4 down 26 to go

Alex started radiation therapy this week. Both Phil and I went in with him so as to get an idea of the routine, since at that point we thought we would both be taking turns in taking him in. As we checked in at the front desk there was a TV in the corner tuned to one of the morning programs, and a very talented singer – Sara Bareillis – was singing a song. All I caught was the chorus, but it was so appropriate I thought for a moment that it had been played deliberately, the song was ‘brave’ and the chorus lyrics are
“I wanna see you be brave”.

There are many things of which can be said the first time is the worst, and I can count starting this therapy among them. We have now completed four treatments and now we have the routine down the process isn’t so bad. We have been feeling apprehensive about this treatment for some time and it turns out the anticipation is worse than the reality – at least so far. As yet Alex hasn’t shown signs of the side effects, the nursing staff say that the nausea and ‘sunburn’ usually show up after 2 – 3 weeks of treatment.
It must be said that Alex is handling the situation far better than we are. He is actually looking forward each day to going to the hospital – to the point of being quite upset that we don’t get to go over the weekend! This has made the early starts vastly easier, since he is up as soon as he hears the shower running, gets dressed and is ready to go in record time! Part of the anticipation is the fact he gets a sticker every visit to put on his poster, and he gets to choose the sticker. The nurses have found him some special 3D tactile stickers and they are dinosaurs!

Alex is really amazing when it comes to the anaesthesia too. Since his treatment lasts approximately 30 minutes and no sane person would ever expect a 4 year old to stay still for that long, Alex has to have a general anaesthetic every day. The Womens and Childrens hospital sends over a paediatric anaesthesiologist over every day, and they have a trick of using a lip gloss stick on the inside of the face mask to make it smell nice. Alex holds the mask to his face himself and was asked on the first day if he could smell anything. They had used a strawberry lip gloss that day and Alex decided he could smell the colour red. We aren’t quite sure why but he then expanded this idea and said he could smell all the colours – red, yellow, pink, green, purple, orange and blue. Those of you familiar with the rainbow song should recognise the pattern! The anaesthesiologists have all tried – with varying degrees of success – to repeat the colours Alex can smell, and have all been firmly told off when they failed to repeat the colours in the right order!

Alex is no stranger to general anaesthetic, having needed one for every MRI, and coming out of anaesthesia has always been a bit trying, he wakes up a bit grumpy and upset and can take quite a while to calm down. Since the steroids he is currently taking make him a bit grumpy and upset anyway we were a bit apprehensive about his reaction to these wake ups. As it turns out though I seem to have a bit of a magic touch this time round, when Alex starts to stir and get grumpy, as soon as I can convince him to sit on my lap he calms down, a few minutes later he asks to sit on the chair by himself and then asks for his hot dogs! Once he’s eaten them we are all good to go! Having the anaesthetic repeatedly instead of once every few months is making the process more familiar for him and he comes out of it each day better than the one before.

The plan originally was for Phil to take Alex in for treatment, for me to stay home and look after Jenny, and at an appropriate time drive in to collect Alex so Phil could go straight to work. Since I am now taking Alex in, Phil’s parents – who live quite near us – have said they will take Jenny every morning so Phil can get to work at his normal time. When Alex has finished treatment we hop in the car and collect Jenny on the way home. Since Phil was a bit worried about having to miss work to get treatment done we can’t begin express how grateful we are to them for this.

The support around us while we are going through this treatment is extensive and heartwarming. So many people have stepped in to help us, the staff at the WCH and at the RAH have all been incredible, both Phil’s and my parents have been utterly indispensable, Alex’s kindy have been super supportive and one of Alex’s kindy friend’s mum has done an amazing amount of cooking for us!
Alex’s kindy and the primary school are also having a ‘little heroes day’ to raise money for the Little Heroes foundation, and on that day the kindy are also going to have a ‘tactile day’. Their chosen day is the 3rd of November which is coincidentally the day of Alex’s last treatment, and we are hoping he will be well enough to drop in to the kindy for a while once his treatment is over.

Since Alex’s attendance at kindy has been a bit patchy of late, when we did make it there for a visit the other children were asking me where Alex had been. As they seemed to be quite concerned Phil and I wrote a letter to the other parents at kindy – which the kindy very kindly distributed for us – explaining what had been going on so they could explain to their kids what had been happening. Since the letter went out Alex’s kindy his teacher Jane has been asked several times if there is anything that can be done to help.

The answer is yes. Give blood.

While I know this won’t specifically help us right now, during his chemo treatment Alex needed over 20 blood transfusions, both of whole blood and of platelets, and during his initial surgery in 2013 he was given 1.6 liters of blood. To put that amount in perspective, the average 3 year old has approximately 1.2 liters of blood.
All the people out there who rolled up their sleeves and gave blood literally helped to save his life.
At this stage we don’t need any specific assistance, however, this may very well change if and when the side effects of treatment start to show up, and it is hugely comforting to know that if we do need help all we have to do is ask.

This first week hasn’t been as bad as we were anticipating, we can only hope the next 5 will be as smooth, and that the promised side effects are not as horrible as we fear.
we’ll keep you posted!