A year ago today…Surgery

August 28, 2016

Dear Mayhem, our 22 month old gorgeous boy,

I sometimes catch myself looking at you in wonder and awe. Everything you have been through, everything you have overcome. It has been a year now, a whole year where you have grown, improved, surpassed all of our expectations and have been well…Better than well, you’ve thrown yourself into life head first. A year ago today, you had just turned 11 months old and were scheduled to have life saving surgery to remove the evil mass that was consuming you.

When you were born, we’d had a bit of a hard time breastfeeding because you had a tongue tie, but so had your older brother, Chaos, so we expected it and knew about it. What we didn’t expect, and hated to see, was you being so uncomfortable. You were always a little bit sick after a feed, which was fine, but then you started to struggle after feeding, crying and squirming in pain. It was as though you needed to burp but couldn’t. Reflux medication didn’t seem to help so we sent to see a Paediatrician. We first saw him when you were six weeks old. He asked, ‘what would you like to get out of this meeting’, I said ‘I’d like to find out what’s wrong with my baby, to stop him being in pain’. It was such a long journey before that happened.

We visited our local GP, the Paediatrician and A&E numerous times over the following months. You were prescribed Ranitidine and infant Gaviscon, for your ‘reflux’. Montelukast and two different types of inhalers for breathing problems, and lots and lots of steroids and nebulisers. Your ‘reflux’ took second place as you began suffering from ‘croup, bronchiolitis and breathing problems‘, we became regular visitors to A&E as your breathing problems got worse. You had nights when you woke up screaming and screaming for hours until you collapsed from exhaustion. Nothing worked. I was told to wean you early as you’d be better on solids (I didn’t), that you could be milk protein or lactose intolerant (we both went dairy free for 6 weeks) and that we weren’t feeding you enough (you breastfed constantly and ate tonnes of food by the fistful). Your weight dropped form the 70th percentile at birth, to the 5th percentile.

We saw the same doctors, again and again at our local hospital in Kent. We told them that something was wrong, insisted they look into it, but again and again but we were told that it was definitely all down to the bronchiolitis, your immune system was low and you were susceptible. You were given more and more medication and sent home.

During the summer holidays we visited my mum in Lancashire. I popped into the local NHS walk-in clinic as your breathing was still bothering me, even though you’d been discharged from hospital in Kent only a few days before. We ended up being taken by emergency ambulance to Royal Blackburn Hospital. Your breathing and heart rate were twice what they should be. Luckily RBH had a policy where they wouldn’t release you until you were 24hours off oxygen, so we had to stay in. It was there that we finally met the right Doctor. An angel, your first saviour. A Doctor who agreed with us when we told her that there was something seriously wrong, that it wasn’t just bronchiolitis. A Doctor that ordered blood tests, repeat x-rays and echo and finally sent you for an ECG at Alder Hey Children’s Hospital. A Doctor that helped us finally, finally, find out why you were so ill.

We spent over a month in Alder Hey before your surgery. Luckily we could all stay together as a family. Daddy and Chaos stayed in Ronald McDonald House 2 minutes walk away from our ward. As a non meat eater I’d never been as grateful to that crazy clown, hamburgler and the golden arches as I was then. I stayed with you, snuggled you up tight and co-slept with you on the Cardiology ward. We had always co-slept, you fed so often that it was the only way I could stay sane. There was no way I was leaving you now.

We knew you had a tumour but what type? Until the doctors knew what type of tumour you had they wouldn’t know whether or not to operate or use chemotherapy. The big C raised it’s ugly head and it was so unbelievably scary! You looked like a bruised pin cushion; so many bloods taken, more x-rays, ECG’s and Echos, a CT scan and a biopsy of the tumour. We had to leave you with strangers. For the first time ever, we were apart. I think it hit us then, a huge wave of emotion, panic and despair. We had spent so long knowing you were ill and pushing for answers, that we hadn’t really had the chance to reflect on the fact that you were so very, very ill.

