Half way through - RL Eye Examination & third Chemotherapy
In the last couple of weeks before Noah's third cycle, I hit a wall. Thankfully the good news following the eye examination has given me a bit of strength to get on with things and push through it. Along with the support of our amazing family and friends, of course.
Royal London Hospital - eye examination
This day had felt like a long time coming. It was the first eye examination since his treatment started and we'd been told to expect the tumor to have shrunk. This means the chemotherapy is working and the chance of saving his eye from enucleation is really good. Noah was booked in on the afternoon list for his eye examination under GA. This time we had Jakey with us who also had his eyes examined awake just to be on the safe side. We asked if Jake could come to one appointment to let him into Noah's world a little bit and let him feel included in Noah's treatment process. I think its important we try and involve him where its appropriate. I thought it was going to be a nightmare having both of them with us but they were actually both amazing. We got to the hospital for about midday but Noah didn't go in for his examination until about 5.45pm unfortunately. He was one hungry boy as he was nil by mouth from 7.30am that day. We met Gemma, the play specialist who was absolutely amazing with the kids and just seems to have the knack of putting a smile on everyones face. We hadn't met her before but she had already made Noah a paw patrol sticker chart and sent it in the post because I told our CNS that Noah is very anxious about visits from the community and gets very upset when his dressings are taken off. So every time the nurse comes or he has his port accessed/deaccessed he gets a sticker on his chart. She also ordered him a special present as the reward at the end and gave it to us for when hes finished it. While we were there Gemma supplied us with lots of lego and gave each of the boys a present for being so good all day too.
It was such a long tiring day trying to keep the kids entertained that we didn't have time to get anxious about the outcome.
Noah was put to sleep through his port which was a lot easier and quicker than the mask. About an hour later the Consultant came up and told us the good news that the tumor had responded well to the chemo and had shrunk. We even got a photo of the tumor before and after the treatment.
(The top image is a shot of Noah's eye when he was diagnosed. You can see the tumor covers a huge area; a thick mass of evil! The bottom image is a section of Noah's eye now. The tumor has reduced dramatically)
The doctor said its unlikely that the tumor will actually shrink anymore even though Noah had only had two cycles of chemo so far. The idea is to stop the cells from multiplying further in the future. So the remaining mass of the tumor will remain in his eye forever which makes me feel very uncomfortable but we were assured that they closely monitor throughout treatment and afterwards for years to come. I'm so very grateful that he's been given such a good chance of keeping his eye and that he has good sight in the other. If everything goes well he may even be able to retain or restore some of the sight in the bad eye with a bit of work. We're feeling very positive about the future but I'm trying not to get ahead of myself about what the future holds. I don't want to sit here worrying about all the things that might go wrong or change for the worse but at the same time I know we've got a long road ahead. But all in all the future looks bright.
Chemotherapy Cycle 3
Every time we go for the chemo the experience has only gotten better and easier. We are well prepared for all the practicalities and know the drill, and so does Noah. Having Jake around certainly helped keep Noah entertained. There were even a group of magicians going from room to room on the ward to put a smile on all the childrens faces and help the time pass a little. Noah got his own personal magic show which had him in stitches. If he remembers any of this I hope he remembers roaring hysterically with laughter at this brilliant magician, I will! The boys played video games, made their new lego sets, and even made a few friends but were still happy to get the hell out of there after 7-8 hours. We were the last ones to leave that day. The journey home we were dreading most of all after last time. But the traffic wasn't nearly quite so horrendous and the antisickness medicine was working well for Noah. We thought Noah was going to be sick at one point and pulled over for some fresh air but he perked up again and we carried on home after about 20 minutes. Ollie stuck to a top speed of 50mph and this seemed to help a lot. Noah even made it home and into bed without being sick once! And more to my surprise, he woke up the next day keen for breakfast. His appetite has been really good this cycle and he's barely shown any signs of sickness at all. Ive successfully been slipping his Ondansetron into his squash. Things are definitely looking up and I'm so relieved and pleased for Noah.
