children (little did we know it was a room we have come to know so well over the following months).
My amazing sister made the appropriate, and challenging, arrangements to enable her to fly over from Singapore to be by my side.
Early the next morning staff carried out a chest X-ray and set up the transfer to the Oncology Team at the John Radcliffe.
I made some calls to close friends, breaking down upon uttering the words of Mary’s diagnosis and paralysed with heartbreak as I heard, and felt, their response.
Mary was then hooked up to an ECG monitor in an ambulance (due to the increased risk of stroke) as we were blue lighted to the John Radcliffe, accompanied by two paramedics and two nurses, one a specialist Oncology Nurse.
Having been quiet and deeply unsure Mary perked up in the ambulance, saying “nee naa” upon hearing the sirens.
I simply couldn’t believe those sirens were blaring for us, yet felt distinct relief to know we were heading into the hands of the best team possible for Mary.
I was also beyond terrified, feeling very alone in the enormity of the situation as Charlie had returned home to be with Max and Molly.
Only the start of the greatest parental juggle possible. Both the surrealism and adrenaline of the situation we had suddenly found ourselves in was somehow keeping me moving forward.
The John Radcliffe Paediatric High Dependency Unit is nothing short of incredible.
A mind blowing world apart from any previous hospital experience I’d known. A world I absolutely didn’t want to be part of; a centre of excellence for desperately unwell children.
As someone who normally says “I’m fine thank you” I had to learn very quickly how to say “yes please”.
The specialist Paediatric Oncology team was at our bedside before I had barely taken off my coat, and the kind, empathetic nurses were wholly reassuring and attentive. Due to how unstable Mary was she required blood to be taken every 4 hours, excruciating for both her and us.
She had a dangerously high white blood cell count (the normal range is 1-10. Mary’s highest count was 868 – something of a record apparently). We were once again moved into an isolation room and Mary was immediately cannulated to provide access for high dose fluids and catheterized to help the nurses manage urine output (key to excreting the toxic white blood cells).
The seemingly straight forward task of taking blood became deeply traumatic due to how rapidly her blood was clotting. It was almost impossible to bear the arching of her back in pain and fear each time with the brilliant doctor and nurses grappled with her kicking flailing feet.
Her licks of golden hair and round cheeks meant she looked completely well yet despite this a low heamoglobin count made her feel totally wiped out so as soon as the blood had finally been taken as soon she was calm again and then crashed out again with her beloved bunny.
As soon as she was deemed stable enough she underwent a general anaesthetic (the first of many to come) to have her Hickman line installed.
They started treatment with steroids straight away, followed by chemo within two days. I wept as I watched the ‘Cytotoxic’ orange fluid entering her bruised veins.
As my sister so poignantly articulated it, both a poison and a cure.
The next few days were absolutely critical in trying to bring down her very high white blood cell count slowly and steadily.
Finally after two weeks she was more stable and could move onto Kamran’s Ward, the children’s Oncology ward at the John Radcliffe.
A small Christmas tree glowed proudly, and deeply ironically, outside her bedroom window.
In those early days the reality of trying to maintain normality for our two other children Max (aged 7) and Molly (aged 4) whilst doing everything we could to support Mary was a huge logistical and emotional challenge.
Our local friends rallied, countless offers of help and genuine, with truly life affirming concern and empathy.
As someone who normally says “I’m fine thank you” I had to learn very quickly how to say “yes please”.
I remember November 2018 as being permanently dark. There was no natural light in the HDU department and I would drive in early before it was light or head home in the afternoon once it was already dark. Pathetic fallacy as its most potent.
When at the hospital we were up for much of the night comforting a distressed steroid fuelled Mary. The pattern of life and related exhaustion was crippling.
Christmas Day was possibly one of the most traumatic yet since diagnosis day.
Mary came out of hospital on the 21st December, and we longed for Christmas all together having been literally living a shift style existence, passing ships in the night.
Mary was clearly not at all well in the days following her discharge, not speaking or moving much at all, and just lay on her side in the day bed we had set up for her, staring ahead, almost unblinking.
Each day I took her out of her buggy and walked with our faithful chocolate labrador Betty, Mary wrapped up warm with blankets and a hot water bottle, and I would see her eyes brighten slightly.
But on Christmas Eve we noticed her hands and feet were colder than normal as we changed her for bed. I had a restless night, feeing increasingly anxious and as dawn approached it was clear she had deteriorated.
Meanwhile in cruel irony Max and Molly were palpably excited about their hung stockings and festive anticipation.
Charlie took Mary straight to the Royal Berkshire hospital and meanwhile I struggled with the cruel juxtaposition of the Max and Molly’s joy as they discovered their stockings, desperate to keep things as normal as possible for them.
