Cycle 3 - Day 22

A much better day today.

Niamh had a good 12 hour sleep last night, first time ever on this ward. She only woke up at 10am so the morning was brief. Rachel, the student nurse loved by both Niamh and Emilie passed a new Ng tube around 12 with the help of Auntie Caitlin. It went it first go. Niamh then had a good 10 minute session with the physio. By the time I arrived she was standing supported by Caitlin and smiling. It was lovely to see.

By the time physio was finished Niamh fell very tired and quickly fell asleep. She had been doing well without oxygen during the morning but we had to put the oxygen back on during her nap.

When she woke up around 4pm, she was a bit upset to start with, she had a small vomit (tube stayed in, phew) and soon cheered up. She was keen to play and make things which was nice. Very cuddly too. She's had a good evening, and has fallen asleep peacefully.

Bottom update: much much better!

Blood counts today are looking good:
HG: 9.7, platelets 122, White Cells 11.3 and neutrophils 5.6. She had her last gcsf this evening.

The Speech and Language specialist came today and suggested that we introduce some signs to help Niamh communicate more easily.
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Cycle 3 - day 21

Niamh had a mixed day today. She had some really great visitors who all helped to make a her feel a bit better.

Niamh also had a very exciting move from her isolation room to Bay 2. She put on her scary cow mask and made growling noises at all the nurses and clinical staff on the way past.

On the whole Niamh was quite tired today and needed extra oxygen for her lunchtime sleep. She has a new oxygen mask with two little prongs which go into her nose. She doesn't love it but she doesn't hate it as much as the full face mask, she really didn't like that one.

Today she was sick 3 times requiring 2 NG tubes to be passed. On the 3rd time we thought we'd give her a rest and kept her NG feeds off for the night. Auntie Caitlin will get the pleasure of helping with placing a new NG tube tomorrow morning.

The Doctors seem to think that niamh has a respiritory virus (a cold a guess) and this is causing her oxygen levels to drop. We hope that as her blood counts improve she will start to feel a bit better. She did have a very peaceful night's sleep, and so did daddy.

Today her blood counts were:

Hemoglobin = 9.9

White Cell Count = 4.4

Platelets = 73

Neutrophils = 2.1

CRP = 5

Niamh's CRP ( a measure of infection) has dropped to 5 and as she doesn't have a temperature she has stopped all of her antibiotics and her anti fungal. This is good news as these medicines are quite hard on the body and can have many side affects.

Cycle 3 - day 20

A few minutes after last night's blog entry, we checked Niamh's oxygen level and it had gone right down to 85. Slight panic. The nurse gave her oxygen to get her back to 100. She told me not to worry too much about it but to keep the oxygen next to her through the night. Obviously we were worried.

One of the doctors came later on. She reassured me and said a virus could cause the oxygen level to go down for a bit. Yet she also said that if her symptoms don't improve over the next few days, then they may need to treat for suspected PCP.

That wasn't a great start for the night ahead. Then at 11.30pm, Niamh vomited again and Ng tube came out. We decided with the nurse to wait till the morning for a new tube. Niamh then fell asleep and slept very well all the way till 9am. She didn't even wake up when the nurse came in to do her blood pressure, etc at 2am and 6am. The oxygen monitor was on through the night and beeped very loudly every time her oxygen dropped. As the mask was close to her face it only happened a few times when she kicked it out the way (she hates it).

She has had an ok day, not fantastic amount of energy but some smiles and some giggles. She has definetely improved throughout the day. Her temperature is down to 36.8 and has remained stable all day. She is still having a lot of loose nappies, so still very sore bottom. Yet she hasn't seemed in pain today.

The Ng tube that was passed this morning came out again around 8pm this evening when she vomited. She already has a new one.

Her white counts today are 1.6, neutrophils 0.9 and CRP is down to 9 which is great news.

Niamh was weighed yesterday and was 14.15kg.
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Cycle 3 - day 19

Niamh seems better at last this evening.

Niamh was still not very well this morning. Her temperature had reached 38 again by 5am and her coughing was still bad. By the time she woke up around 8am, she was okish (calpol helps) but had low energy and was still not herself. She just wanted to watch tv and chill. Had a brief sleep in late morning. She was still not great early afternoon, she vomited (tube out)around 3pm. From then on started improving. She sat on the chair for a while doing stickers. By the time Emilie and auntie Caitlin arrived at 4pm she seemed much happier. She spent a good 30 mins in the bath splashing us all. Couldn't get her out, she was having the best time she has had in quite a while. Unfortunately she had to get out when the nurses arrived with the new ng tube. It went very smoothly today. She is still doing well this evening, her temperature remains around 37/37.3. We are a little concerned about her oxygen level which keeps dropping under 95 but nobody else seems worried!

