Day 5 - Chemo

Niamh had a relatively good night (although lots of weeing due to all the fluids).

She has been very happy to see her big sister who was enjoying making her laugh.

A few rounds in the car again. At 2pm she was given the first dose of rescue drug. They will give her a dose every 6 hours till they are happy that the toxic level in her blood has gone down to a safe level.

Around 5pm, her nasogastric tube came out by accident. It was due to be replaced next week (every 4 weeks) so not so bad. Interestingly Niamh was more distressed with the plaster on her cheek to hold it in place than by the positioning of the tube.

Over the last few weeks, she has developed a phobia of anything that sticks to her skin.

Niamh is being fed through a nasogastric tube since her first surgery. The speech and language team are trying to assess her swallowing but she doesn't seem interested in trying. Not easy to convince a stubborn 2 year old. So far she has successfully coped with chocolate buttons! Her bottom lip and tongue have become weaker since the second surgery. A concern to us but the consultants seem to say that it will come back with time.

Niamh never tries to pull the tube out and never touches her central line which is fantastic. When the nurses come and do their obs, she gives them her arm for the blood pressure, her finger for the oxygen level and even her ear for her temperature. She is so sweet. It does make life much easier but it is so sad at the same time.

Day 4 - Continued

Niamh had a great morning and afternoon, she looked much better than yesterday. Keen to do her physio this morning and enjoyed going around the corridors of the ward in her little car.

Her chemo started at 2pm, a very high dose of methotrexate, a very very yellow liquid. She had it over 4 hours.

Niamh fell asleep around 3.30pm. By the time she woke up an hour later, she looked miserable. She vomited a little. I was then quite alarmed by her yellow pees but was reassured by the nurses it is quite normal. Niamh was unsettled for about an hour after waking up. The nurse decided it may be as good a time to change the dressing on her central line. I think she was right as it wasn't that bad after all. By 5.30pm Niamh was smiling again, playing peekaboo with the nurses.

It is now 7pm, she is watching upsy daisy and iggle piggle and holding my hand. She looks tired but her skin is still a nice color. She is smiling. She seems to get a bit upset when she passes urine: horrible chemicals. We' re changing nappies every 30 to 45 mins!

Slight error in this morning' s entry. The bone marrow biopsy shows no cancer cells but they do not yet have the results of the bone marrow aspiration (liquid if I understand it right).

Over the next few days Niamh will have folinic acid to rescue her body from today's drug. They will check her blood everyday to see how much toxicity is still in the blood and as soon as it is the right amount we should be able to go home. This cycle also has two more doses of vincristine next tuesday and the following tuesday.

Hopefully a good night ahead...

Day 4 Chemotherapy

Niamh is very happy this morning, she even grabbed the nurse's nose and got the nurse to stop and play with her for a good 10 mins.

Bone marrow has no cancer cells!!! Phew.

Day 3 Chemotherapy

Niamh had a relatively decent night despite being woken up at 10pm, 2am and 6am for nappy changes and obs.

Today, Niamh had exactly the same treatment as yesterday. She is def looking more tired, red eyes now. Despite being sick on about 6 occasions throughout the day, Niamh has been smiling at everyone. Not sure how she does it.

In the morning, she wanted to play with everything we could find (puzzles, sticker books, matching pairs), had to take a trip to the play room to find extra toys. Around 11am she had physio whilst attached to all our lines. She was v cheeky and giggling for most of it.

By the time the afternoon came, things got a little harder. Less energy, feeling more sick. Yet once she vomited she felt better and would sit up again.

This evening we have been around the corridors with the various attachments. I can't wait to hold her without dragging all the equipment attached to her.

Tomorrow likely to be a tough day. Dressing on her central line needs to be changed. I have been warned the experience may be pretty traumatic. She will also get a high dose methotrexate from which she will need 'rescue' over the following three days. Sounds pretty scary.

Day 2 Chemotherapy

Niamh had a lovely sleep and woke up in a happy mood. Kids are so forgiving.
Mr Kay, the neurosurgeon who operated on her twice (our hero so far) came to see her. He said she looked fantastic. Dr Peet the oncologist came soon after and also commented on how well she is doing. I take it as good news although we've only had one day worth so far.

At 10.30 chemo started, first etoposide for two hours followed by cyclophosphamide. She did well all morning even did some painting with lovely Irish Paula, the Occupational Therapist. Around 2pm she started looking a little pale as if she was about to be sick. She wasn't. She fell asleep for an hour instead. Since she has been smiling, but doesn't have much energy. Sits up a little but prefers lying down and looking at what people are doing (nosy side hasn't changed).

When the physio came around 3ish, I told her that Niamh was too tired for physio today. Niamh did not agree, she sat up, gave her a big smile as if to say: I want to do it. We went to the playroom, had a sit down to play but N quickly realised she was too tired for physio. Walked to the fishes instead.

Only 6pm now so let's wait and see how evening goes. Same drugs tomorrow. This is lasting forever...

Day 1 Chemotherapy

What a day! First the neurosurgeons said to wait for their go ahead before starting the chemo, despite having told us yesterday it would be fine to start this morning.

Then an hour later they came back with a smile and said they were happy for her to start the chemo. What was that about!!

Niamh has been on fluids since the morning and will be for the next week at least to protect her kidneys and bladder.

Chemo started at 2.15pm. Vincristine was first injected through her central line (syringe) and then cisplatin over 6 hours. N was fine during the day, wouldn't sleep, very alert. We went around the corridors in a little car while attached to about 5 lines. It is a skill (haven't quite mastered it yet).

She fell asleep peacefully around 7.30pm. But woke up an hour later vomiting. It lasted about an hour. Luckily she was due anti sickness medicine. Once that kicked in she was happy and smily again. In fact took for ever to go back to sleep. Peaceful night.

First Night on Ward 15 Oncology

We've moved! We now have a bed on Ward 15 - Haematology & Oncology. It takes a bit of time to get used to a new ward, but nurses are very nice and there are loads more toys in the play room. There are even some small sit-on cars and a tractor. Niamh had a go on the green tractor and I pushed her round the corridors. She loved it. We both slept well when she eventually settled down (back to a 10pm hospital sleep time). We're ready to start chemotherapy tomorrow, hopefully.

Missing Posts - We will catch up

There are some missing posts here, we'll catch up when we can.......

Niamh has been on Ward 10 for 4 weeks and has had a really nice week at home. She has had two very successful operations (on 21st October, day after the MRI, for 12 hours, and on 3rd November for 7 hours).

Most of her brain tumour has been surgically removed, a little remains in places too risky to operate on.

First Fit

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

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

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

Her talking is as good a pre surgery.

Day 4 and 5 After Surgery

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

Intensive Care for 40 Hours

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

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

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

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

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

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

21st Oct 2010 - First Surgery (12 hours)

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

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

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

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

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

First Night on Ward 10

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

Lucky and Unlucky with the Scan

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

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

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

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

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

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

Wait for the Scan

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

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

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

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

The Shock Begins

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

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

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

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

That night was horrendous.

Appointment at the Fracture Clinic

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

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

Turn for the Worse

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

We knew then that something was seriously wrong.

Screaming Episodes

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

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

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

Some Progress

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