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 :(

Grr

1.20am, two x-rays and a new ng tube later, we still have nothing. First tube was in the lungs so out it came, second tube went in the lungs too. I am told this is extremely rare. The doctors have now decided to go without the keppra this evening. A bit concerned about it.

Niamh has been great, hated the tube being put in but settled nicely after. Slept on my shoulders in various areas.

Hopefully we get to sleep now... As tomorrow more chemo and a new tube needed
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Cycle 3 - Day 2

Today has been a long long day. Niamh has had etoposide and cyclophosphamide.

Niamh was okish this morning, she had a brief session with the physio during which she showed off her standing. She was tired quickly and wanted to go back on the bed. After a bit of tv, she was keen to go on a little tour on one of the little cars. Again she was tired quickly and wanted to go back to bed. Had an hour sleep and then woke up vomiting. First vomit of many as we are now up to about six or seven. The ng tube came out around 7pm. The nurses tried to put a new one in at 7.45pm but Niamh got very very distressed so they didn't get to push it far enough. Niamh is now soundly asleep and we are having to keep waking her up to push the tube further in to get it to test. Getting very stressed as she is due her keppra, anti seizure medicine and if we can't test the tube, we can't pass the medicine. The doctors are now looking at possibility to give it through her lines.

Niamh enjoyed having Emilie over for a few hours this afternoon. She even danced to nursery rhymes at one point.

Niamh seems to have grown a lot over the last 3 months, not only she is 15.3kg, was originally 14kg, but also she can't fit in one of the little car she used to go in. Her legs are too long. The doctor said it is good that she has a healthy weight as it usually helps to cope with the chemo drugs and infections.
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Cycle 3 - Day 1

Niamh started Cycle 3 this afternoon. She had vincristine administered through her central line within a couple of minutes and cisplatin also through her line over 6 hours. Cisplatin can cause quite severe nausea and vomiting. She is so far doing okay.

As Cisplatin can cause kidney and bladder problems, Niamh is also on lots of fluids. She is attached to four drips at the moment.

Niamh was not too keen at first to be back in hospital but soon got back into it. A little 6 year old girl, who she has previously met, came to play with her for a while this afternoon. They were very sweet. Niamh kept hugging her and tickling her arms.

The physio was impressed with Niamh's progress over the last few weeks at home. She is keen to work on her walking this week.

This month is quite stressful for us as Niamh is due to have an MRI scan on Monday 24th January. This will show whether the treatment is working or not.

Cycle 2 - Day 26 & 27 Great Weekend

Niamh has had a lovely weekend. She loved having Nanny and Mike over for the weekend. She enjoyed going for a long walk with them in the sun today.
A lot more energy than the last week. She is almost able to stand on her own, she wants us to help her walk (backs are sore), she wants to climb up the stairs, etc. She is being a toddler trying to get her independence back. She even wants to get dressed alone!

It has been nice to see her so happy and cheeky this weekend. She has even tried a bit of soup and particularly enjoyed the very tasty boeuf bourguignon sauce made by her daddy.

Not looking forward to tomorrow and the next few weeks but happy that we got to enjoy a very nice couple of days with a very happy Niamh.
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Cycle 2 - Day 25 Platelets

Niamh vomited again this morning, tube came out. Amazingly at the same time, the oncologist called to say that he had ordered some platelets for Niamh in case she needed them. He advised us to go into hospital for blood test and a new ng tube.

Niamh was not very happy about going to the hospital. She was very brave when the new NG tube was passed and also very brave when the dressing on her central line was changed.

Niamh did need some platelets as they had fallen further to 31. Before leaving the hospital, I asked for some codeine as Niamh seemed in pain again. It seems to be from her gut due to the toxicity of the chemotherapy she has had.

We got home just on time to get Emilie from school, phew. By that time, Niamh had had a little sleep in the car and was in a great mood. She was glad to show off her crawling and standing (almost on her own now) to granny and poppa. Niamh and Emilie were crawling around pretending to be cats, amazingly Niamh was able to copy Emilie with the miaowing.

Hopefully a peaceful weekend (no nurses coming) before cycle 3 - Monday or Tuesday.

Cycle 2 - Day 24 Blood Counts Recovering at last

Niamh had a much better day today. Standing is no longer enough, she wants to walk now. She is very determined. Her standing is improving each day. She is already taking for granted that she can crawl around. It makes such a difference. Her other favourite activity is climbing up on beds and sofas and back down. We seem to get tired quicker than she does.

The nurse came twice today, first thing in the morning for blood test and mid afternoon for her gcsf injection. Her blood counts are starting to recover, haemoglin was 10.6, white cells 2.4, neutrophils 0.6. However her platelets were low at 37. They usually do a platelet transfusion when under 50, but the doctors want to wait one more day hoping that they are on their way up. In the meantime, we have to watch out for any bruising or bleeding.

Niamh was happy today to go and get Emilie from school. Emilie was overjoyed when she saw her sister waving at her. Niamh got the biggest cuddle and kiss from her sister.