I remember trying desperately to play the role of jolly Mrs Christmas whilst feeling nauseous with anxiety, my heart pounding.
After a few tense hours Charlie called home with the horrendous news that she was once again in the High Dependency unit (at Reading this time).
They were treating her for Neutropenic Sepsis (sadly a not uncommon side effect due to chemotherapy treatment).
Her blood pressure was dangerously low, her heart rate very high. They adminstered fluids and IV antibiotics and all we could do was wait, helplessly. Mary was so desperately unwell, again. I sent a desperate plea to my What’s App group of best friends and asked them to will her better in any way they could, hope, pray, and visualise.
My sister and her husband – over from Singapore visiting family in the UK over Christmas – came to visit and sit with us on Boxing Day, providing huge comfort and moral support.
I remember them both trying to be positive despite their obvious concern.
It was my stint at the hospital that day whilst Charlie returned home to enjoy some semblance of festivity with Max & Molly. Two days later Mary was transferred by ambulance once again to her Oncology Team at the John Radcliffe and remained in their care for 3 weeks.
She was diagnosed with RSV (a relatively harmless virus in a healthy child) and pneumonia. She required oxygen to support her constantly for almost two weeks. I saw in the New Year at her bedside, feeling helpless and lacking hope there would ever be an end.
It was hard to imagine she would ever sit up, play or interact again. Yet one day, she slowly sat up and starting playing with a toy unicorn on a slide a friend had given her.
Mary was back, her fighting spirit unfurling from the fog of a crippling double infection in an already vulnerable body. After a further few days we could finally take her home once more.
In the months that followed as the course of her treatment played out and took its inevitable toll on her small body we experienced countless hospital admissions with Mary.
Each time she has a fever that reaches 38 degrees she requires IV antibiotics, blood cultures taken to determine the source of infection and a minimum of 48 hours in hospital. At the drop of a hat. I have found this hugely stressful and it was like living on a knife edge, waiting for the cruel inevitable to rip the rug out from underneath us.
These repeated hospital admissions left life horribly unstructured and an unrelenting juggle and challenge.
The need to drop everything and react accordingly is not a friend of family life. We do not have family close by and have had to lean heavily on our incredible friends.
We have missed countless social events and spent much unwanted time apart. We have seen both snowy and searingly hot summer days looking out from the inside of a hospital room.
Mary thankfully hasn’t been admitted since July – with only one day visit in October with an ear infection and oral antibiotics.
We stay vigilant, knowing the subtle yet clear signs of her becoming unwell. We have now become braver about accepting an invitation, tentatively reply saying us attending depends on Mary’s wellbeing.
So, all these months on, still with such a long way to go (Mary’s End of Treatment date, all being well, is May 2021), how do I ‘do it’? How do I navigate life as a Cancer Mum? This is how.
I am lucky to have kept many of my friends from school over the past 20 years.
I have also met a close group of wonderful friends who have stuck fast by my side and both figuratively, emotionally and at times physically carried my through these past 12 months.
The value of my friends taking the initiative, doing the thinking for me relieving a brain so full of panic and lacking conscious thought from having to unravel daily tasks.
I have so, so much to be thankful for over the past year.
My friends have been our lifeline. Possibly the biggest impact and memory I hold close was arriving home after those first few horrendous days in hospital, in the dark.
I was completely wiped out by fatigue. On the doorstep were two big bags of food.
My best friends had plotted together thoughtfully and bought all of my favourite foods with the aim of filling the fridge and saving me the task of having to meal plan.
I will not forget slowly unpacking each item, every one so carefully considered, tears rolling down my face at the sheer thoughtfulness of my friends.
Presents for Mary, gifts for Max and Molly, care packages for me and Charlie, spontaneous food and flower deliveries. Less frequent now understandably but they still arrive.
Each one bolstering me that little bit more to support us through the next unkown step.
It was my husband, vehemently anti social media himself, who encouraged me to post about Mary’s illness a few days after her diagnosis.
Despite my early trepidation it has provided a valuable source of information for our friends, as well as an act of self-preservation.
It relieved the pressure to break the news face to face, at what was supposed to be a joyful time of year. I have learnt that managing the emotions of others is simply too difficult when you are at rock bottom yourself.
Writing, this piece included, has become a valuable source of personal creative self expression. I used to write short stories and novellas as a young girl, and little did I realise how important that writing was to help process, manage and make sense of thoughts and emotions.
I have attempted to practice meditation regularly for some time now, yet it has presented a challenge for my highly stressed, anxious and busy mind of the past year.
However breathwork has come more easily to me, with seemingly greater impact and benefit. I read Rebecca Dennis’s book And Breathe shortly after Mary’s diagnosis , then once I had finished it I immediately ready it again.
