Pictures and Videos

Another lovely weekend. Niamh keeps on making good progress with her walking and standing.

Pictures:

1) Niamh enjoying a bike ride with daddy. The rucksack contains Niamh's feed. She is a girl, she can multitask (eat and ride a bike at the same time).

2) Niamh and Emilie enjoying 'au pas, au trot, au galop' with Auntie Caitlin. Caitlin moved in with us last November to help with ... everything. Without her we would be totally lost. She is not only a fantastic help on all front but also wonderful support. Plus she is a great nurse.

Videos:

1) Egg and spoon race with Emilie.

2) Egg and spoon race by herself + standing on her own at the very end.

Great Progress

Niamh is making fantastic progress.

Yesterday was a lovely day, blue sky and sun shining. Niamh and Emilie enjoyed time in the garden on the swings. Emilie had a go on the trampoline, Niamh was keen too but it didn't seem quite right three days post surgery. Luckily she was happy watching and cheering Emilie.

Today we took the girls to Granny and Poppa's in Burcot. Niamh hasn't been anywhere for the last 5 months apart from the hospital and home. It was quite an adventure for her. By the time her cousins and aunties had arrived, she felt a little overwhelmed. She soon settled down thanks to Emilie and enjoyed everyone's company. In fact she was keen to show off her crawling, standing and even walking (with help).

By the time we got home, she still had lots of energy (even though we had none left!). Emilie and Niamh baked a chocolate cake for daddy. Niamh loves playing with food, perhaps it will eventually tempts her into eating it. She then tried to do more standing and got very excited when I let go of her and she realised that she could almost stand by herself. After a few attemps, she successfully stood unaided for 3 seconds at the time. She was laughing too much to last any longer. She is very determined to walk again.

Home!

Lovely morning on Ward 10. Emilie came to play with Niamh, we just sat back and watched them play. Niamh was in total adoration for her sister, she kept cuddling her. Emilie also helped with Niamh's physio session. Becci, the physio soon realised that Niamh would do anything that Emilie asked. So, great results: crawling, kneeling and standing (the straightest standing we've seen so far).

Niamh was discharged after physio and we were home for 1pm. Still can't quite believe that we are home 36 hours post op but it is great.

Niamh has done lots with Emilie this afternoon, no sleep. She is no longer shaky, seems to be able to concentrate on tasks for much longer and generally looks well.

Monday's surgery really shows that Niamh still had a lot of pressure in her head. We are wondering now whether some of the vomiting over the last few weeks were partly due to the pressure in her brain and not just the chemo.

Anyway plan now is ct scan on Tuesday and appointment with oncologist. If all well (ie. No infection or shunt blockage), Niamh will start cycle 4 on Tuesday. The first 10 days of cycle 4 are at home so we may be home for a good couple of weeks!!! That would be the longest length of time we have spent at home as a family in 5 months.
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Good Recovery

Niamh had a good night sleep last night despite the noise on the Ward and the regular obs. After a brain surgery, they have obs every 30 minutes for the first four hours, then every hour for the next four hours, then every two hours, etc. We are now on four hourly obs so a lot less disruptive.

Niamh's recovery today has been impressive. I couldn't keep her lying down for long, she was all sat up by 8am ready to be entertained. She has been cheeky, cuddly, playful for most of the day. I even gave in and let her do some standing towards the end of the day. The surgeons have said it is fine for her to sit up/ stand, etc but not to overdo it on the first day.

She is back on her usual feed and so far no signs of feeling sick. Let's hope it continues like this.

Her main problem today has been the bandage on her head, it seems to make her forehead very itchy.

The surgeons have said that she may be discharged tomorrow which would be great as Niamh is already ready to come home.

New plumbing

We arrived on Ward 10 nice and early at 8am. Niamh was v happy, spent most of the morning being cheeky, showing off her standing to the nurses and getting lots and lots of attention from them all. For the first time the clown doctor came when she was awake; lots of giggling!

At 3.30pm she was taken to theatre. We were called to the recovery room at 7.30pm. We are now back on the ward, she is asleep and seems well.

The neurosurgeons did not think anything of our deflated bump story so our hopes of not needing surgery were short lived. They still wanted to wait for Mr Kay, Niamh's consultant before making any decisions though. Mr Kay came at around lunchtime and said the CT scan from Friday looked good. The shunt is working great but unfortunately there is still some fluid on the front and left side that is causing pressure. It seemed best to act on it now.

There were many options but they decided to go for a strata programmable valve and two catheters. One on each side of her head linked together by a Y connector which drains through the valve under the skin at the back of niamh's head, down to her tummy.

