If your child, or a child of someone you know is ever diagnosed with cancer, and they live in or nearby Yorkshire, they will pass through, and in most cases be treated by one of the Leeds hospitals.  If you do not believe this could happen to you, please consider the story below.  We too believed this would not happen.  Until it did.

Saturday 21st November, 2020

“Incy Wincy spider climbing up the spout,

Down came the rain and washed poor Incy out.

Out came the sun, and it dried up all the rain,

Incy Win…”

…hold on a minute, something here isn’t as it should be, I thought, as I failed to get a smile from Ted, instead concentrating on what could only be wind in his tummy, as he had definitely not got a solid blockage, yet he felt a little bloated.  We agreed that this felt a little unusual, and as we sat on the settee as Elsie insisted on a ‘snuggle’ before tea, we deliberated over whether to call 111, mainly to clarify if they thought Ted’s clammy skin was anything to worry about considering his current temperature was a decidedly average 36°.  This would be the most important call we would ever make. When Ted arrived at Scarborough hospital, they did the usual checks, heartbeat, blood pressure; this was a little high.  Coupled with this was an instantaneous check of the abdomen, which quickly raised alarm bells, and a call to the x-ray department to get a closer look.  The call that came home after this was a precautionary tale - a look to the following day where Elsie and I would be able to visit.  15 minutes more into the ‘Half-Blood Prince’, the phone rang again, only this time the voice was unfamiliar, as the Doctor, undoubtedly concerned, explained that I should make every effort to get to the hospital, as “they will be transferred to Leeds as soon as we can get the specialist children’s ICU transport here from Barnsley”.  

When I arrived, Ted was a quiet, calm, yet almost lifeless version of himself, his eyes almost resonating a kind of acceptance that he knew he had got to that point under his own steam, bravely, perhaps super-humanly, and would now be able to share what he had endured with us, as his parents and protectors; we could finally begin to learn of the hidden truth, and from there we could begin to carry him through it rather than unwittingly carrying him despite  it.  The MRI scan found Ted to be a little lively, perhaps agitated at the lack of rest he was able to get, having probably being in a learned discomfort for some time.  I like to think that Ted let out all the frustration he had probably carried on his own to this point, and could finally bare all knowing he had managed to tell us.  He was never on his own, but now we were definitely united. 

The team from Barnsley arrived just as the results came back, and the doctor informed us Ted would be going to the Specialist cancer Unit at Leeds General Infirmary. 

“Is that what you think it is, cancer?”…“Yes, that’s what I think it is, I am so sorry”.

Edward James Thomas was born at 9.50am­­­­ on 22^nd April,2020.  He weighed 8lb 2oz, and gave us a beautiful surprise as we realised that, amongst our joy that he’d safely arrived, he was a boy, joining Elsie, his very excited  and ever-adorable big sister, in making us a perfectly even family.  How lucky we were, and we are thankful daily for the cards we have been blessed to be dealt.  Our Teddy was born with a slight lack of oxygen uptake in his blood, that is, his deoxygenated blood was ever so slightly lacking in residual oxygen.  In short, some of it was getting lost somewhere.  In the euphoria that followed “it’s a boy”, as we drowned in our collective tears of joy,­­ we hadn’t realised that Ted hadn’t begun breathing by himself – an issue many Caesarean babies have as they forego the natural clearance of their lungs through the birthing canal – as he was discreetly whisked from the bed, and into a side-room that housed that bed with those life support thingies that nobody ever needs.  Ted needed them.  His blue colour was a tell-tale sign of a baby who had not yet taken a breath, and seemingly countless doctors gathered in what can only have been seconds, as he slowly responded to the oxygen mask, and the refreshing red tinge began to flood his skin.  When the mask was removed, and I saw this colour quickly revert, I recognised he was in trouble. Ted would be in intensive care for a short while, as he found his feet, in a scene that personified our own living version of ‘Wires’, the song immortalising the line through the crescendo at the end of the song after a difficult struggle… “I see it in your eyes, I see it in your eyes, you’ll be…alright”. 

He will be alright.  He will be alright. 

Hours turned to days, and in a blink of an eye, Ted had reached a week old, yet to breathe the sea air, and yet to absorb the first moment of love with his sister, a point in time that will remain with us, and that we relive daily, as Elsie opens her heart and swallows Ted whole, something that with the slightest of effort he mirrors, his head bowing excitedly and his smile radiating warmth in the opposite  direction to hers; they are simply beautiful.

