The night before.

25.2.18

I spent the best part of my 20s living by the mantra of ‘sleeping’s cheating’, choosing to stay up and party the weekend away without a care in the world.  I always joke with my friends that no matter how many late nights you had when you were younger nothing prepares you for the forced wakefulness of parenthood.

Nowadays, sleep evades me for totally different reasons.  I’ve not slept a full night for around 18months (more than 6 hours in a row).  Pregnancy, newborn and a teething baby as well as the thoughts, scenarios, conversations and arguments I’m having with myself and others about Jack’s relapse.  Given the sleep deprivation and the fact the baby is currently sleeping, I should be in bed too.  I need to make sure the wheels stay on so this blog entry is short.

My mind races with questions;

I wonder whether we will see any new side effects?

Will he be able to go to school normally?

How will we both manage work, business and other interests?

How is it all going to effect the baby? Can I get her weaned from breastfeeding in a weekend without causing her psychological damage?!

What are we going to do about our holidays?

Shall we buy a new car that’s easier to get in and out of?

Are we right to adopt this ‘crack on’ approach or are we not being serious enough about what it all means?’

Has that kid at the farm with the rosey cheeks got ‘slapped cheek syndrome’ and if he has will Jack get it and will it stop him from starting the cycle?

Could we have done anything to stop it from reactivating?

I could go on.

If you have thought of a question the chances are I have too and have probably googled it at some point.  One that has crept up a few times is whether LCH is hereditary (meaning passed through the parent’s genes).  No, its not.  We don’t need to get the baby tested or anything, there have been some cases of family members with the same diagnosis but we are talking about a rare disease. 4 IN A MILLION.

We have used this fact to put a positive spin on the situation;

“Wow Jack; 4 in a million, do you know how SPECIAL that makes you?”

The truth is, kids his age want to fit in rather than stand out, we need to help him understand that it’s OK to fit in and stand out at the same time.

Back to task ahead, the bags are packed (overnight stuff sorted ‘just in case’).

It is a strange feeling to want a day to never come but hurry up at the same time.

We get to taste our ‘new normal’ from tomorrow and we can start the countdown to ringing the end of treatment bell, something which Jack is really looking forward to.

Let the battle commence.

The new consultant.

19.2.18

Being a bit of an optimist I am a believer in the old cliché ‘everything happens for a reason’, today due to various eventualities I had even more reason to believe it.

This morning was the longest ever.  I had had a terrible night with the teething Rubester, I wasn’t sleeping well anyway and I ate too much at the carvery yesterday tea time so was killed with heart burn all night! Me and the kids popped to see my Mum who goes away for a few days’ tomorrow and Lee cracked on with some work.  We planned to leave the house at 1.30 to take the 30minute drive over to Alder Hey.  I had completed a bit of a practice run last week and roughly knew where I was going.  As we didn’t really know whether we would be starting treatment as an in or outpatient I had packed two overnight bags for me and Jack, left a load of expressed milk for the boob monster and filled a rucksack with distractions.

We ended up leaving a bit later than planned, this didn’t really make any odds as the clinic at Alder Hey was PACKED. The waiting room there is small in comparison to the one we had in Manchester and it feels like a gold fish bowl with huge glass windows and doors.  It was clear that some families had had to bring their whol brood with them because of half term and some of the kids had been dragged out of school in their uniforms to attend.  We gave our names and were told to take a seat. Luckily there was PlayStation set up in the corner and a few eager opponents for Jack to play with.  We have sat in them waiting areas for many hours in the past and so knew what to expect. We got there at about 2.30, appointment slot was 3.10 and we got called to meet his consultant at 4.15.

You could tell right away that she was rushing, she was pleasant but professional and apologised for keeping us waiting. She went straight in to it as we all sat down.

She had read through Jack’s notes and reviewed his recent MRI and x-rays with the multi-disciplinary team.  They agreed with Manchester about the treatment plan and she asked whether we wanted to start at the back end of this week or early next week.

