the difference between 'if' and 'when'

There was a time not so long ago that I hated Fridays.  They were a day that always seemed to bring bad news.  No matter what was happening, we were always told something bad on a Friday.

However, I'm happy to say, I don’t mind Fridays now!  They have become just another day.  The bad news seems to be getting spread through the week, which is much nicer, because I really didn’t like hating Fridays!

So today is another Friday – even more significant, it’s another Friday the 13^th.  Today marks 14 months.  14 months ago, I was lying in a hospital room in Sydney, I was confused and excited and scared – I'm not sure I've actually moved beyond those feelings really!

But today we are at home, and we hope to be staying here for at least another week!  

 

He pulled through his first round of chemo really well.  We were so proud of him and the way that he handled it.  He continued to eat, continued to play and continued to smile.  There was no vomiting during the round and things seemed to be sitting relatively well with everyone.

We were sent home with all the instructions on what to do in the case of the “if” scenarios.  I realised that, although it was scary bringing him home knowing how sick he would get, I wasn’t scared.  I knew what to do.  I think the nurses were a little shocked at how calm we were – but when I explained that the first time we brought him home there was an incredibly high chance he would stop breathing, they saw where we were coming from a little more.

Our house was cleaned for us and stocked with nappies, gloves and hand sanitiser.  Friends continued to drop around food and things seemed to be going well.

And then the vomits started.  

Big, stinky, grown up vomits were coming out of my little man.  Some with such force that they caused him to poo at the same time.  But he didn’t cry.  He patiently sat as we gloved up and cleaned up.  I used to be a sympathetic vomiter – I'm proud to say, that so far, I haven’t been!

And along with the vomits, the diarrhoea.  Let me say, chemo does some awful things as it tries to leave the body!  But once again, he wouldn’t cry or fuss.  He would look up at us as we changed him together – always a two person job and in the end, give us a smile as we kissed his face, all the while being careful to avoid any cytotoxic slobber that may be present....

Then Saturday came.  At 5.30pm, he would no longer be cytotoxic.  Gloves were no longer needed to change him.  If we got vomit on us, we didn’t need to shower straight away.  We could cuddle him and kiss him and not be scared.

 

But, by that time, we were back in hospital with a feverish boy.  We knew he wasn’t well, we could read the signs and when his temperature hit 37.5, we knew what we had to do.  So calmly, we packed him up and drove into Wollongong, all the while hoping we were just overreacting.

We weren’t.  

What ensued was a four day stay, with two doses of antibiotics given along with a platelet and blood transfusion.  Despite how careful we had been, he had picked up a virus of some sort – he had a cold.  This cold caused his already suppressed immune system to shut down.  All his blood levels dropped – our little man was very sick.

His oncologist wasn’t shocked that we were there, apparently expected it.  So our “if” scenarios have now been changed to “when” scenarios!

But know we know what to look out for.  We know to keep him extra warm in our cold house.  We know to stay away from everyone, but more importantly, we know that we can do this.

It’s going to be a LONG six months.  There are going to be so many tears shed due to frustration and sadness and tiredness.  We will be back to both the Children’s Hospital and Wollongong Hospital.  There will be more antibiotics and more transfusions.  But we know we can do it.

We know that our little man is a true fighter who will push through everything that he gets thrown in his face.

The silver lining in this one?  News spread quickly in the Hospital that we were back.  It made its way to the NICU.  We spent five weeks there and not once did they treat him like a baby.  They pushed him there, they made him step up and do what he should be doing.  They enabled us to bring him home without oxygen and without a feeding tube.  They loved him. 

 

A note was put up on their wall notifying them what was going on.  They called up to pass on their thoughts.  One of his favourite nurses came by and another snuck a look through the isolation door.  They couldn’t believe what we were going through, but more importantly, they couldn’t believe how big he had gotten!  He left the hospital at four months of age, weighing around 3kgs.  Here he was now, at 14 months old, weighing 10kgs!

The love that they showed him all those months ago was still there.  It showed that, while they get so many babies through the nursery each year, we were special to them, and that means so very much.