Two Years Since Surgery

August 28, 2017

It is only now, with the wonderful gift of hindsight that I realise that we spent a good portion of the last two years in a kind of shock and disbelief at what happened to you.  I never thought it was possible.  I never dreamed or dared to imagine that our child, our baby, could be so seriously ill.

Two years since surgery, my how time flies.  It has the ability to make you gloss over every. little. detail but we still remember…possibly things we wish we could forget.  Actually no, we don’t want to forget, as without every little thing that happened, we would not be here today, here in Portugal, living a completely different life than we were two years ago.

Two years since surgery.  We had no idea of the outcome, we clung onto the only 2-3% chance of death with this type of operation.  We tried to ignore the fact that you were already in a very small percentage of babies who were seriously ill and needed life-saving surgery because you had a tumour.  You looked so very well, so smiley and full of life but you weren’t, the tumour was slowly but surely taking control; squishing your tiny body’s major organs, making you gasp and rasp for breath, making your heart work twice as fast as normal, making you gradually fall off the percentile charts for height and weight.  The tumour was a parasite, doing a very, very good job of slowing but surely killing you.  Whatever type of tumour you had, because even after all the tests, procedures and biopsies they were still unsure, the tumour you had was rare. Making you so very different.  We hoped that this is where this particular type of uniqueness ended and longed for a ‘normal’ eleven month old baby boy.

We used to call Friday’s bombshell Fridays, because we were always delivered a new piece of news from our group of Doctors at Alder Hey.  It’s a tumour in the heart…no it’s not…it could be cancer…it’s probably not cancer…we need to put a permanent line ine…no we don’t…we think it’s a…insert any random fact here…  So when we woke on the proposed Friday morning of the operation we were expecting to be told that the Op was off due to a major emergency, but no, it went ahead. I walked you down to theatre in your colourful gown and said goodbye to you in the anaesthetic room. You were surrounded by a huge number of medical staff, people who were going to save your life. It was so difficult to leave you there, not knowing how long the operation would be, not knowing what would happen, only knowing the operation needed to happen and you were in the best possible hands to pull you through.

The surgeon, who is indeed a real life superhero had told us the night before during our pre-op briefing that he was expecting the operation to only take two hours, if, IF the tumour was easy to remove. If it was more complex, it would take longer. So we waited. My Mum and eldest brother arrived to take Chaos back with them and keep him busy, jumping on the sofa with his cousins. We did not want him to see you after the operation, thank goodness for Grandma. It made the waiting less tedious but we still waited for what seemed to be a lifetime, for much, much longer than the wished for two hours. Finally five and a half hours later we got to see you. The operation had been long because it was much more complex than they anticipated. What they thought was an easily removable small tumour on top of the heart, was in fact a huge 10 x 15cm tumour that was everywhere, attached to everything, through the walls of the heart and pretty darn invasive.

The medical team said it was an operation of a lifetime, such a huge tumour the likes of which they would probably never see again, I hope not for the next patient’s sake. Our amazing sense of relief that you were through the op was unmeasurable but, there always seems to be a but doesn’t there, we were so very anxious that you would react badly to the drugs, wires and our first ever night apart as you were recovering and still under the effects of the anaesthetic. You did have a small itchy reaction to the pain medication but that was quickly fixed and our fears were abated once you finally came to and gave us your  classic Mayhem smile.

It was the hardest and scariest day of both of our lives, but also one of the best because the surgeons managed to fix you. They managed to fully remove the tumour, a painstakingly long operation by such wonderfully skilled professionals, thank goodness, they saved you!

In the two years since surgery we have had numerous check-ups, loads more bombshells and you have had oh so many blood tests and procedures, in the UK, in Portugal and in Spain, you have had some fantastic aftercare. Your zipper scar and biopsy and lumber puncture scars have healed. Your scars have evolved from the raw gaping wound and angry red scar to a silvery grey. We play a game when we zip up your tummy and chest on top of your scar and then tickle you. It feels important that you should be proud of your scars and know where they came from, that you a fighter and a survivor.

We have been oh so very scared, on oh so many occasions, about your wellbeing and your future, about the tumour regrowing, because it could, but you’re here and you’re well. Better than that, you’re doing so well that your heart has now fully recovered and is functioning 100% perfectly after being oh so squished and so is everything else. Our last plethora of tests in Spain came back ‘normal’, you really do have to love that word when it comes to health!

Two years since surgery and you’re normal!

Love Forever Mummy & Daddy xxxx

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