Cycle 2 - Day 18 New Year's Eve - Back in Hospital

Niamh had a good morning but woke up from her afternoon sleep quite unsettled and with a mild fever of 37.3. After 30 minutes it had reached 38. When a child under chemo reaches 38 they need to be treated immediately with antibiotics in case of possible severe infections.

We called the clinic to let them know of our imminent arrival. By the time we got there the antibiotics had already been prescribed and we were told that we would be admitted for 48hrs min. At least we knew the deal straight away.

She was given two antibiotics through her central lines and they took blood for blood cultures and blood count. Her blood counts are still very low: no white cells and haemoglobin level down to 8.2. She will most likely need a blood transfusion tomorrow. Niamh's oncologist is on call this weekend so will be keeping a close eye on Niamh's progress.

As there were no free beds on ward 15, we are now on ward 10 (where we started, neurosurgery ward). It is reassuring as it means they can monitor the fluid on her head and her neurological development. It is also nice as we know the staff. Plus they have given us our own cubicle with ensuite to keep Niamh away from any more bugs.

So New Year in hospital. At least we had Christmas at home, we can't really complain. Doubt she will start cycle 3 on Tuesday but you never know.
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Kidney Test

... Also found out today that her kidneys are normal. Phew.
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Cycle 2 - Day 17 - Blood Count Low

A long visit to the hospital today. Our appointment with the oncologist in the Clinic was for 11.30am. All was going great, everyone was pleased with Niamh's progress with her crawling and willingness to progress, she looks well, etc. The oncologist wanted her to have blood test done today to see whether she still needed the GCSF which she started two days ago. (The GCSF is given to help her white blood cells recover, it is an injection in the leg and it really hurts!).

At 1pm she had the last chemo of this cycle, the vincristine, had a blood test and a line dressing change. They asked us to hang around in the area for an hour so the decision could be made regarding the GCSF. Off we went to grab some lunch happy thinking that she may not need it anymore.

Disappointment when we came back an hour later, not only she still needs the GCSF and will need it for quite a few more days but also we were told that her blood counts had dropped and she needed a platelet transfusion. Haemoglobin were 9.2, Platelets 24 and White Cells less than 0.1, which means that she has no neutrophils, ie. she is neutropenic (no immune system). We were expecting this to happen but earlier in the week.

So we waited till the platelets arrived and had the transfusion done, followed by the GCSF injection. By the time we could go home around 5pm, we decided to go via ward 10 and see if the neurosurgeons could have a look at the fluid on Niamh's head where she has the scar. On Christmas day the fluid had gone down a lot and her head was near 'normal'. By Tuesday it was back up and also seemed a little firmer to the touch than usual. Also she was sick twice today which concerned us in terms of the pressure in her brain. The neurosurgeons had a look but did not seem concerned which is reassuring. They say it is hard to explain why it goes up and down but unless she gets very drowsy or the fluid under her scar is no longer soft, then we should not worry.

So we are glad to be home this evening and hoping we can stay home till next week. The community nurses will continue with the GCSF every day till further notice and also will do blood tests on Sunday and Monday. If Monday's blood results are good, then she will start Cycle Three on Tuesday. If her blood counts haven't fully recovered it may be delayed by a day or two.

Apart from all this, Niamh has been very well over the last few days, she is continuing with her progress and her desire to stand and crawl. She enjoys showing off her new skills to anyone that comes through the door. Very cute. It is hard to believe her blood counts have dropped as she looks well and doesn't seem particularly more tired than usual.

Cycle 2 - Day 14 Home

Niamh is making fantastic progress with her standing and crawling. She can't get enough of it. It is great but scary at times as she seems to be getting quite adventurous with her newly refound skills.

A bit puzzled about her blood counts which we have just got this evening. We were expecting her to be neutropenic by now but everything is up, her neutrophils are 3.8 which is pretty good as they were only 1.8 last wednesday. They probably can still go down this week as she had the last dose of chemo on Thursday. The oncologist would like her to start the dreaded cycle 3 next Tuesday (4th).