We're very hopeful that Niamh's new plumbing is going to help her feel better.
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Very confused

Great family weekend with two very happy girls.

Niamh woke up on Saturday morning, very happy and with bump still very visible on her head. An hour later, Emilie made a very loud noise with a toy which made Niamh jump a little. Within 5 minutes, the bump on her head had disappeared and hasn't come back, ie. the fluid has moved from there.

Niamh also has made great progress this weekend, more talking, some great standing and crawling, lots of laughing. She hasn't wanted to sleep in the afternoons, doesn't want to miss out on anything. She has been doing great with her food too. So no signs of underdrainage or overdrainage of fluid.

We are totally confused. Was there a blockage and the 'loud noise' jump unblocked it? Is there still fluid under the skull or has it gone too? What is going on?

We can't help but hope that the surgeons will have a rethink about the surgery tomorrow. Could she get away without another shunt for now anyway?

Whilst hoping, we are still all packed for another week on Ward 10 and prepared for a shunt surgery tomorrow or Wednesday.

Another Setback

Niamh needs another shunt!

Niamh had been doing pretty well over the last 48 hours so we went into the hospital with hope this morning. We were aware though that the bump on the top of her head (fluid) which had disappeared after the shunt surgery was back a little on the left side but tried not to think too much of it.

The CT scan showed that the fluid on the right hand side of her head (under the skull) has gone which is great news; however there is still a lot of fluid on the left hand side (under the skull) which explains the build up of fluid on the top which we can see. We don't think we will ever know if that fluid had actually gone and is now back, or whether it never went.

It is very confusing as 1) the bump on the top of her head had totally gone for a week and it even looked like the skin on her skull was being sucked in, so what has caused it to come back on the left (many unanswered questions); 2) she is much better now and yet there is more fluid, ie more pressure in her brain.

Niamh will now need a shunt on the left hand side of her brain too. The oncologist would like the surgery to take place as soon as possible to avoid too much delay in her treatment. She has been put down on the emergency list for Monday but it all depends on other emergencies over the weekend. If she cannot have it on Monday she will have it on Wednesday.

We don't yet know which type of shunt or where exactly they will be putting this new shunt. They are waiting for the Consultant to decide (back from his holiday on Monday, phew).

So a bit of a setback, we were looking forward to a week at home during Emilie's half term, now it will be another week on Ward 10.

On the positive side, Niamh has been so much better today, she is still trying to say a few words and she is being very smiley and much happier than earlier in the week. She seems to have problems at times controlling her emotions but we won't worry about that too much for now.

Niamh also had a hearing test this afternoon and she passed it which was a relief.

We've had a lovely evening and are looking forward to a nice family weekend before another week in hospital.

Nice to be home

Niamh was still not great this morning. She woke up happy but around 9.30am became very unsettled and cried for a bit. Quite sure it was a headache. I gave her some paracetamol and within 30 minutes she seemed better. She played a little, did a bit of crawling but tired quickly. Around 11.30am the community nurse came to change Niamh's dressing on her central line. When she arrived Niamh was all smiles, by the time she left she was in tears. She fell asleep soon after (too much stress changing the dressing).

By 1.30pm we got very concerned that her shunt was overdraining the CSF (fluid in her head) which was causing her headaches, tiredness and vomiting. I talked to one of the doctors on Ward 10. He seemed to say that signs of overdrainage are headaches that don't go away with painkillers, drowsiness and vomiting (a couple of day or more). We decided to wait till she woke up to decide whether a trip to A&E was necessary.

Amazingly she woke up at 2pm, very alert. She wanted to go and get Emilie from school and loved seeing all the kids at the school. By the time we got home, she played with Emilie and even danced and played with her new piano. She had a bit of a moment around 5pm when I thought she was going to be sick but it passed. She then continued being cheerful and smiley. By the time it was time for bed, she decided she wanted to practice her standing and crawling. She did pretty well considering she hasn't been on her feet for a week.

And the happiest moment of the day was when she said, admittedly very very quietly: 'maman'. I wasn't sure I heard it right, but she said it again and again. Even Alex agreed that he heard her say it. Emilie then made her say 'mimi' and she did too. Again ever so quietly. Could it be a start?

Home at Last

The doctors were happy to let us go this morning. Niamh was so pleased when I told her we were going home. I have never seen her so keen to get washed and dressed. We did have to wait a little for the medicines to take home but were home for 1pm. Niamh smiled all the way to the car.