Being born in a time where the law banishes people from exercising their usual liberty is somewhat of a chore.  Ted was able to meet some of his adoring fans, yet some had to wait.  In a somewhat cruel twist, the moment you want to share with the world is somewhat stolen when a global hiccup, or perhaps a cough given the circumstances, prevents you from following your usual instinct, and you have to dig deep in your reserves to prevent yourself from questioning the fairness of it all, when all you have done is the right thing, yet for him, you can’t follow this same ethos.  Still, Ted took this in his stride, and in many ways, we were lucky to have him to ourselves, without fanfare or fuss, just being, in our own little bubble of life.  As time went on, Ted would begin to find his feet, but in the mean-time, he was one grumpy baby!  It is fair to say Ted was initially difficult to please, and for longer than most babies I am aware of, that smile for which we had waited so long, turned out to be wind.  When it did eventually come, it rivalled his sister, in being the most beautiful sight, a warm glow to warm even the sternest of hearts; he can effortlessly quiet a room, and draw people to him, with barely a flinch of the corners of his lips, and when his eyes join the party, hearts involuntarily melt.  I worry for the conversations we will have to have when he begins breaking hearts.

As the summer passed, we began to build a collection of memories, amidst lots of firsts; a trip to the beach, meeting grandparents, cousins, aunties and uncles… all the things we would usually take for granted.  Ted continued to develop nicely, along the same sort of lines as the books that you rely on the first time round would tell you.

But this time, something wasn’t right.  It would take us a while to recognise this, but in the end, that parental instinct that probably resides in the depths of most of us, would notice a change that would lead us along the most unlikely, at times petrifying of paths.

“Your child has cancer”.  The words that no parent ever conceivably imagines hearing, much to the point that the very thought of it arrows a sickening blow to the core of any human being’s heart, sending the stomach into some sort of catastrophic collapse, with legs struggling to support the body, as you reach to the nearest immovable object just to hold you upright.  In my case, at the first point of not needing to be strong, I almost fell over, caught only by a sturdy pair of knowing hands.

You will be forgiven for not being able to necessarily put yourself in our shoes, for not being able to imagine what that must be like, and I assure you, it is not something either Amanda or I would ever want anybody to feel.  Joining a ‘top 100 club’ is so often a positive experience, but as you begin to let the truth of this despicable news sink in, and you realise that neuroblastoma ‘only affects100 children in the UK each year’, you instantly recognise and feel the pain of all those other ‘lucky parents’ who have had to endure this moment, and the tens of thousands who have learned news of other afflictions with a similar magnitude and varying, equally horrific potential outcomes for their children.

During the afternoon of Friday 4th December, Ted was formally diagnosed with neuroblastoma. Our consultant Danielle sat us down to tell us the full diagnosis and treatment plan.  Ted had a tumour, to the right of centre, in his abdomen, probably adjoining his kidney or adrenal gland, that to date had grown to a size of 14x11x9 cm.  On the scan, his kidney was squashed against his skin, with the mass taking over more than one side of his little body.  It was truly a sickening site, and goodness knows how he had allowed it to be there without giving us any clue of discomfort or irritation.  Ted would be given a course of treatment that would begin with four cycles of chemotherapy, with three days on the treatment for three hours at a time, and the remainder of the cycle would be recovery time.  Ted would need to be in hospital as an inpatient for each period of treatment, and would have a scan at the half-way point, to check progress and effectiveness.  Ted’s foreign invader would be measured by the scan, and would need to be reducing until the end of cycle 4, where hopefully it would be small enough to operate on, and remove.  The size of the tumour meant that at this stage, it was encompassing other organs, and it would be much clearer to see what was going on with less mass.  Ted was to lose his kidney, but his other one should and will be enough to cope with the demands of daily life.  I recall when we learned of Ted’s shunt at birth that he wouldn’t be able to deep-sea dive.  A small sacrifice, we thought.  But this time the consultant went on to discuss briefly what he probably shouldn’t be doing in later life.  Boxing.  Ok, we can cope with that, as Amanda breathed a sigh of relief, along with a kind of motherly huh, as if anyway, he’s too small.  “What about rugby?” I asked.  The problem with losing a kidney is that you have to take great care over the other one.  Any activity that may cause an issue to it in terms of injury should be avoided.  Here we are, Ted not yet 8 months old, and we are already limiting Ted’s life opportunities.  I don’t apologise for being selfish in this regard, as the feeling of the unfairness of it all is unavoidable, especially when considering as a parent you want life to offer every opportunity to your children that it can.  It’s strange how we had already talked about Ted playing for the local Union team, and sadly ironic that we were watching the game when we found the problem; no amount of any sporting activity (or any other) being limited could outweigh Ted being alive, but my goodness is it difficult and angering to know he has done nothing wrong, yet has already had some of his life mapped out for him.  He will no doubt be as stubborn as his parents, and as such we will wait and see where he decides to take this advice.  Towards the end of the meeting, Danielle told us about the risks associated and moreover some of the side effects of chemotherapy.  Ted may lose his hair, be more sick, he may experience diarrhoea and nausea.  These were all things we could live with for the potential positive impacts of successful treatment.  What was more disconcerting was how we should monitor him.  As a parent, it’s true that you have a level of instinctive decision making, that you probably hone over time.  However, rarely is that instinct consciously and deliberately drawn upon to make decisions that will have a direct impact on effective treatment of a very dear little life in the balance, notwithstanding that we had followed our instinct to get Ted to this point in the beginning.  We would need to look out for certain changes to his movement, his manner, his appearance and bodily routines, and make live risk assessments as to what action to take, whilst administering a variety of drugs, to control blood pressure, and to reduce pain.

