What Lies Ahead

It has been a nice weekend even though Niamh's temperature is keeping us on our toes at all times. It keeps going up to 37.8ish and then back down to around 37.3. As we have to take her to hospital if it reaches 38, it means that we haven't been able to fully relax.

Still we had a nice long weekend, we enjoyed the beautiful weather, the girls spent a lot of time outside. Niamh really enjoyed Mike and Nanny's short visit. Mike and Nanny were very impressed with her progress. Yesterday we enjoyed a trip to Granny and Poppa's and spent the morning in the garden, walking in the fields and looking at the horses and chickens.

Niamh is still progressing on all fronts, communication and motor skills. However she won't put anything in her mouth. She sits with us at mealtimes with a plate and a spoon and mainly plays with whatever food she has. It is a start.

We've had a few meetings over the past week where we have discussed Niamh's treatment. We haven't talked about it on the blog as we are still trying to come to terms with the implications of where we are now.

The choices seem to be as follows:

1) Do nothing. It may be reasonable not to give further treatment to cure Niamh. We don't seem to be able to contemplate this.

2) Chemotherapy. The oncology consultant doesn't believe that chemotherapy would work. He feels that Niamh's cancer returned despite being on high dose chemotherapy. We have argued that she had a four week break in February due to the shunts surgery and perhaps this was the cause of the relapse. He does agree that the relapse may be related to the break in the treatment but he believes that it is likely that the cancer is no longer responding to the chemotherapy. The tumour was growing and had grown to a significant size despite Cycle 4.

3) Radiotherapy. Niamh's oncology consultant believes there is a chance radiotherapy could cure Niamh. Radiotherapy of the brain is usually not given to children under the age of 3 and not recommended for children under 5. As Niamh will soon be 3 he is offering it to us as an option. The reason radiotherapy is not recommended for children under 5 years old is because of its long term side effects: growth and development are likely to be affected, learning problems, risk of second malignancies, possible permanent hair loss, etc.

We were told that if we do nothing, Niamh may have weeks, if we choose chemotherapy, she may have months, if we choose radiotherapy she may have years. It was an extremely tough meeting.

We have been investigating proton therapy, although only available abroad, it could reduce some of the long term side effects of treatment. It could also have unknown long term side effects. The radiotherapist and oncologist have been telling us that proton therapy would not be suitable to treat Niamh. Niamh's original tumour was 6 by 7 by 8 cm in the middle of her brain. They need to treat all the area as well as a margin for the treatment to be effective. Because of this, proton therapy would not make much difference. They did agree in our last meeting though that if available in the UK there could be benefits to partly using proton therapy and partly using radiotherapy.

We have spoken to the proton therapy centre in France but they have told us the waiting list is very long and they wouldn't be able to treat Niamh till August. This is way too late unfortunately. We have also looked in America. Unfortunately the main problem is that Niamh cannot fly for 6 weeks post surgery, then it takes 2 weeks for preparation, i.e. she wouldn't be able to start treatment for 8 weeks. It has been made very clear to us that time is of the essence. If she has radiotherapy in Birmingham she may be able to start in the next couple of weeks. The other slight problem with America is that the treatment would cost around £130 000. It would be like one of those films where the heroes have to find a massive amount of money in just a week.

We have signed the consent form for radiotherapy in Birmingham. Yet we are still looking around and trying to find some other miracle treatment. No luck so far. We will keep looking till the start of her radiotherapy treatment.

Niamh has an appointment on Ward 10 tomorrow to remove part of the stitches from the latest surgery. On Thursday Niamh will need to be at the QE at 8am so they can make her a radiotherapy mask. She will need to be under general anaesthetic as she needs to be very still.

The radiotherapy treatment will begin in the next 2 or 3 weeks (depending on scar healing). It will last 6 weeks and is likely to be early in the morning Monday to Friday. As she is young, she will need general anaesthetic every morning for the treatment. The main short term side effects are tiredness, some nausea, mucositis which they describe as mild, some redness/burning on the skin.

