Tuesday, 4 October 2011
Thursday
Venue for the after mass reception is confirmed as The Loyal Caledonian Corks, 225 Alcester Road South, Kings Heath B14 6DT. There will be food and coffee and tea from about 2.30 pm.
Friday, 30 September 2011
Niamh's Funeral
Niamh's funeral service will take place at 1.15pm on Thursday 6th October at St Dunstan Catholic Church, Kingsfield Road, Kings Heath, Birmingham, B14 7NJ. All (including children) are welcome.
We, Niamh's close family, will then take Niamh to the Crematorium for a short private ceremony.
After the Church mass, please come to a reception in honor of Niamh. We will join you after the Crematorium. We do not yet have the details of the venue but will update the blog as soon as we do. At the reception, there will be a remembrance book where you can write condolences or any memories you have of Niamh.
Practical Information:
- Alex, Emilie and I will be wearing formal black clothes. Please feel free to wear whatever you wish (Peppa Pig if you wish).
- No flowers please. In lieu of flowers, donations may be made to the Birmingham Children Hospital, Ward 10 (neurosurgery) and Ward 15 (oncology). There will be a collection during or after the Church mass.
If we have forgotten anything, please do let us know.
We, Niamh's close family, will then take Niamh to the Crematorium for a short private ceremony.
After the Church mass, please come to a reception in honor of Niamh. We will join you after the Crematorium. We do not yet have the details of the venue but will update the blog as soon as we do. At the reception, there will be a remembrance book where you can write condolences or any memories you have of Niamh.
Practical Information:
- Alex, Emilie and I will be wearing formal black clothes. Please feel free to wear whatever you wish (Peppa Pig if you wish).
- No flowers please. In lieu of flowers, donations may be made to the Birmingham Children Hospital, Ward 10 (neurosurgery) and Ward 15 (oncology). There will be a collection during or after the Church mass.
If we have forgotten anything, please do let us know.
Thursday, 29 September 2011
Day of the Archangels
This morning, 29th September 2011 at about 5.30 am, Niamh died. Her death was very peaceful and happened quickly and without distress. One minute she was breathing and the next she was quiet and her heart was no longer beating.
We spent some time with her in our room having some cuddles on our knees. Emilie gave her cuddles too. We washed and dressed her and now she is in the special room at Acorns. The special room is like a normal bedroom but where the air is kept cold.
It makes us happy to think that Niamh has died on the day of the Catholic calendar Michaelmas or the Feast of Saints Michael, Gabriel, and Raphael (the Archangels). She is with the Angels now.
We spent some time with her in our room having some cuddles on our knees. Emilie gave her cuddles too. We washed and dressed her and now she is in the special room at Acorns. The special room is like a normal bedroom but where the air is kept cold.
It makes us happy to think that Niamh has died on the day of the Catholic calendar Michaelmas or the Feast of Saints Michael, Gabriel, and Raphael (the Archangels). She is with the Angels now.
Tuesday, 27 September 2011
A Bit of Sunshine
We were glad to spend the afternoon outside in the sunshine this afternoon with Niamh.
As Niamh cannot spend too much time in the pushchair anymore, we took the sofa from our bedroom outside with her ROHO mattress on it. Niamh was comfortable and her breathing calm.
Niamh has now been off fluid and food for two weeks. All the staff at Acorns seem as amazed by her strength and resilience as we are. Niamh is now very skinny, her body marks very easily so we change her position every few hours. She remains peaceful. The dose of her medicines was increased yesterday, first time since her syringe driver was put up on Wednesday 14th.
Emilie is now back at school after two weeks off.
As Niamh cannot spend too much time in the pushchair anymore, we took the sofa from our bedroom outside with her ROHO mattress on it. Niamh was comfortable and her breathing calm.
Niamh has now been off fluid and food for two weeks. All the staff at Acorns seem as amazed by her strength and resilience as we are. Niamh is now very skinny, her body marks very easily so we change her position every few hours. She remains peaceful. The dose of her medicines was increased yesterday, first time since her syringe driver was put up on Wednesday 14th.
Emilie is now back at school after two weeks off.
Wednesday, 21 September 2011
Tough Little Cookie
Niamh has been in an unwakeable sleep since last week. We did have another scare last night when her breathing became very noisy and fast. We adjusted her position onto her side and she managed to cough and sort herself out.
Niamh seems to be holding on to life with the same resilience and strength she has shown all through her treatment.
She's now on day 7 without any food or water (after her stomach stopped absorbing). She has continued with the same medication through the syringe driver and doesn't seem to be in any pain or distress.