Wednesday, 6th January, 2021

Ted has so far had two rounds of chemotherapy, spending over 30 nights in hospital to date, being cared for by some of the most wonderful human beings we have ever met.  He has had some hiccups, added to the routine scans, blood transfusions, procedures to insert both a Hickman line to his heart to administer drugs and a feeding tube to help him maintain weight that he is currently struggling with... and he has taken everything that this disease can throw at him with a smile, at times a chuckle, and occasionally, a tear; he has been joined by us in all of these emotions as we have journeyed together.  To say that he is brave, to me, suggests some kind of choice in his options for how to deal with this; he has no choice.  So in light of this, I will put simply, that he is the toughest person I know, and we are proud of him every second.  Ted has displayed courage, dignity, dogged determination; he has rewritten the definition of resilience, and he embodies this daily.

At times like this, people often look towards charity involvement for an outlet, a steer on the mind to drive something more positive as an alternative to the living hell that they are experiencing.  It can be difficult to gain support, with so many amazing charities out there that are desperate for recognition, and financial aid in furthering their work for this good cause and that.  Put simply though, childhood cancer is such an unforeseen, despicable blight on an individual and their family.  Moreover, the feelings of despair, the unfairness, the questions, spread far beyond the bounds of those directly affected.  We went from watching a game of rugby, to 24 hours later being in Leeds, 50 odd miles away, and from having two healthy, happy babies to one of them fighting for his life.  We didn't see this coming.  God forbid it should ever happen to you, but if it does, we certainly pray that the Candlelighters staff are there to meet you, and help keep the light burning for whatever the duration of your collective 'stay'.

The Candlelighters charity offers vital support to anyone touched by Children's cancer in Yorkshire.  They support in a variety of ways, ensuring that this horrific experience is made as simple as it possibly can be.  They rely solely on donations through fundraising.   You can check out the charity at their website:

https://www.candlelighters.org.uk/

The first time I ever heard Ted laugh (beyond a kind of stifled shout!) was on a short clip taken on ward 31 at LGI.  He was just over 7 months old.  I had to double take to realise what had just happened, as I was awe-struck by the activities he was experienced through the play worker.  Her role is funded through Candlelighters donations.  Families who travel for treatment can be torn apart by being split from each other for lengthy periods and through financial pressures.  Candlelighters provide clean, safe and comfortable accommodation nearby to keep families together at the time when that is most certainly of the utmost importance.  Both Amanda and I have found ourselves feeling all sorts of emotion, and on occasion that can become too much.  It isn't always easy to talk this through with each other, especially within the constraints of Covid.  There is nothing brave in dealing with these feelings alone; we will both be engaging with Talking Therapy.  This is provided by Candlelighters.  Finally, to allow Amanda and I to see each other regularly, to share the burden of our current predicament, Amanda has to leave the ward, leaving Ted behind where he can be cared for; Candlelighters staff stay with him, keep him comfortable, and keep him happy.  Thank goodness they are there.

