Second cycle: Days 2-7

21/07/17 - 26/07/17

The next few days following the chemo was challenging for all of us. Noah was exhausted and pale, he had no appetite and was feeling sick. We realised that the car is best to be avoided because as soon as we stopped the car he would be sick- his body couldn't cope with the motion. Noah is now terrified of us giving him medicines orally so I had to get creative and try to trick him into having his anti-sickness medicine. This is difficult when he's not eating or drinking much! The day after Chemo I put it in his juice at breakfast time and I was feeling quite pleased with myself after having a little sip and not being able to taste it. My smirk was soon wiped off when he refused to drink it after one sip. I don't know if he tasted it, he overheard me talking about it or if it actually made him feel sick when he drank it. But he refused to drink it and made an odd request for water. Water? He never asks for water! We did eventually get it into him by putting it in a larger more diluted bottle of squash but he would have had one small dose slowly over the period of a few hours so I don't know how effective it was.
Noah's appetite was completely off and his tastebuds seemed to be all over the place. Even when he would try something he would sometimes take a bite or a sip then wince and conplain it was disgusting. He thought water tasted like milk and wouldn't eat anything accept the odd hotdog.
Each day he seemed a little better. I wasn't going to worry about his eating as long as he was drinking enough for the time being. By Monday (24/07) Noah seemed a lot better and was eating a little more. So now its just a watch and wait game. If Noah doesn't get ill again and his counts recover nicely his next Chemo date will be 10/08/17.

I've been surprised in good and bad ways in terms of living with Noah's treatment. The sickness wasn't as horrific as I'd expected. Noah wasn't so unwell that he had to stay in bed and be nursed all day. He just sort of got on with it. On the other hand its hard watching our super happy confident little boy loose trust in us. It's hard to see his confidence shatter in so many different ways. He isn't able to get to the toilet on time at the moment and he finds this very upsetting. Especially as he took so long to toilet train. He's terrified of going to school because he might have an accident and doesn't want people to make fun of his hair. I can't even get him to sit and draw a little picture of himself for his first day of school. He says he can't do it and people will laugh at his drawing. Sometimes at bed time he looks up at me with a pained expression and asks questions about hospital. I explain he has to go back 4 more times for his chemo and thats it but he still gets upset and says he doesnt want to go. He's four years old and hes got all these anxieties going round in his head making him feel scared and doubt himself.  I just want it to be over now so he can go back to living a normal life.
I have never known time move so slowly. Accept for maybe the last few weeks of pregnancy. But that wait was accompanied by excitement and happiness. This wait is accompanied by constant worry. It feels like me and Ollie are playing that game where you try and hold your breathe driving through a really long tunnel. But we're driving at 5mph and I can't see ourselves making it all the way to the end without cracking. Im taking a leap of faith, closing my eyes and hoping for the best.
The other side of that tunnel is going to be a safe happy place; the best Christmas of our lives, a new chapter for us all, maybe a holiday in the sun - something that will give the kids enough happy memories to counteract all the anxieties and uncertainty of the last few months.