Niamh had a platelets transfusion again last night. She was quite uncomfortable with her legs and only fell asleep around midnight. When she woke up this morning, she vomited and her tube came out again. The nurses successfully put a new one on time for her medicines but when it was time for her feed, the tube wasn't testing right anymore. They had to put a new tube in again. Needless to say, Niamh hates it when they stick the tube through her nose, yet she was very good for them. It is frustrating as we can hear Niamh swallow so she is able to, she is just refusing to try, too scared.
She had an ok day on the whole but her neurological problems seemed worse than yesterday = leaning on the right, tone in her legs, etc. She also keeps having the hiccups.
Her white blood cells are starting to recover, 0.7 which is good news. She is however due another blood transfusion this evening due to her low haemoglobin level.
The surgeon would like Niamh to have another CT scan once her blood counts have recovered. If it is showing more fluid retention around the left ventricle, they will operate and place a shunt. If it hasn't got any wore, they will wait and see.
If she doesn't have to have a shunt, then they should be able to do the harvest cell transplant as soon as her white cells are ready. This is needed for the sixth (last) cycle. So realistically we will be in hospital for at least another week.
I asked Niamh if she wanted to go home, she said no, and if she wanted to stay in hospital, she said yes. Hmmmmm.....
Wednesday, 8 December 2010
Tuesday, 7 December 2010
Cycle 1 - Day 15 - Totally confusing
Niamh had one of her best days since starting chemo. She has been smiling ever since she woke up, playful, playing music with her little piano and even dancing and getting her dolls to dance. Amazing.
The leaning on the right and weakness in right arm and leg are still present but seem to have improved throughout the day.
Dr Peet, the oncologist consultant came this morning. He was happy to see that she was better than last week. He has decided not to give her the vincristine she was due today. He says it will not affect her treatment and can be given later on. He is not too concerned about her needing a shunt but would prefer to wait till her blood counts are up. She is still neutropenic today. Her happiness and playfulness today are a good sign. Hopefully her white cells will have recovered a bit tomorrow.
At this stage it is looking unlikely that she will have the surgery tomorrow. It all depends on her over the next 24hrs. Unfortunately it is still a possibility for later in the week.
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The leaning on the right and weakness in right arm and leg are still present but seem to have improved throughout the day.
Dr Peet, the oncologist consultant came this morning. He was happy to see that she was better than last week. He has decided not to give her the vincristine she was due today. He says it will not affect her treatment and can be given later on. He is not too concerned about her needing a shunt but would prefer to wait till her blood counts are up. She is still neutropenic today. Her happiness and playfulness today are a good sign. Hopefully her white cells will have recovered a bit tomorrow.
At this stage it is looking unlikely that she will have the surgery tomorrow. It all depends on her over the next 24hrs. Unfortunately it is still a possibility for later in the week.
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Monday, 6 December 2010
Day 14 - shunt or no shunt
Niamh has been ok today, but seems frustrated with the weakness on her right hand side. She finds it difficult to get comfortable as she tends to lean on the right. She improved throughout the day and by the evening was sitting up, playing and giggling. Could she be any more confusing!!!
One of the neurosurgeons came this morning (same one as last night) and explained that the left ventricle of her brain is not working as efficiently as it should. This explains the fluid retention on the left side of her brain which explains her right weakness. He said that she would most likely need a shunt and that they have booked a slot to do this on Wednesday afternoon. Not ideal though as her white blood count hasn't recovered yet and she is still neutropenic.
When Mr Kay came in the evening, Niamh was happy and smily. Mr Kay confirmed that the scan indicated that the left ventricle may not be working as well as wished but that he still wasn't sure that she needed a shunt. He was pleased to see that she was well (despite the right weakness) and suggested that we kept the slot for Wednesday in case needed but that hopefully she will not need it.
We are of course hoping that she won't need a shunt and that if she does, she can wait till her blood counts recover. Time will tell.
Last antibiotics tomorrow. Infection seems to be over now.
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One of the neurosurgeons came this morning (same one as last night) and explained that the left ventricle of her brain is not working as efficiently as it should. This explains the fluid retention on the left side of her brain which explains her right weakness. He said that she would most likely need a shunt and that they have booked a slot to do this on Wednesday afternoon. Not ideal though as her white blood count hasn't recovered yet and she is still neutropenic.
