Scooby's Syndrome: Part One

Before I write a post in plain English, I just need to include the following to this post (please do not adjust your screens):

Presented with diplopia and convergent squint, MRI revealed a posterior fossa diffuse legion. Seems to have a multi system disease with a strong pulmonary interstitial inflammatory component and hilar lymphadenopathy. Microscopically, there is complete destruction of the alveolar architecture. He was pyrexial, had hepatosplenomegaly and a degree of cerebellar ataxia. Significantly raised IgE (4021IU/L).

That, so I am told, is the medical jargon that described Scooby’s condition in March this year. I know, thanks to the hard work and devotion of the many many doctors that have been involved with our family this year, that there has been copious research done on their behalf, but I just thought I would send this blurb into cyberspace, just in case it causes someone to stumble over it who hasn’t seen it before and may be able to shed some light on the situation.

Of course, it’s more likely to cause infuriation to his current doctors when they google these words one morning and end up here which is of no use to them at all. Sorry Dr Hughes.

So here’s the story in my words (sorry, it’s very long)

One day in January, we noticed that six year old Scooby’s eyes were looking weird – he looked cross-eyed. I assumed he was developing a squint, as Richard had a lazy eye at a similar age, so I booked him an optician’s appointment. When I told him a bit later that he was going to the eye doctor and may have to wear glasses, he said ‘Yes, I think there must be something wrong with my eyes because I don’t think anyone else sees two of everything.’ Turns out he had been seeing double for days without thinking to mention it to anyone – aren’t kids amazing? I was just going to keep the appointment; Richard in his wisdom immediately rang the hospital and was told to bring him in. Their first diagnosis was that inflamed sinuses were probably pressing on his eyes and they put him on antibiotics. But they kept him overnight, just to be sure. I was going slightly mental at home because at this stage I was seven months pregnant and hadn’t been able to walk for weeks. When one night turned into two, I was starting to feel cross – I remember saying to Richard on the phone ‘Tell them your wife is a pregnant invalid with three other children to look after and she needs her husband – can they not just send him home with antibiotics?’

But everything changed at tea time that Friday when my mum and dad turned up at my house. Before I had time to ask how they had got here so fast after work, my dad handed me his phone with Richard on the other end, who told me that an MRI had shown that Scooby had a tumour at the base of his brain and was being transferred to Manchester Children’s Hospital that night. Kaboom. I am so grateful he thought ahead to send them before telling me. I crawled around the house collecting clothes and toothbrushes in a daze while mum and dad fed and loaded up the three boys into the car. We dropped them off at my brother’s house then went straight to Blackpool hospital where I was soon accompanying Scooby, who still seemed fine except for random spiking temperatures, in an ambulance to Manchester with Richard following behind. We were told to give him nothing to eat or drink in case the surgeons wanted to take him in immediately.

That night we waited, while he slept soundly, for what would happen next. In fact, I started contracting after all the activity and distinctly remember lying awake in a bed next to him wondering what the heck Richard was going to do if his son was having brain surgery in one part of the hospital while his wife was giving birth in another. Thankfully the contractions stopped around 7am, and shortly after that, a neurosurgeon came to tell us that they were going to monitor him over the weekend before making a decision. Richard went back home to look after the other children, as I was pretty useless anyway, and we waited for what Monday morning would bring.

It brought a heck of a lot of weird stuff. First was the group of neurologists that came and told us they didn’t think it was actually a brain tumour, but they didn’t know what it actually was. Then the oncologists came to tell us that his blood levels were all over the place which meant that he was very poorly indeed. Then, after a series of scans to assess the rest of his organs, came another big shock – his lungs were completely covered with patches of something. As the different specialists came to the bed, my head was racing as I added it all up – low blood count, growths, secondary sites affected – I couldn’t even ring Richard to tell him because I couldn’t digest what they were saying. Eventually, the next time the team came round, I blurted out what I needed to hear – ‘Is it cancer?’ No, probably not, they reassured me. The first thing they had tested the bloods for was evidence of cancer and they had found none. Also, cancer in children spreads in a different way to cancer in adults and it wasn’t following a recognisable pattern.

