Cycle 2 - Day 5 - Snowy Day

Not much to report. Niamh is still doing well. She has been sitting with us at the table at mealtimes. Last night she even took a spoon and put some mashed potatoes in her mouth. She did well with the first mouthful, the second one didn't go so well. A lot of coughing. The speech and language therapist has told us to play with food with Niamh to get her used to it again. She is definitely able to swallow but she seems to have forgotten when to. Also she is not able to move her tongue much.

We took her for a little walk in the snow which was lovely.

Emilie is still quite feverish, possibly the flu. We are concerned for Niamh but so far she is ok. Niamh has had the flu vaccine.

The bedtime chemotherapy drugs are getting a little less stressful.

Cycle 2 - Day 4 - Still home

Yesterday was a nice peaceful day. Niamh is loving being home. She doesn't have a huge amount of energy but she is very smily.

Giving the chemo drugs in the evenings is a bit stressful but hopefully with time it will get easier.

Today is going well so far, Niamh has been dancing to the music on the radio whilst playing playdough at the table. It is nice to see her sit at the table (the week before she was diagnosed, she had no balance and couldn't sit on a chair).

The slight problem right now is that Emilie is ill with a slight temperature, a cough and runny nose. Keeping them apart is not easy.
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Cycle 2 - Day 2 - Home

An evening at home as a family, amazing feeling, two beautiful daughters peacefully asleep, even more amazing!

It has been another long day. The kidney test didn't start till 12 and took four hours. They first put a small amount of a radioactive substance through her central line and then took blood every hour for three hours . We should find out how it went later in the week.

Then she had to endure another central line dressing change, followed by the second dose of the swine flu jab. Phew.

Then we waited and waited and waited and eventually got discharged with all her chemo drugs to be administered at home (scary).

She first had temozolomide, then etoposide (same as last night). It is a bit hard pushing these drugs down her tube knowing how toxic they are.

Niamh had a very good session with the physio today. Hoping to keep up the progress tomorrow with some 'mummy physio'.
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Chemo Cycle 2 - Day 1

No shunt required. The scan looked better! So chemo cycle two starting this evening, kidney test tomorrow and hopefully home tomorrow evening.


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Cycle 1 - Day 21 - Success

The harvest cell transplant went very smoothly today, they successfully collected three times more cells than required (yeah!). Niamh was very good throughout, slept in fact for the last two hours.

The ct scan will be tomorrow morning. If the scan is good, then she will start the next cycle of chemo tomorrow or Wednesday and we may get to go home. If the scan is not good, then I guess we will be moving to Ward 10 for surgery on Wednesday.

Niamh has been doing great all day, sitting very straight, using her right hand very well. She had the best physio session since she started chemo: she did lots of standing and had a go at bottom shuffling and crawling.

Niamh is now bored of being in the isolation room, she wants to get out and play. No loose nappy today so hopefully we will be able to leave the room tomorrow.
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Cycle 1 - Day 20

Another lovely day as we got to take Niamh home again for the afternoon. She absolutely loves being home and playing with Emilie.

She is no longer leaning on the right which is fantastic. The fluid on the top of her head seems to have gone down too. We are really hoping that this means that she may not need a shunt.

Tomorrow is a big day: harvest in the morning and hopefully scan and decision regarding the shunt in the afternoon.

If the neurosurgeon decides that Niamh doesn't need a shunt, Niamh will probably start cycle two chemo on Tuesday. This cycle is also 10 days but can be administered at home using the ng tube.
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Cycle 1 - Day 19

Nice day today as we got to take Niamh home for the afternoon. She really enjoyed being home. She has been sitting well with no leaning on the right. All quite confusing but great if it continues.
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Cycle 1 -Day 18 - A Non Productive Day

A frustrating day today.

The specialist nurses got the machine for the harvest cell transplant ready around 10.30am. When we took Niamh to the room, she got v scared and distressed. We eventually calmed her down so we could start at 11am. Unfortunately when the nurse checked the central lines, she was able to flush them but not draw blood from them. She put some special product in the line for an hour, that didn't work. Asked an IV specialist nurse to have a go at unblocking the lines but no result. For the harvest machine to work, there needs to be a good flow of blood coming out of the line. They then asked a doctor to put a canula in Niamh's hand (another traumatizing moment). They were hoping to use the canula to draw the blood into the machine and flush it back through her central line. It was working on and off for about an hour but eventually gave up due to lack of pressure. It is so disappointing as we were in that room for 6 hours, her cd34 count was perfect and yet we came out with nothing.

They have checked her cd34 count for today and it is now 1000, double what it was yesterday. They expect that there will be enough on Monday morning to try again as long as the lines are unblocked. It is such a shame that it is now the weekend as tomorrow would have been ideal. Unfortunately the lab where the cells are kept frozen are closed on weekends.

Apart from this frustrating episode which took most of the day Niamh has been well. Her neurological symptoms are still worse in the morning, better in the evening. The neurosurgeon says that the pressure in the head is usually worse in the morning.

As for the shunt, the plan is for her to have a scan on mon or tues and make a decision by wed.
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Cycle 1 - Day 17 - some good news

Good news today, she is no longer neutropenic. In fact her white blood cells have gone from 0.7 yesterday to 6.4 today, she has 2.2 neutrophils. They have checked her CD34 for the harvest cell transplant and it is more than 500 which the nurse said is phenonemal. They only need 50 to carry the transplant so she reckons it should work well tomorrow.

We are hoping to do the harvest cell transplant tomorrow morning (it takes about 4 hours) unless the surgeon decides he wants to operate on her in the morning (shunt). The neuro team hasn't been yet and she hasn't had a scan either, she is not drowsy at all so hopefully the shunt can wait.

Niamh has been well and happy all day. This morning she had very little balance and could hardly sit up which she found frustrating. She was leaning on the right too much. By the evening she was sitting straight using her right arm and hand almost normally.


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Mohawk - for One Day Only.

Today and probably for today only. Niamh is sporting a fabulous Mohawk.

Cycle 1 - Day 16 - Ng tube

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.....

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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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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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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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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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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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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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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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.

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.