We have plans this weekend for Jack’s Grandmas birthday and so next Monday suited us best, he nodded in agreement.

She went on to explain the side effects of the treatment, she explained that Vincristine has very similar side effects to Vinblastine (the chemo drug Jack had first time round & coped really well with, this is encouraging news).  She explained that the prednisolone would be a ‘tapered’ dose, starting high and gradually reducing over the first 8 weeks (roll on the roid rages and midnight munchie!) She then described how the cytarabine (ARA-C) is the one that would cause the most ‘inconvenience’.  She explained why this protocol was being followed (basically due to the rarity of the disease consultants were previously given a sort of ‘free reign’ to choose how they treat LCH.  The diagnostic tools and research improvements mean that the oncology community are now trying to standardise the treatment.  This will ensure the best outcomes for patients and the best chance of picking up any glitches.

I noticed on the treatment schedule that it said after 13weeks there would be a ‘skeletal xray of the skull and hip joint’. I didn’t process this at first as the consultant was responding to Lee’s questions as I was scanning through the paperwork.  When she got to it she said ‘As well as the two lesions in the skull, our radiology team have picked up one on the left hip, and we are keen to look in to the white matter on the cerebellum further, as you know this is a sign of Central Nervous System involvement which is concerning’.  Lee and I looked at each other thinking the same thing.  WHY THE FUCK HASN’T THIS BEEN PICKED UP BEFORE?

Just to recap back to the start of 2017, I had become concerned about Jack having migraines and ALSO complaining of pain in his left groin and leg, usually in the night time.  I raised it with his consultant and they agreed to book an MRI in, a week or two later he was admitted through a&e and the on-call consultant who reviewed his notes slipped up about this ‘white matter’, and it was the first time we heard it.  We hit the roof and the MRI scan was brought forward. We were advised at the time that the reason that it hadn’t been reported to us was because there were no symptoms.  Now, we’ve been pretty level headed throughout the last few years, I don’t consider either of us to be ‘flappers’ when it comes to Jack’s diagnosis and we trust those responsible for his care wholeheartedly.  It feels that on reflection this was the start of a series of errors in judgement and once this journey is underway we’ll be picking it up properly.  For now, Lee and I agree that we need to document it for the benefit of other LCH parents/patients so they feel confident to trust their instinct and know what symptoms, signs and images need paying attention to.

So as well as the MRI scan being brought forward they SHOULD have completed a full skeletal xray and an ultrasound of the main organs.  This wasn’t done until 12months later (two weeks ago) when the brain MRI showed the two new skull lesions.  Luckily Jack has been well in general over the last 12 months, the migraines are under control with proplanolol and the leg pain has been more of an inconvenience and one which we put down to normal growing pains.  It makes me feel quite sick to think that actually he’s had these pains as a result of a lesion that nobody has picked up.  I’m also annoyed with myself for not pursuing it further, a lesson learnt though and I won’t be as laid back in future.

The great news is that Dr Howell and the team at Alder Hey have gone through his case notes in detail.  They have picked up the new lesion, they are doing some neuro-psychological and physiological tests and we both felt at ease that he’s now going to be under the review of; oncology, neurology, psychology, endocrinology and radiology.  Surely with all these ologists he is in safer hands?!

Dr Howell was great with Jack; she spoke to him in a way he understood when he asked her his list of questions.  She told him about the clever people who have researched the best treatments and explained the science behind the lumps.  She also explained they don’t really know what causes it yet though.

Despite the news of additional lesions and confirmation that we were right to be concerned about the white matter changes, I feel a lot more upbeat about the whole situation.  I know fellow oncology parents past or present will agree that you feel safer when you have appointments to attend and you know that ‘they’ are watching your child.  We have a plan, the people who have dedicated their careers to researching, treating and caring for kids like Jack all have their eyes on him.  This is such a great comfort and I honestly feel less lonely than I did last week.

