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.
Tuesday, 23 November 2010
First Night on Ward 15 Oncology
We've moved! We now have a bed on Ward 15 - Haematology & Oncology. It takes a bit of time to get used to a new ward, but nurses are very nice and there are loads more toys in the play room. There are even some small sit-on cars and a tractor. Niamh had a go on the green tractor and I pushed her round the corridors. She loved it. We both slept well when she eventually settled down (back to a 10pm hospital sleep time). We're ready to start chemotherapy tomorrow, hopefully.
Monday, 22 November 2010
Missing Posts - We will catch up
There are some missing posts here, we'll catch up when we can.......
Niamh has been on Ward 10 for 4 weeks and has had a really nice week at home. She has had two very successful operations (on 21st October, day after the MRI, for 12 hours, and on 3rd November for 7 hours).
Most of her brain tumour has been surgically removed, a little remains in places too risky to operate on.
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