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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.