Feeling lonely when you are surrounded by people offering help and support is a bit of an odd one, isn’t it? You feel lonely because although you share the ‘highlights’ of what is going on and what the process is you don’t really want to go there with how you’re truly feeling, what your biggest fears are and as one parent has said to me ‘I’m so sorry you are going through this, I know how you must be feeling but I don’t even want to open that door’.  The door has been opened and now we’ve had the time to edge through it, it isn’t all that scary after all.  We have been there before and we can and will get through it again.  We are lucky to be surrounded by an amazing support network in our families and close friends.  The Macmillan team at Alder Hey have already started doing their bit too.  We know that so long as we buckle up, and focus on the end result we will come out the other end.  We’ll have a few battle wounds, we’ll have shed a few tears but ultimately we will all be OK, especially Mr Astro Jack.

The spiritual side of me believes that there’s a reason all this is happening.  I’ve always known Jack was a special kid but I am starting to think there’s more to it.  More to the ‘why?’ that he keeps bringing up, that perhaps he will go on to study medicine, become a doctor and be part of the movement that solves the riddle once and for all.

Sometimes, not getting what you want is a wonderful stroke of luck.

The Fear of the Unknown.

18th February 2018

The last five days have been all about dealing with lots of different emotions; our own, Jack’s and those belonging to people around us.  Obviously we all cope with things in different ways.  Some people get angry, some get sad and some take comfort in humour.  As a family this last week has been a melting pot of all of them.  I’ve wobbled a lot more this week than I ever have before and have felt the murky greyness of fear creeping in on more than one occasion.  After I’ve let the ‘wobble’ wash over me I’ve spent time considering what triggered it and its always the same; the fear of the unknown.

It feels like a bit of contradiction to write that, one of the reasons for writing this blog was because I felt well versed enough to do it, a paediatric oncology veteran, if you will.  The truth is, at this moment in time we are facing different unknowns to last time.  Again, this feels like a strange thing to say as we have more knowledge about the disease, the treatment, the side effects, the journey ahead.  We know about roid rage (I will definitely be talking more on that in the weeks to come), the possibility of hair loss, line infections, spiking temps, and so on.  What we don’t know is if this journey will be the same as the last one.

You see, when we sat in the consultant’s room in October 2014 and heard about what was ahead we both (Lee and I) felt like we had been hit by a bus.  Unless you have sat in that chair as a parent it is impossible to imagine hearing those words.  You don’t want to imagine it.  The fear in that moment is worse than anything I have ever felt.  As I write this now, I have realised that it’s actually that memory that has triggered the wobbles this last week or so.

During Jack’s last battle with LCH we were surprised (and grateful) that in actual fact all of the awful side effects and stuff that the consultant and Macmillan team told us about, didn’t actually happen to Jack.  His hair thinned but didn’t fall out, he only got admitted to hospital once with a line infection (the week before he was due to have the bloody thing out at the end of treatment!!) and in the main (apart from SERIOUS roid rage) he was what I would describe as ‘well’, for a kid who was receiving regular chemotherapy.  This could be down to a number of factors and I am mindful of trying to keep some of the variables the same this time round.

However, the treatment protocol he will follow this time is different.  There are currently four different types of drug being considered (Vincristine and Cytarabine, both widely used to successfully treat a number of paediatric cancers plus Methotrexate and 6mp which will be given as the ‘maintenance’ part).   The first two would be administered intravenously, over a period of six months and the other two would be taken orally for 18 months.  The plan will be confirmed tomorrow when we meet his new consultant at Alder Hey.

I know that there’ll be people reading this who are wondering if there is a ‘better’ or less harsh way to treat this.  There are lots of articles and schools of thought about alternative medicines, treating with diet and the current buzz around the use of CBD oil.  Believe me I have read A LOT. I am following the research around ‘conventional’ and drug free treatment with keen interest and am always happy to hear from people who are trying these methods either totally to treat the disease or to help with the side effects from chemo.  As it stands, the scientific evidence from top clinicians points to the protocol I have mentioned, and we have made the decision to follow this.  We are absolutely pro-choice and you need to know all of the information before you can make a decision that’s right for your specific situation.