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Cyle 2 - Day 11 Christmas Eve

We're home! Mulled wine (first alcoholic drink in two months) and crispy duck in the oven. Girls enjoying being together and very much looking forward to father christmas' visit.

Niamh has had a nice day. Her blood counts haven't dropped yet, probably over weekend. Community nurse will come on Monday for blood test and gcsf.

For now merry christmas everyone!
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Cycle 2 - Day 10 last day of drugs

Niamh has had an ok day today, a bit tired and grumpy at times but on the whole ok. Her blood counts are starting to go down, but her white cells and neutrophils are still ok so far. She has just had a blood transfusion as her haemoglobin was nearing 8.

Chemodrugwise, she's had vincristime, cyclophosphamide and etoposide. Quite a lot in one day really.

We have been keeping her on very low amount of food to avoid too much sickness. So far she has only been sick once (about 15 mins ago).

She was actually weighed yesterday and she was 15.4kg which seems quite a lot as she was 14kg when diagnosed two months ago.

She does seem in pain every now and then but hard to know where the pain is and she won't say. As she tends to get over it within a few minutes she hasn't had any painkillers.

So the plan is still for us all to be home tomorrow evening on time for Father Christmas. It would be lovely but let's wait and see.
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Cycle 2 - Day 9 Hospital

We only got admitted to the clinic at 2pm and yet it feels like a very long day.

The ward was full so we only got a bed at 7pm this evening. Niamh started the fluids at 2.30 then had the cyclophosphamide at 5.30 for an hour and then more fluids. If all goes well (ie. She wees the right amount) they will give her the cyclophosphamide at 3.30 tomorrow which would mean that we could go home on Friday late afternoon.

She is continuing the daily etoposide till tomorrow night so if we do go home on Friday it will be without any chemo. No chemo drugs on christmas eve nor christmas day!

Niamh was very well at home this morning, did the best crawling so far. When we arrived at the clinic this afternoon and she was given a bed, she wasn't very pleased. We had a few tears. She eventually settled back into hospital life.

She has been playing happily, made tea with her teaset for the neurosurgeons when they came to check up on her. They were kindly entertained.

This evening she is exhausted, yet only just falling asleep now (10pm). She seems in pain at times (a couple of loud scream), not sure what it is, suspecting it may hurt when she passes urine due to the chemo today. She is on so much fluids that she is constantly weeing so hmmm!

Hard to believe that we were meant to be on a ferry to France tomorrow night.
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Cycle 2 - Day 8 Preparing for the Hospital :(

Niamh has had another lovely day at home. She was keen to show off her standing and crawling to Nanny on the web-cam. It is still early days with her physical abilities but it is reassuring that she wants to try.

She has really enjoyed her week at home. Unfortunately back to the hospital tomorrow for 2 nights (minimum).

We are now half way through Cycle Two in terms of the drugs:
She has so far had Etoposide and Temozolomide from last Tuesday to Saturday, then Etoposide only until this evening.
In hospital she will have Cyclophosphamide tomorrow as well as Thursday. This needs to be given with lots of fluids (mesna) to protect her bladder so she will be on a drip for the next three days. She is also due some Vincristine tomorrow. Then Friday and Saturday more Etoposide hopefully from home and then a few days off before her last dose of Vincristine on Wednesday in a week. Then Cycle 2 will be done! Phew!

It would be nice to be home for Christmas, at least for the girls to open their presents but we are being quite realistic that it may not happen.

It is likely that Niamh will be neutropenic in the next couple of days (high risks of infections).

Cycle 2 - Day 7

Another lovely day at home. Niamh has been very playful: lots of tickling, cheekiness and grabbing her sister for cuddles. The weakness on her right side seems to be getting better, she is using both right arm and leg very well. She has impressed us a few times today by bringing her legs right up and counting her toes (well just sound, no actual talking). This all suggests that Niamh is reabsorbing her CSF and there is not too much pressure in her head at this stage (we hope!). She does have quite a lot of fluid under her scar, but the neurosurgeons have not been concerned with this, so we don't worry either (hmm try not to).