The areas of skin where her shunts protrude from her head have become sore and we have had to put duoderm over them to help protect them. She's also sleeping on a special mattress (ROHO) which really helps.
We try to keep up with doing things with her, though not very much any more. Just walks in the garden, different rooms in the hospice and the occasional warm shower using a special shower bed. Eye care and mouth care. Lots of cuddles, of course.
Everyone at Acorns is taking great care of us and making these last days with Niamh as special as they can be.
Niamh seems to be holding on to life with the same resilience and strength she has shown all through her treatment.
She's now on day 7 without any food or water (after her stomach stopped absorbing). She has continued with the same medication through the syringe driver and doesn't seem to be in any pain or distress.
The areas of skin where her shunts protrude from her head have become sore and we have had to put duoderm over them to help protect them. She's also sleeping on a special mattress (ROHO) which really helps.
We try to keep up with doing things with her, though not very much any more. Just walks in the garden, different rooms in the hospice and the occasional warm shower using a special shower bed. Eye care and mouth care. Lots of cuddles, of course.
Everyone at Acorns is taking great care of us and making these last days with Niamh as special as they can be.
Friday, 16 September 2011
Changes in Breathing
Niamh had a pretty quiet day until the evening when her breathing started to change. Her breathing became much more rattling and much faster. These changes reached a peak at about 8pm when she was leaving big pauses between breaths. It seemed like she was stopping breathing and starting again. We weren't ready for this even though it's what we're here waiting for.
Niamh did settle a little after this and we repositioned her. She remained reasonably settled in the night with a few episodes like the earlier one.
We all stayed up late watching the sound of music and then slept close to Niamh.
Niamh did settle a little after this and we repositioned her. She remained reasonably settled in the night with a few episodes like the earlier one.
We all stayed up late watching the sound of music and then slept close to Niamh.
Wednesday, 14 September 2011
Relaxed
Niamh was relaxed last night and today and didn't need any extra medication (nozinan and oral morphine). In fact, this afternoon she became noticeably more relaxed and we gave her a nice warm shower on an special mesh chair. She really seemed to enjoy it and did open her eyes a little.
Niamh is no longer absorbing food or water. Her medications have been switched to a syringe driver and thaloset. Not all her medications can be given this way so they have been adjusted slightly. Shes continuing to have morphine but the anti-sickness and anti-convulsion medicines have been replaced with nozinan and midazolam. This may have a more sedating effect but should be effective at stopping sickness and seizures.
We've all said goodbye to Niamh and accept the inevitable which, today, is one step closer.
Emilie has had a very busy day today and enjoyed herself playing making and swimming and tipping buckets of water over daddy's head.
Niamh is no longer absorbing food or water. Her medications have been switched to a syringe driver and thaloset. Not all her medications can be given this way so they have been adjusted slightly. Shes continuing to have morphine but the anti-sickness and anti-convulsion medicines have been replaced with nozinan and midazolam. This may have a more sedating effect but should be effective at stopping sickness and seizures.
We've all said goodbye to Niamh and accept the inevitable which, today, is one step closer.
Emilie has had a very busy day today and enjoyed herself playing making and swimming and tipping buckets of water over daddy's head.
Tuesday, 13 September 2011
Extra Days
Since Friday, Niamh has settled down and had no more seizures that we've seen. She has kept her routine of spa or pool in the afternoon. We've worked on making the transition from our laps in her room to water and back easier. Yesterday we got it right and had a really nice spa keeping Niamh nice and relaxed.
We've been grateful for the extra days we've had with Niamh. We've held her close to us with Emilie and enjoyed reading books, singing nursery rhymes and listening to CDs.
Niamh finds it very difficult to be moved, changing nappy was tricky last night and this morning. We've given Niamh extra Morphine and Nozinan (helps with agitation) last night and this morning. She's nicely relaxed on Helene's knee now and has opened her eyes a little to see what Emilie is playing with.
Emilie got over her tummy bug quickly over the weekend which was quite a relief.
We've been grateful for the extra days we've had with Niamh. We've held her close to us with Emilie and enjoyed reading books, singing nursery rhymes and listening to CDs.
Niamh finds it very difficult to be moved, changing nappy was tricky last night and this morning. We've given Niamh extra Morphine and Nozinan (helps with agitation) last night and this morning. She's nicely relaxed on Helene's knee now and has opened her eyes a little to see what Emilie is playing with.
Emilie got over her tummy bug quickly over the weekend which was quite a relief.