When Mr Kay came in the evening, Niamh was happy and smily. Mr Kay confirmed that the scan indicated that the left ventricle may not be working as well as wished but that he still wasn't sure that she needed a shunt. He was pleased to see that she was well (despite the right weakness) and suggested that we kept the slot for Wednesday in case needed but that hopefully she will not need it.
We are of course hoping that she won't need a shunt and that if she does, she can wait till her blood counts recover. Time will tell.
Last antibiotics tomorrow. Infection seems to be over now.
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Sunday, 5 December 2010
Day 13 - Up and Down
Not the best of day today. Niamh's weakness on the right which had got better post second surgery seems back. Struggles to sit without leaning on the right. We were also concerned once again with fluid on the top of her head. One of the neurosurgeons came and agreed it had changed a little so suggested another ct scan.
Niamh was a bit scared at first but then relaxed and stayed still for the scan. She enjoyed her little walk in the pushchair holding on to her drip through the hospital corridors.
Unfortunately we don't know much. Fluid has increased a little so they will be keeping her under observation. There is no need for a shunt yet but is a possibility in near future. They would need her blood count to recover first anyway.
Praying that it all settles itself on its own as shunt can lead to many more pbs. The neurosurgeon consultant will come and check on her in the morning.
In the meantime Niamh is okish, had a good morning, not so great afternoon. At least she is back on food (low amount) and her diarrhea is less.
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Niamh was a bit scared at first but then relaxed and stayed still for the scan. She enjoyed her little walk in the pushchair holding on to her drip through the hospital corridors.
Unfortunately we don't know much. Fluid has increased a little so they will be keeping her under observation. There is no need for a shunt yet but is a possibility in near future. They would need her blood count to recover first anyway.
Praying that it all settles itself on its own as shunt can lead to many more pbs. The neurosurgeon consultant will come and check on her in the morning.
In the meantime Niamh is okish, had a good morning, not so great afternoon. At least she is back on food (low amount) and her diarrhea is less.
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Saturday, 4 December 2010
Day 12 - Much better
Niamh has had a lovely day, lots of playing, smiling and wanting to do things. Heart rate and blood pressure back to normal. Temperature has been fine (went up to 37.8 a couple of times but went back down on its own).
No infection has been found so far in blood or stools.
Unfortunately the loose nappies are continuing which is a bit of a problem (especially when it lands on daddy's knees again!!!hehehe.) She is now being weighed twice a day to help them control her fluids.
On the day she was diagnosed Niamh weighed 14kg, on day of central lines 14.9kg, on first day of chemo 14.5kg and today 14.2kg and yet she has been off food for 4 days (not sure how she hasn't lost more but reassuring).
Her mouth seems fine, if anything better. She even wanted to brush teeth this morning (hasn't happened for at least a week).
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No infection has been found so far in blood or stools.
Unfortunately the loose nappies are continuing which is a bit of a problem (especially when it lands on daddy's knees again!!!hehehe.) She is now being weighed twice a day to help them control her fluids.
On the day she was diagnosed Niamh weighed 14kg, on day of central lines 14.9kg, on first day of chemo 14.5kg and today 14.2kg and yet she has been off food for 4 days (not sure how she hasn't lost more but reassuring).
Her mouth seems fine, if anything better. She even wanted to brush teeth this morning (hasn't happened for at least a week).
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Friday, 3 December 2010
Day 11 - getting better
After a very long sleep, Niamh woke up happy this afternoon. It seems that the new antibiotic is working. It has been lovely to see her playing and smiling. When Emilie came, Niamh was all excited and hiding behind her sheet. They played lovely together which was nice not only for Niamh but also for Emilie as she has been missing her sister greatly.
The blood transfusion happened between 4 and 8pm. She does seem to be a lot less pale.
Platelets will happen at some point this evening.
Still having some loose nappies but it seems to be less. Fingers crossed. Hopefully will start feeds again tomorrow.
Niamh has even tried to speak a few words this afternoon: mummy (he he he) and bye bye on the phone to Emilie.
Nice to have her cheeky and smily Niamh back for a few hours.
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The blood transfusion happened between 4 and 8pm. She does seem to be a lot less pale.
Platelets will happen at some point this evening.
Still having some loose nappies but it seems to be less. Fingers crossed. Hopefully will start feeds again tomorrow.
Niamh has even tried to speak a few words this afternoon: mummy (he he he) and bye bye on the phone to Emilie.