By the time we got home she was too tired to be happy. She had a 3 hour nap on the sofa and unfortunately missed her opportunity to pick Emilie up from school. Emilie was v understanding. She was so happy to have her sister at home. Niamh woke up feeling ok, she was happily entertained by Emilie. Around 5.30pm though she became unsettled. We weren't sure if she was in pain or feeling sick. A short while later she was sick, tube out. Luckily Alex is now assessed to replace the Ng tube. It makes such a difference. I cuddle and comfort her and Alex places the tube, she hardly gets upset.

Despite her long afternoon sleep she was keen to go to bed at the same time as Emilie tonight (unusual for her). She still seems very tired from last week's surgery and I guess the last 4 months.
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Shunt - Day 5 Post Surgery

Niamh has had a good day on the whole.

She had a good night sleep but woke up at 5.30am ready to start the day. By 7.30am she decided that actually she wanted to go back to sleep for a couple of hours. She was fine in the morning but seemed to suffer a bit at times. Once she had some paracetamol she was great. Not quite sure whether the pain is in her tummy (cramps) or in her head. She had a nice three hour afternoon nap and woke up very happy. Nice evening.

The doctors were a little concerned this morning about the vomiting over the past few days. They asked for full blood counts. Everything came back fine. The surgeons don't think the vomiting is due to the surgery, the oncologist doesn't think the vomiting is due to the chemotherapy. Hmmmm.... They did agree though that it may be due to the difference in the pressure in her head due to the drainage of the fluid. They would expect it to settle now. So fingers crossed, no more vomiting.

The plan at the moment is for a discharge tomorrow morning. Emilie prayed this evening that her sister and mummy will be coming to pick her up from school tomorrow afternoon.

Shunt - Day 4 Post Surgery

Niamh is still on ward 10, she is still struggling keeping her feeds in so needs to stay a bit longer. Two vomits today and two new Ng tubes; on a positive side, Alex is now fully assessed to pass Ng tubes! It will make life much easier when we are at home. My turn to practice passing the tube. Hopefully not tonight though.

Niamh has had a nice day on the whole, despite a few moments of nausea. She really enjoyed seeing Emilie and Emilie's colorful nose (no black eyes luckily).


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Improving

Niamh has had a much better day today. She had a lovely sleep last night and woke up feeling good. She was sat up for most of the morning, enjoyed being entertained by Bradley. We had a couple of walks around the ward, one of them playing hide and seek with Nanny. Niamh was giggling away.

She looked much better today (less pale) and had a lot more energy thanks to the blood transfusion from last night.

She coped well with her feeds for most of the day, but vomited in the evening. New Ng tube. Alex is getting assessed to pass the tube and he has now passed two, one yesterday and one this evening. Niamh is actually calmer when Alex passes the tube. I am not sure I can/want to do it yet.

We are hoping to take Niamh home tomorrow.

She will have a scan and review next Friday.
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Ward 10 and Emergencies!

Niamh has had a better day today. The consultant said we could now start to raise her and eventually get her to sit. As she has been lying down for 48 hrs, he warned that she would feel a bit dizzy and headachy so they are keeping her on painkillers. She is definetely enjoying being a bit higher up. We haven't quite got to sitting yet but hopefully tomorrow.

Niamh has been very pale since her surgery. Her haemoglobin level was 8. Dr Peet, the oncologist decided it was best to order a blood transfusion which she is just about to finish. He said that general anaesthetic can sometimes cause the blood counts to drop. So hopefully less pale tomorrow and also more energy.

She vomited in the night so needed a new Ng tube this morning and vomited again around 5pm so needed to have another Ng tube.

On the whole Niamh has been tired but still enjoyed her visitors and had some smiles. She particularly enjoyed a game of hiding behind her sheet with the play specialist.

The trip to emergency (downstairs) was not for Niamh but for Emilie. Emilie fell in the schoolyard at lunchtime, landed on her nose. Her nose was badly bruised and scraped so the school called for us to take her to emergencies. Luckily Nanny came to the rescue, picked up Emilie and brought her to the hospital. Nanny stayed with Niamh and I took Emilie down to A and E. After a two hour wait, the doctor asked Emilie if her nose was hurting and she said no. Hmm, it looked painful just watching it. The doctor said she would most likely be in pain later on. Anyway the doctor said to keep an eye on her as she hit her head. For the nose she said to come back in 5 days if the swelling hasn't come down. She is expecting her to wake up with two black eyes tomorrow.