Aside from the fact we now have an extremely smart, inquisitive 7-year-old to contend with (he has composed a list of questions for the consultant tomorrow, all from his own mind) we feel confident that we can keep many of the other variables consistent with the first time we took on the battle.   These range from having a well-stocked cupboard of food, an abundance of distractions (films, devices, activities, carefully selected visitors) to doing everything possible to keep the energy around us all positive, safe, strong and loving, always.  We found that apart from buying ‘things’ that could help nourish him in one way or another, the one thing that money couldn’t buy was a healthy mind-set.  For starters, we went to great lengths to ensure nobody talked about Jack ‘being sick’ around us or him, he wasn’t and isn’t now. We asked

that people asked ‘how are you feeling mate?’ rather than saying ‘ahhh have you been poorly/ill/sick?’.  We kept the mood around him light and happy, unless he himself didn’t want it to be.

We have even had to ask people close to us to stay out of the way, especially if they felt they couldn’t control their emotions.  We even chose to spend less time in the company of those who we felt had too much negative energy the ‘mood hooverers’ we call them.  You see Jack was very in tune with how he and others felt as a three-year-old, and even more now. He has asked me in the last few days if I have ever felt angry, sad or frustrated about him having to go to hospital all the time.  He is asking because he feels angry, sad and frustrated and so I have told him that I have too.  I would never tell him how I am feeling without him asking first.  I think this is too much of an emotional burden for anyone who has the mountain he has to climb ahead, and he is only 7 remember.

We’ve received lots of really kind messages in the last few weeks, I really appreciate the love and support we have been shown.  I especially want to thank the other oncology parents we know, many of whom we know as an online community as well as those we have met in clinic.  Most importantly for us the encouragement we have had from fellow Histio parents/warriors has really given us a boost.  The Histio community is strong but largely unknown, unless you or a family member are diagnosed. We really hope that the biggest outcome from the shit storm (other than Jack kicking its arse AGAIN, and it pissing off for good this time) is that we start a massive awareness movement and encourage loads of fundraising to be done to help the clinicians with research and to support families throughout the diagnosis and treatment process.

So now we’ve agreed to turn the fear of the unknown in to a curiosity for what is to come, and to stop being afraid of what could go wrong, and start focussing on what could go right.

The last week.

13.2.18

Hurihia to aroaro ki te ra tukuna to atarangi kia taka ki muri i a ko” Maori Proverb.  

“Turn your face towards the sun, and the shadows will fall behind you”.

When I think back to last Monday and recall the familiar faces we saw on Ward 84 it feels like a dream, a bad one.  After Jack had had weight/height checked we sat back down and then were called through.  There was a nurse and someone else sat in Dr Makin’s office.  I didn’t notice the dark blue uniform of the Macmillan nurse until after I had heard Guy mention the new lesions.  She wasn’t a nurse I recognised and I can only assume she was there to comfort us if we had had some kind of meltdown.  There was no meltdown this time, as I have said previously I was half expecting it.  Immediately my brain clicked in to practical mode and I shot the questions at Guy quick fire;

“how big are they?”

“are you ordering a full skeletal xray”

“does he need bloods”

“does this mean more treatment & a line insertion?”

“what is the protocol, does he qualify for a study?”

The answer to all was yes (except the study which annoyingly he can’t be included in as he wasn’t enrolled from diagnosis). This is something I need to pick up with the relevant people at a later date.

Dr Makin advised we would be added to the CEPOD list that week and he thought a ‘port a cath’ would be used this time as opposed to the hickman line he had previously.  He also advised that we would need an ultrasound on the liver, kidney, spleen (to check if there was any ‘risk organ involvement’) which luckily there isn’t.  We visited the radiology department, back to clinic for bloods and then were told they would be in touch about surgery.

