A bump in the road

Cycle 1 

Days 11-15 (03/07/17 - 06/07/17)

It's been 15 days since we first went to GOSH where Noah started his Chemotherapy. After a rough start we were pleasantly surprised at how Noah was coping. At home he was pretty perky, all things considered. A nasty rash all over irritated him for the first few days at home but was soon remedied with some of Jakey's eczema oitment. He's seemed a little more tired than usual but otherwise himself! One of the community nurses came to do his bloods on Tuesday and he was as good as gold when she accessed his port. His neutrophils were already quite low but everything else seemed reasonable considering his treatment. They told us his blood count would get low 7-10 days from the date of chemotherapy. And so they did.

Day 11

Everything was going so well until we hit Sunday (day 11). Noah was still able to play and run around but he wasn't 100%. He seemed a little lethargic and complained of a tummy ache at lunchtime. His appetite had dropped dramatically but he was still drinking and playing like normal. I knew his appetite would be up and down because the chemo effects his tastebuds.

Day 12

On Monday morning he seemed exhausted from the moment he awoke. It was a bright, muggy morning so I dressed the boys in shorts and slathered the suncream onto his pasty pins before we left for the school run. Noah wanted to sit in the stroller and complained his legs were too cold for shorts. He grabbed his fleecy jumper and used it as a blanket; this was obviously unusual in such warm weather. He didn't have a temperature so I let him watch a dvd on the sofa for a bit. I knew his blood count would probably be at its lowest around now so expected him to be anemic. He wasn't interested in food come lunchtime and his eyes were sunken and grey. To cut a long story short we ended up taking his temperature and found he was slightly warm. Along with all the other symptoms the POSCU advised we come straight in. So we grabbed our emergency bag and made our way there. Luckily I had already asked Ollie to work from home because I was feeling quite unwell with a migraine. Funnily enough it seemed to magically go off when we realised Noah was unwell. There's nothing like a rush of adrenaline to get you fighting fit and well.
So here we are again. The doctors were a little concerned about his port site being red and a little swollen. He'd also complained of it hurting in the last 2 days so they had to give him 3 types of antibiotics via a cannula instead of his port - to cover all likely sources of infection. Its so much easier when they do everything through the port because his veins are so tiny, it really distresses him when they take bloods from his hand. His Neutrophils were 0.0. Neutrophils are a type of white blood cell, if this falls below 0.5 you're considered 'neutropenic'. This means you're very prone to infection so Noah wasn't allowed out of his room for now. His platelets were also extremely low so they gave him a platelet transfusion that night.
It was very difficult seeing Noah like this. Its difficult leaving Jakey at home wondering how much he's missing us. Is this going to have a long term affect on our relationship? Disappearing for days on end with no warning? 6 months can have a big impact on a 6 year old. All these things were going through my head. But all in a matter of fact sort of way. At this stage I think we were mostly distracted by watching Noah go through it all. It breaks your heart to see them go through pain but you can't sit next to them crying too!

Day 13-15 

On Tuesday Noah was still looking quite poorly. He just lay in the bed watching dvds all day. Falling in and out of sleep. He was barely eating anything but was still drinking plenty. They were still using cannulas which they had to fiddle with and replace after so many uses. I felt terrible for him as he became more and more terrified of the doctors and nurses and their box of horrible tricks. He's met so many different doctors and nurses now; he's become very cold and unwilling to engage with most of them. Probably because he doesn't trust them.
By day 14 -wednesday -he had perked up a little and wanted to play a bit more. His blood counts had gone up a little.They started using his port again after an xray and ultrasound showed everything looking normal. This was so much better because once it was accessed it meant no more needles for bloods or cannulas!  At this stage Noah's hair was falling out like crazy. So Ollie brought some clippers to the hospital and we cut it short. I've written a seperate blogpost about this. It was a big deal to me. Jakey also came to visit briefly on this day. Noah was so pleased to see Jakey I thought he was going to spontaneously combust!

Today is day 15 and Noah seems even better than yesterday. He's got an appetite back  (although not for hospital food) and wants to get stuck in with some play. Unfortunately we're still confined to his room because he's still neutropenic. We're waiting for more blood culture results to come back on Friday afternoon to see what the doctors decide. They may want to keep us in for a further 5 days of antibiotics or they may let us go home. Of course I'm dying to go home but I'm also scared the infection will still be lurking and he'll become unwell again.
Ollie has been looking after Jakey at home and I've stayed with Noah in the hospital all week. Ollie always comes up and visits us when Jakey's at school. It must be nice for Jake to have Ollie at home more. He idolises his Dad. But I honestly think the hardest part for all of us is being apart for so long. I feel like our family had been split into two. Each child has a parent but they're missing each other- they're best friends in life and partners in crime. And if I'm honest I'm missing Ollie in the same way.

GOSH have booked Noah's next chemotherapy session in for Wednesday 12th July. They will only go ahead with it if his neutrophils have returned to 1.0 and his platelets have returned to 100. At the moment his neutrophils are 0.1 and his platelets are 55. They said this can take a bit of time when they've had febrile neutropenia (been fighting an infection whilst neutropenic). Fingers crossed they are high enough come Wednesday.