Nice to have her cheeky and smily Niamh back for a few hours.
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Day 11
Niamh had a stable night and is very sleepy today. Her blood counts are very low. She will need a platelet and blood transfusion this afternoon.
It has not yet been possible to locate the infection. Her temperature is still fluctuating but is much lower, the highest today so far has been 38.3. Her heart rate and blood pressure are also better. Still having lots of loose nappies so increased amount of fluids.
The doctors have changed one of her antibiotics.
The oncologist consultant has just been. He warned me that she is likely to be in a lot of pain this weekend (mouth and stomach) due to the high dose methotrexate from last friday. He says when it starts they will give her morphine intravenously. Likely to be over 2 to 3 days.
They are expecting her blood counts to improve by the beg of next week and said that we will know just by looking at her that they are on their way up.
It is early afternoon now and Niamh is asleep, she looks very pale but also peaceful. Dr says her rosy cheeks will come back once she's had the transfusion.
I am missing my bright little smily girl this week.
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It has not yet been possible to locate the infection. Her temperature is still fluctuating but is much lower, the highest today so far has been 38.3. Her heart rate and blood pressure are also better. Still having lots of loose nappies so increased amount of fluids.
The doctors have changed one of her antibiotics.
The oncologist consultant has just been. He warned me that she is likely to be in a lot of pain this weekend (mouth and stomach) due to the high dose methotrexate from last friday. He says when it starts they will give her morphine intravenously. Likely to be over 2 to 3 days.
They are expecting her blood counts to improve by the beg of next week and said that we will know just by looking at her that they are on their way up.
It is early afternoon now and Niamh is asleep, she looks very pale but also peaceful. Dr says her rosy cheeks will come back once she's had the transfusion.
I am missing my bright little smily girl this week.
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Thursday, 2 December 2010
Day 10
Niamh has been stable ish all day. The neurosurgeons have been twice to check on her. The scar on her head still looks neat apart from a crusty bit on the left side. We were concerned about the fluid under her scar which we thought may have increased. They reassured us that it is fine as it is soft. They will come back regularly to check on it.
Her urine was tested and is clear. The dressing on her central line was changed and it seems very clean and not red at all. Really hoping her central line is not infected.
She is still having a lot of loose nappies so infection may be in her tummy.
Her stats this evening are better so hopefully the antibiotics are working.
Blood counts similar to yesterday's: no neutrophils and hardly no white cells.
Emilie is disappointed her sister couldn't come home. Luckily she went to a birthday party this afternoon (thanks to auntie Caitlin) and had such a good time that she is now v happy. She will go to the hospital tomorrow' to make her sister laugh' and also to meet Paula from the Play centre. Paula will try and spend some time with Emilie over the next few months to help her deal with everything that's going on.
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Her urine was tested and is clear. The dressing on her central line was changed and it seems very clean and not red at all. Really hoping her central line is not infected.
She is still having a lot of loose nappies so infection may be in her tummy.
Her stats this evening are better so hopefully the antibiotics are working.
Blood counts similar to yesterday's: no neutrophils and hardly no white cells.
Emilie is disappointed her sister couldn't come home. Luckily she went to a birthday party this afternoon (thanks to auntie Caitlin) and had such a good time that she is now v happy. She will go to the hospital tomorrow' to make her sister laugh' and also to meet Paula from the Play centre. Paula will try and spend some time with Emilie over the next few months to help her deal with everything that's going on.
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Day 10: Update on the infection
Niamh had a stable night. She seems to be responding well to calpol and the antibiotics. Heart rate still high but blood pressure is a bit better. Her temperature is up and down.
Waiting for her blood counts for today but expect them to be similar to yesterday. She is watching a dvd and seems relatively comfortable. Another 30 mins till she can have calpol again. Unfortunately they can not give ibuprofen due to her treatment.
Waiting for her blood counts for today but expect them to be similar to yesterday. She is watching a dvd and seems relatively comfortable. Another 30 mins till she can have calpol again. Unfortunately they can not give ibuprofen due to her treatment.
