Jude

My son Jude was born on 15th August 2008. He was a little purple and blotchy at birth but otherwise fine and we assumed that some babies were just born like that, just a little bit bruised during delivery. It wasn’t until the next day that one of the midwives became concerned and blood tests were done. When later we were ushered quietly into a side room ‘for a little chat’ we knew that the news wasn’t going to be good. We were told various technical blah about blood counts and platelets and white cells, but the only word I heard at the time was ‘leukaemia’.

Only 2 babies are born each year with leukaemia and one of them happened to be Jude. Being so little he only had a 10% chance of survival. We were given the opportunity of taking him home to die. We said no, that 10% wasn’t 0%. It was the kind of stuff that you heard about that happened to other people but this time it was happening to us. Jude was taken to special baby care, we were shifted discreetly down the hallway into a private room for the night and the next day he was taken by ambulance to Birmingham Children's Hospital.

When we registered his birth we had to ask for a book of Baby Names as the original choice for a middle name -Luke -now felt inappropriate. We decided that ‘Lewis’ was a better choice as it meant fighter and that’s what we needed him to be.

During his chemo we stayed at a flat in Birmingham. There was no landline, no computer access, no way for post to reach us, we were both off work – it felt as if we were cut off from the entire world. Ward 15 HDU (Oncology) was now our home. The girls started school at the hospital and I was called upon to paint Xmassy things on the windows in the ward. Ward 15 was a peculiar world of bright fish murals, chirpy nurses, stressed parents, hyperchondriac cleaners and lots of resilient, cheeky little bald kids. Oh, and lots of machines that go Bing Bing Bong (not sure what they were for exactly). There were also the peculiar rituals involving antibacterial wipes, using elbows to open doors and constant washing with handgel...always the handgel.

Jude was doing well, despite all expectations. The doctors were really pleased with him and he had turned into a really beautiful baby by now, winning over many hearts on the Ward. The nurses all cooed after him and wanted their turn at looking after him. The next big task was to find him a donor. It was discovered that he had a highly unusual DNA and this obviously made the task harder but eventually, some stem cells stored in a bank in Milan were found to be a perfect match.On December 2nd Jude had his bone marrow transplant. (Did you know that transplants stink strongly of sweetcorn? Due to the chemicals they’re stored in apparently) A few days later Jude spiked a temperature, he had an infection. Within minutes he had developed respiratory failure and his heart wasn't coping. He was rushed to the Intensive Care Unit, where he was put on a bi-pap machine to help him breathe. Things still seemed to be all right, and the doctors weren't that worried. It was just a little blip...

However they couldn't find the infection, and were treating him blindly. His heart was struggling and he nearly died several times. About a week after he had been admitted to intensive care his breathing got worse, he had to be fully ventilated. But the transplant had been a success, Jude didn't have cancer anymore and if he could get through this he would be OK.

Children’s Intensive Care at Christmas is a very disturbing place to be – especially at night, surrounded by all the cards and helium balloons!

Then the worst came. Jude developed Veno-occlusive Disease. This is a pretty horrendous liver disease that you can get as a side effect of the transplant. There is only one medicine that can treat it, and if you don't respond there is nothing they can do. As time went on we watched our son struggle, desperately praying that he would survive, but he was not responding to the medicine.

At 9.50 in the morning on the 7th January 2009 our son was taken off the ventilator and placed in our arms. He had fought so hard to live but in the end it was all too much for him to take. We held him as he slipped away, and he died at 10.00am.

His cause of death was later diagnosed as Idiopathic Pneumonia Syndrome. At the funeral we asked people to dress in their favourite colours, I read out a poem I’d written, there were songs from Winnie the Pooh & Toy story and we released 145 blue balloons, one for each day he’d lived.

We will miss him forever.

Catalogue Of Disasters Pt 1

I've just bought a new toothbrush. Yesterday I discovered my old one with a piss-filled incontinence towel draped over it, belonging to my tone-deaf, three-toothed, obsessive-complusive, mad-as-a-box-of-frogs Mother-In-Law...

Yes, I'm currently living with my dreaded In-laws in a small terraced house, alongside my wife and two young daughters. Although 'living' is possibly stretching it a bit, unless you add the word 'Hell'. This was never part of The Plan. It was obviously a kind offer (one we're all regretting )and I am grateful for somewhere to live but I can't wait to escape this House of the Nearly Dead, it's stinky grey bleach rags and it's constant Antiques programme re-runs.

As each day passes I feel like I'm slowly cracking up. It's like living with the cast of Last of the Summer Wine.

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Found another of those Granny nappies next to our bed. My eldest daughter Daisy found one on top of her Miley Cyrus book. My M.I.L. obviously thinks they are decorative objects. I wouldn't have been surprised had I found them strewn up around the living room on Halloween . They'd have been scarier than the pumpkins or plastic skulls.

Introduction

Well, it seems like the World has his Wife have started a blog now. (Marjory World's blog incidentally, is quite candid about Ron World's occasional population explosions) So in a bid not to be outdone, I have set up this tiny corner of cyberspace to talk shi- I mean, to further enlighten and elucidate my followers.