I will be running the Leeds Half, hopefully with some other family and friends, and have attempted (probably clunkily) to set up a team page on here whereby anyone who wants to raise money with me can join, with your own individual fundraising page, being attached to my team page to show support for Ted through Super Ted's Miles; hopefully, through raising a collective sum for Candlelighters, we can turn Super Ted's Miles into Super Ted Smiles for other young people in years to come.  A mile can refer to any milestone, whether that be a fitness goal, learning an instrument, losing weight (this is an added bonus of mine!); anything you can do that you will throw your heart and soul into raising money for.  After all, this is not just about Ted.  Any child of a close family member, friend, work colleague, could stumble unwittingly into this disease, and they will undoubtedly rely on the skill, love and care of this fabulous charity.  It is safe to say, we would not have coped as well as we hopefully are doing without them.  I am very happy for you to link this rallying cry in your 'story' in order for your family and friends to gain an understanding of what Ted is up against.

If you want to join and fundraise in your own way, this would mean the world to us; that moment when you have said to us 'if there is anything at all...', this is it.  You can join me here, or by clicking JOIN THE TEAM on this page.

https://www.justgiving.com/team/SuperTedsMiles

Of course, I appreciate that time is often of a premium, and not every reader will find this to be your cup of tea.  Please spur us on through sponsoring me with anything you can give, and share Ted's story with your family and friends, and via social media, if not to raise funds, simply to spread the message of children's cancer and the amazing people out there that perform such fabulous work in our locality.

Ted's story is ongoing, and we remain hopeful of a positive outcome for him.  Thank you so much for your support so far; we remain stronger together.

SuperTed's dad

Update 4th March:

SuperTed had his scan yesterday (after 4 cycles of chemo) and now we await the results. A critical time for Ted, we hope this may lead straight into the operation, where there will be little room for error. Spring is here; whilst every day feels as raw as the first for that split second you remember, we have enormous hope that Ted is pushing through this with a steely toughness that will ensure the intricate surgery is a success. We have to have faith in the special people who will hold his life in their hands. Stay positive and keep squeezing your loved ones tightly x

Update 26th April:

Our little boy had his operation and much of the tumour was removed. This was a very difficult time for Ted and he ended up in intensive care for a period of time. Change happens slowly but we are hoping Ted will now have a period of monitoring whilst his body recovers. Scans in the next couple of weeks will hopefully show positive results.

Update 29th August:

SuperTed has now been in partial remission for a couple of months.  His scans following the operation showed the tumour had remained attached to the blood supply to his right kidney, but they had left the kidney in as they had positive signs it would recover.  Unfortunately, because the kidney had been pushed to one side of his abdomen, the blood supply had stretched and it is likely to have been this that has in essence prevented the kidney from surviving.  He will not need further treatment on this as long as that part of the tumour matures up into normal, harmless cells.  Ted is tough and with care he can live with one kidney, though it is frustrating to think he may have to avoid certain activities.  The tumour had also attached to his liver, and there is a sheet of it the length of the base of the organ.  This will need to be monitored as if it begins to grow further we will need to create a new plan, starting from scratch.  Fingers crossed!

Since the scans post-op, we have also had Ted's hearing tested.  He is struggling with high pitched noise that will affect his ability to hear during the formulation of speech.  This damage to nerves was caused by one of the chemo drugs, something not uncommon; we knew there would be risks, and Ted will have to wear hearing aids to ensure he does not fall behind in development.

On Thursday last week we headed to Candlelighters to stay ready for the MRI scan on Friday, to check for how the tumour is responding.  We are hopeful for positive results next week!  Ted took a while to come round from anaesthetic but was soon eating very well indeed and we came home and have had a fab weekend with him and his sister.

Update 20th December:

Whilst it's fair to say this year has been a challenge, I am so proud of my family for what we have achieved. The most important perhaps is the immense bravery and strength of character that Ted has demonstrated during what must have been a most painful and often frightening experience. We are so proud of him. And secondly to Elsie, our beautiful girl, who has not gone untarnished in dealing with her parents prioritising keeping her brother alive, yet she has taken it so much in her stride, with such maturity and endeavour; she really is so unflinchingly strong. Ted continues to flourish and has so far managed to keep further growth at bay. Time with both our children is so precious and we continue to hope / pray that Ted continues to maintain good health and build further on the strength he has equipped himself with.

I've decided to finish the year as I started... running! Perhaps in many ways for maintaining my own strength and sanity, I'm attempting a 5k a day for December. So far I've managed over 100k since starting on the 1st; hopefully I'll be well over 100 miles come new year's eve. This will be well over any monthly total since starting our fundraising.

Super Ted's Miles has taken so many people with us on Ted's journey, and we are awestruck by the generosity of all who have contributed. Thank you so much for your kindness of spirit. Our debt will be paid in time by ensuring we give everything we can as parents to ensure Ted, and Elsie, have the best possible life opportunities. 

Look after each other x