As always we are slowly adapting to this latest blow. Despite all, Niamh is a happy little girl, she spends most of her day smiling and laughing. She is determined to walk by herself again and she loves being at home with her family. She has impressed everyone with her ability to bounce back after everything she has been through over the last 6 months. We are so so proud of our little girl and we know that she will get through this.

Almost Back to Hospital

Strange day today, Niamh had a temperature when she woke up this morning. It was above 38 degrees c as we were having breakfast so we called hospital and they said to bring her in. We spent a good part of the day in a tiny room in A&E: Niamh, Emilie Helene and I. After a good 4 hours Niamh's temperature started to come down a little. The oncology consultant decided that seeing as Niamh has a little cold ad there was nothing worrying in her blood counts we could go home with strict instructions to bring her back if here temperature spiked again. They would also call us if the microbiologist found anything he could grow from her blood.

So we did get to go home and enjoy the end of the afternoon, the weather didn't quite hold out for a barbecue, so we cooked sausages inside instead. Niamh has been great all day, very happy and trying to join in, she struggles sometimes but 7 days after surgery that's fair enough. This evening her temperature is right down so we all have our fingers crossed that she will stay at home for the weekend and Nany and Mike's visit.

Day 5 Post Op - HOME

Niamh is home! It is a very nice surprise as we were expecting to be on ward 10 for a couple of weeks post op.

Niamh has impressed the neurosurgeons once again with her ability to bounce back from yet again another major surgery. Mr Kay, Niamh's consultant neurosurgeon came to see us this morning. He was happy for her to go home as long as her stitches looked clean and good. The nurse took all the dressing off, it was quite a job. Niamh cried but she was very brave throughout. Mr Kay was very pleased with the stitches, they look very clean and seem to be healing well. Niamh will have to go back twice next week, there are a lot of stitches and they are taking half of them off on the one day and the other half a couple of days later. The scar on her head is a lot longer than it was but it does look neat.

Mr Kay also sat with us this morning and showed us Niamh's MRI scans. The most recent one (Monday) looks very good, most of the tumour has been removed and now only microcoscopic cells are left. Unfortunately it does not change the fact that Niamh's tumour is very very aggressive and if left untreated would grow back big in a matter of weeks.

Niamh has had a nice day (despite the head dressing removal). She had a physio session this morning down in the gym. She did quite a lot of walking for a little girl who has had a 9 hour brain surgery five days ago and has been in bed since. She also did great with her crawling.

In the afternoon the speech and language therapist Jo came to see her. As Niamh is not dribbling anymore and seems to be swallowing her saliva well, we thought we would try her on chocolate buttons. She was not keen. She did well with her communication though. Jo felt that Niamh had improved a lot communicationwise compared to the last time she saw her a couple of weeks ago.

Niamh is doing better with her feed. Although we didn't get to weigh her before we left, we believe she may have lost a kilo over the last 10 days due to all the 'starving' she had to do for MRIs and surgery. Hopefully it won't take too long to get it back.

Alex and I will be meeting with the radiotherapist and the oncologist again tomorrow.

Day 4 - Post Op

Niamh is continuing with her progress. Temperature is now down, heart rate is fine too. She had a good night sleep but woke up at a ridiculous hour once again, 6am!! She didn't want to watch dvds, she wanted to wash baby Annabel and get her dressed.

Niamh did lots of playing in the morning, enjoyed the visit of Auntie Rachel. The nurse removed Niamh's catheter this afternoon (at last!) which meant Niamh could enjoy a bath. She was exhausted after it all. She resisted sleep for a while but eventually gave in. By the time Niamh woke up, Emilie and Caitlin had arrived (back from France). Emilie is looking great and very happy, in fact she hasn't stopped talking. Niamh was very happy to see them both.

Emilie was very happy to see that Niamh is no longer dribbling and is able to communicate a little better.

Alex and I had a bit more time to think about what happens next. We made some calls and we were glad to have another meeting with the oncologist. Nothing has been decided for sure yet but we are slowly getting a better understanding of everything.