Friday, 9 September 2011
Short Days Sleepy Head
Niamh has become very sleepy now, yesterday she was awake for less than one hour. Today she was awake quite a bit more, but slips between sleep and awake. She is lost most movement in her body, she still moves her arms sometimes, but the rest of her is very floppy. We still managed to get in the spa yesterday and today though.
Niamh is comforted very much by holding hands. So much so, that you need to give her good warning if you want to let go.
She did have what seemed to be some small but regular siezures around lunchtime. Luckily they stopped and haven't come back this afternoon. We have topped up her oral morphine which may be helping.
On the whole she is peaceful and relaxed, but it so hard for us to see her leaving us a little each day.
Just to make life challenging, we had to pick Emilie up from school early today with a tummy bug. She's been vomiting all afternoon.. fingers crossed she feels better in the morning.
Niamh is comforted very much by holding hands. So much so, that you need to give her good warning if you want to let go.
She did have what seemed to be some small but regular siezures around lunchtime. Luckily they stopped and haven't come back this afternoon. We have topped up her oral morphine which may be helping.
On the whole she is peaceful and relaxed, but it so hard for us to see her leaving us a little each day.
Just to make life challenging, we had to pick Emilie up from school early today with a tummy bug. She's been vomiting all afternoon.. fingers crossed she feels better in the morning.
Monday, 5 September 2011
Acorns Midnight Walk
Hayley, who used to look after Emilie and Niamh at nursery and also babysat for the girls on a number of occasions will be walking 10 km on the night of 17th September. She is hoping to raise as much as possible for Acorns. Hayley has visited us at Acorns. She was impressed, as we all are, with their facilities as well as the support and care given by all the staff.
Acorns have really been fantastic to us all. Staff and volunteers are all amazingly caring people. We were very pleased when Hayley told us she wanted to take part in the Acorns Midnight Walk.
To donate, please visit Hayley's fundraising page.
Niamh has been ok today, same really as yesterday. Very sleepy this morning and early afternoon but eventually woke up and had a nice time with big sister Emilie.
Emilie has enjoyed her first day back at school. Her social life is already getting busy with birthday parties.
They are now both in bed, a little excited as they know that nanny will be arriving soon after an extremely windy ferry crossing.
Acorns have really been fantastic to us all. Staff and volunteers are all amazingly caring people. We were very pleased when Hayley told us she wanted to take part in the Acorns Midnight Walk.
To donate, please visit Hayley's fundraising page.
Niamh has been ok today, same really as yesterday. Very sleepy this morning and early afternoon but eventually woke up and had a nice time with big sister Emilie.
Emilie has enjoyed her first day back at school. Her social life is already getting busy with birthday parties.
They are now both in bed, a little excited as they know that nanny will be arriving soon after an extremely windy ferry crossing.
Sunday, 4 September 2011
A day at home
A few more days have passed in Acorns. Niamh is still having some nice times: she is still loving the pool and spa sessions and our walks in the secret garden. We have enjoyed a couple of 'movie' evenings as a family, all cuddling up on the sofa - 2 hours of chitty chitty bang bang last night.
Niamh seems more sleepy each day. As we are having to give her Nozinan every evening now to help her sleep better (ie. to stop her arms from moving uncontrollably) , it is hard to know if her morning sleepiness is partly caused by the Nozinan or just the tumour. She tends to wake up properly after her lunchtime nap, around 3 or 4pm. Then she is awake for a good few hours.
Other symptoms we are now noticing more and more: her hands are getting more shaky and she is starting to lose balance when sitting (falls on the right, her weak side). She is also struggling to bear weight on her legs. Her right side is increasingly weak. It is heartbreaking to watch these symptoms again, after having already witnessed them last year before diagnosis.
We went home for the day today. We thought it would be nice for us all. Emilie enjoyed it. Niamh slept for most of our time there and did not seem too bothered to be home or in Acorns. Alex and I found it very difficult. We now know that we are best to stay in Acorns for the time being. Home is too real.
Emilie is very excited about starting school tomorrow and seeing all her friends. We have printed a few pictures of our meeting with Mr Tumble and our trip to Peppa Pig World to take to school. We want her to think of the good times we had during the summer.
Niamh seems more sleepy each day. As we are having to give her Nozinan every evening now to help her sleep better (ie. to stop her arms from moving uncontrollably) , it is hard to know if her morning sleepiness is partly caused by the Nozinan or just the tumour. She tends to wake up properly after her lunchtime nap, around 3 or 4pm. Then she is awake for a good few hours.