Wednesday, 1 December 2010
Staying in Hospital
Tough night, Niamh was very unsettled in the early evening, woke up at 3am with vomiting (ng tube came out once again!). Around 5.30am she became very very unsettled, seemed hot and just unwell. Called nurses. They checked her thoroughly. Her heart rate and blood pressure were v high. Even though she was hot, the thermometer indicated 37. They got the tube back in, gave her codieine and she went to sleep. Her heart rate however stayed very high. The doctor was concerned so decided to put her on extra fluids. This didn't help. In the end realised the thermometer was faulty and she was not 37 but 40!!!
Niamh is now on calpol and two strong antibiotics, meropenem and gientamicin
The oncologist consultant has just been. He said it is a shame that she is suffering from an infection so early on but confirms that her treatment is so harsh that it can be expected. Niamh's blood counts are very very low, hardly no white blood cells left and no neutrophils, ie in no position to fight this by herself.
Niamh has started having gcsf injections yesterday and will have one every day for the next 10 days. This is to increase her white blood cells for the harvest cell transplant in a couple of weeks (important for the end of her treatment). This should help her get over this too.
Niamh is a very strong little girl, she will fight this, however long it takes. The doctor says she is likely to be very unwell for a few days.
Tuesday, 30 November 2010
Day 8 - still on ward 15!
Niamh passed her hearing test this morning so her hearing has not been affected by the cisplatin so far. Phew.
She had her second dose of vincristine, no more chemo now till next Tuesday.
Niamh is feeling much better, still quite rashy and itchy (pruriton helps) and still a bit bothered with her tummy every now and then but on the whole much better. Unfortunately we are still in isolation, ie stuck in a small dull room with a tiny window at the top, no tv, nothing really ... Quite hard to keep her entertained all day. She wants to go out in the corridors and see people, especially as she is off all the drips now.
So instead she holds on to the nurses when they come around. Even the neurosurgeon could not get his fingers back:). Little charmer our Niamh.
No blood tests done today as her central lines seem to have become blocked. They can pass fluids but can't get any blood. They are trying to unblock them with a special product that sits in the lines for a few hours. They will try again tomorrow at 6am. Really hope that works.
We were meant to be discharged this evening but as she has a kidney test tomorrow morning and due to the snow forecast decided it was probably easier to spend the night here. Hopefully sleeping in her own bed tomorrow night!
She had her second dose of vincristine, no more chemo now till next Tuesday.
Niamh is feeling much better, still quite rashy and itchy (pruriton helps) and still a bit bothered with her tummy every now and then but on the whole much better. Unfortunately we are still in isolation, ie stuck in a small dull room with a tiny window at the top, no tv, nothing really ... Quite hard to keep her entertained all day. She wants to go out in the corridors and see people, especially as she is off all the drips now.
So instead she holds on to the nurses when they come around. Even the neurosurgeon could not get his fingers back:). Little charmer our Niamh.
No blood tests done today as her central lines seem to have become blocked. They can pass fluids but can't get any blood. They are trying to unblock them with a special product that sits in the lines for a few hours. They will try again tomorrow at 6am. Really hope that works.
We were meant to be discharged this evening but as she has a kidney test tomorrow morning and due to the snow forecast decided it was probably easier to spend the night here. Hopefully sleeping in her own bed tomorrow night!
Monday, 29 November 2010
Some good news
After a tough night and morning, Niamh has actually had a relatively good afternoon.
The oncologist came over in the evening and said that both bone marrow tests were clear (phew) which is great news.
He also said that Niamh is now 'rescued' from Friday's chemo. Off the fluids at last.
Busy day tomorrow: hearing test in the morning, physio, speech and lang, vincristine dose and then we might go home!!!
The oncologist came over in the evening and said that both bone marrow tests were clear (phew) which is great news.
He also said that Niamh is now 'rescued' from Friday's chemo. Off the fluids at last.
Busy day tomorrow: hearing test in the morning, physio, speech and lang, vincristine dose and then we might go home!!!
Day 6 and 7
Sunday was quite a peaceful day for Niamh. She enjoyed playing, watching dvds and seeing her sister.
By the evening she became very unsettled, couldn't get in a comfortable position and was itchy. She kept wanting to scratch the scar on her head, behind her ears and also her lines. Her tummy seemed to also be causing her discomfort (many loose nappies). Despite all, she did fall asleep around 8pm. Unfortunaly woke up around 9.30pm with more itchiness and discomfort and loose nappies. She was given codeine and pruriton around 11pm (couldn't watch her in such discomfort and possible pain anymore). At 11.30pm we were moved to an isolation cubicle due to her loose nappies. They are most likely caused by the chemo but they need to be safe. It is in a way better for Niamh as easier to rest (less noise).