At dinner time, she wanted to have a plate and a fork. We put a few pasta in her plate thinking she could play with them. Next thing we knew, she had put one in her mouth. We all panicked a little but luckily it went down with only a little coughing. She did not seem too shaken by it, instead she wanted more. We didn't want her to have more though as not the easiest food to practice on.

It is now 9.30pm, Niamh is happily sitting in our bed, playing with daddy's electric guitar and watching Charlie and Lola. She is looking very happy and not ready for sleep even though we are.

(After weeks of wanting to watch 'In the Night Garden' over and over, she now seems over it. Phew!!)

Cycle 2 - Day 6

We are still at home!!! Niamh woke up early this morning, 6am instead of the usual 8.30am lie in. She seemed very uncomfortable and wanted to go downstairs straight away. She vomited as soon as she got downstairs (first vomit since we've been home). She felt better after it.

The day has been pretty smooth. She did some good assisted standing and a little bit of bottom shuffling. She is a bit more shaky than she has been recently and also seems a bit weaker but on the whole she is doing well. She is very cuddly and loving.

Emilie is much better today.

We have another couple of days at home (hopefully) and then back to the hospital on Wednesday for two nights (or longer).

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.

Central lines

Midnight - central lines now unblocked. Phew.

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!

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!!!

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:(

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.

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...

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.

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.

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...

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.

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.

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.

First Fit

Today was another tough day. Niamh seemed quite grumpy, by then very constipated. She did not enjoy the physio session and did not enjoy the speech and language specialist either. The speech and language specialist was trying to assess Niamh's swallowing. Since the surgery, she has a nasal gastric tube. Unfortunately Niamh was not interested.

In the afternoon, the doctors took her left drain off.

Not long after Niamh had a seizure. It was horrible. She went rigid and then her eyes looked up in the corner. It took her quite a few hours to get back to her normal self. Once she did she seemed much better than before.

Her talking is as good a pre surgery.

Day 4 and 5 After Surgery

On Monday (4 days after the surgery) Niamh started making good progress, she started smiling at the nurses. Today, we had some giggling and first session with the physio, mainly encouraging her to grab objects using both hands and kick with her legs.

Intensive Care for 40 Hours

When we arrived in intensive care, we saw our little girl in the middle of the room with her two nurses Julie and Becca. Niamh had a bandage on her head and two drains coming out of each side of her brain. She was intubated through her mouth. The tape holding the tube took over most of her face. Her hands and feet had cannulas, she had a catheter to monitor her urine output. It was hard to find a free area of skin to kiss. Yet she looked beautiful and peaceful. She was connected to various machines.

The nurses were fantastic, they explained to us everything they were doing. As she was due to have a post op MRI the next day, they kept her sedated and under morphine till the Friday afternoon. Mr Kay showed us the results of the scan and whilst there was still a big mass, it was reassuring to see that it was no longer life threatening and that the fluid in her brain was able to pass. Mr Kay explained that we would need to be very patient with her progress, that she may not be able to move her limbs, or talk, etc. Time would tell.

They stopped the sedation and morphine on the Friday afternoon. By the evening she started slowly to open her eyes. Her blood counts and urine were all fine. In the middle of the night they decided that she was able to breathe on her own, it seemed quite a tricky judgment to make. They worry that if the child wakes up too much they may get very scared with the tube and so it is often best to take it off before they get stressed. Luckily it went well.

Niamh was looking around, it was hard to tell if she could recognise us, she looked scared and sad.

Her voice (when crying or saying no) was very faint to start with but gradually got back to normal. By Saturday morning she had showed slight movements in her four limbs which was very reassuring. Her right side, both leg and arm was much weaker.

By lunchtime, she was assessed fit to go back to Ward 10.

21st Oct 2010 - First Surgery (12 hours)

Niamh never woke up the night after the MRI but her blood pressure and heart rate were stable, she responded to the eye test they do to check pressure in the head.