Day 3 Post Op

Niamh is continuing to make good progress and impressing everyone. We are so proud of her. She was out of bed this morning playing play dough and making tea for the surgeons on their rounds. Niamh woke up well from the general anaesthetic she had for the MRI at lunchtime. She in fact does not sleep much considering all. She spent the afternoon/evening watching DVDs, playing with Emilie's Baby Annabel, making food for mummy and daddy and enjoying once again all the nurses'attention, especially Suzie. Suzie got a lot more smiles than we did.

The neurosurgeons are very pleased with the MRI. They are waiting for the formal report to commit but it sounds like most of the tumour has been removed. Once again we are so grateful to Mr Kay, Niamh's consultant neurosurgeon. The drain was removed this evening. I stressed about it for an hour and she didn't even cry.

Her temperature is settling, her CRP which was high yesterday 125 was down to 65 today which is good news.

Her heart rate is still low when she is asleep but the doctors don't seem concerned.

On the not great front, we had a tough meeting this morning with the radiotherapist and the oncologist. We are left unfortunately with some very difficult decisions to make.

Improvement

Niamh had a stable night and a relatively good day. She has been sitting up for most of the day, watching dvds and playing a little. She has been alert and interested in everything.

Her pressure sores are better. We are still changing her position every couple of hours through the night. Sitting up during the day helps.

The subdural drain has worked a little today so it is staying in for now.

Niamh is slowly getting back on feeds. She has been sick a couple of times today though.

She was very happy to speak to Emilie on the phone and made some sounds to say hello and bye.

Her heart rate is quite low this evening. The nurses are keeping an eye on it. The doctor says can be normal after surgery.

On the whole a very good day for a second day after another major surgery.
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A long first day post op

It has been a very very long day but pleased to say that it is now 10pm and Niamh is sitting up in bed reading books.

She was still very weak this morning and seemed in some pain. She gradually improved throughout the day. She is still spiking temperatures which is a bit annoying as it means she needs to stay on antibiotics for a while longer. The pressure sores are ok, no worse, possibly a little better.

She did have a couple of leaks from the area where she has the subdural drain. It was scary at first but we were reassured that it can happen. The consultant who operated on her yesterday visited twice today. He thinks it may be best to take out the drain tomorrow and stitch up the area. The drain hasn't been draining any fluid so far so it may not actually be needed.

Niamh is still feeling sicky. We have not yet started her on food. Hopefully in the night.

As always she is impressing us with her recovery so far and we just hope it continues.
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The Morning After

Niamh had a restful night. She woke just a few times to be turned over. She's had paracetamol and some codeine. This morning she looked at family photos for 5 minutes and she can recognise everyone and point to them. 5 minutes was enough though...back to sleep now. She's steadily moving her limbs which is really good.

We slept pretty well in a spare bay opposite Niamh as we knew Janice, her nurse, would take excellent care of her. We just helped with turning her a few times.

Back on Ward 10

We've bought Niamh back from the recovery room at about 8pm. She's doing fine, she had a quick bloody vomit and is quite sleepy. There is a little response from her hands and feet which is good. We'll be looking for her to be able to move all her limbs as she recovers.

The consultant neurosurgeon said that the operation went very well. He is confident that they managed to resect a lot of the tumour. Perhaps more than her previous surgeries. We'll see exactly when she has her post op scan.

He said a hard part was closing up the craniotomy incision after two previous surgeries. She has no head bandage but she does have external subdural drain to try to avoid blocking her shunts with blood/debris from the operation.

Unfortunately she has a couple of pressure sores on the back of her head from a new horse shoe headrest they have in the operating theatre. She'll need to be rolled over every two hours to try to keep pressure off these areas. A plastic surgeon will come and review them tonight.

We're very relieved that Niamh is back with us and look forward to seeing her cheeky smile.

Emilie and Caitlin are in France at the moment visiting Emilie's cousins. We hope Emilie is paracticing lots of French and having lots of fun. X x
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Finishing

We have just been told that they are finishing up, so probably another hour wait till we get called to recovery.
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Still in theatre

Niamh is still in theatre, it's coming up to 8 hours. We have been told it is going well so far. The wait continues...
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In theatre

Niamh has just gone into theatre. She's had a nice morning walking around the ward and playing hide and seek. She has been left in charge of Emilie's doll, baby Annabel and she is taking her role v seriously.