Liz, a Clic Sargent Play Specialist, came to see Emilie at home today after school. (Niamh was very scared at first as she thought she was another nurse). Liz will now come on a weekly basis to do fun activities with Emilie and support her through it all. Emilie responded very well to Liz and seemed very happy for the attention. When asked: 'Emilie, should I come next week or the week after', Emilie said next week.

Cycle 2 - Day 23 A Strange Day

Today has been a bit of a funny day. Niamh was okish in the morning, she did a bit of crawling and standing, but not much else. By 11am she was quite tired and just wanted to watch TV which is unlike her in the morning.

Niamh is still on continuous feeds at the moment as she doesn't seem to be able to cope with boluses.

(Continuous feeds means that she is feeding through the tube most of the day but on very low dosage per hour. Boluses are when we can give her a larger dose within an hour or so, which is great as it means that she does not need to feed all day long.)

Anyway despite being on continuous feed she still vomited around lunchtime and the tube came out again. The community nurses were fantastic and came within 30 minutes to replace it. Poor Niamh got very tearful when she realised she needed a new tube.

Then in the afternoon she slept a little but on the whole was very unsettled, touching her head a lot and crying. As Niamh is unable to speak at the moment, it is difficult to know what it is wrong. Was her head sore or itchy? Was it her tummy? Or was she just feeling low?

By 4pm we called the hospital for advice, did she need to go back into hospital or could we give her codeine and assume that she was in pain somewhere. By the time the oncologist called back (hardly 10 minutes later), all was packed ready to go (very efficient these days). The oncologist said that her gut may still be hurting due to the chemotherapy and that codeine was a good plan. He advised us to wait a bit and if we were still anxious later in the day then to take her into hospital.

Niamh had codeine at 4.30pm, by 5.30pm she was the most happy we've seen her in a while. She wanted to show off her crawling, standing and climbing. She kept going for a good few hours and settled peacefully to sleep around 9pm.

So not a good start to the day but a great end.

Cycle 2 - Day 22 Home

After hope of being discharged at lunchtime, we finally made it home at 8.30pm. Long day...

Nothing was found in the blood and urine cultures so no more antibiotics. The doctor was happy to send us home at lunchtime but asked if we could check her urine before we went. As Niamh looked tired it seems sensible to stay on for her to sleep and wait for a wee. We got a sample which tested fine which is great.

The nurses were then getting ready to give her the gcsf injection when Niamh vomited and her ng tube came out. Noooooo!

The oncology consultant, Dr Peet came at the end of the day to say that he was still happy for us to take Niamh home but to take her back if she continues being sick or 'sicking' as Emilie would say! He also said that her white blood cells were slightly up 0.2, not much but it's a start.

Dr Peet also said that Niamh will most likely start cycle 3 next week.

Niamh has been quite tired today, and bored. By the time she got home this evening, she was dancing with Emilie on Emilie's bed. They were extremely happy to be reunited.
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Cycle 2 - Day 21 Hmm, Home Tomorrow?

Right, not home yet. Niamh is doing great, but the doctors want to wait for the results of the urine test before discharging us. As it is a bank holiday weekend the test is taking longer than planned.

If the test shows no infection they will most likely stop her IV antibiotics. If the test shows an infection, then they will prescribe a different antibiotic that can be administered through her ng tube. Either way we should be taking Niamh home tomorrow.

She is still neutropenic (no neutrophils, ie. No immune system) but this is likely to change over the next few days. She is still getting the gcsf injection every day.

Fluid on her head has gone down a bit better. Hopefully a good sign.

Dreaded cycle 3 is still planned for later this week.
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Cycle 2 - Day 20 A nice day in Hospital

Niamh has had a nice day in hospital, particularly enjoyed playing with her sister who is her favorite person in the whole world!! Emilie is being a great big sister and seems to know how to entertain Niamh.

So still in hospital this evening as Niamh had to have a blood transfusion and a platelet transfusion today (blood counts were very low, still no white cells). She is also still on IV antibiotics. She hasn't had a fever since Friday afternoon and she is looking great. Hopefully she can be discharged tomorrow.

She is still having episodes of vomiting but doctors don't seem to be worried about it. Fluid on her head is stable, not worse than it has been over the last week.
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Cycle 2 - Day 19 New Year's Day

Today has been an okay day really. Protein and a little bit of blood were found in Niamh's urine last night which possibly indicates a urine infection. A sample has now been sent for culture.

Niamh's had a good day in hospital, her temperature has remained under 37, heart rate and blood pressure are good. In the night and this morning, she seemed to complain everytime she had a wee but that stopped in the afternoon.

Dr Peet, the oncologist crossed off one of the very strong antibiotics (can affect hearing so best not to use too much of it). If she remains well and the blood cultures don't show anything by tomorrow afternoon, we may be able to take Niamh home in the evening. She may however need a blood and a platelet transfusion tomorrow which may delay us a bit.

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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