That was the good news. The bad news was that the specialists (and they really are – Manchester is reported to be one of the best children’s hospitals in the country now) could not fathom what was happening to him. Not only were the many symptoms posing an issue – the brain thing, the lungs full of something, an enlarged spleen (which showed he was fighting an infection of some sort), the low red blood and platelet count, the double vision and the searing temperatures – but the most baffling thing of all was that he looked fine! It became an almost comical moment when a new group of doctors approached the ward and would look at their clipboards, look at the child on the bed, check the notes of the child on the bed, ask the nurse if they had the right child, and then look back at their clipboards. The patches on his lungs, apparently, looked like those of a pneumonia sufferer who should be on a ventilator, or of someone who had long term lung disease. The scans they saw seemed to have no likeness to the boy bouncing round on the bed and running up and down the corridors.

The first thing they did was start him on a series of TB treatments, as that was a condition that can affect the lungs and brain. The medicine for that was pretty disgusting but outweighed by the fact that he was given his own room in case of infection. This meant we got away with a lot of late night games, TV without ear phones, and visitors who could stay for pretty much as long as they liked. 

As the doctors would come and go, Scooby and I filled our days with stuff that, given the chance, we would have loved to do all day long whether we were at home or anywhere else. He would search through Where’s Wally? books and do drawing and puzzles while I could lay in the bed next to him, almost pain-free for the first time in weeks, knitting and reading books that had been sat on my shelves for months. We read books together, painted model figures and (the highlight for both of us) played board games to our hearts’ content. Instead of always having to tell him I was too busy, or that he would have to wait until Rocky took his nap so we didn’t get our game pieces eaten, I was able to play anything his little heart desired, including a memorable Disney Monopoly that lasted days and was once played till eleven o’clock at night. It was pretty surreal, getting to do things like that and really enjoy it, when we were there for the worst possible reason, but at the same time, we were able to focus on how extraordinarily well he seemed to be, even though scans and tests were showing us that he shouldn’t be.

Scooby became quite a celebrity at Royal Manchester Children’s Hospital. His scans and tests results were on display in the pathology lab for different doctors to see but no one could work out what his inward symptoms and lack of outward symptoms added up to.  As well as the neurosurgeons, we saw the neurologists, the oncologists, the respiratorists, the rheumatologists, the genealogists, the immunologists, and some more that I can’t even remember. Every department wanted to be the ones to crack the puzzle.

He had numerous blood tests and physical examinations, then a lumbar puncture, a sample of bone marrow taken and a lavage of his lungs (fluid washed through to see if they can pick up any of the cells that will show them what is down there). These passed without incident for us – he wasn’t even sedated for the first two – but although they ruled out a lot of possible prognosis, they still didn’t get the answers they were looking for.

Finally they decided the next step would have to be a biopsy of the lung. We were told how the procedure would probably go, plus the other stuff – the worst-case scenario that they have to give you, just in case. He’d already gone under anaesthetic for the lavage, so we agreed, thinking it would be no problem. Down to surgery he went, for what was anticipated to be a ninety minute procedure. After four and a half hours when we had still hear nothing, we were obviously getting pretty worried, when the surgeon himself arrived. He told us he had tried to use the standard biopsy format of three small incisions plus a camera, but they just hadn’t been able to get what they needed that way. So they’d had to cut him open on his right hand side, which meant he was now under recovery in the high dependency unit on a chest drain and under heavy pain medication.

We were absolutely gutted when we went up to see him. The child who had been running round the ward with not a care in the world that morning was now lying drifting in and out of consciousness on an HDU bed with wires and tubes patched to his body all over. A large tube was coming out of his right side to empty the blood and excess fluid coming from his lungs. As soon as he woke up, he threw up over himself, which meant we had to change many of the dressings and the sheets underneath him while he screamed with every movement.

It took another 24 hours for him to come back to his bed on the ward, and although he wasn’t supposed to be in pain now the worst was over, he continued to howl for the next two days whenever he was awake. It was only when the chest drain was taken out that he was suddenly himself again (it must have been pushing on something inside) and within a couple of hours I was suggesting to him that maybe boxing on the Wii in the playroom on the ward probably wasn’t the best idea yet.

The clock was ticking as I was now 37 weeks pregnant and once they were sure he was recovering from the operation okay, they decided to send us home while they continued to track his test results and see what came from the samples they had taken.

After a month in Manchester Children’s hospital, we were free!

I’m going to post this now as it’s taken me over a week to type it in five minute, one-handed stints. I’ll have to follow up with more parts later – sorry it’s taking so long!