Noah's first Chemotherapy Cycle
Everyone's been asking us about how Noah's first visit to Great Ormond Street went. We've been through so much emotional turmoil I can't possibly explain how I feel in a Text message. When people ask 'How is Noah?' I look at him playing as if nothing has happened and say 'Yeah, he's Okay'. But he's not Okay. He's scared and confused. His world has been turned upside down and he's been through so much already and this is only the beginning of his journey. He's coping amazingly, is what I should say. We're all coping because, that's what you do. So for those who want to know how our little boy has been and what he's been through I've written a little account of events during his first chemotherapy cycle.
Noah's Chemotherapy comprises of 3 drugs: vincristine, carboplatin and etoposide. He will need 6 cycles of chemotherapy given roughly every 3 weeks. In between treatment he will have his eyes examined under GA to make sure the treatment is working. The chemo is administered Intravenously and Noah has had to have an Implantable Port fitted which he will have for the duration of his Chemotherapy. As far as I understand, this is a small tube that is fitted under your skin and goes to a vein near the heart. It's accessed via a special needle that goes directly into the port and carries the drugs to the vein. Once the special needle is in drugs can be administered intravenously and blood can be taken from it without too much discomfort to Noah. A community nurse will be doing weekly visits at home, where she will do blood tests through the port to check his blood counts. They've given us some numbing cream to put on his port area before the nurse comes tomorrow and I'm fretting that I will somehow manage to do it wrong. I think its still a little sore and the steri-strips still haven't come off. I really hope it doesn't hurt him when they access it!
Day 1 -Tuesday
We got to the hospital for about 10am on Tuesday morning (20/06/17). He had an afternoon slot in theatre for his port to be fitted. We got shown to our room and around the ward. All the staff were lovely although rushed off their feet. They had a couple of play rooms and some lovely play workers. This came in use as Noah was fasting until after his surgery so we had to distract him from the hunger. He went down to the anaesthetist at about 3pm. This time we both went down to hold his hand while they put him to sleep. It's a hard thing to watch as your baby goes limp in your arms; all you can think about is him lying there on the operating table being poked and prodded. Our CNS from Royal London came to talk to us as we came back to the ward. While he was asleep she explained our shared care and answered any questions we had. Noah came back up at about 4.30pm. It had all gone smoothly and Noah didn't seem as confused or uncomfortable as the last time he had General Anaesthetic. He just laid there and rested. I wondered if he was more relaxed because he was more used to the effects of the anaesthetic, or if he was in less discomfort than the last time. What's more uncomfortable, waking up after having your eyes pushed around and examined or waking up after being sliced open and having a tube fitted inside you??
They had accessed his port in surgery so it would be ready to use for chemotherapy the next day. We were so surprised at how well he was coping with everything. He didn't complain, just seemed a little groggy. He perked up after about an hour and a half, but his face was all blotchy and red. The doctors concluded it was just a minor reaction and could be treated with Piriton; it disappeared within another hour. All seemed to be going well and we set up camp for the night besides him awaiting his treatment the next day.
Day 2 - Wednesday
Noah had some fluids through the night because the doctors didn't think he'd been drinking enough. He seemed to have recovered really well and was in good spirits all things considered. At 10am they came to start his treatment. They first gave him some anti-sickness drugs and then gave him the Vincristine. This one is just a syringe full of liquid and was given by hand through his port. Then they started him on the Etoposide. This took about 2 hours and didn't seem to bother him too much. He continued to play and watch Nick Jr like nothing was happening! About 12pm they started his last lot of chemo. This one would take 4 hours. Before each chemotherapy drug they gave him anti sickness drugs too because they said its more effective as a preventative. Noah seemed fine and continued to play and watch TV until an hour and a half in. He suddenly looked unwell. He looked tired and just lay on the bed. His skin changed colour, his face was quite pink. We asked if he was ok but he said he was fine in a very irritated sort of way. We let him lay on the bed watching intently. He started to get more and more irritable at everything we did and said. His body couldn't keep still like somebody with an itchy rash. We told the nurse and she suggested some Oramorph in case it was pain. This did not go down well. He held it in his mouth for almost 5 minutes before running under our bed and spitting it out on the floor. He was getting really distressed and couldn't give us a clear reason why. This escalated until he was inconsolable and refused to come out from under the bed. He wouldn't answer to anybody and looked so confused and scared. We worried it might be pain but he had made clear he wasn't in pain. The doctors came to see him and tried to figure out what it was and came quite quickly to the conclusion it was a reaction to the cyclizine, an anti sickness drug they had given him before the last lot of chemo. They said it could give people an out of body experience, give them hallucinations and make children very scared or confused. We were really shocked that one of the drugs they'd given him could have such frightening side affects and felt so awful that he had to go through such a horrible experience. After an hour of agony he calmed down. I will never forget our poor baby cowering under the bed screaming, shaking and crying in anger 'that medicine makes it horrible!', he just kept saying it pleading with us to make it stop. Anyone that knows Noah will find this difficult to imagine. They've marked that certain drug (cyclizine) as an allergy and no nurse or doctor will ever give it to him again under our watch. That name is ingrained into our brains forever. The other anti sickness drug they had given him was Ondansetron, which he seemed to tolerate really well through his port.