Lee had gone to work as normal that morning and I text to ask him to call me.  I never know whether this sort of news is best being shared over the phone/face to face or whatever.  Does it actually matter? The silence I heard down the phone was deafening and so I went in to assault rifle mode with the facts, telling him what the plan was without stopping for air.  I’m told I can be a bit blunt at times, in stressful situations I become extremely hard faced, especially if I can sense fear around me.  I am very practical and direct, Lee is very methodical and laid back, we work well together when these shit storms hit.

I don’t recall much from the next two days apart from speaking to the consultant on email and confirming Thursday as the date to be back in Manchester for theatre. My Grandma and two Aunties asked to visit on Wednesday afternoon.  I don’t remember what we spoke about apart from my Grandma telling me I needed to get my hair done and get some make-up on (ha!)Her mantra has always been….just because you are having a bit of a shit time doesn’t mean you shouldn’t look your best, in fact you should look your best ESPECIALLY when you are going through the shit storm (she wouldn’t appreciate the expletives but I’m sure she’ll forgive me).  89 years and more than enough experience to last several lifetimes and she is dead right.  I went to the hairdressers, got my hair done and woke up at 5 on Thursday to put my face on too.

 

When we arrived in Manchester at 8am it quickly became clear that Jack wasn’t on any of the lists.  They allocated him a bed, confirmed he was nil by mouth and left us too it.  Whenever he has had surgery we both go nil by mouth with him.  By 11am I was feeling dizzy, we had Ruby with us and as I’m breastfeeding it quickly became apparent that I would have to sneak off to eat (the guilt!!).  The weather was horrible outside.  As I was paying for my food a woman marched over to the cashier and gave her a right mouthful because there were no pepper sachets left.  It’s funny how stuff like that sticks in your mind.  I was so close to ripping her a new one about how pathetic she was and did she realise that my baby was sat upstairs being starved for the day awaiting surgery.  IDIOT.  Then I realised she was probably a Mum like me too, her baby might have been in surgery and she was trying to distract herself from clock-watching waiting for him to come back up safely.

We managed to distract him with various devices throughout the day; iPod/iPad with loads of messages from his mates and cousins, match attax & slam attax cards etc but he soon tired of it all and started asking to eat/drink.  He went from asking every half hour or so to begging, bartering and offering to buy me an AMAZING birthday present if I just got him some toast….HORRIBLE.

To cut a long story short at 4.15 they came to say he wasn’t being done that day and he could eat.  THANK FUCK.  Hearing your child whimper every time they got a sniff of toast or seen a kid in the opposite bay smiling as they were offered a drink is AWFUL.  He necked 3 rounds of toast, 2 bags of crisps and 2 packs of biscuits and then we headed back to Lee’s parents’ house for the night.  Wine needed.

We met with Jack’s consultant before we left for the day and asked him if we could just be put on a proper list the following week rather than putting him through the drama again the next day.  This conversation will stick with me for a long time.  Basically he told us that CEPOD isn’t really a list at all.  The oncology department don’t have their own theatre list and any child needing a line/port fitted or a biopsy is just ‘squeezed in’ amongst the tooth extractions, tonsils out etc.  The trust can’t justify the cost of having a dedicated oncology list each week as some weeks it would be empty(!).  120 children are diagnosed with cancer at RMCH every year plus about 30-40 like Jack who relapse, that’s roughly 2 each week who need this sort of surgery.   We could see the frustration in his face and that he had clearly had the argument a number of times with the powers that be.  Ridiculous.

Friday 9th February, my 34th birthday, was to be the day our baby would have his new ‘button’ fitted.  We try to be honest with him about what is going on but it’s important to find a way that is easy for him to process and explain to other people (especially other kids) what is going on.  He’s only 7 after all.  They fitted a gripper needle to the port which was in place in case Alder Hey wanted to start his chemo on Monday.  We were told it would need to be out if it wasn’t being used within 7 days.