At 7am this morning, she was sick again. This time it was quite scary as her ng tube came out through her mouth. A good thing they told me not to panic if that happened. She was v good and let me pull it out from her nose.
After that, started the mad morning of trying to place a new ng tube down her nose. Three traumatic attemps but eventually we got there. Her morning medicines were delayed by 5 hours!!
After the stress of the morning, niamh is having a long late morning-lunch nap. She needs it.
We are waiting to talk to the doctor regarding the itchiness, her tummy and a few other things that concern us. Most likely all side effects of the chemo.
Niamh's language skills are also a concern at the moment. Hoping that this is due to her not feeling well.
Why do kids have to go through this! Simply not fair:(
By the evening she became very unsettled, couldn't get in a comfortable position and was itchy. She kept wanting to scratch the scar on her head, behind her ears and also her lines. Her tummy seemed to also be causing her discomfort (many loose nappies). Despite all, she did fall asleep around 8pm. Unfortunaly woke up around 9.30pm with more itchiness and discomfort and loose nappies. She was given codeine and pruriton around 11pm (couldn't watch her in such discomfort and possible pain anymore). At 11.30pm we were moved to an isolation cubicle due to her loose nappies. They are most likely caused by the chemo but they need to be safe. It is in a way better for Niamh as easier to rest (less noise).
At 7am this morning, she was sick again. This time it was quite scary as her ng tube came out through her mouth. A good thing they told me not to panic if that happened. She was v good and let me pull it out from her nose.
After that, started the mad morning of trying to place a new ng tube down her nose. Three traumatic attemps but eventually we got there. Her morning medicines were delayed by 5 hours!!
After the stress of the morning, niamh is having a long late morning-lunch nap. She needs it.
We are waiting to talk to the doctor regarding the itchiness, her tummy and a few other things that concern us. Most likely all side effects of the chemo.
Niamh's language skills are also a concern at the moment. Hoping that this is due to her not feeling well.
Why do kids have to go through this! Simply not fair:(
Saturday, 27 November 2010
Day 5 - Chemo
Niamh had a relatively good night (although lots of weeing due to all the fluids).
She has been very happy to see her big sister who was enjoying making her laugh.
A few rounds in the car again. At 2pm she was given the first dose of rescue drug. They will give her a dose every 6 hours till they are happy that the toxic level in her blood has gone down to a safe level.
Around 5pm, her nasogastric tube came out by accident. It was due to be replaced next week (every 4 weeks) so not so bad. Interestingly Niamh was more distressed with the plaster on her cheek to hold it in place than by the positioning of the tube.
Over the last few weeks, she has developed a phobia of anything that sticks to her skin.
Niamh is being fed through a nasogastric tube since her first surgery. The speech and language team are trying to assess her swallowing but she doesn't seem interested in trying. Not easy to convince a stubborn 2 year old. So far she has successfully coped with chocolate buttons! Her bottom lip and tongue have become weaker since the second surgery. A concern to us but the consultants seem to say that it will come back with time.
Niamh never tries to pull the tube out and never touches her central line which is fantastic. When the nurses come and do their obs, she gives them her arm for the blood pressure, her finger for the oxygen level and even her ear for her temperature. She is so sweet. It does make life much easier but it is so sad at the same time.
She has been very happy to see her big sister who was enjoying making her laugh.
A few rounds in the car again. At 2pm she was given the first dose of rescue drug. They will give her a dose every 6 hours till they are happy that the toxic level in her blood has gone down to a safe level.
Around 5pm, her nasogastric tube came out by accident. It was due to be replaced next week (every 4 weeks) so not so bad. Interestingly Niamh was more distressed with the plaster on her cheek to hold it in place than by the positioning of the tube.
Over the last few weeks, she has developed a phobia of anything that sticks to her skin.
Niamh is being fed through a nasogastric tube since her first surgery. The speech and language team are trying to assess her swallowing but she doesn't seem interested in trying. Not easy to convince a stubborn 2 year old. So far she has successfully coped with chocolate buttons! Her bottom lip and tongue have become weaker since the second surgery. A concern to us but the consultants seem to say that it will come back with time.
