Second Cycle: days 8 - 16
Cycle 2
Days 8 - 16
27/07/17 - 04/08/17
The kids have started to twig how on edge I am around Noah. It makes Jake insanely jealous whilst similtaneously making him grateful its not him being poked and prodded. It's just annoying the hell out of Noah. Every time he winces, yawns, groans or seems unreasonably grumpy I'm there,watching him. Checking his skin colour, looking for rashes and bruises and taking his temperature now and then just in case. He's not quite himself but still just wants to crack on and play. He really is amazing.
Day 12 - 15
Days 8 - 16
27/07/17 - 04/08/17
The kids have started to twig how on edge I am around Noah. It makes Jake insanely jealous whilst similtaneously making him grateful its not him being poked and prodded. It's just annoying the hell out of Noah. Every time he winces, yawns, groans or seems unreasonably grumpy I'm there,watching him. Checking his skin colour, looking for rashes and bruises and taking his temperature now and then just in case. He's not quite himself but still just wants to crack on and play. He really is amazing.
Day 12 - 15
On Monday Noah became suddenly lethargic. Both the boys were late to bed the night before because we had dinner at their cousins house, so I had expected them to both hit a wall of misery sometime in the mid afternoon. But there was something distinctly different about the way Noah was lying on the sofa to the way Jake was lying right next to him. Jake lay there on his belly with his legs swinging merrily behind him in the air while Noah just flopped and rolled around uncomfortably. His face wasn't pale exactly but not quite the right colour, maybe a little yellow. 12 days post chemo was the exact time in the cycle Noah had gotten ill in the first cycle of chemo so alarm bells were ringing slightly. This time he didn't seem obviously unwell but there were still similarities in the way he was. His eyes had small circles underneath them and were slightly puffy just like they had been before. I phoned the community nurse and she said she could do his bloods a day early or I could take him in to our POSCU Ward immediately if I was concerned. I was torm between being pleased it was my decision and being annoyed she didnt just tell me what to do. On reflection we probably should have taken him that afternoon but he didnt seem unhappy or ill and my first instinct was to put him to bed early. I thought on balance it was safe enough to wait until morning for a blood test rather than drag him unwillingly to guildford and deprive him of the sleep he obviously needed that night. I'm still not sure if we did the right thing or not if I'm honest! The Community nurse came at about 9.30am the next morning and phoned a couple of hours later with the results. His platelets were 17 and his neutrophils were 0.0 again. So it was arranged that he would have a platelet transfusion later that afternoon at hospital. We eventually came home that same evening and Noah seemed to be recovering quite well with no adverse affects. I think I actually started to believe that we might get through this cycle with no hospital admissions!
The next two days we had really relaxed lazy days and enjoyed being at home. I let them have as much screen time as they wanted while I was catching up on laundry and binging on bestselling fiction curled up on the sofa. And I geniunely didn't worry that I was rotting their brains away or causing long term damage to their attention span blah blah blah. I just went with the flow and let them do what they wanted ALL DAY. I won't be doing it all the time but I really feel like it was exactly what the doctor ordered.
Day 15 -16
All of sudden late on thursday night/friday morning Noah clambered into our bed with a temperature. I phoned the ward, checked our emergency bag and Ollie took Noah to our POSCU. Poor Noah was crying his little eyes out and blubbering about his wiggly (his port line). I hate seeing him scared most of all. It seems so wrong to see genuine fear on a 4 year olds face. He's always been a bit faint hearted but I can normally remedy it by turning on a light or reassuring him that monsters are entirely fictional, or promising I'll catch him if he falls off the climbimg frame.
Luckily the doctors think its only a cold. Providing all the blood cultures come back negative we can go home on Sunday. I'm sceptical of his blood count being high enough for Chemo next Thursday but we can only watch and wait. Noah's also scheduled to have his first eye examination since his treatment began on the 9th August (the day before his chemo is scheduled). We can't wait to see the results and hope it will give us the strength to push through to the end. This upcoming eye examination is a real milestone for us and we're really hoping it gives us something to celebrate; a reason to justify every little thing Noah has to go through.
Day 15 -16
All of sudden late on thursday night/friday morning Noah clambered into our bed with a temperature. I phoned the ward, checked our emergency bag and Ollie took Noah to our POSCU. Poor Noah was crying his little eyes out and blubbering about his wiggly (his port line). I hate seeing him scared most of all. It seems so wrong to see genuine fear on a 4 year olds face. He's always been a bit faint hearted but I can normally remedy it by turning on a light or reassuring him that monsters are entirely fictional, or promising I'll catch him if he falls off the climbimg frame.
Luckily the doctors think its only a cold. Providing all the blood cultures come back negative we can go home on Sunday. I'm sceptical of his blood count being high enough for Chemo next Thursday but we can only watch and wait. Noah's also scheduled to have his first eye examination since his treatment began on the 9th August (the day before his chemo is scheduled). We can't wait to see the results and hope it will give us the strength to push through to the end. This upcoming eye examination is a real milestone for us and we're really hoping it gives us something to celebrate; a reason to justify every little thing Noah has to go through.
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