Unfortunately, we didn’t get to see Dr Makin before we left, he has been incredible with Jack over the last 3 and a half years and we didn’t take the decision to swap to Alder Hey lightly.  Being the complete stalker I am, I have found out a fair bit about the new consultant who will be taking over Jack’s care.  She has a number of other LCH patients in her care which is encouraging.  We will meet her on Monday at her clinic.

When you have any surgery done obviously the wound is dressed to keep the area from getting infected.  Jack has developed a huge fear of plasters/dressing over the last few years.  We had to pop in to Alder Hey on Monday to get the gripper needle removed and he made his presence known.  I am sure the poor nurses will still have ringing in their ears (SOZ!).

The next few days are just going to be strange.  He won’t be going to school in case he picks any bugs up (we don’t want to delay the start of treatment) and he is still sore from the port being fitted.  I suppose you could call it the calm before the storm.  And he knows it.  He’s started to lash out a bit, he’s getting angry, frustrated and asking so many questions.  We foresee that this time round will be harder on him psychologically as he is so much more aware of himself and others than when he was 3.  We really want to hold on to the ‘positive vibes’ but also don’t want him to be afraid to feel the emotions and understand them.

We have a long road to travel, so today I am grateful that we have each other.

 

The Background

Here we go, again.

11.2.18

Getting knocked down in life is a given.  Getting up and moving forward is a choice (Zig Ziglar).

I suppose it’s best to give a bit of a recap before I share the current narrative.  For anyone reading who doesn’t know us; we are The Daley’s.  A relatively normal family of four from the North West of England.  Three quarters of us are Mancunian and one is Scouse.  Our family unit begun in 2002 when Lee & I met in a Manchester nightclub. In 2011 we became a family of three with the arrival of our baby boy Jack.  We officially became The Daley’s in 2014 with the best wedding EVER and last Summer our three become four when Miss Ruby RED joined the team.

So that’s a very potted history of my clan.  I say we are a normal family because on the face of it we are.  We both work a day job, we run a business, we all have interests and hobbies, love holidays etc etc.  Except we’re not normal at all.  Since September 2014 our normal has been flipped right on its head.  You see 2014 was meant to be the best year ever.  Jack was 3, I turned 30, we had hen and stag dos, we got married, we started our business, we had fabulous holidays, I got promoted at work, we thought we had it made.  But …..life is never all plain sailing.

On our second family holiday that year I started to notice a change in Jack (then aged 3 and a half). His previously good appetite had gone, he was drinking a lot and had started to have accidents at night time (he had been potty trained for a while).  When I came home and started looking at the holiday snaps I noticed our chubby little boy was looking thin, and he had faint black bags under his eyes. On the 1st September I took him to the doctors, we were seen by a Nurse Practitioner who frankly looked at me like I was totally stupid.  She rolled her eyes and smirked as I told her that although he was well in himself (he spent the 5 minutes we were in her room climbing on everything he could and asking what various things were) I just knew something wasn’t right.  She made me feel like a neurotic mother, told me the drinking and not eating was ‘behavioural’ and that I should come back in two weeks if there was no change.  No urine taken, no bloods, no cross-checking with a more senior colleague.  An utter shit-show of a professional, and sadly not unusual in stories like ours (but that’s a blog for another day).

At this time Jack was starting nursery, he would be there 15 hours a week and with his childminder Dawn the rest of the week.  We have a brilliant relationship with Dawn and she knew & loves him like her own, anything I was concerned about I told her and she promised to keep a watchful eye.  The teachers at his school were given the same update and I explained about the excessive drinking and asked that they limit the amount he was allowed to drink (I feel ill writing that now I know what I know).  On the 10th of September I got back to my desk in work and noticed I had two missed calls from Dawn and one from the school.  I’m sure all parents will relate to the sinking feeling you get when you see the school calling.  Dawn said she had picked Jack up and the teacher had told her he had been very tired, asleep in the reading corner and when it was home time he was so weak he could barely walk home.  She had settled him on the couch but she didn’t like the colour of him so I told her I was coming to take him to a&e.  This would be the day that turned our lives around.

