We had been waiting so long that we’d become complacent, the limbo of waiting became normal and we allowed ourselves to relax a little, beginning to ignore the fact that Mayhem needed a major operation.  The Oncology team and surgical team were meeting to decide if surgery was the best way forward or if the tumour needed shrinking first to recduce it’s size.  As they now thought the tumour was benign the best option would be surgery but the teams still needed to confirm this and if and when they could complete the procedure.

On Thursday 27 August we were about to head out for the day into Liverpool as the weather was lovely and we wanted to stave off the children’s boredom.  We checked first with he ward sister and she asked us to wait as Oncology wanted to take some bloods.  Poor Mayhem was bit of a pin cushion, they had taken so many bloods over his hospital stay his veins were protesting and his poor arms, hands and feet were covered in ugly bruises.  There was one particular junior doctor who was obviously just not used to taking blood, very shaky hands and a panic stricken expression, coupled with a 10 month old who it was difficult to get blood from, did not make a great combination.  He left without success, a more experienced doctor came to do the bloods for him.  Only to have to come again the next day as he put the wrong label on the blood sample and it was returned from the lab, unusable.

This day the bloods were taken with relative ease, the doctor mentioned that they needed them to check the clotting for his operation tomorrow.  Hubbie and I both looked at each other, jaws open, dumbstruck.  this is how we learnt that we finally had a date for the surgery…BOOM! S**t scared was putting it mildly…

Excerpt from email to family on the 27 August:

‘Just to let you know the operation is booked in for tomorrow morning.  There could be a last minute cancellation is there was an emergency incident but otherwise it should all go ahead.

The surgery will be similar to open heart surgery, a sternotomy, then hopefully a clean removal of all of the tumour. They hope the tumour will not be attatched to anything else and will just peel away. Mayhem will then recover in intensive care for at least one night and they will monitor him very closely to see how he goes from there.

After the tumour is removed they will again send the whole mass to Pathology to 100% confirm it is benign.’


Night before surgery, last scarless chest photo of our boy

The day before surgery, his anaesthesiologist, our consultant and his surgeon all came to see us.  Reassuring and soothing words, pretty much washed over my head.  The consent paperwork mentioned on a 2% mortality rate.  The pessimist in me felt that even these odds were too great.  He was already a very rare case getting the tumour in the first place, he could be equally rare and have problems with the surgery.  I could not imagine life without him.  The mere thought of losing my baby…completely unthinkable.  I wasn’t willing to be this pessimistic, so the optimist in me kept telling hubbie that everything would be alright.  Mayhem was such a tough little cookie, he was a fighter and there was no way that he would let this beat him!

The surgeon was completely reassuring again, we felt that he was the man for the job, so relaxed, so in control.  The nurse sister said, ‘to walk past him on the street you’d never imagine that he was so powerful, so skilful and saved so many lives’.  Yes, he’ll do, we’ll have that one! Mr Rafael Guerrero, Consultant Cardiac Surgeon was present that first day at Alder Hey, he was in the room when we first found out Mayhem had a tumour.  It gave us a strange sense of, ‘meant to be’ and we hoped this was a good omen that he could fix our boy.

On Friday, (yes, another bombshell Friday), 28 August, Mayhem was ready to for his scheduled time of 9am.  Right on time, I walked him down to theatre, laid him down on the operating table and saw the same look of panic and fear sweep across his gorgeous face.  He hated having the mask thrust in his face, but it didn’t last for long, he was soon out.  I knew it had to happen but it was so unbelievably hard leaving him there…

Rafael Guerrero had already told us that if the tumour removal was straightforward then Mayhem would be out in a couple of hours, if it was more complex than the CT scan envisaged then the op would take long.  We waited.  And waited…Chaos was still with us, my eldest brother brought my mum to see us that lunchtime and picked Chaos up.  We didn’t want him to see his brother in Intensive Care, didn’t feel it was fair to put him through that.  Thank goodness for family.  Seeing the family stopped us worrying constantly and kept us a little bit occupied but 2, 3, 4, hours came and went, we knew the tumour was obviously more complex than anticipated…BOOM!

We finally got the call around 2.30pm that afternoon.  He was out and doing well.  Thank God!  I had been expressing a stash of breastmilk.  My biggest concern was how he would feed in the Intensive Care Unit (ICU).  It would be his first time ever in a cot, his first time ever sleeping by himself, we had always co-slept from day dot.

Family email excerpt from the 28 August:

‘He’s through the operation!! What the surgeons thought could be a two hour op turned into five and a half hours, so we suspected things might be more complex than anticipated and they were.

The surgeon said it was amazing and it caused much excitement…he had never seen a tumour like this.  It was massive. 15 cm (6″) x 10 cm (4″).  It was also attatched everywhere, including the heart, lungs, trachea… everything.  Through the pericardium and attached to the aorta.  His heart was so pushed out of place by the huge tumour, it was in his tummy!

It was so much bigger and not what they expected at all. They think they have got it all. Now to await the pathology results as the tumour was not a Thymoma but could possibly be a Teratoma.  Mayhem is doing amazingly, already off the ventilator and hungry! Or amazing boy!!!’

So BOOM! another tumour type.  It was not what they thought, the biopsy was a waste of time, but it was out, and he was doing well..Relief washed over us, thank goodness!