Other symptoms we are now noticing more and more: her hands are getting more shaky and she is starting to lose balance when sitting (falls on the right, her weak side). She is also struggling to bear weight on her legs. Her right side is increasingly weak. It is heartbreaking to watch these symptoms again, after having already witnessed them last year before diagnosis.
We went home for the day today. We thought it would be nice for us all. Emilie enjoyed it. Niamh slept for most of our time there and did not seem too bothered to be home or in Acorns. Alex and I found it very difficult. We now know that we are best to stay in Acorns for the time being. Home is too real.
Emilie is very excited about starting school tomorrow and seeing all her friends. We have printed a few pictures of our meeting with Mr Tumble and our trip to Peppa Pig World to take to school. We want her to think of the good times we had during the summer.
Thursday, 1 September 2011
Back to our Acorns Routine
I gave three reasons for Niamh's extreme sleepiness on Tuesday and actually there may have been a fourth possible and very likely cause. Niamh had a short fit on Tuesday morning. It was nothing like the two fits she had last year post surgery, it was not as scary and she came back to normal on her own without the needs for medicines. The consultant we saw yesterday told us that how ever short or long a fit is, it makes people extremely tired afterwards. This could explain why she slept so much that day. It is possible that Niamh will experience further fits.
We had a lovely day on the whole yesterday. After she woke up from her afternoon sleep, she did a bit of playing and enjoyed a spa session. We have definitely got used to our daily spa/swimming. She was very alert for it. She struggled getting to sleep in the evening. Her arms were very jerky. We agreed with the nurses that Nozinan was needed. She had a lovely sleep and woke up around 8am, nice and alert. We had a lovely morning. She is now having her long lunchtime nap.
Emilie has become very fond of the befrienders who come and do some art with her, especially Julie. She was very happy when Julie came to spend some time with her this morning. The timing was perfect as we had a meeting planned with a children counsellor, Sarah. After an initial chat with us, Sarah spent about an hour making a lovely kite with Emilie. This first session with Emilie was more about establishing a relationship with her, rather than to talk about our situation. Sarah offers support for siblings in Emilie's situation.
Emilie is doing well so far. On the outside she looks like a very happy child. She knows what lies ahead but doesn't like to talk about it. She is so young, it is hard to know how much she really understands as, as adults, we don't really understand either. She is looking forward to going back to school on Monday. Hopefully the routine of the school will give her a bit of an escape.
When I took her to buy some school shoes this afternoon, the shoe shop assistant asked her what she had been doing over the summer. She looked at me for an answer. He asked her if she had been on holiday and she said 'yes'. Emilie has had a nice summer on the whole but I could see that she was really unsure what to say, to be fair, I wasn't sure what to say either. She did handle it very well.
We had a lovely day on the whole yesterday. After she woke up from her afternoon sleep, she did a bit of playing and enjoyed a spa session. We have definitely got used to our daily spa/swimming. She was very alert for it. She struggled getting to sleep in the evening. Her arms were very jerky. We agreed with the nurses that Nozinan was needed. She had a lovely sleep and woke up around 8am, nice and alert. We had a lovely morning. She is now having her long lunchtime nap.
Emilie has become very fond of the befrienders who come and do some art with her, especially Julie. She was very happy when Julie came to spend some time with her this morning. The timing was perfect as we had a meeting planned with a children counsellor, Sarah. After an initial chat with us, Sarah spent about an hour making a lovely kite with Emilie. This first session with Emilie was more about establishing a relationship with her, rather than to talk about our situation. Sarah offers support for siblings in Emilie's situation.
Emilie is doing well so far. On the outside she looks like a very happy child. She knows what lies ahead but doesn't like to talk about it. She is so young, it is hard to know how much she really understands as, as adults, we don't really understand either. She is looking forward to going back to school on Monday. Hopefully the routine of the school will give her a bit of an escape.
When I took her to buy some school shoes this afternoon, the shoe shop assistant asked her what she had been doing over the summer. She looked at me for an answer. He asked her if she had been on holiday and she said 'yes'. Emilie has had a nice summer on the whole but I could see that she was really unsure what to say, to be fair, I wasn't sure what to say either. She did handle it very well.
Wednesday, 31 August 2011
Up and down
Yesterday we all felt very down. Niamh spent most of the day asleep. She woke up properly around 4.30pm in time to go for a swim which she thoroughly enjoyed. She stayed awake till about 8pm but it was an effort.
We knew that a few things may explain her sleepiness:
1) she had some nozinan on Monday night as she was a little agitated in her sleep. Nozinan is a type of tranquiliser. She only had 1/2 the amount she was given in A&E 10 days ago but it may have made her more sleepy.