It resonated so much and made such simple sense. I am due to attend her workshop in the coming weeks, and cannot wait.
“Breath is the way back home to our senses and intuition. This is the starting block to healing”, Rebecca Dennis, author of And Breathe.
I have come to realise that at times when you feel you have nothing you do have your breath, and ability to alter it in a way that can soothe your nervous system.
Square, or box breathing, has proven to be a powerful stress reliever.
There were many times I was holding my breath, tensing my jaw, frozen with anxiety. Focusing on a very simple deep breathing technique has had a noticeably calming affect on my nervous system, allowing me to ‘be’ in that moment and strengthen me for what is to follow.
Without question the notion of acceptance of our situation has, and is, helping me navigate this cruel reality.
Not an easy concept but after cautiously adopting it as a ‘survival’ mechanism, it is apparently the only way I am able to continue to continue. I am still learning the unnatural sensation of riding emotions, rather than trying to quash them.
We are so conditioned to trying to make ourselves feel ‘better’ when we are not feeling happy or calm, and in doing so inadvertently bury and suppress valuable emotion.
Working through this concept with weekly Transpersonal Psychotherapy has undoubtedly helped me navigate the complexity of human emotion.
It is ok, and safe, to feel true deep raw human emotions. It is our human spirit and nature melding & adjusting ourselves to reality. I am gradually learning to respond, rather than react.
Acceptance incorporates gratitude. This has proved very difficult at times, but I have learnt, and am still practicing, on showing gratitude for each small thing.
That soft sleepy early morning hug from Molly into our bed first thing, watching Max determinedly dribble a ball down the football pitch, Mary’s new words.
Even on the more challenging days I endeavour to dig deep to pick at least three things that I am thankful for. It helps. Despite the darkness, there are always glimmers of hope, however small.
“Cancer Cloak”. My new superpower.
Whilst not easy to articulate, I can best describe this new ‘superpower’ as a useful blend of heightened emotion and need to slough off what is not serving me.
I quote the term “Magic Cancer Cloak” from Ella Ward, an Australian Advertising Executive with a brilliantly refreshing attitude to her cancer diagnosis with a ground breaking piece, “Things only cancer people know“. I am yet to read anything more on point.
Never being a strong decision maker I am now able to sense much more easily what will help me, or make me.
My nervous system is bruised and battered, and that’s on one of the better days.
An analogy I recently used when talking to a friend was that of how my nervous system is now seemingly comprised of velcro. Small insignificant things snag and stick on my senses, rather than gliding off with manageable ease.
I struggle with lots of loud noise, I struggle with big crowds and doing “small talk” with those I don’t know.
Rather than berate myself for it – my classic default – I try to allow my intuition to guide me and simply don’t put myself if situations (bar the unavoidable children’s tea and bath time every single day obviously).
I expect my senses will settle in time, but if not, acceptance is once again the key. Yoga, breathwork and the basic joy of a long hot bath annointed with essential oils work wonders to “velvetize” my nerves in the long term.
High intensity exercise was invaluable in the earlier days with bucket loads of the stress hormones surging through my body. It provided the ideal antithesis to long stuffy hospital days.
Running and circuit style training helped to utilise these stress hormones, effectively burning them off and enabling sleep – plus the welcome powerful flood of endorphins.
But now, so many months on my resilience is low and an intense workout leaves me feeling even more exhausted. I have since learnt that whilst it feels good with the endorphins flowing, I now try to listen to my body and not push myself beyond my fatigued limits.
I simply cannot afford to be exhausted and ill. I am needed. I have therefore adapted my methods of movements (more of which below).
It may seem cliched as yoga is so frequently given the answer for everything stress related. I have practiced yoga for many years and never has it been more valuable. I am lucky to have two incredible yoga teachers nearby, with very different styles but both with the ability to provide me with exactly what I need at that moment.
The opportunity to have my mat space, my time and either the heat created with a dynamic flow or the stillness created from a slower practice, I feel it genuinely heals me.
I often cry in Savasana (the relaxation element of yoga), it rises deep from within my chest and the tears flow. There is no sobbing, just an easing of pain and endless tears.
I have never been more grateful for my nutrition knowledge (I qualified as a Nutritional Therapist 8 years ago).
With my experience combined with access to friends/colleagues with a much greater knowledge bank I have been able to provide consistent personalised nutrition, to both Mary, myself and our whole family.
For several months Mary stopped eating completely and was fitted with a naso-gastric tube.Tthankfully I was able to support her through this as best I could.
A combination of sourcing and administering a specialist highly nutritious liquid feed, carefully selected supplements, daily juicing and sheer bloody minded commitment. It was a full time job, in addition to busy family life.