She was amazing in the prep room. She was smiling at the anaesthetist and went to sleep very calmly.

Now the wait begins once again...
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Pre Op Day

We have had a lovely day. We said goodbye to Caitlin and a very excited Emilie this morning. I was worried Niamh would get very upset but she was ok. We had a lovely walk, played everything and enjoyed the visit of Poppa, Auntie Rach and Will.

The hospital asked us to go in for 2pm for blood test. They wanted to make sure she had enough platelets before tomorrow's surgery. She did! Phew. We were then told we could go home and come back in the morning around 7.30/8am for surgery at 9am. Niamh was so so happy.

We've had a nice evening. It feels a little strange and very quiet with only one child. We've skyped a few times with Emilie. She's having a fantastic time, planning a visit to the beach tomorrow. Niamh has enjoyed seeing Emilie, Nanny, Mike and Caitlin on the screen and 'chatting' to them all.

We're so glad she can sleep in her own bed tonight. Tomorrow likely to be a very very long day. The surgery is planned for 9am and likely to last 6 hours or longer.

Home for 24hrs

It has been a long long day of waiting but we made it home for 7.30pm.

Niamh was starved for possible MRI/surgery at 9am, ie stopped her feed at 3am and stopped fluids at 7am. Even though the surgery could not take place today the consultant was keen to get the images done today. As she is so young, she needs general anaesthetic for the MRI, even though it was very short this time. So the wait began and went on till 4.45pm. Needless to say Niamh was starving by then and feeling quite tired. It would seem that the delay was due to a pb in communication. Luckily Emilie spent the day with Niamh and kept her happy.

It has been nice having an evening altogether at home. Emilie and Caitlin are off to France tomorrow morning till next Tuesday. Emilie is very excited as she will get to see her French cousins and she is hoping for a swim in the sea.
Niamh needs to go back to hospital tomorrow evening for hopefully surgery on Friday.


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Not today

The surgery will not be today. The consultant is hoping for Friday. We are waiting now to hear when she can have the scan. Hopefully we will be able to go home for a bit.
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News

Niamh is so happy and well it is hard to believe that the tumour has started growing again. Niamh has had a fun day, lots of playing and giggling. She enjoyed the company of Emilie and Caitlin this afternoon. Lots of cuddles and kisses too. We obviously made the most of them.

The consultant oncologist came to see us around 5 this afternoon. They all agree that surgery is the next step. This may happen tomorrow, Friday or early next week.

Another child is due to have surgery tomorrow but they may have to wait due to bedding reasons. If it is postponed, Niamh will have her surgery tomorrow. So basically we will find out in the morning.

Niamh will be starved for 9am just in case. If they go ahead with her surgery, she will need to go through another MRI first as some images were not done and they are crucial for the navigation for the surgery. There are expecting the surgery to be quite long and complicated. The tumour is in the original area which is close to very very important veins. The consultant surgeon seems confident he can take a bit chunk out, but unfortunately not all. He is also planning to make a hole in the membrane that separates both ventricles so they are connected again and so that the vp shunt can work for both ventricles.

The risks are the same as for the two first surgeries back in Oct/Nov. There are however more risks of scars not healing properly (as it will be the third time they open the skin in that area), csf leaks (if scar doesn't heal well) and shunt blockage.

As always we are confident that Niamh will impress us with her recovery. She is a strong and brave little girl with a fantastic determination!

The oncologists will meet to discuss the plan for after the surgery. There has been talks of further chemotherapy, radiotherapy including proton therapy. Proton therapy may be an option as the tumour has stayed localized. The centres for proton therapy are in the US and also in France. UK patients are usually sent to the US for language reasons. In our case they would consider getting in touch with the the centre near Paris.

Yesterday was a major blow but we are still very positive that with all the wonderful support we are getting from friends and family Niamh will get through this whatever it takes.
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No news but great morning

Niamh is in full form this morning, a very happy little girl enjoying all the nurses' attention.