2) it is common for children who have had radiotherapy to have a sleepy phase 6 weeks to 3 months after the end of their radiotherapy treatment. Niamh is right in that period.
3) the tumour. As the tumour grows larger, Niamh is expected to be more and more drowsy, sleep more and one day not wake up.
We feared the worst yesterday. When she woke us up at 6am, we both felt relieved that we were given more time. She went on to have a great morning. She watched a bit of TV in bed with Emilie and us (a bit of a squeeze), played with various wooden toys that have become her favorites in the playroom. We even took the girls for a walk to Cadbury World and spend some time in their free playground. By the time we got back Niamh still had some energy for a bit of coloring. She fell asleep around noon, her usual nap time since we've been here.
We are all feeling a little more positive. We know the end is near but we are just not ready. Will we ever?
We knew that a few things may explain her sleepiness:
1) she had some nozinan on Monday night as she was a little agitated in her sleep. Nozinan is a type of tranquiliser. She only had 1/2 the amount she was given in A&E 10 days ago but it may have made her more sleepy.
2) it is common for children who have had radiotherapy to have a sleepy phase 6 weeks to 3 months after the end of their radiotherapy treatment. Niamh is right in that period.
3) the tumour. As the tumour grows larger, Niamh is expected to be more and more drowsy, sleep more and one day not wake up.
We feared the worst yesterday. When she woke us up at 6am, we both felt relieved that we were given more time. She went on to have a great morning. She watched a bit of TV in bed with Emilie and us (a bit of a squeeze), played with various wooden toys that have become her favorites in the playroom. We even took the girls for a walk to Cadbury World and spend some time in their free playground. By the time we got back Niamh still had some energy for a bit of coloring. She fell asleep around noon, her usual nap time since we've been here.
We are all feeling a little more positive. We know the end is near but we are just not ready. Will we ever?
Sunday, 28 August 2011
Bit More Sleepy
We've had some more lovely days at acorns. We've been in the spa everyday before bedtime and Niamh has really enjoyed her shower afterwards when she plays with the water.
Niamh seems more settled as pain control and constipation seem more in balance now that she has been taking Movicol.
She is getting a little bit more sleepy during the day and is taking a nap for 2-3 hours in the day. This could be the period of somnolence associated with Radiotherapy normally 6 - 12 weeks after treatment.
Niamh likes playing repetitive games at the moment. games with beads or moving things from one bowl or box to another. She has become quite compulsive with these games. She particularly likes moving daddy's breakfast cereal from one bowl to another, including milky weetabix!
On the whole Niamh seems happy with her routine, is settled and sleeping well.
Niamh seems more settled as pain control and constipation seem more in balance now that she has been taking Movicol.
She is getting a little bit more sleepy during the day and is taking a nap for 2-3 hours in the day. This could be the period of somnolence associated with Radiotherapy normally 6 - 12 weeks after treatment.
Niamh likes playing repetitive games at the moment. games with beads or moving things from one bowl or box to another. She has become quite compulsive with these games. She particularly likes moving daddy's breakfast cereal from one bowl to another, including milky weetabix!
On the whole Niamh seems happy with her routine, is settled and sleeping well.
Thursday, 25 August 2011
Stable
A busy day today with many visitors. Niamh is stable, possibly a little more tired today than yesterday.
Thank you for all your kind messages.
Thank you for all your kind messages.
Wednesday, 24 August 2011
Improvement
Niamh is continuing to be better every day.
Today the girls enjoyed a pantomime this morning, 'Aladdin'. Niamh fell asleep 3/4 of the way through but really enjoyed what she saw. She fell asleep so peacefully despite all the noise, I was a little surprised. She has done a lot of walking inside and outside in the garden. Last week she could hardly stand on her legs. She is a lot more interactive and has been very interested in playing and being kept occupied. We had our daily spa before bedtime. Once again she loved it.
It is so nice to read books with her once again and to see her smile. She is still not the child she was two weeks ago but she has definitely improved a lot from last week and the weekend. We really wish we could freeze time now.
Today the girls enjoyed a pantomime this morning, 'Aladdin'. Niamh fell asleep 3/4 of the way through but really enjoyed what she saw. She fell asleep so peacefully despite all the noise, I was a little surprised. She has done a lot of walking inside and outside in the garden. Last week she could hardly stand on her legs. She is a lot more interactive and has been very interested in playing and being kept occupied. We had our daily spa before bedtime. Once again she loved it.
It is so nice to read books with her once again and to see her smile. She is still not the child she was two weeks ago but she has definitely improved a lot from last week and the weekend. We really wish we could freeze time now.