The one thing that has hit me hard from the recent hospital visits is meeting other parents and their children. I don't feel its my place to share other peoples stories on the internet but to meet other children just like Noah and hear what other families have been through is so eye opening. When Noah was first diagnosed and people said 'it's the best type of cancer a child can have', it made me almost angry. But now I understand. It really is the best type of Cancer you can get in terms of preserving life. And so far we're pretty much in the best circumstances when it comes to Retinoblastoma. If it hadn't been spotted when it was, or if the referrals weren't made quickly enough we might be faced with a very different outcome. I can't help but cry for those other children who weren't referred quickly enough. We have a lot to be grateful for. Xx
Royal London Hospital - eye examination
16/08/17
This day had felt like a long time coming. It was the first eye examination since his treatment started and we'd been told to expect the tumor to have shrunk. This means the chemotherapy is working and the chance of saving his eye from enucleation is really good. Noah was booked in on the afternoon list for his eye examination under GA. This time we had Jakey with us who also had his eyes examined awake just to be on the safe side. We asked if Jake could come to one appointment to let him into Noah's world a little bit and let him feel included in Noah's treatment process. I think its important we try and involve him where its appropriate. I thought it was going to be a nightmare having both of them with us but they were actually both amazing. We got to the hospital for about midday but Noah didn't go in for his examination until about 5.45pm unfortunately. He was one hungry boy as he was nil by mouth from 7.30am that day. We met Gemma, the play specialist who was absolutely amazing with the kids and just seems to have the knack of putting a smile on everyones face. We hadn't met her before but she had already made Noah a paw patrol sticker chart and sent it in the post because I told our CNS that Noah is very anxious about visits from the community and gets very upset when his dressings are taken off. So every time the nurse comes or he has his port accessed/deaccessed he gets a sticker on his chart. She also ordered him a special present as the reward at the end and gave it to us for when hes finished it. While we were there Gemma supplied us with lots of lego and gave each of the boys a present for being so good all day too.It was such a long tiring day trying to keep the kids entertained that we didn't have time to get anxious about the outcome.
Noah was put to sleep through his port which was a lot easier and quicker than the mask. About an hour later the Consultant came up and told us the good news that the tumor had responded well to the chemo and had shrunk. We even got a photo of the tumor before and after the treatment.
(The top image is a shot of Noah's eye when he was diagnosed. You can see the tumor covers a huge area; a thick mass of evil! The bottom image is a section of Noah's eye now. The tumor has reduced dramatically)
The doctor said its unlikely that the tumor will actually shrink anymore even though Noah had only had two cycles of chemo so far. The idea is to stop the cells from multiplying further in the future. So the remaining mass of the tumor will remain in his eye forever which makes me feel very uncomfortable but we were assured that they closely monitor throughout treatment and afterwards for years to come. I'm so very grateful that he's been given such a good chance of keeping his eye and that he has good sight in the other. If everything goes well he may even be able to retain or restore some of the sight in the bad eye with a bit of work. We're feeling very positive about the future but I'm trying not to get ahead of myself about what the future holds. I don't want to sit here worrying about all the things that might go wrong or change for the worse but at the same time I know we've got a long road ahead. But all in all the future looks bright.
Chemotherapy Cycle 3
17/08/17
Every time we go for the chemo the experience has only gotten better and easier. We are well prepared for all the practicalities and know the drill, and so does Noah. Having Jake around certainly helped keep Noah entertained. There were even a group of magicians going from room to room on the ward to put a smile on all the childrens faces and help the time pass a little. Noah got his own personal magic show which had him in stitches. If he remembers any of this I hope he remembers roaring hysterically with laughter at this brilliant magician, I will! The boys played video games, made their new lego sets, and even made a few friends but were still happy to get the hell out of there after 7-8 hours. We were the last ones to leave that day. The journey home we were dreading most of all after last time. But the traffic wasn't nearly quite so horrendous and the antisickness medicine was working well for Noah. We thought Noah was going to be sick at one point and pulled over for some fresh air but he perked up again and we carried on home after about 20 minutes. Ollie stuck to a top speed of 50mph and this seemed to help a lot. Noah even made it home and into bed without being sick once! And more to my surprise, he woke up the next day keen for breakfast. His appetite has been really good this cycle and he's barely shown any signs of sickness at all. Ive successfully been slipping his Ondansetron into his squash. Things are definitely looking up and I'm so relieved and pleased for Noah.The one thing that has hit me hard from the recent hospital visits is meeting other parents and their children. I don't feel its my place to share other peoples stories on the internet but to meet other children just like Noah and hear what other families have been through is so eye opening. When Noah was first diagnosed and people said 'it's the best type of cancer a child can have', it made me almost angry. But now I understand. It really is the best type of Cancer you can get in terms of preserving life. And so far we're pretty much in the best circumstances when it comes to Retinoblastoma. If it hadn't been spotted when it was, or if the referrals weren't made quickly enough we might be faced with a very different outcome. I can't help but cry for those other children who weren't referred quickly enough. We have a lot to be grateful for. Xx
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