She has done lots of crawling on the bed, lots of walking (holding my hands) up and down the corridor playing hide and seek with Paula, the play specialist. She also spent time in the playroom, playing with the kitchen standing up. She can now stand up unaided even though she likes us to hold her hand.

After all this I thought she would be tired but no, she got all excited when the physio arrived and suggested we went down to their playroom for a session. She enjoyed being allowed out of the ward. The physio worked mainly on her kneeling and crawling. Niamh is now at last having a rest watching a dvd. Phew!
Still waiting to hear 'the plan'. There has been talks of a possible surgery on Friday but nothing has been confirmed.
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Not good news...

It's a busy day for Ward 10 and Oncology and a lot of waiting for Helene, Caitlin and Niamh. Emilie has enjoyed a day with Rachel and her cousins.

We've had a look at today's scans with one of Niamh's surgeons and unfortunately the news is not great. Niamh's cancer has grown since her last MRI scan on 7th February. We don't know how this affects 'the plan' yet until the consultant Oncologists and Neurosurgeons can speak. It sounds like more surgery is a possibility though.

Today's news is a big blow for us all but we are still hopeful Niamh will be well again. We're certainly confident that Niamh will continue her fight.
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In the room

Niamh's MRI was delayed. She went in at 12.25. Long long morning and most likely a long long afternoon!
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Sunny, Sunny, Sunny *

What a great weekend. The sun was out all weekend. It was lovely to have Niamh and Emilie at home. We didn't go too far, just a visit to Granny and Popa and the rest of the time around home and our garden. Niamh loves to go on the trampoline and also her bike. She has walked lots which shows how much the pressure in here brain was affecting here at the beginning of the week when she couldn't walk. She's been doing a lot of talking though it's hard to make out words, just sounds really.

On Saturday night we had a little 'being at home' party with indian takeaway, Emilie loves indian food. Niamh enjoyed playing with the nann bread and popadoms but couldn't pluck up the courage to try any.

Back in hospital tonight ready for MRI scan under general anaesthetic tomorrow at 9.00. We're nervous about it, especially after last weeks CT scan and the uncertainty whether Niamh's disease has progressed. We may have to wait for results but hope to hear at least something tomorrow.

Home Leave

Home for the weekend.

Niamh had a nice evening with daddy yesterday, fell asleep around 10pm but unfortunately woke up an hour later and was sick. She had a new Ng tube and went back to sleep. She had a relatively good night.

We had a nice day in hospital today. Emilie was off school so she spent the whole day with us. Niamh had a speech and language session as well as a physio session this morning. For the physio session, we went down to the gym in the physio department. Niamh did some great standing and walking. She seems a lot more stable on her feet than she was before. Emilie was a great source of motivation as always.

This afternoon Niamh had a blood transfusion. Her HB was 7.1 yesterday and 7.6 this morning. It is coming up but the doctors still wanted her to have a transfusion.

Once off the drips, she did lots of walking waiting for the consultant oncologist. She was so happy when he walked in and told her she looked great and was wearing a pretty dress.

We got home around 7.30pm this evening. Niamh was very very happy; she chatted all the way back in the car. Her communication has improved a lot since the operation, she is making more sounds and is really trying hard. Dribbling is as bad as before though.

We have to go back to Ward 10 on Sunday night. Niamh will have an MRI scan on Monday morning under general anaesthetic. Hopefully the suspicious thing that the neurosurgeon saw on the CT scan last Tuesday will be nothing to worry about. If it is, then there will be a total review of Niamh's treatment to come. If it looks okay, then she should be able to start Cycle 5 next Friday or the following Monday.

So the plan is to have a nice weekend and not think about the week to come.

A bit of good news

Firstly the bit of good news. We found out this evening that the CSF fluid taken from the left ventricle yesterday is clear, no cancer cells. Phew!!! Also we may be able to take Niamh home tomorrow.