Tuesday, 23 August 2011
A few pictures from the weekend
Another nice day, not much to report. Niamh and Emilie have enjoyed seeing a couple of friends from nursery this morning (Niamh's boyfriend being one of them) and another one this afternoon. Emilie has also been busy with Julie, a volunteer at Acorns, doing some Art and Craft. We were not able to go in the pool today as there was no lifeguard but we were able to use the spa. It was lovely, a big family bath. Niamh was very calm and peaceful. They are both asleep now, looking forward to a pantomine in the morning.
Here are a few pictures taken at the weekend.
Here are a few pictures taken at the weekend.
Monday, 22 August 2011
Acorns Hospice
After a very difficult week, the last three days have been a little kinder to us all.
Wednesday, Niamh struggled a lot with headaches, itchiness, feeling uncomfortable. She fell asleep around 10.30pm but woke up a couple of hours later. She spent the whole night in our bed sitting up, refusing to lie down, moving her arms uncontrollably and unable to rest. It was a tough night. In the morning Alex took her to A&E. We wanted to know whether the neurosurgeons were planning anymore regarding her shunts and if not if we could increase her dose of painkillers. The neurosurgeons said that they didn't want to do anything as it was too early, but to keep her very hydrated. The oncologist consultant decided to replace the oral morphine she was on about 8 times a day with MST, a slow release morphine which is given every 12 hours. They said we could give Niamh more piriton (anti-icthing medicine) throughout the day, from every 8 hours, we could now give it every 4 hours.
By midnight on Thursday she was still awake refusing to lie down and moving her arms uncontrollably. Alex took her to A&E then, Emilie and I followed a couple of hours later. The doctors were very concerned about her. Were her symptoms due to the tumour progression or could they partly be side effects from the morphine and piriton? On top of everything, her heart rate was very low. They decided to give her some buccal midazolam, an anti convulsant drug. She fell asleep within minutes. It was amazing to see her calm and peaceful and be able to kiss her cheeks once again. She slept for about 5 hours. By the time she woke up around 9am, she was a little calmer than the day before. Yet within a couple of hours, the uncontrollable arm movements were back. The doctors then decided to put her on nozinan, a type of tranquilizer. She had a dose at 1.30pm on Friday afternoon. Within an hour, she fell asleep and remained asleep till the next day at 6.30am. Before leaving the Children's Hospital around 4pm on Friday, we had the opportunity to chat with the oncologist Consultant. We expressed how difficult we had found the last few days not being able to control Niamh's pain. They said that they had struggled as her symptoms seemed to get worse so quickly. He explained to us that the end of Niamh's battle may be sooner rather than later.
On Friday afternoon we moved into Acorns Hospice, the best decision we have ever made. It is a beautiful place, with a lot of very kind people. They have given us a family flat upstairs, as well as two adjacent bedrooms downstairs. Niamh's bed was made with Peppa Pig duvet covers and she has a Peppa Pig poster with her name on, above the bed. The last three days have been incredible. Niamh has been gradually getting better. We had a few smiles today (we had no smiles at all last week). She is still struggling with the itchiness and uncontrollable arm movements but she is managing a lot better. She hasn't needed any tranquilisers since Friday. She falls asleep on her own. We all sleep together as a family. The nurses (who are dressed in normal clothes) have taken over the medicines so we can all sleep at night. Our days are all about spending time with the girls. We have made use of their hydrotherapy pool every day since we have been here. When we go in we have the pool to ourselves, they put some nice relaxing music, lights off, and Niamh loves it. She is so calm and relaxed it is wonderful. When her lines came out a couple of weeks ago, both Niamh and Emilie were happy that they would be able to go swimming together again. On Friday we didn't think we would get the opportunity. Now we have been THREE times and if all is well we will continue to go every day. Acorns also has a multisensory room which is good fun and the most amazing garden. We have been able to take the girls out a lot.
So last week was horrible, these last few days have been a little nicer. Niamh is unfortunately not the child she was two weeks ago, she has lost a lot of her brightness and sparkle. Yet she is amazing us all once again by her sheer determination. The last few days have been so special. We are grateful for every minute, hour, day we get to spend together as a family. Emilie is doing well, she says we are on holiday in Acorns. She has everything she needs here, even a 'making room'. Most of the staff already know that she wants to be an artist when she grows up.
http://www.acorns.org.uk/our-hospices/acorns-in-birmingham
Wednesday, Niamh struggled a lot with headaches, itchiness, feeling uncomfortable. She fell asleep around 10.30pm but woke up a couple of hours later. She spent the whole night in our bed sitting up, refusing to lie down, moving her arms uncontrollably and unable to rest. It was a tough night. In the morning Alex took her to A&E. We wanted to know whether the neurosurgeons were planning anymore regarding her shunts and if not if we could increase her dose of painkillers. The neurosurgeons said that they didn't want to do anything as it was too early, but to keep her very hydrated. The oncologist consultant decided to replace the oral morphine she was on about 8 times a day with MST, a slow release morphine which is given every 12 hours. They said we could give Niamh more piriton (anti-icthing medicine) throughout the day, from every 8 hours, we could now give it every 4 hours.