You took it all in your stride, you were so happy and smiling so many nurses and doctors said you were the highlight of their days. Always happy to see a new visitor, you tired to entertain whoever came through the door of our little cubicle. Whilst we waited, and waited for the biopsy results we tired to keep things as normal as possible for you and your older brother. As you only needed oxygen during the night we were free to roam during the day and had some lovely family days out. We were about to head out to the Albert Docks in Liverpool when we were told that Oncology wanted to see you to take some more bloods. The junior doctor who was taking bloods casually mentioned that they would need to check the bloods for clotting ready for your operation tomorrow!

The doctors still didn’t know what type of tumour you had, as the biopsy results were inconclusive, but they suspected it was a benign Thymoma so had decided to operate! You went in for surgery. Your surgeon was a superhero, he was amazing. He had forewarned us that the operation should take around two hours, unless it was complicated, then it would take longer. Luckily your Uncles and amazing Grandma were nearby for support. Uncle Paul and Grandma came to Ronald McDonald house to pick Chaos up and look after him so we could spend time with you in the Intensive Care Unit.

We waited and waited…it was the worst time of our lives waiting to see you, waiting to see if you had made it through, if they had managed to remove all of the tumour…Over five hours later we got the call that you were finally out of surgery.

The CT scan results showed that the tumour was 5 x 6 cm. In reality it was 15 x 10 cm. Humungous. This monstrous tumour, this group of crazy cells, that was consuming your tiny body. It was attached everywhere, through your pericardium, to your aorta, lungs, trachea…everywhere. Your little heart had been so pushed out of shape by this huge tumour that it ended up down near your tummy. Your superhero surgeon said that it was ‘spectacular’, your amazing anaesthesiologist said that it was ‘once in a career to see something like this’. It was a miracle you kept going as long as you had but you did…You made it. They got it all. We could breathe again.

Your recovery in ICU was also spectacular. I pumped, survival instincts kicked in, your eyes opened and you reached for your first ever bottle! We left ICU after two days, back to the comfort of our cubicle and Chaos came back from Grandma’s. We also heard the best ever news, finally, the tumour was a Teratoma and was benign…You didn’t have cancer!

A week or so later we were allowed to leave the hospital…freedom! It was strange being back on the outside but oh so wonderful. We were surrounded by my wonderful family and you had your brother and cousins to help you get better…they say laughter is the best medicine! Now that the tumour was gone you had so much more energy and started to really ‘do’ things. For the first time in a very long time you breathed easily, your cough was gone, you sat up without face planting and even started to cruise! Four new teeth followed the two that came during our hospital stay and you started to make lots of new sounds, babbling again instead of grunting! We relished every single glorious minute!

Your Daddy and I had delayed our starts back working at our school and college until half term, to be there to care for you…but to even think about leaving you to go back to work made our hearts break. We celebrated your first birthday and knew something had to change in our lives. After everything that had happened, there was no way that we could leave you. To see you so close to the edge, fighting to live. Our safe little world had been turned topsy turvy by this terrible tumour and life would never be the same again.

So we decided to do it, quit the rat race, our jobs, our flats and blow our savings to be with you and your brother. We packed our bags and our Bongo (campervan) and hit the road. We arranged to housesit in central Portugal. During our time there you learned how to walk, using the side table as a walker, at the same time you began talking, your first word was ‘Dada’ (he was so happy), so amazing to hear your little voice! We were there by your side to see each milestone, each achievement. Thankful, oh so grateful, that you are well and still here with us.

We hope beyond hope that you don’t get ill again, there’s a small possibility the tumour could regrow. We’ve had lots of follow up hospital appointments, the doctors at Coimbra University Hospital in Portugal were equally as careful and fantastic as in the UK. We’ve been thrown a few curve balls but you keep passing all of the tests and getting the all clear.

Now we are housesitting in Spain, enjoying travelling, exploring, cooking, blogging and loving our family time together, relishing every single moment…yes even the tantrums and fights with your brother, the constant picking up of your toys and upset at scrapes and banged heads; because you’re here, you’re here with us by your side.

We are so proud of you.

Lots of love forever

Mummy, Daddy & Chaos x x x x