Niamh never tries to pull the tube out and never touches her central line which is fantastic. When the nurses come and do their obs, she gives them her arm for the blood pressure, her finger for the oxygen level and even her ear for her temperature. She is so sweet. It does make life much easier but it is so sad at the same time.
Friday, 26 November 2010
Day 4 - Continued
Niamh had a great morning and afternoon, she looked much better than yesterday. Keen to do her physio this morning and enjoyed going around the corridors of the ward in her little car.
Her chemo started at 2pm, a very high dose of methotrexate, a very very yellow liquid. She had it over 4 hours.
Niamh fell asleep around 3.30pm. By the time she woke up an hour later, she looked miserable. She vomited a little. I was then quite alarmed by her yellow pees but was reassured by the nurses it is quite normal. Niamh was unsettled for about an hour after waking up. The nurse decided it may be as good a time to change the dressing on her central line. I think she was right as it wasn't that bad after all. By 5.30pm Niamh was smiling again, playing peekaboo with the nurses.
It is now 7pm, she is watching upsy daisy and iggle piggle and holding my hand. She looks tired but her skin is still a nice color. She is smiling. She seems to get a bit upset when she passes urine: horrible chemicals. We' re changing nappies every 30 to 45 mins!
Slight error in this morning' s entry. The bone marrow biopsy shows no cancer cells but they do not yet have the results of the bone marrow aspiration (liquid if I understand it right).
Over the next few days Niamh will have folinic acid to rescue her body from today's drug. They will check her blood everyday to see how much toxicity is still in the blood and as soon as it is the right amount we should be able to go home. This cycle also has two more doses of vincristine next tuesday and the following tuesday.
Hopefully a good night ahead...
Her chemo started at 2pm, a very high dose of methotrexate, a very very yellow liquid. She had it over 4 hours.
Niamh fell asleep around 3.30pm. By the time she woke up an hour later, she looked miserable. She vomited a little. I was then quite alarmed by her yellow pees but was reassured by the nurses it is quite normal. Niamh was unsettled for about an hour after waking up. The nurse decided it may be as good a time to change the dressing on her central line. I think she was right as it wasn't that bad after all. By 5.30pm Niamh was smiling again, playing peekaboo with the nurses.
It is now 7pm, she is watching upsy daisy and iggle piggle and holding my hand. She looks tired but her skin is still a nice color. She is smiling. She seems to get a bit upset when she passes urine: horrible chemicals. We' re changing nappies every 30 to 45 mins!
Slight error in this morning' s entry. The bone marrow biopsy shows no cancer cells but they do not yet have the results of the bone marrow aspiration (liquid if I understand it right).
Over the next few days Niamh will have folinic acid to rescue her body from today's drug. They will check her blood everyday to see how much toxicity is still in the blood and as soon as it is the right amount we should be able to go home. This cycle also has two more doses of vincristine next tuesday and the following tuesday.
Hopefully a good night ahead...
Day 4 Chemotherapy
Niamh is very happy this morning, she even grabbed the nurse's nose and got the nurse to stop and play with her for a good 10 mins.
Bone marrow has no cancer cells!!! Phew.
Bone marrow has no cancer cells!!! Phew.
Thursday, 25 November 2010
Day 3 Chemotherapy
Niamh had a relatively decent night despite being woken up at 10pm, 2am and 6am for nappy changes and obs.
Today, Niamh had exactly the same treatment as yesterday. She is def looking more tired, red eyes now. Despite being sick on about 6 occasions throughout the day, Niamh has been smiling at everyone. Not sure how she does it.
In the morning, she wanted to play with everything we could find (puzzles, sticker books, matching pairs), had to take a trip to the play room to find extra toys. Around 11am she had physio whilst attached to all our lines. She was v cheeky and giggling for most of it.
By the time the afternoon came, things got a little harder. Less energy, feeling more sick. Yet once she vomited she felt better and would sit up again.
This evening we have been around the corridors with the various attachments. I can't wait to hold her without dragging all the equipment attached to her.
Tomorrow likely to be a tough day. Dressing on her central line needs to be changed. I have been warned the experience may be pretty traumatic. She will also get a high dose methotrexate from which she will need 'rescue' over the following three days. Sounds pretty scary.
Today, Niamh had exactly the same treatment as yesterday. She is def looking more tired, red eyes now. Despite being sick on about 6 occasions throughout the day, Niamh has been smiling at everyone. Not sure how she does it.