As for yesterday's tests! The swine flu swab came back negative. The chest x ray was normal. The doctors have decided to change one of her antibiotics to meropenem.

We have been concerned that she was showing signs of PCP (a type of pneumonia children under chemo are quite prone to). The doctors can't rule it out yet but the tests they have done so far indicate that it is unlikely to be. More likely to be a virus. The frustrating thing is that if it is a virus then all the antibiotics and antifungal she is having are pointless. Unfortunately can't take any risks.

Her white cells today are 0.7 and neutrophils 0.4, very slowly going up. Her CRP is 18, still going down. The fact that her CRP is going down also indicates that it is unlikely that she is suffering from PCP.

So no discharge or home leave for the weekend but if her temperature remains ok, we may be able to go home very soon. HOPE!

It has been nice for Emilie to see her sister looking happier and sitting up. She gave her the biggest cuddle before she left.
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Cycle 3 - Day 18

No improvements today unfortunately and two more Ng tubes!

Last night didn't go too well. Niamh fell asleep very late around midnight, woke up 30 minutes later crying. Within a couple of minutes she was vomiting and having another loose nappy. Once all cleaned up, she went back to sleep relatively quickly but seem quite unsettled through the night. Her coughing which started a few days ago seems to be getting worse. It kept waking her up. When I checked her temperature at 5.30am, it was 38.8 again. The nurse gave her some paracetamol around 6am which helped to settle her back down for a couple of hours.

The day nurse placed a new Ng tube down Niamh's nose around 9.30am. It went in first go despite Niamh's coughing. Niamh wasn't very well in the morning, the coughing is annoying her plus her bottom is very sore from all the loose nappies. Probably some other pain too but not sure where. By 12, her temperature was up again, so more calpol.

After a little sleep early afternoon, she seemed a little better. She sat up on a chair for a while playing with water and syringes, read a few books but wasn't interested in any other toys.

This evening her temperature was up again, so more calpol. Her Ng tube came out again around 7ish pm. She now has a new one again.

The doctor came in the afternoon and listened to my concerns about Niamh's temperatures, coughing, high respiratory rate and general unwellness. She said that they would do a nasal swab for swine flu and other types of flu as a precaution and also send her for a chest x-ray. The nasal swab was done around 4.30pm so we don't have the results yet. Niamh had the flu vaccine back in November which includes swine flu so we are strongly hoping that the swab will come back negative.

The chest x-ray took place about 45 mins ago (9.45pm) and we don't have the results yet either. Patience is such a virtue. Just talked to Alex who is staying with Niamh tonight and he said that Niamh really enjoyed her trip out of the isolation room to the xray. She was hoping for a ride on the bike but unfortunately there was no time.

Her white cells are slightly up today 0.4 and neutrophils 0.3. The CRP is now down to 29 so downward trend is continuing which is good. So why the persistent temperature????

It is now 10.30pm, Niamh is feeling a bit better (thanks to the wonderful calpol) although her temperature hasn't gone down yet. She is sitting up reading the BNF.

Cycle 3 - day 17

A much nicer day but temperature won't go!

Niamh ended up having a blood transfusion between 2am and 6am last night. By the time it was finished her temperature was up again. She was given paracetamol around 7am and it did help a lot. By the time she woke up around 9am she looked well, she wanted to sit up and play. She enjoyed her morning visitors and even enjoyed a short bath. As Niamh is still having a lot of loose nappies, it seemed sensible to keep the bath short and clean.

By 12.30 her temperature was up again and she seemed sleepy and down again. By the time the paracetamol kicked in she was happy again.

The doctor came early afternoon. He didn't seem too concerned about the prolonged temperature but said they would start her on antifungal in case it may be a fungal infection. She had it around 2pm.

The afternoon went well, more loose nappies though.

Unfortunately by 8pm her temp was up again and seemed very unsettled, a couple of screaming episode. Quite disconcerting when you cannot identify where the pain is coming from. Her bottom is very sore so it may be bottom related.

It is now 10.45pm and she is still up watching Little Bear, relatively settled.

And the best for last her white blood cells were 0.2 and neutrophils were 0.1 so showing signs of possible recovery. Her platelets were back down to 49 so she just had a platelet infusion.
Also her CRP was 99 yesterday and is down to 45 today. CRP is a marker that shows sign of infections. Ideally it should be between 1 and 10. A downward trend is a good sign.

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Cycle 3 - day 16

A slightly nicer day today. Niamh was better after the oramorph this morning. She didn't want to do much but was happy enough. She sat up for a bit which was nice.