After A and E, Emilie came up to ward 10 to see Niamh, made a new friend, funny Bradley (Niamh's neighbour) and had a lovely evening.

Doctors are keen to discharge Niamh at some point over the weekend.
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Day 1 Post Surgery

Niamh slept relatively well last night. She was on hourly checks throughout the night (blood pressure, heart rate, resp rate, temperature as well as alertness) so she was woken up a lot.

Today was ok, though a bit boring as Niamh had to stay lying down on her bed all day. She watched dvds and slept for most of the day. She got quite upset at one point when she tried to sit up and I told her she had to stay lying down for a bit longer. :(

Niamh has been on paracetamol and codeine since the surgery. We are now trying to see if she can cope with less painkillers.

She vomited this evening and the NG tube came out unfortunately. The nurses were great and she had a new tube within a very short time. She went straight to sleep after the ordeal.

They seem to be expecting her to feel a bit better tomorrow. Hopefully the consultant will say that we can start raising her up a bit.

Shunt Surgery

Today Niamh had her shunt fitted. It was an early start, we were at the hospital for 7.30am. Niamh had a general anaesthetic at about 12 and she came back onto the ward at about 3pm. She is on antibiotics Gentamicin and Vancomycin to avoid infection (3 doses of each).

The shunt Niamh has fitted is a subdural–peritoneal shunt and it is valveless. The idea is to reduce the size of the collections of fluid above the brain. Immediately after surgery the bump Niamh had on her head had pretty much disappeared.

She was pretty sleepy after surgery but has had a couple of hours awake time watching dvds. We've had a few smiles and some cheekiness. Where the shunt catheter has been tunnelled under the skin will be painful for a while. Niamh is also supposed to stay lying down for a couple of days which is OK for now as that's all she fancies anyway.

She should be having a follow up scan shortly (don't know if it is MRI or CT) to see if the shunt is doing its job correctly.

Niamh's consultant oncologist let us know that the results of Niamh's kidney test were fine. He also confirmed the results of Monday's MRI scan following the official report.

Sunny Day

What a lovely day, the sun is shining and don't have any hospital things to do today. We had a very nice walk by the canal to Emilie's school where Niamh watched all the children play in the playground.

Niamh has been very happy and seems to be moving her mouth and tongue more now. Perhaps tomorrow's surgery will give her a boost with this too. She is being very cheeky at the moment and is really making the most of feeling a bit better. She is tolerating her NG feed and water much better and has had her full calorie intake in the last 24 hours.

We're as prepared as we can be for tomorrow's surgery and we're sure it is the best thing for her.

MRI Scan - Evening

We're all back home and so pleased that Niamh's treatment so far seems to have been working and that she is still on track to beat the cancer.

We saw the MRI pictures and although there is no official report they do look positive to the untrained eye. After her second surgery Niamh had two small areas of residual tumour, one of those was easily visible on her post op MRI. This area of tumour seems to have disappeared. The second area is still difficult to make out as there are major veins there. Niamh's consultant said that there were some very small areas of tumour which could be seen.

This is very positive news that the chemotherapy is working. Cycles 1-3 were worth it! Niamh and the rest of us can continue Niamh's chemotherapy with renewed hope and strength.

Something that was quite clear from the scan was that CSF (Cerebrospinal Fluid) was building up on the outside of Niamh's brain and in one of her ventricles. The neurosurgeons have told us that they need act on this and that now is the best time to surgically fit a Cerebral Shunt. Niamh's immune system is currently recovered from chemotherapy and she is between cycles reducing the risk of infection from the surgical procedure.

The cerebral shunt should remove the excess fluid under the bump on Niamh's head as well as releasing the pressure in one of her ventricles. She should benefit from this neurologically, we can only wait and see.

So.... Niamh is booked in for her shunt surgery this Wednesday. Hopefully after one and a half hours operating time and an interlude of 10 days recovery Niamh will continue with cycle 4 of chemotherapy.

Thank you to everyone who has been thinking of Niamh and praying for Niamh today and every day. Knowing that Niamh has support from so many friends and family and their communities keeps us determined and full of hope.

MRI Scan

The consultant has just been and it is GOOD NEWS. They can't give us the full report yet as there are about 270 images to look through but the main ones are looking positive.

He did say that the tumour has almost disappeared.

There is however too much spinal fluid in Niamh's brain. We are waiting to hear from the neurosurgeons. She may need a shunt.


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Cycle 3 - Day 28

It has been a nice weekend at home. Niamh was a bit overwhelmed at first but has now got used to being back home.