By midnight on Thursday she was still awake refusing to lie down and moving her arms uncontrollably. Alex took her to A&E then, Emilie and I followed a couple of hours later. The doctors were very concerned about her. Were her symptoms due to the tumour progression or could they partly be side effects from the morphine and piriton? On top of everything, her heart rate was very low. They decided to give her some buccal midazolam, an anti convulsant drug. She fell asleep within minutes. It was amazing to see her calm and peaceful and be able to kiss her cheeks once again. She slept for about 5 hours. By the time she woke up around 9am, she was a little calmer than the day before. Yet within a couple of hours, the uncontrollable arm movements were back. The doctors then decided to put her on nozinan, a type of tranquilizer. She had a dose at 1.30pm on Friday afternoon. Within an hour, she fell asleep and remained asleep till the next day at 6.30am. Before leaving the Children's Hospital around 4pm on Friday, we had the opportunity to chat with the oncologist Consultant. We expressed how difficult we had found the last few days not being able to control Niamh's pain. They said that they had struggled as her symptoms seemed to get worse so quickly. He explained to us that the end of Niamh's battle may be sooner rather than later.
On Friday afternoon we moved into Acorns Hospice, the best decision we have ever made. It is a beautiful place, with a lot of very kind people. They have given us a family flat upstairs, as well as two adjacent bedrooms downstairs. Niamh's bed was made with Peppa Pig duvet covers and she has a Peppa Pig poster with her name on, above the bed. The last three days have been incredible. Niamh has been gradually getting better. We had a few smiles today (we had no smiles at all last week). She is still struggling with the itchiness and uncontrollable arm movements but she is managing a lot better. She hasn't needed any tranquilisers since Friday. She falls asleep on her own. We all sleep together as a family. The nurses (who are dressed in normal clothes) have taken over the medicines so we can all sleep at night. Our days are all about spending time with the girls. We have made use of their hydrotherapy pool every day since we have been here. When we go in we have the pool to ourselves, they put some nice relaxing music, lights off, and Niamh loves it. She is so calm and relaxed it is wonderful. When her lines came out a couple of weeks ago, both Niamh and Emilie were happy that they would be able to go swimming together again. On Friday we didn't think we would get the opportunity. Now we have been THREE times and if all is well we will continue to go every day. Acorns also has a multisensory room which is good fun and the most amazing garden. We have been able to take the girls out a lot.
So last week was horrible, these last few days have been a little nicer. Niamh is unfortunately not the child she was two weeks ago, she has lost a lot of her brightness and sparkle. Yet she is amazing us all once again by her sheer determination. The last few days have been so special. We are grateful for every minute, hour, day we get to spend together as a family. Emilie is doing well, she says we are on holiday in Acorns. She has everything she needs here, even a 'making room'. Most of the staff already know that she wants to be an artist when she grows up.
http://www.acorns.org.uk/our-hospices/acorns-in-birmingham
Wednesday, 17 August 2011
Headaches
Tough couple of days, Niamh has started to get what we believe to be severe headaches. We've been stepping up her pain medication and now she is on regular oral morphine. Tomorrow the Macmillan team will review giving her a background dose of morphine leaving the oral morphine when required.
At the same time we have been investigating whether her shunts are overdraining or not. We think this could be the cause (partly) of the headaches. This does fit with what has been happening to Niamh since her MRI last week. Headaches which do not respond to pain killers, the sunken look to the scars on her head and that she gets some relief from lying down (which would be good if she wanted to lie down!).
The neurosurgeons have adjusted her shunts from 1.5 to 2 on her left (VP shunt) and from 1 to 1.5 on her right (subdural shunt). If there is no improvement in the morning we'll contact them again and they may consider a CT scan to check the size of the ventricles in her brain.
With all codeine, ibruprofen and then morphine, Niamh seems to be starting to pick up side effects such as itching and some tummy discomfort too.