Whilst all this was going on they had put the chemotherapy on hold in case it was a reaction to the chemo. When he had finally calmed down and they started it again we'd lost an hour and a half. Another hour passed and he'd managed to eat and drink a little and stay relatively happy with the things in his room. We carefully went for a little walk around the ward with machine in tow. Noah was getting tired and fed up and didn't know what to do with himself. Then he managed to snag the line on the bed as he was climbing up. He said it was stinging so I lifted his top to see there was liquid dripping down. When I realised this was the Chemo drugs I ran to get a nurse and stripped his clothes off. They stopped it immediately and we cleaned him up. They took the dressing off and the needle had completely come out. I was so annoyed at myself for letting that happen. We'd been so careful walking around the ward and he only had a little time to go and now the poor boy had to have it dragged out even more. We had to wait for his port to be re-accessed and for a new lot of chemo to be made up by the pharmacist. So he'd have to wait until tomorrow for the rest of it.
That night we were very distressed after seeing Noah going through so much in one day. Unfortunately it wasn't over yet. A nurse came in to do his observations around 10.30pm. I noticed she looked concerned so sat up and she was scuttling around him trying to take his temperature again. She told us he had a temperature of 38.9. If a chemotherapy patient gets a temperature over 38 they need to be monitored and given antibiotics straight away to fight off any potential infection. Blood tests need to be done and you need to wait 48hrs to see if the blood cultures show any infections. This would mean another 48hrs in hospital for sure.
Day 3 - Thursday
As soon as they discovered the temperature they put him on antibiotics, gave him some paracetamol to bring the fever down and took blood tests. All while he was fast asleep! The following morning he pretty much seemed himself again. Around 10am they gave him the rest of his chemotherapy which took another 4 hours. Once he had finished his chemo they looked to transfer us to Royal Surrey because of the fever. He needed to be monitored until the blood culture results came back. They booked transport for 4pm so Ollie went back to my sisters and picked up the car and made his to Royal Surrey to meet us. At 4pm we went downstairs to meet our driver. It was just an ordinary taxi and I foresaw that we would be reaching Guildford at rush hour so was feeling a little nervous about the long car journey there. Fortunately Noah slept for most of it and Ollie was waiting at the hosptial when we got there.
We made our way to The Hascombe Childrens Ward. This is where we will go whenever Noah seems uwell, needs a blood transfusion, antibiotics or monitoring etc. We have a direct line to the Ward and have been told we must come straight here should Noah ever have a temperature or seem unwell in any way during his treatment. It gives us great peace of mind knowing any concerns will always be taken seriously and all the precautions and plans are in place.
We were shown to yet another room much the same as the last and Noah was given his antibiotics. The staff from RL and GOSH had stressed it was important to give anti sickness drugs in the first 2-3 days of chemo as a prevention. They find that once the sickness starts it's more difficult to stop it and often means that following treatments are more likely to induce sickness. We asked if they were going to carry on with the IV Ondansetron and the nurse went to ask the consultant. The nurse came back a little while later to tell us it was going to be given orally. Ollie and I looked at each other whilst thinking exactly the same thing. We'd both been there the day before watching our son hold a whole syringe of liquid in his mouth for as long as 5 minutes before spitting it out in rage. He had been hiding under the bed whilst a room full of doctors and nurses explained to us that the medicine they'd given him may have given him an out of body experience. He was not going to let us give him another syringe full of medicine. We tried to fight for IV ondansetron but they were insistent it must be given orally. As predicted this did not go down well and even after we managed to get him to swallow some he puked it all all over himself. I was feeling quite cross that he had to be put through this unnecessary discomfort. He was a little queasy and sat up and gagged a few times throughout the night but was otherwise fine.