Niamh was very settled through the night. She woke up a few times but went back to sleep really quickly once in a different position. She was on hourly obs for the first part of the night and then two hourly obs and all was good.

She woke up calmly around 6am, a bit early for my liking!!! Niamh has had a lovely day on the whole. She has played nicely, been interested in stories, has interacted well all day. She has been enjoying the attention from all the staff on Ward 10. She has spent so much time on Ward 10 over the last 6 months that she is known by all of them, even the students! She particularly likes Kelvin, one of the students who kindly took her cannula out of her hand this morning. She wasn't too bothered about the cannula in her hand yesterday but today she woke up, looked at her hand and was not impressed. She made it clear that it had to come out.

Niamh also enjoyed a photoshoot this afternoon. Jason, a photographer, whose son was also recently diagnosed with a brain tumour was doing pictures for a magazine for the hospital. Niamh was happy to model and looked really cute with her post surgery hat/bandage.

We did not do any physio today, didn't want to do anything too quickly. Still we had a go at standing up and she was able to put weight on her right leg. She will have a physio session tomorrow morning and hopefully things will be back to how they were last week.

Other positive results from the surgery: Niamh is not dribbling and has been moving her tongue a lot more. Niamh started dribbling after her second surgery on 3rd November. She also was no longer able to pull her tongue out. Today it all seems much better. She is making sounds, said 'no' very clearly and possibly even 'plane'.

So on the whole a good day with some good news. Now we need to wait for the MRI scan on Monday.

Emilie is now off school for the next 20 days (hmmm). She has been happily surprised this week to meet a boy from her school (class above her) on Ward 10. They have been playing nicely together.

Niamh's 5th brain surgery

Niamh was quite unsettled through the night, her heart rate was v unstable, up and down indicating some pain somewhere. She had some painkillers in the middle of the night (delayed as painkillers hadn't yet been prescribed and they had to wait for a doctor to come and prescribe them). It did help a little. Around 5.30am she was sick, ng tube came out. It seemed pressure related. She then fell asleep in my bed, gradually squeezing me out of bed. She woke up around 8.30am, at first happy but they became unsettled and drowsy. She seemed to struggle to stay awake. At 10am she was sick again even though she had been starved since 2am.

Luckily she was called into theatre around 10.30am. I had explained to Niamh what was going to happen. She was amazingly calm all the way to the pre theatre room. She did not cry when she saw everyone in their funny pyjamas and colorful hats. She remained calm and went to sleep peacefully.

Then began the wait. We are now used to long surgeries so it was a shock when we bumped into the surgeon in the staircase at 12.30. He told us the surgery had been straight forward, all went well.

We were called into the recovery room before they started to wake her up. It was nice as it meant that Caitlin and I could gently wake her up. she was back on ward 10 by 1.30pm.

She has been relatively settled this afternoon. She was very red in the face, patchy red, when we first arrived. The nurse was worried about an allergic reaction but luckily it disappeared on its own. She is moving all her limbs. Her right leg is still showing some weakness. Hopefully it will gradually improve. We have had some smiles, some nice interactions and even some cheekiness. She was awake all afternoon and has only just fallen asleep.

The surgery was the third attempt at controling the pressure in Niamh's brain. The surgeons put a vp shunt in the left ventricle of her brain which drains in her tummy (on the right, same as before). She is badly bruised on the left side of her neck where they had to tunnel the line.

They have taken some fluid from the left ventricle for testing. We should know over the next couple of days if there is any disease in the fluid.

Niamh will also have an MRI scan on Monday to check the pressure in her brain(fluid) and also to investigate the 'suspicious bit' seen by the surgeons on the CT scan.

Not quite the week we had expected. She is doing fantastic as usual. Thank you for all your kind messages.

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Accident & Emergency - Shunt Problems

Today we started with an early morning trip to A&E. We managed to time it quite well to get the Doctors after their ward round. We got there about 8.30 and the nearly the entire neurosurgical team and Niamh's very kind oncology registrar came down to see her at about 10.