She has settled now after we've topped up all her medicine and applied special anti itching cream. She's sleeping in our bed tonight and we are listening to the music from the Prayers For Niamh event that Muireann, Helene's cousin, has kindly set up.
If you don't have access to facebook, here is Muireann's message:
Hello friends,
I am inviting you to become members of this group to pray for my cousins little 3 year old who is very very ill.
Niamh has a very aggressive brain tumour and although she has fought valiantly over the last year she seems to be losing the fight now.
As I lit my sacred candle today for her at 3, to pray for her, bring her to my heart and mind, I thought how nice it would be if we could all remember her in our prayers or hearts every day at any time but in particular between 3 and 4 pm.
I would really appreciate it if you can think of her and her family...mum Helene, dad Alex and older sister Emilie during this very difficult time. I thought that if you would like to pray or meditate then let's do it together as our own little community...light a candle, send her your love, sit still, pray to your God, listen to some inspirational music...whatever works..if we could all do it around the same time every day...well...you never know...the collective positive energy may just help...somehow.
You can follow her progress on http://niamhsilk.blogspot.com/
Thank you,
All my love,
Muireann
x
Monday, 15 August 2011
A very special Weekend
Niamh is now 3 years old! We know we are lucky that she was able to celebrate her 3rd birthday but I do wish it could have been under different circumstances.
Despite not feeling well, Niamh's face lit up when Nanny, Mike and Auntie Caitlin arrived on Saturday and when Uncle Fred, Auntie Aislinn and her three French cousins Camille, Marie and Amelie arrived on Sunday morning. Thank you so much to all of you for coming over at such short notice.
We had planned the party in Granny and Poppa's garden. Thanks to them, Alex and many others (you know who you are) it looked fantastic. By the time I arrived with Niamh the garden looked amazing. Our tent was up for Niamh to rest in. She spent the first part of the afternoon in the tent alternating opening presents, seeing her friends and resting. We were not sure if she was going to feel well enough to come out of the tent but around 5pm (after having had nurofen, codeine and paracetemol), she suddenly decided to put her princess dress on and come out. It was wonderful. She played a few games with her little friends and cousins, amongst which 'What's the time, Mr Wolf', her favorite game. She enjoyed listening to everyone sing 'happy birthday' to her. Seeing her surrounded by all the children felt great.
Thank you to everyone who came and made the day so special for Niamh and all of us.
We were expecting her to be very tired today, but she did not sleep all day. Thanks to advice from Mike and the Macmillan nurse, we seem to have controlled her headaches a bit better today with more regular painkillers (ie. avoiding peaks of pain). She enjoyed watching the videos of her party and going for a walk.
It was hard saying good bye to all the French family today. In moments like these, I really wish we lived close to everyone we love, that includes all of you in France and Ireland (:)).
How about Emilie? She seems to be coping ok so far. She loved the party yesterday, she loved spending time with her cousins and having that feeling of togetherness with them. It was nice to see her happy knowing how tough things are going to be for her over the next few weeks.
Despite not feeling well, Niamh's face lit up when Nanny, Mike and Auntie Caitlin arrived on Saturday and when Uncle Fred, Auntie Aislinn and her three French cousins Camille, Marie and Amelie arrived on Sunday morning. Thank you so much to all of you for coming over at such short notice.
We had planned the party in Granny and Poppa's garden. Thanks to them, Alex and many others (you know who you are) it looked fantastic. By the time I arrived with Niamh the garden looked amazing. Our tent was up for Niamh to rest in. She spent the first part of the afternoon in the tent alternating opening presents, seeing her friends and resting. We were not sure if she was going to feel well enough to come out of the tent but around 5pm (after having had nurofen, codeine and paracetemol), she suddenly decided to put her princess dress on and come out. It was wonderful. She played a few games with her little friends and cousins, amongst which 'What's the time, Mr Wolf', her favorite game. She enjoyed listening to everyone sing 'happy birthday' to her. Seeing her surrounded by all the children felt great.
Thank you to everyone who came and made the day so special for Niamh and all of us.
We were expecting her to be very tired today, but she did not sleep all day. Thanks to advice from Mike and the Macmillan nurse, we seem to have controlled her headaches a bit better today with more regular painkillers (ie. avoiding peaks of pain). She enjoyed watching the videos of her party and going for a walk.
It was hard saying good bye to all the French family today. In moments like these, I really wish we lived close to everyone we love, that includes all of you in France and Ireland (:)).
How about Emilie? She seems to be coping ok so far. She loved the party yesterday, she loved spending time with her cousins and having that feeling of togetherness with them. It was nice to see her happy knowing how tough things are going to be for her over the next few weeks.
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