Day 4 - Friday
In the morning he had his antibiotics and they continued to do their obs. We asked if they could now give him the anti sickness intravenously because he was feeling sick after not getting any the night before. Again they insisted that we try orally, but this time maybe try the dissolvable sheets that sit on the tongue and dissolve in a few seconds. We told him it would stop him from feeling sick. It was all new to him and looked completely different to the liquid medicines he had become so afraid of. He was very cooperative and stuck his tongue out. Ollie put it gently on his tongue and told him to close his mouth. He closed his mouth and made a sour face but it was all done in 15 seconds. I thought it was a success, until another 20 seconds later. He gagged and then brought up his entire stomach contents. At this point I felt he had lost all trust in us. As far as he's concerned, he couldn't see much out of one eye but other than that he was perfectly healthy and happy. We took him to the hospital to supposedly make him better and he's subjected to the worst week of his life. We keep telling him these medicines are going to make him feel better but all he can see and feel is all the nasty side affects. I feel so sad for him. He's been such an amazing little star despite all the complications. They eventually agreed to give the IV Ondansetron through his port. Once they did the sickness went away, his temperature hadn't spiked since Wednesday night and we were all desperate to go home. Now we were closer to home we were finally able to see Jakey. Ollie picked him up after school and they came to the hospital for a few hours. It was so lovely seeing them together again. A little bit of normality for poor Noah. They sat and watched Minions in the hospital bed together before Ollie took Jakey home. We all hoped that the blood tests would come back clear the following morning so we could finally go home.
Day 5 - Saturday
The next morning Noah slept in a little because he hadn't slept well that night. Almost before he opened his eyes he said 'Is Jakey here yet?' This morning went incredibly slowly and Noah was well and truly fed up. He was also suffering quite badly from diarrhoea from the antibiotics which was fun. Me and Ollie were feeling exhausted in every way possible. The blood tests from GOSH came back clear which meant they could stop the antibiotics and discharge us. This took a little while and it was about 3pm before we finally got discharged. Noah had a little rash on his back that the consultant had a look at but she wasn't too concerned so off we went.
Noah was so ecstatic to be leaving, his little legs tumbled down those hospital corridors faster than I've ever seen them go before. I expected to feel so relieved when we got home but somehow I felt almost overwhelmed at returning to normal. To return back home to everyday tasks like a mountain of washing, suitcases to unpack and dinner to make after such an exhausting week, I didn't really know where to start. But the main thing was the boys were home together, playing and fighting just like any other weekend; for now.
Noah's Chemotherapy comprises of 3 drugs: vincristine, carboplatin and etoposide. He will need 6 cycles of chemotherapy given roughly every 3 weeks. In between treatment he will have his eyes examined under GA to make sure the treatment is working. The chemo is administered Intravenously and Noah has had to have an Implantable Port fitted which he will have for the duration of his Chemotherapy. As far as I understand, this is a small tube that is fitted under your skin and goes to a vein near the heart. It's accessed via a special needle that goes directly into the port and carries the drugs to the vein. Once the special needle is in drugs can be administered intravenously and blood can be taken from it without too much discomfort to Noah. A community nurse will be doing weekly visits at home, where she will do blood tests through the port to check his blood counts. They've given us some numbing cream to put on his port area before the nurse comes tomorrow and I'm fretting that I will somehow manage to do it wrong. I think its still a little sore and the steri-strips still haven't come off. I really hope it doesn't hurt him when they access it!
Day 1 -Tuesday
We got to the hospital for about 10am on Tuesday morning (20/06/17). He had an afternoon slot in theatre for his port to be fitted. We got shown to our room and around the ward. All the staff were lovely although rushed off their feet. They had a couple of play rooms and some lovely play workers. This came in use as Noah was fasting until after his surgery so we had to distract him from the hunger. He went down to the anaesthetist at about 3pm. This time we both went down to hold his hand while they put him to sleep. It's a hard thing to watch as your baby goes limp in your arms; all you can think about is him lying there on the operating table being poked and prodded. Our CNS from Royal London came to talk to us as we came back to the ward. While he was asleep she explained our shared care and answered any questions we had. Noah came back up at about 4.30pm. It had all gone smoothly and Noah didn't seem as confused or uncomfortable as the last time he had General Anaesthetic. He just laid there and rested. I wondered if he was more relaxed because he was more used to the effects of the anaesthetic, or if he was in less discomfort than the last time. What's more uncomfortable, waking up after having your eyes pushed around and examined or waking up after being sliced open and having a tube fitted inside you??
