Here we go, again.
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”.