With Mary’s suppressed immune function I am frequently asked how I cope with the threat of external infection, particularly with her siblings ‘bringing home’ infection from school.
I simply strive to keep Max and Molly as robust as possible. I am adamant about hand washing and in the earlier days would request removal of all shoes in the house, as well as their school clothes the moment they walked through the door.
I experienced a period of feeling very anxious about Mary becoming ill again but a lovely Paediatric doctor at Oxford reassured me that 9/10 she will become unwell from her own body’s bacteria.
Plus acknowledgement and acceptance that my anxiety is not serving anyone, least alone Mary. I simply endeavour to do what I can, and don’t send her to nursery when she is confirmed neutropenic or seems flat or tired.
We continue to avoid crowded places such as cinemas, busy playgrounds or softplay. I stay on top of their Vitamin D levels and now she is in Maintenance Phase of treatment I am building up her gut immunity with fermented foods and probiotics.
The Maintenance Phase is most certainly not low Maintenace.
She has daily oral chemo, additional chemo once a week, weeky dressing change and flush of her Hickman line, 2 weekly blood tests, IV chemo every 4 weeks and intrathecal (into the spinal fluid) chemo every 3 months to protect her central nervous system. Plus weekly prophalactic antibiotics twice daily at weekends.
She still has her Hickman line (her second as the first had a fault), fitted under general anaesthetic. She has had 19 general anaesthetics to date, and we’re certainly not done yet.
She has also had 9 blood tranfusions, and 3 platelet tranfusions. A year on her baths are still only an inch deep in order to keep her Hickman line site dry.
Despite all of this, plus much much more, she has never complained.
When Charlie or myself pull on our surgical gloves each evening to administer her chemo she gives a chirrup of joy and says “hurray, the strawberry one” (I mean seriously, this is chemo!) or simply opens her mouth like a baby bird. So trusting.
As a parent of a child with a cancer diagnosis, you feel desperately helpless, facing a situation wildly out of your control.
There is therefore great value in busying yourself doing something positive, often with the added benefit of exercise induced endorphins.
Over the past year both Charlie and I have completed a variety of activities to raise money for our chosen charities.
I completed a 108 Yoga Sun Salutation challenge in May, and in September took part in CLIC Sargent Challenge 60.
In October Charlie ran the Royal Parks Half Marathon. It feels hugely empowering to have a goal, a purpose, in the knowledge you are raising valuable funds for charities that have helped us personally.
We have been lucky enough to have benefited from several charities, some bigger and some very small (a weekend away in a lodge in the New Forest, a wooden mud kitchen, a wendy house).
All just as appreciated. CLIC Sargent helped us wade through the reams of overwhelming paperwork in the early days. Bloodwise funds research into all types of blood cancer.
Ultimately children like Mary have a more positive future due to investment in research and clinical trials on chemotherapy.
There will be more fundraising from us both I am certain, potentially more ambitious when time allows. A sky dive next year for CLIC Sargent perhaps?!
Mary herself continues to be an endless source of inspiration and motivates us – and our whole family – to get through every day.
I may have been lying awake since the early hours churning over bigger worries, or the more mundane tasks of juggling a busy family, and she will come running into our bedroom with a huge smile on her face.
Those worries immediately dissipate. Her smiles is simply too infectious. Her patience, poise, level of understanding are something else.
She has an unusual wisdom and is particularly articulate for a child of her age, probably due to spending the past year with mainly adults and immersed in medical chat.
She arrived in this world in her own style, a matter of hours after us being sent from the labour ward with the words “no sign of active labour”.
Mary had it all sorted, arriving 3 hours later on the bathroom floor – an unassisted home birth. And she sailed through it all.
I will always recall the time my elderly aunt, my late mother’s sister, came to visit from Australia when Mary was around 6 months old.
Sitting around the garden table on a sunny afternoon whilst the children ate their tea she was very quiet, just observing Mary. She then nodded her head, smiled and said “Mary has an old soul. She’s been here before”.
I wholly believe that. She will get us all through this. One day at a time.
With Mary technically in remission from leukeamia, the long term treatment aims to keep it that way.
As Christmas approaches, our second festive season as parents of a child with cancer, we’re currently grateful for her new velvety crop of hair.
Almost as delighted by it as I am, she is keen to try brushing it and adding clips. It is however an excitement I must keep in check.
Yes, we’ve completed a whole year of chemotherapy.
But we’ve still a long way to go.
In honesty the fear of relapse looms large, inevitably in the darker hours in the middle of the night or when I’m over tired, however I work hard to refuse to let it take away the joy of each day with her.
I am never more aware that all we have is today, the now. After all we have experienced over the past year, for that I am very grateful.
Jo works as part of the NatureDocteam (although is not currently seeing clients herself)