In the morning, she wanted to play with everything we could find (puzzles, sticker books, matching pairs), had to take a trip to the play room to find extra toys. Around 11am she had physio whilst attached to all our lines. She was v cheeky and giggling for most of it.
By the time the afternoon came, things got a little harder. Less energy, feeling more sick. Yet once she vomited she felt better and would sit up again.
This evening we have been around the corridors with the various attachments. I can't wait to hold her without dragging all the equipment attached to her.
Tomorrow likely to be a tough day. Dressing on her central line needs to be changed. I have been warned the experience may be pretty traumatic. She will also get a high dose methotrexate from which she will need 'rescue' over the following three days. Sounds pretty scary.
Wednesday, 24 November 2010
Day 2 Chemotherapy
Niamh had a lovely sleep and woke up in a happy mood. Kids are so forgiving.
Mr Kay, the neurosurgeon who operated on her twice (our hero so far) came to see her. He said she looked fantastic. Dr Peet the oncologist came soon after and also commented on how well she is doing. I take it as good news although we've only had one day worth so far.
At 10.30 chemo started, first etoposide for two hours followed by cyclophosphamide. She did well all morning even did some painting with lovely Irish Paula, the Occupational Therapist. Around 2pm she started looking a little pale as if she was about to be sick. She wasn't. She fell asleep for an hour instead. Since she has been smiling, but doesn't have much energy. Sits up a little but prefers lying down and looking at what people are doing (nosy side hasn't changed).
When the physio came around 3ish, I told her that Niamh was too tired for physio today. Niamh did not agree, she sat up, gave her a big smile as if to say: I want to do it. We went to the playroom, had a sit down to play but N quickly realised she was too tired for physio. Walked to the fishes instead.
Only 6pm now so let's wait and see how evening goes. Same drugs tomorrow. This is lasting forever...
Mr Kay, the neurosurgeon who operated on her twice (our hero so far) came to see her. He said she looked fantastic. Dr Peet the oncologist came soon after and also commented on how well she is doing. I take it as good news although we've only had one day worth so far.
At 10.30 chemo started, first etoposide for two hours followed by cyclophosphamide. She did well all morning even did some painting with lovely Irish Paula, the Occupational Therapist. Around 2pm she started looking a little pale as if she was about to be sick. She wasn't. She fell asleep for an hour instead. Since she has been smiling, but doesn't have much energy. Sits up a little but prefers lying down and looking at what people are doing (nosy side hasn't changed).
When the physio came around 3ish, I told her that Niamh was too tired for physio today. Niamh did not agree, she sat up, gave her a big smile as if to say: I want to do it. We went to the playroom, had a sit down to play but N quickly realised she was too tired for physio. Walked to the fishes instead.
Only 6pm now so let's wait and see how evening goes. Same drugs tomorrow. This is lasting forever...
Day 1 Chemotherapy
What a day! First the neurosurgeons said to wait for their go ahead before starting the chemo, despite having told us yesterday it would be fine to start this morning.
Then an hour later they came back with a smile and said they were happy for her to start the chemo. What was that about!!
Niamh has been on fluids since the morning and will be for the next week at least to protect her kidneys and bladder.
Chemo started at 2.15pm. Vincristine was first injected through her central line (syringe) and then cisplatin over 6 hours. N was fine during the day, wouldn't sleep, very alert. We went around the corridors in a little car while attached to about 5 lines. It is a skill (haven't quite mastered it yet).
She fell asleep peacefully around 7.30pm. But woke up an hour later vomiting. It lasted about an hour. Luckily she was due anti sickness medicine. Once that kicked in she was happy and smily again. In fact took for ever to go back to sleep. Peaceful night.
Then an hour later they came back with a smile and said they were happy for her to start the chemo. What was that about!!
Niamh has been on fluids since the morning and will be for the next week at least to protect her kidneys and bladder.
Chemo started at 2.15pm. Vincristine was first injected through her central line (syringe) and then cisplatin over 6 hours. N was fine during the day, wouldn't sleep, very alert. We went around the corridors in a little car while attached to about 5 lines. It is a skill (haven't quite mastered it yet).
She fell asleep peacefully around 7.30pm. But woke up an hour later vomiting. It lasted about an hour. Luckily she was due anti sickness medicine. Once that kicked in she was happy and smily again. In fact took for ever to go back to sleep. Peaceful night.
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