She had a long sleep this afternoon and woke up ok. She doesn't seem to be in any pain at the moment.

Her temperature was fine all day but went up to 38 around 6pm (well one thermometer said 36.9, one said 37.3 and one said 38.3, hmm). The doctors decided to go for 38.3 and give her some calpol.

She was due to have a blood transfusion this evening but it has been delayed due to her temperature. She will hopefully have it later tonight or tomorrow. Her haemoglobin level today was down to 7.9. She is still neutropenic (less than 0.1 white cells and no neutrophils). We are a bit concerned about the temperature this evening as she is on two strong antibiotics but doctor doesn't seem worried.

No vomit today (apart from the small one at 8am mentioned earlier). No Ng tube drama for now 24hrs (relief!).

No loose nappies this afternoon/evening. Could things be getting better?

The dietician has changed her feeds to Peptamen junior which is meant to be easier to digest.

Niamh weighed 14.2kg yesterday, she has lost a bit more than a kilogram on this cycle so far. She actually weighed 14kg when she was first diagnosed.

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Cycle 3 - Day 15

It is actually day 16 in the morning.

During the night on Sunday, Niamh didn't sleep well. She was sick on a couple of occasions and didn't seem to want to sleep. Her temperature had gone back up to 38 by 3am so she had more paracetamol through her central line.

In the morning her Ng tube still wouldn't test after last night's vomit at 7pm. It was decided that she would need a new one (once again). As her platelets were low, the doctors asked the nurses to wait till she had a transfusion before passing the tube. I was told she would have the transfusion around 2pm, she had it at 6.30pm. So Niamh didn't get to feed at all all day (a bit frustrating)

During the day Niamh had very low energy, still having loose nappies and was sick a few times. The mucositis seems better in her mouth but has now gone down her digestive tract.

At 7pm she had a gcsf injection followed by a new ng tube. It was quite a traumatizing episode again (better spare the details).

She has been on 5ml an hour feed through the night. She hasn't slept well again, four loose nappies in the night and a vomit at 6am. Her temperature was rising a little last night but never got higher than 37.8 and it went down by itself. Phew.

I have just asked for some oramorph as she seems in pain. She seems a bit calmer already.

Yesterday she couldn't have any pain relief as oramorph and codeine have to be given through her Ng tube and she didn't have one. Paracetamol which can be given through her central line is only given if they have a temperature as otherwise it can mask a temperature.

Hopefully a better day today.

Cycle 3 - Day 14

A daddy night and day at hospital today and last night. Niamh slept most of the evening letting me get on with some reading at the bedside. We had the odd distraction when Niamh would wake up in discomfort and I'd roll her over and replace her pillow coverings for clean and dry ones. Niamh's sore mouth and throat made for plenty of dribble and some blood this evening. I was really hoping that this would be the peak of the Mucositis. We gave Niamh oral morphine some time late evening and she continued to sleep.

Ooops, 2am big vomit and ng tube out.........I was pleased that there was no blood in her sick just lots of normal messy vomit. It was a three person cleanup job. As niamh was still sleepy and had sore mouth I decided to hold off on putting back the ng tube till morning. This meant no oral morphine till then, but she did seem to be sleeping ok so i hoped she could manage without it.

The early morning was quite tough. Niamh was definitely missing her pain relief though I felt her mouth was a little less sore (I think yesterday was the peak). Niamh was a bit better later in the morning after sleeping a little more, she enjoyed playing with her visitors.

When Dr came later we checked whether Niamh should move to IV (intra venous) morphine or we should repass the ng tube. IV morphine seemed excessive so Dr choose the potentially tough option and ordered a new ng tube. The tube went in easily after all and Niamh had some oramorph as soon as she could.

All this time Niamh nappies got a bit runnier so about 3 pm we got upgraded to a private room (isolation). Quite a nice one this time spacious, storage, tv. Niamh slept some more. and "sicked" some more.

About 7.30 pm Niamh's temparature spiked above 38 degrees despite already being on Tazocin (antibiotics). She has been given paracetamol, blood cultures taken and has been prescribed Vancomycin (another antibiotic). We're a bit worried what sort of infection she has as she was already on an antibiotic, hopefully the Vancomycin will help.

After paracetamol Niamh perked up a bit and was enjoying some very big cuddles with her mum, before sending her dad home with a kiss and a wave.

Cycle 3 - Day 13

Another day of painful mucositis. Niamh is dealing with it very bravely. She has been up and about on a few occasions throughout the day but obviously feels very tired and drowsy from the oramorph.