On the way to a&e Jack fell asleep, by the time we got there he had had an accident in the car and woke up upset and very lethargic.  We saw the triage nurse and they took bloods (looking for signs of diabetes mellitus) and a water sample.  Shortly afterwards we were seen by a Consultant Endocrinologist who listened to me explain the symptoms and this was when I first realised my instinct had been right.  The consultant explained that Jack was showing signs of a rare condition called Diabetes Insipidus (DI), she explained that this wasn’t the diagnosis.  There was a reason he was presenting with DI and it was either related to an issue with his kidneys not processing the hormone Vasopressin properly or his Pituitary gland was not producing enough of the hormone. They wanted to admit him for observation for a few days.  We were admitted to Ward 75 at Royal Manchester Children’s hospital.

Over the next few days various tests were completed and questions asked, the question that kept coming up was ‘Has Jack had a trauma to his head?’, I mean, if you have ever had a 3 year old boy in your care you will know that bumps to the head are a regular occurrence but I couldn’t recall any of significance.  About five days in to our hospital stay I was bathing him and as I washed his hair I felt a small pea sized lump on the side of his head.   I told the nurses and was quickly visited by the on-call Endocrine Consultant, the conversation took place in a side room. All I remember is hearing ‘Langerhans Cell Hisitiocytosis, emergency, MRI, biopsy, ONCOLOGY’.  My head swam.  Oncology? That means cancer doesn’t it? I had to google it when she left to be sure.  I’ve spent three and a half years since that day googling and generally internetting my head off.  When everyone’s asleep I’ll be reading research papers, stories from other parents, the latest homeopathic treatments, Facebook forums, sending virtual love to a family whose child has just been diagnosed, ways to fundraise and so on.  Thank the universe for the internet.

The next year is honestly a total blur, but we got through relatively unscathed.  The treatment was a success and in October 2015 Jack rang the end of treatment bell and finished his chemotherapy.  Elation.

As most oncology parents will appreciate, the end isn’t the end at all.  It’s the start of a new journey. Follow up scans and appointments were in our case MORE anxiety inducing.  When you have a diagnosis and a treatment protocol you have a plan, an end goal and you can count down. When you are on follow-up it’s like waiting for a job interview, your stomach churns as you wait for the consultant to say there’s ‘no evidence of disease’ or no changes since the last scan. This was the case for Jack from October 2015-November 2016.

The radiologists found a signal change on his cerebellum in November 2016. He had no symptoms so no action was taken, it wasn’t even reported to us (again, a story for another day).

In the December, he started having migraines.  In the January, I had him in a&e again with a vomiting bug, that feeling was back.  The on-call oncology consultant mentioned the changes on the last scan.  This was the first I had heard and naturally I went absolutely nuts, emailed his consultant who immediately ordered another scan and put him on quarterly scans throughout 2017.  Each time we went the news was the same, no change.  The migraines were under control with a beta blocker medication called Propranolol and he was looking and feeling well, smashing it in school and his various clubs.  Maybe the feeling was wrong, maybe it’s the hormones from having the baby and sleep deprivation messing with my head?

January 27th 2018 was the anniversary of the regular scans, we went to Manchester, had the scan and Jack stayed over at Grandma & Grandad’s with his cousins.  The following weekend was his 7th birthday and we had 4 days of celebrations. Life was feeling good.

His consultant appointment in Manchester for the MRI results was planned for 9.45 on Monday 5th February.  My Dad came with me, bearing in mind we now live 50 miles away from the hospital and I have the baby to cater for as well as Jack, I needed an extra pair of hands.  I’m glad he was there.  We had the normal weight/height checks and then were shouted through.  My Dad said he would wait in the reception area.

Dr Makin started as he usually did, addressing Jack ‘how are you?’….’good’ he replied. And then he opened his computer screen…..  “As expected, there’s no change to the cerebellum, which is good. But….. The radiographer has spotted two new lesions in the skull”.

He’s relapsed.