They had accessed his port in surgery so it would be ready to use for chemotherapy the next day. We were so surprised at how well he was coping with everything. He didn't complain, just seemed a little groggy. He perked up after about an hour and a half, but his face was all blotchy and red. The doctors concluded it was just a minor reaction and could be treated with Piriton; it disappeared within another hour. All seemed to be going well and we set up camp for the night besides him awaiting his treatment the next day.
Day 2 - Wednesday
Noah had some fluids through the night because the doctors didn't think he'd been drinking enough. He seemed to have recovered really well and was in good spirits all things considered. At 10am they came to start his treatment. They first gave him some anti-sickness drugs and then gave him the Vincristine. This one is just a syringe full of liquid and was given by hand through his port. Then they started him on the Etoposide. This took about 2 hours and didn't seem to bother him too much. He continued to play and watch Nick Jr like nothing was happening! About 12pm they started his last lot of chemo. This one would take 4 hours. Before each chemotherapy drug they gave him anti sickness drugs too because they said its more effective as a preventative. Noah seemed fine and continued to play and watch TV until an hour and a half in. He suddenly looked unwell. He looked tired and just lay on the bed. His skin changed colour, his face was quite pink. We asked if he was ok but he said he was fine in a very irritated sort of way. We let him lay on the bed watching intently. He started to get more and more irritable at everything we did and said. His body couldn't keep still like somebody with an itchy rash. We told the nurse and she suggested some Oramorph in case it was pain. This did not go down well. He held it in his mouth for almost 5 minutes before running under our bed and spitting it out on the floor. He was getting really distressed and couldn't give us a clear reason why. This escalated until he was inconsolable and refused to come out from under the bed. He wouldn't answer to anybody and looked so confused and scared. We worried it might be pain but he had made clear he wasn't in pain. The doctors came to see him and tried to figure out what it was and came quite quickly to the conclusion it was a reaction to the cyclizine, an anti sickness drug they had given him before the last lot of chemo. They said it could give people an out of body experience, give them hallucinations and make children very scared or confused. We were really shocked that one of the drugs they'd given him could have such frightening side affects and felt so awful that he had to go through such a horrible experience. After an hour of agony he calmed down. I will never forget our poor baby cowering under the bed screaming, shaking and crying in anger 'that medicine makes it horrible!', he just kept saying it pleading with us to make it stop. Anyone that knows Noah will find this difficult to imagine. They've marked that certain drug (cyclizine) as an allergy and no nurse or doctor will ever give it to him again under our watch. That name is ingrained into our brains forever. The other anti sickness drug they had given him was Ondansetron, which he seemed to tolerate really well through his port.
Whilst all this was going on they had put the chemotherapy on hold in case it was a reaction to the chemo. When he had finally calmed down and they started it again we'd lost an hour and a half. Another hour passed and he'd managed to eat and drink a little and stay relatively happy with the things in his room. We carefully went for a little walk around the ward with machine in tow. Noah was getting tired and fed up and didn't know what to do with himself. Then he managed to snag the line on the bed as he was climbing up. He said it was stinging so I lifted his top to see there was liquid dripping down. When I realised this was the Chemo drugs I ran to get a nurse and stripped his clothes off. They stopped it immediately and we cleaned him up. They took the dressing off and the needle had completely come out. I was so annoyed at myself for letting that happen. We'd been so careful walking around the ward and he only had a little time to go and now the poor boy had to have it dragged out even more. We had to wait for his port to be re-accessed and for a new lot of chemo to be made up by the pharmacist. So he'd have to wait until tomorrow for the rest of it.
That night we were very distressed after seeing Noah going through so much in one day. Unfortunately it wasn't over yet. A nurse came in to do his observations around 10.30pm. I noticed she looked concerned so sat up and she was scuttling around him trying to take his temperature again. She told us he had a temperature of 38.9. If a chemotherapy patient gets a temperature over 38 they need to be monitored and given antibiotics straight away to fight off any potential infection. Blood tests need to be done and you need to wait 48hrs to see if the blood cultures show any infections. This would mean another 48hrs in hospital for sure.
Day 3 - Thursday
As soon as they discovered the temperature they put him on antibiotics, gave him some paracetamol to bring the fever down and took blood tests. All while he was fast asleep! The following morning he pretty much seemed himself again. Around 10am they gave him the rest of his chemotherapy which took another 4 hours. Once he had finished his chemo they looked to transfer us to Royal Surrey because of the fever. He needed to be monitored until the blood culture results came back. They booked transport for 4pm so Ollie went back to my sisters and picked up the car and made his to Royal Surrey to meet us. At 4pm we went downstairs to meet our driver. It was just an ordinary taxi and I foresaw that we would be reaching Guildford at rush hour so was feeling a little nervous about the long car journey there. Fortunately Noah slept for most of it and Ollie was waiting at the hosptial when we got there.