Her Ng tube came out when she vomited last night. She made a brief visit to ward 15 to get a new tube this morning. We may ask to be assessed so we can do it ourselves.

When we were originaly assessed to use Ng tube for feeds, we didn't specially want the responsibility of placing new Ng tubes. Hadn't realised how often they would come out.

The fluid on her head (bump) has remained quite tense all weekend, as it was at the end of cycle 2.

She has had moments of shakiness. We are trying not to read much into it as it can be a side effect to one of her medicine.

Anyway, big big day tomorrow. We need to be at the hospital for midday for an afternoon MRI slot. The last MRI scan she had was after the second surgery on 5th November.

We're hoping the last three months of chemotherapy have proven successful! The consultant will hopefully tell us a little tomorrow evening.

Cycle 3 - Day 26

Home at last with two very giggly girls. Emilie is being fantastic, she is doing everything to make Niamh laugh and Niamh is laughing!!

Niamh's oxygen level was relatively stable through the night so the doctors were happy to let us go. We were hoping for an earlyish discharge but once again didn't leave the hospital till 6.30pm. It is so nice to be reunited at home as a family after a month in hospital.

The anaesthetist seems keen to go ahead with the general anaesthetic on Monday which is good. The doctors have warned us that we may need to stay overnight if her oxygen drops again after the general anaesthetic.

Hopefully a peaceful weekend before the big day on Monday.
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Cycle 3 - Day 25

Niamh has had another lovely day. If only we could be at home!

Oxygen is still a problem but it seems to be slowly getting better. She needed oxygen last night for the first part of the night. I took it off around 3am and her oxygen level remained above 94. Her afternoon sleep went well as well - no oxygen required.

The doctors are keen for us to go home but they want her to have a full night sleep without needing oxygen. So fingers crossed, we may be able to take her home tomorrow or Saturday.

The physio wasn't here today. We had our own session with the help of auntie Caitlin. Niamh is making good progress with her standing and cruising.

Niamh also had a very fun session with the speech and language therapist, Sarah. Sarah came with some bubbles and was showing Niamh how to ask for more using a sign (Makaton). Niamh loved it. Sarah then made Niamh's dollies dance and Niamh had to use signs to say 'Stop' and 'Go again'. Niamh really enjoyed being in control of what was happening. She even got her dollies to ask for more bubbles using signs. [Mr Tumble uses Makaton]

Emilie who hasn't be able to come into the hospital recently as she also has had a virus (possibly the same one) is very keen on the Makaton signs. She is even trying to make up some new ones.

The consultant came at the end of the day. He is going to speak with the anaesthetist tomorrow regarding the scan on Monday. He was hoping she would have the scan under general anaesthetic but is not sure the anaesthetist will be keen because of her recent chest infection. Sedation may now be a preferred option.

Cycle 3 - Day 24

Niamh is improving every day. She has been very happy and playful today, even got the cleaners to dance with her at lunchtime. She is smiling at everyone and is enjoying watching what everyone else is doing. We are still in the isolated bay (shared with 3 other little boys) but have been told that Niamh no longer needs to be isolated. Hopefully we will be able to take Niamh out of the bay tomorrow.

Niamh's oxygen is still an issue. She is improving but still needs oxygen now and again, especially when asleep. If it wasn't for the oxygen issue we would be able to take her home.

Her potassium and phosphate levels which had been a problem are now back to normal.

Her weight today was 14.3kg, so on the upward trend at last.

The consultant has told us that we will wait till Monday after the scan to start cycle 4 (if all is looking good). Monday likely to be a very long day.
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Cycle 3 - Day 23

Cheeky smiley Niamh is back at last!

Niamh has had a lovely day today. She had a great night sleep, only woke up around 9am. She had a good morning of playing, physio and more playing.

She did some great standing during the physio session, a lot less shaky than yesterday. She was also able to pull herself up from the sitting position to the standing position by herself grabbing on to the bed. She was very pleased with herself.

She had a good afternoon nap and woke up happy ready for more playing.

We have increased her feeds and she seems to be coping very well. No vomiting (so far).

Her oxygen is still a bit of an issue. Whilst playing, it is fine, it remains between 93 and 99, but as soon as she lies down and falls asleep then it drops under 90. The doctors don't seem too worried about it, they seem confident that it is due to the virus. She is still coughing and sneezing. If only she was old enough to blow her nose, it would help.

The consultant is hoping that we will be able to go home in the next few days. It would be nice to have some time at home before the scan next Monday (6 days).

Attached a little video of Niamh trying to scare us with her cow mask.