Hoping it will soon get better.
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Cycle 3 - Day 12

Niamh is doing ok today. They have changed her feeds, it now includes maxijul, which is a thickener. The idea is that she digests her feeds quicker so that the tube doesn't come out when she vomits. It seems to be working so far as she has vomited four times today and the tube has stayed in. First day of the week when she hasn't had to have a new ng tube. hmm, day is not over...

She is suffering quite a lot from mucositis as a result of the chemotherapy, her mouth, throat and gut are very very sore. She had some oramorph this afternoon (morphine) and she was much better after it.

Her MRI scan will not go ahead on Monday 24th Jan as originally planned. The consultant is concerned about her having general anaesthetic when she is neutropenic. Because of her young age, she needs general anaesthetic to do the scan as she needs to lie in very noisy machine for 45 mins and not move. She will now have the scan on 7th February.

Her platelets are low today so platelet transfusion this evening.

She enjoyed playing "what's the time mr wolf" with Emilie and Hifsa for a while this evening. Once again being attached to drip and food made the run from the wolf a bit tricky. She didn't mind.
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Cycle 3 - Day 11

Similar day to yesterday's, not much energy, happy lying in bed watching dvds. Her temperature has remained below 38 which is good. She vomited twice, at lunchtime and this evening, both times the Ng tube came out. Hopefully she will keep the new one in a bit longer. The dietician is suggesting a different feed that would be easier and quicker for her to digest. She has also mentioned a different tube which goes lower down in the stomach. Will be looking into these options tomorrow.

She is having a blood transfusion this evening as her haemoglobin level was down to 7.5 this morning. Hopefully it will help her energy level tomorrow.

We are back on the main ward. We have spent the last few days in the cubicle not actually in isolation, a bit of a luxury really. It is a bit noisy on the ward but at least Niamh can see the other children from her bed.

Cycle 3 - day 10

Not a great day today. Niamh spent most of it lying in bed watching dvds or sleeping. She did get up to go around in the little car when Emilie came to visit but quickly wanted to go back to bed.

Her temperature has been between 37.5 and 37.9 for most of the day. It has now reach 38. Once the temperature reaches 38, they treat it as an infection. Niamh will be back on antibiotics very shortly (same strong antibiotics as she has had for her two previous infection).
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Cycle 3 - Day 9

Niamh has had another lovely day, a bit more energy than yesterday. She did some baking with some of the older children this morning (nice chocolate cookies), then she had a good session with the physio and then went around in the little car for about an hour. We had to follow Hifsa who was on a bike. Hifsa makes Niamh happy, Niamh happy makes us all happy so great Hifsa is around.

She had a good afternoon sleep but woke up quite unsettled. Not sure what was wrong but suspecting stomach cramps. An hour later she was back in the little car following Hifsa.

Niamh started having gcsf again yesterday. The gcsf is to help her white blood cells recover faster. She has had about 10 gcsf injections during each cycle so far. The injection is in the leg, right leg on one day, left the next, etc. She is pretty good with it.

Her Ng tube was put in around 11am. She started on 15ml an hour feed and is now on 20ml an hour. We need to get her back to at least 50 ml an hour. As she has been on very little or no feed for almost a week it may take a little bit of time to get her back to the right amount. As she is not getting enough through the Ng tube yet, she is still getting fluids intravenously.

Niamh should be getting at least 650 ml feed and 350 ml water each day.

Cycle 3 - day 8

Good news: Niamh is rescued from the methrotrexate, bad news: Niamh is now neutropenic (no immune system).

She has been lovely today but hasn't had much energy. She hasn't wanted to play much, mainly wanted to watch dvds and mainly the same one!!

Niamh had a new Ng tube put in at lunchtime as the other one came out last night when she was sick. Annoyingly she has just been sick again and out it came again. Grrr. She will need a new one in the morning. Not sure how many Ng tubes she has had now but am thinking 30ish. Her sticker chart is almost full.

She had a dose of vincristine this afternoon. She is due one more next Monday and that will be it for this cycle.


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Cycle 3 - Day 7

Niamh has had an okay day, she has been pretty tired. Her blood counts are going down quickly: Haemoglobin 7.5, White cells 1.2, Platelets 95 and Neutrophils 1.2. She is having a blood transfusion this evening. (they transfuse when haemoglobin under 8).

Niamh is still happy with her friend Hifsa, she fell asleep this afternoon holding her hand. It is hard to know what Niamh is thinking about her illness as she is not able to speak. She must feel close to her new friend as she also has an Ng tube, and the nurses also come after her to check her blood pressure, etc.