However at 8am, when the nurse came to do the hourly obs, Niamh would not wake up at all, her limbs had gone all floppy and the pupils in her eyes were not only huge but not reacting to light. The next thing I knew there were a number of doctors, surgeons, nurses around the bed and I was taken away in a quiet room. There a registrar explained that Niamh had gone into a coma and needed to go into theatre immediately. I was told about the aim of the operation as well as the risks and had to sign a consent form (the first of many).

Then I was able to follow Niamh to the room next to the theatre, kiss her and leave her in the hands of the surgeons.

Then the wait began. We were told the surgery would take 4 to 6 hours. Niamh went into theatre at 9am and came out at 9pm in intensive care. The consultant Mr Kay, explained to us that it had been a very tricky operation, the first part had been to put two drains in her head to relieve the pressure and then the second part to remove as much as possible of the tumour. He believed that they had successfully removed about 60 percent. They seemed quite sure it was a cancerous tumour, but that it would take a couple of weeks to know what we were dealing with.

Mr Kay explained that she had to be in intensive care due to the length of her surgery and also due to the many blood transfusions.

First Night on Ward 10

Niamh did not wake up after the sedation for the MRI. One of the neurosurgeons came to see us to warn us that they may need to operate on her in the night to place a drain in her brain to relieve pressure in her brain. They reassured us that they were hoping she would be able to wait till her surgery the following afternoon or the following day.

Lucky and Unlucky with the Scan

On the morning of her scan, Niamh wasn't feeling very well. We were told to try and keep her awake so that the sedation would work better but all she wanted to do is sleep. She needed to drink three syringes worth of sedation. She hardly took them that she vomited most if not all. She went to sleep anyway.

During the whole MRI Scan (which lasts about 45 minutes and is incredibly noisy), we sat near the machine, scared that she would wake up. Half way through the scan, the radiographer came in to put some contrast fluid down the cannula. Unfortunately the cannula was not working. He told us he could try and put a new cannula in, knowing that she may wake up. He said that for Niamh's scan she really did need the contrast. If she did wake up then we would need to come back and complete the scan another day, no pressure!

He successfully put a cannula in, and was able to finish the scan as planned.

We hardly went back upstairs, that the nurses came to tell us that we had to go to Ward 10 and someone would be speaking to us. In the meantime, we picked up a message on our mobile from Dr Sunderland saying that they now knew the cause of Niamh's problems and that our consultant would now be Mr Walsh.

When we walked into Ward 10, we still did not know what was wrong with Niamh but seeing all the children with bandages over their heads, it was clear that whatever it was, she was going to have brain surgery.

So all in all, we were lucky that the MRI Scan was completed without Niamh waking up and extremely lucky that it was brought forward. However we were very unluckly as Niamh has a very very large tumour in the middle of her brain.

Wait for the Scan

The next few days Niamh was okayish. Her shakiness became more a balance issue. She was no longer able to sit up. By the end of the week, she was getting tired more and more quickly and needed to lie down regularly.

We heard from Dr Sunderland the day after our appointment. He told us that we would get a letter for the MRI Scan for the 3rd November (ie. in three weeks) but that he would try his best to get us an earlier date. He was hoping to get one for Friday 22nd October.

He said to take Niamh to A&E immediately if her symptoms became worse.

On Friday 15th October, we received a letter for an MRI Scan on Wednesday 20th October. Even though it was earlier than first thought, it still felt like a long wait. It was obvious by then that Niamh's condition was getting worse very quickly.

The Shock Begins

Niamh was particularly unwell on the day we saw Dr Sunderland. She seemed very lethargic, very pale and she vomited whilst the paediatrician examined her.

Dr Sunderland told me that they had ruled out leukaemia (from the blood test from the previous day). I had not even realised this was a possibility so it was a shock and relief to hear that it was not leukaemia.

He then said that he would like Niamh to have a brain MRI scan as soon as possible to ryle out two types of brain tumours which can cause the shakiness and loss of balance as well as a urine test to rule out an abdomen cancer which could also cause similar symptoms.

I fell sick. Lindsay was very supportive and they gave me time to get myself together and call Alex before sending us for more blood tests.