We explained about her bump on her head being a little firmer each day, her cramps in her legs and not wanting to walk and possible headaches. In general she hadn't really been her self, it seemed something was up. Niamh's surgeons and Dr agreed and arranged for her to have a CT scan and x rays of her shunt to see if fluid was building up in her head and to see if they could see where her shunt was malfunctioning.

Niamh was really great for the CT Scan, she kept perfectly still and didn't cry at all. We'd been preparing her for it all morning and I think that helped, saying that she would lie down and asking her who's hand she would hold. Mummy and Daddy. If she could do that for the MRI scan that would be amazing, but perhaps 40 minutes in a super noisy room would be too much...

The rest of the day was spent waiting for the inevitable. There was some talk that maybe we were there for observation only but that was not to be true. It turns out Niamh is second on the list for surgery tomorrow when she will have her shunt revised. She will have a new VP shunt fitted (into the ventricle, the ones before were just subdural) and maybe one or both of the subdural shunts removed. The surgeons said it would depend very much on what they find when the test the pressures on the various catheters. In the end they would prefer to be left with no more than two catheters though.

There was also some talk of whether Niamh's cancer is progressing with the delays she is having in treatment and from reviewing the CT scan. It's early to say for sure but, needless to say, this is very worrying for us. Niamh may have an MRI very soon, tomorrow or next week or the one she has booked on the 18th. This should show a clearer picture than the CT scan today.

If everything goes perfectly Niamh should still be able to start her next round of chemotherapy next week.

Please keep Niamh in your thoughts and prayers both during her surgery tomorrow and over the coming weeks of chemotherapy. It's going to be a difficult few weeks for her.

Cycle 4 - Day 35

Not such a good day today. The bump on Niamh's head (fluid) has been slowly coming back over the last few days and it seems quite firm today. This means that the shunt is not working at the moment. It did happen a couple of weeks ago and then just started working again so we just have to hope that it resolves itself over the next few days.

To make things a little more stressful, Niamh seems to be struggling to put weight on her right leg today. We did have a 'mummy/aunty' physio session this morning, she did well but we noticed a bit of weakness with her right leg. This evening she was not wanting to stand at all. It may be a direct link to the build up of fluid in her head (too much pressure).

She also complained this morning of a headache (well cried and showed her bump).

So the plan for this week:

Ward 10 - Possible review with the neurosurgeons on Wednesday if we are still worried about her bump. We have discussed her symptoms today over the telephone and they don't seem too worried. The symptoms they would be more worried about are vomiting and drowsiness which she doesn't have so far.

Ward 15 - Niamh may be able to start Cycle 5 chemo on Friday rather than Monday if her platelets are okay. We should hear tomorrow if the drugs can be given over the weekend or not.

Cycle 4 - Day 30 to 34

Niamh's platelets have still not recovered. Her platelets were down to 55 on Friday, 49 yesterday and 45 today. They usually transfuse when it goes under 50. They agreed to wait yesterday as we were hoping they would start going up today. Unfortunately they hadn't so she had a platelet transfusion this morning. It is a real shame as it is now unlikely that she will be able to start cycle 5 this week. I can't deny though that another week at home sounds great!

Learnt something new today: alcohol causes low platelet levels. So basically if you have a few too many drinks on a Saturday night, you may end up with quite low platelet levels the next morning. Luckily they come back up pretty quickly. Thought I would share this interesting fact!

We are all enjoying life at home. We had our first almost normal day yesterday. We took Niamh to see her grandparents in the morning (she has been to theirs only about 3 times since she was diagnosed) and we had friends over for dinner (first time in about 6 months). Niamh and Emilie really enjoyed having their little friends to play, Niamh particularly enjoyed the hugs and kisses at the end.

Niamh is continuing making good progress with her standing and walking. Hopefully she can make even more progress this week.

The Ng tube is now 9 days old, the new record since starting chemotherapy in November. Niamh hasn't been sick since last Saturday (8 days ago). She is now back on her normal feeds, which is great as they don't have to be changed every four hours in the night. Sleeep...

Blood counts today are:
HB - 8.9.
WCC - 2.8.
Platelets - 45.
Neutr - 1.7.