Cycle 3 - Day 6

Niamh had a good night followed by a pretty good day. She loves 6 year old Hifsa, who she was playing with earlier in the week. They have been together for most of the day. In fact when Hifsa leaves, Niamh gets upset and tells us that she wants to go and look for her. Numerous games of hide and seek, holding hands on the bed watching a dvd, dancing on nursery rhymes.

By the time Emilie arrived, it was like a creche. The three girls made some fairies and some masks and went around the ward scaring the nurses. Niamh was very excited.

It is now 9pm, Emilie has just left and Niamh and Hifsa are watching a dvd together on the bed. How cute!

So far Niamh seems in no pain.
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Cycle 3- Day 5

Niamh has had a nice day today, she is a bit more tired than yesterday though. The nurse put her Ng tube back in at lunchtime, it went relatively smoothly. She is now back on feeds, 5 ml an hour (very little).

Niamh started the folinic acid (antidote to the methotrexate) at 5.30pm today. She will have it every 6 hours till she is rescued.

We are still in the cubicle but Niamh is no longer in isolation. She is allowed to go into the Ward.

The fluid on her head seems to be less today.

Cycle 3 - Day 4

Niamh was woken up very early this morning (6am) because of the drip machines bing bonging forever. By 8.30am she was so tired that she went back to sleep and slept till 12. So she had a good peaceful morning.

She woke up happy and smiley and had the best wash this week listening to nursery rhymes. She even let me do her teeth without too much fuss. The music is helping greatly as the isolation room is still as dull as before. We are in the same room as the first cycle with just a tiny window at the top.

Niamh had a good afternoon, doing lots of standing, reaching for stars, crawling, etc. She had a good session with the physios, was in fact a bit cheeky. She seems to have more energy than the last couple of days. When the cleaning lady came (the lady always pulls her tongue out when she sees Niamh), Niamh pre-empted it and tried to pull her tongue out first. Niamh can't actually get her tongue past her teeth since her second surgery but it is great that she's trying.

She enjoyed having big sister over after school and making decorations for the bare walls. I think they have done a good job, it now feels more homely.

Niamh is in isolation because of a loose nappy last night. She hasn't had anymore since.

This evening Niamh is having a high dose methotrexate chemotherapy. It started at 5.30pm and goes on for 4 hours. Methotrexate is a very toxic and very yellow drug. She should be weeing bright yellow very soon. In 24hrs they will start giving her folinic acid which is antidote to the methotrexate. She will have folinic acid till she is 'rescued' meaning the level of methotrexate in her blood is safe.

All the drugs she has had this week are pretty nasty but the methotrexate is particularly tough. The last time she had rashes behing her ears, on her belly button and bottom, she also got a very sore mouth. She may need strong painkillers, possibly morphine. During the first cycle she only needed paracetamol. We'll have to wait and see.

High Dose Methotrexate is also very effective at killing cancer cells.

The neurosurgeons came this morning to check Niamh's bump. They pushed the fluid on her head down using their fingers. They said that it is likely that the holes in her scalp are smaller than they were and some of the fluid may be trapped on top. They said they don't want to do anything about it now as they don't think it is causing any problem and they don't want to interfere with her chemotherapy. They did say though that if the MRI shows that the fluid is just trapped, then they may be able to aspirate it with a needle and hope it doesn't come back. Obviously she would need to have good blood counts. We are pleased to hear that a shunt is not the only solution.

Cycle 3 - Day 3

A better day today although Niamh may need to go in isolation later on this evening.

Niamh had a very good sleep after last night's events. She woke up happy around 9am. She had a new Ng tube put in around 10 am and it went down smoothly to the right place. She could then have her morning keppra (anti seizure medicine which she missed last night), phew.

Niamh's had two chemo drugs today: etoposide and cyclophosphamide (same as yesterday).

The neurologists confirmed in the afternoon that the keppra can be administered IV (through her central line). This is a great relief, especially as her ng tube came out again today around 4pm. As she can have the keppra IV this evening, the doctor agreed to wait till tomorrow morning for a new ng tube . It is nice to have both her cheeks to kiss!

One of the neurosurgeons came to review the fluid on top of her scar. It is quite firm to the touch which is a bit worrying. They will come every day to review it. The shunt is still a strong possibility at this stage.

Apart from all this, Niamh has had a relatively good day, she does not have much energy but likes to see what's going on around her. We had a little go in the car, and played a quick game of hide and seek with one of the other 6 year old patient. She was slightly at an advantage though as she was not attached to anything and she could run. Niamh, however had to be carried by me (she's pretty heavy!) and was attached to a few drips.

Annoyingly Niamh's now had a couple of loose nappies so there are talks of moving to an isolation room this evening. A bit earlier than last time :(