Cycle 4 & 5
It's been way too long since my last post and for that I'm sorry. Lots of people have been asking where my posts have gone and I wish I had had the perseverance to keep it up throughout - if not for family and friends, for the sake of the mental load inhibiting me.
Speaking for myself it's gotten to a point where my whole entirety - mind and body - is so exhausted that all I can muster up the energy to do in the evenings is zone out staring at the television. I've not slept well in a long time and there are times I can't focus enough to read a an email without having to reread it several times nevermind write a coherent post! So forgive me if this is paragaph after paragraph of mindless jibberish.
Since my last post Noah is two cycles on (number 5!) and has had another eye examination under GA. Everything is still going in the right direction and the tumor is reacting well to the chemo. There haven't been any out of the ordinary complications from chemotherapy and we can finally see the end is in sight.
Cycle 4 was an interesting one; a mysterious rash 8 days post chemo, Ollie was away in Texas for a whole week and we had our first blood transfusion. All along with the regular platelet transfusion and febrile neutropenia. We were able to time Ollie's work trip to Texas at the best time possible in the cycle. And my lovely Dad came and stayed with me for a few days just in case there was an emergency - like Noah getting a severe rash in the early hours of the morning! They gave us some piriton and finally sent us on our way at about 4am on a school night. The following week we were particularly alarmed when we took Noah in with a temperature because he had a reading of 40° and it refused to go down for 2 days, reaching 40.6° at its highest. I was sat by his bed anticipating a fit but it eventually went down and we were let out 5 days later. He needed platelets on that admission and his hb was very low so he needed a red blood cell transfusion too. It was the most bizarre thing to watch him being hooked up to this huge bag of blood and seeing the colour and energy flush into him like magic. This was also the first cycle where he had more than one admission. But luckily the second admission was just a flying 48hr visit. All in all probably the worst cycle yet.
It is hard but we are so near the end of his treatment. Noah's last cycle is due on the 9th November. I imagine his body will start to recover from that cycle 3-4 weeks following. He will then have another eye examination on 22nd December to confirm that the tumor hasn't/isn't growing. We'll then have eye examinations every few weeks until they feel it's safe to leave it longer between examinations. As every trace of the chemo leaves his body Noah will truely start to recover from this massive ordeal. I can't explain how happy and hopeful I am that he'll get to enjoy christmas as himself, with not a worry in the world accept what Santa's brought him.
Speaking for myself it's gotten to a point where my whole entirety - mind and body - is so exhausted that all I can muster up the energy to do in the evenings is zone out staring at the television. I've not slept well in a long time and there are times I can't focus enough to read a an email without having to reread it several times nevermind write a coherent post! So forgive me if this is paragaph after paragraph of mindless jibberish.
Since my last post Noah is two cycles on (number 5!) and has had another eye examination under GA. Everything is still going in the right direction and the tumor is reacting well to the chemo. There haven't been any out of the ordinary complications from chemotherapy and we can finally see the end is in sight.
Cycle 4 summarised...
Cycle 4 was an interesting one; a mysterious rash 8 days post chemo, Ollie was away in Texas for a whole week and we had our first blood transfusion. All along with the regular platelet transfusion and febrile neutropenia. We were able to time Ollie's work trip to Texas at the best time possible in the cycle. And my lovely Dad came and stayed with me for a few days just in case there was an emergency - like Noah getting a severe rash in the early hours of the morning! They gave us some piriton and finally sent us on our way at about 4am on a school night. The following week we were particularly alarmed when we took Noah in with a temperature because he had a reading of 40° and it refused to go down for 2 days, reaching 40.6° at its highest. I was sat by his bed anticipating a fit but it eventually went down and we were let out 5 days later. He needed platelets on that admission and his hb was very low so he needed a red blood cell transfusion too. It was the most bizarre thing to watch him being hooked up to this huge bag of blood and seeing the colour and energy flush into him like magic. This was also the first cycle where he had more than one admission. But luckily the second admission was just a flying 48hr visit. All in all probably the worst cycle yet.
Cycle 5
So now we're 13 days into cycle 5. Noah got the same rash again as last time but it seems to magically disappear after 3 days so it's not a great worry. Although it is horrible to see him in such discomfort from it, as it's extremely itchy and inflamed. Once the rash had disappeared Noah promptly got a temperature which required antibiotics so Ollie took him in at 3am on Tuesday morning. Ollie stayed in with him this time which feels a bit odd for me but perhaps necessary. I normally like to know exactly what's going on with him at all times and make notes on everything but I think its been good to take a step back and spend some time with Jake. We can't wait to see them both tomorrow though!Starting school
Another exciting note; Noah has started school since my last post. It's so nice to see him going off to school with his friends and getting a little bit of normal when he's up to it. Noah's diagnosis has had a dreadful blow on his confidence and he was feeling scared and overwhelmed by the thought of it. It's still overwhelming for him if I'm honest. But I think so long as its not putting him at risk and he's well to do so, I'd much rather send him in than not. The hard thing for me about school is I can't help but see how sick he is next to his peers. I've had to explain to children why he's got no hair or why he goes home early. This doesnt bother me, children are brilliantly inquisitive and can't mean any harm at that age. It bothers me when I see Noah's sheepish sad little face when they ask all their questions about why he's different. But its only short term and he still has loads of lovely little friends at school. Not to mention how amazingly supportive all the staff at the school are and even all the Mums. It makes a massive difference. People are always quick to remind me he looks pretty chipper all things considered (which is fine because it's a great positive thing to point out). But sometimes I feel like we're not quite looking at the same person. When I look at him now I find it hard to agree he looks 'well' or 'happy'. His skin is never quite the right colour anymore, his beautiful long hair has been killed dead in its tracks and replaced by whispy baby fluff desperately trying to grow, his eyes are dark and his skin is dry. And no matter how happy he seems in the moment, the sheer lust for life and 'no care or worry in the world' attitude has changed to a more fearful outlook. There is always fear of sickness lurking close by ready to jump out and ruin the fun and bring us all back to the brutal reality of what cancer treatment does to a child. And to think, we are the lucky ones!
It is hard but we are so near the end of his treatment. Noah's last cycle is due on the 9th November. I imagine his body will start to recover from that cycle 3-4 weeks following. He will then have another eye examination on 22nd December to confirm that the tumor hasn't/isn't growing. We'll then have eye examinations every few weeks until they feel it's safe to leave it longer between examinations. As every trace of the chemo leaves his body Noah will truely start to recover from this massive ordeal. I can't explain how happy and hopeful I am that he'll get to enjoy christmas as himself, with not a worry in the world accept what Santa's brought him.
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