We made our way to The Hascombe Childrens Ward. This is where we will go whenever Noah seems uwell, needs a blood transfusion, antibiotics or monitoring etc. We have a direct line to the Ward and have been told we must come straight here should Noah ever have a temperature or seem unwell in any way during his treatment. It gives us great peace of mind knowing any concerns will always be taken seriously and all the precautions and plans are in place.
We were shown to yet another room much the same as the last and Noah was given his antibiotics. The staff from RL and GOSH had stressed it was important to give anti sickness drugs in the first 2-3 days of chemo as a prevention. They find that once the sickness starts it's more difficult to stop it and often means that following treatments are more likely to induce sickness. We asked if they were going to carry on with the IV Ondansetron and the nurse went to ask the consultant. The nurse came back a little while later to tell us it was going to be given orally. Ollie and I looked at each other whilst thinking exactly the same thing. We'd both been there the day before watching our son hold a whole syringe of liquid in his mouth for as long as 5 minutes before spitting it out in rage. He had been hiding under the bed whilst a room full of doctors and nurses explained to us that the medicine they'd given him may have given him an out of body experience. He was not going to let us give him another syringe full of medicine. We tried to fight for IV ondansetron but they were insistent it must be given orally. As predicted this did not go down well and even after we managed to get him to swallow some he puked it all all over himself. I was feeling quite cross that he had to be put through this unnecessary discomfort. He was a little queasy and sat up and gagged a few times throughout the night but was otherwise fine.
Day 4 - Friday
In the morning he had his antibiotics and they continued to do their obs. We asked if they could now give him the anti sickness intravenously because he was feeling sick after not getting any the night before. Again they insisted that we try orally, but this time maybe try the dissolvable sheets that sit on the tongue and dissolve in a few seconds. We told him it would stop him from feeling sick. It was all new to him and looked completely different to the liquid medicines he had become so afraid of. He was very cooperative and stuck his tongue out. Ollie put it gently on his tongue and told him to close his mouth. He closed his mouth and made a sour face but it was all done in 15 seconds. I thought it was a success, until another 20 seconds later. He gagged and then brought up his entire stomach contents. At this point I felt he had lost all trust in us. As far as he's concerned, he couldn't see much out of one eye but other than that he was perfectly healthy and happy. We took him to the hospital to supposedly make him better and he's subjected to the worst week of his life. We keep telling him these medicines are going to make him feel better but all he can see and feel is all the nasty side affects. I feel so sad for him. He's been such an amazing little star despite all the complications. They eventually agreed to give the IV Ondansetron through his port. Once they did the sickness went away, his temperature hadn't spiked since Wednesday night and we were all desperate to go home. Now we were closer to home we were finally able to see Jakey. Ollie picked him up after school and they came to the hospital for a few hours. It was so lovely seeing them together again. A little bit of normality for poor Noah. They sat and watched Minions in the hospital bed together before Ollie took Jakey home. We all hoped that the blood tests would come back clear the following morning so we could finally go home.
Day 5 - Saturday
The next morning Noah slept in a little because he hadn't slept well that night. Almost before he opened his eyes he said 'Is Jakey here yet?' This morning went incredibly slowly and Noah was well and truly fed up. He was also suffering quite badly from diarrhoea from the antibiotics which was fun. Me and Ollie were feeling exhausted in every way possible. The blood tests from GOSH came back clear which meant they could stop the antibiotics and discharge us. This took a little while and it was about 3pm before we finally got discharged. Noah had a little rash on his back that the consultant had a look at but she wasn't too concerned so off we went.
Noah was so ecstatic to be leaving, his little legs tumbled down those hospital corridors faster than I've ever seen them go before. I expected to feel so relieved when we got home but somehow I felt almost overwhelmed at returning to normal. To return back home to everyday tasks like a mountain of washing, suitcases to unpack and dinner to make after such an exhausting week, I didn't really know where to start. But the main thing was the boys were home together, playing and fighting just like any other weekend; for now.
We can see the pain that your family is going through at this critical time. Life can be very tough sometimes but it is still beautiful. Just look at the courage and the unity of your family. It's great to see that you don't give up. We do hope and pray that the little boy will see the light at the end of the tunnel especially with the wonderful treatment he is receiving - have faith and patience. And, thank you for keeping us informed through these blog posts.
ReplyDeleteLove from Doha.