That night was horrendous.

Appointment at the Fracture Clinic

On Monday 11th Oct, we saw Lindsay at the Fracture Clinic. She did not believe that the Fracture was the cause of Niamh's problem. She seemed very concerned about Niamh and decided to refer her to a paediatrician urgently. She also asked that we took Niamh for some blood tests.

On the Monday afternoon, Lindsay called to say that she had managed to get us an appointment for the following day with Dr Sunderland (during his lunchbreak!).

Turn for the Worse

Once the appointment was made, Niamh became very tired. She spent most of the weekend (9th and 10th) asleep. Even when awake, she just wanted to lie down.

We knew then that something was seriously wrong.

Screaming Episodes

After a few days of great progress with her motivation to walk, Niamh woke up on two nights, (6th and 7th Oct), screaming. Her legs and toes were rigid, we could not stop her from screaming.

The first night, she must have screamed for a couple of hours. We were so worried that she did not go to nursery on Thursday 7th. She was fine during the day. Happy playing but no walking.

On Friday 8th October, we made an appointment to the Fracture Clinic for the following Monday to check on her progress.

Some Progress

After seeing the GP, we continued to encourage Niamh to walk. Progress was at first slow and then it got better for a few days, fom Sunday 3rd to Wed 6th October.
She was keen to walk and was able to take quite a few steps (with our help).

Week Following Removal of Cast

Progress with her walking was very slow. A couple of days after the cast came off, Niamh started to refuse to try and walk even with our support.

A week after the cast came off, on Tuesday 28th September, we called Lindsay at the Fracture Clinic to check about her slow progress and also the shaking. Lindsay said progress can sometimes be slow with some children but that the shaking did not seem related. She advised that we took Niamh to the GP.

That same afternoon, we were seen by our GP. The GP was not concerned about Niamh's shakiness. He thought it must be related to her fracture and anxiety with her walking. To be fair on the GP, she was hardly shaking when we were at the surgery.

Cast Off Day

Niamh's cast came off today. She was very pleased. We were trying to help her to walk a little. Progress is slow.

Shaky Shaky

It's around now we started to really notice Niamh's shaking. Alex thought he may have seen it for a while in the mornings when Niamh first woke up.

Nursery also mentioned that Niamh was quite shaky at times.

It was shaking of hands/arms, at first a little , but got worse over the next few weeks.

We were concerned about it but thought it was related to the fracture, anxiety.

Purple Plaster

Niamh saw Lyndsay at Fracture Clinic. She couldn't clearly see a frature but as Niamh was still sore to touch and not bearing weight it was decided to treat a Fracture. A beautiful Purple cast was expertly applied by Paul, to be kept for two weeks.

Niamh was happy enough with her cast and was shuffling around on her bum.

A & E - Birmingham Children's Hospital

Alex took Niamh to Accident and Emergency at Birmingham Children's Hospital on Sunday morning. They made an appointment for her at Fracture Clinic for Tuesday. Niamh had another crying, unsettled period this afternoon.

Chez Nous - Back Home

Niamh has been fine all week but today she started crying around lunchtime. We thought it was her leg (fed up with her cast) so we took it off. She was still complaining about her leg though and couldn't put any weight on it. She cried for a long part of the afternoon. We had no idea what was wrong.

Holiday in France - Chez Nanny

Niamh was fine today, just a little annoyed with her cast.

Holiday in France - Chez Fred et Patricia

Niamh had a lovely day with us all at Pat and Fred's house. Till then she had been acting like any normal 2 year old with no symptoms to be worried about.

In the late afternoon Niamh fell off the steps of her cousin's bunk bed. She screamed for a while and then fell asleep. When she woke up she screamed a little more and then settled in the car.

When we stopped at the shopping centre in Vannes we noticed that Niamh would not bear weight on her right leg.

We went to A & E in Vannes where she had an XRay. They couldn't see a fracture. As Niamh complained if you touched he right leg they put on a cast anyway (back slab) and told us to take it off after 7 days.