We are now in the second week of Niamh's radiotherapy treatment. She was happy to see the team at the Cancer Centre yesterday and to show off her new shoes, look everyone at my brand new pink shoes! This week's characters on her sticker book are Charlie and Lola. She is pleased.
The treatments yesterday and today have gone well. Every morning she has a little play with the train track, then I take her to the radiation room where the team is waiting. There are usually a minimum of 5 of them. I sit her down on her bed, take her top off and put her little blanket on. She smiles at them all. Then she lies down, the anaesthetist puts the mask on her face and she holds my hands. She looks around a little and then calmly goes to sleep. She is amazingly brave and cooperative. Whilst it does make it easier on me and the team, it is in a way sad that she is so used to it all.
Today we were allowed to go into the control room to see what they do once they have got her into position. It all look pretty complicated. The first 21 days of her treatment they radiate all her head and spine. The last 12 days they will give a boost to the area where the original tumour was.
We were a bit surprised with Niamh's blood results today:
Haemoglobin: 11.6 which is good.
White Cells: 1.8. Low.
Platelets: 139. Ok but down from 200 last week.
Neutrophils: 0.9. Very low, considered neutropenic, ie. very weak immune system.
We were told her haemoglobin level may be affected by the radiotherapy but her white Cells and neutrophils shouldn't be affected much. The radiotherapist have reassured us that it is normal for counts to fluctuate and not to worry. (hmmm, easier said than done). They will do another blood test on Friday.
On the whole Niamh has been well over the last couple of days, she is impressing us with her standing and walking without splints. Her crawling seems better too. She was doing better with the sickness yesterday but was sick once this afternoon. Hard to tell if it is a bug or not. Emilie was off sick today as she had a temperature last night and has been complaining of a stomach ache today. Happy days!
Tuesday, 24 May 2011
Sunday, 22 May 2011
Normal Life
Saturday was a very nice day, quite normal as far as family days go. We we went shopping at touchwood in Solihull all together and went for lunch at Wagamamas. We ordered for Niamh even though we knew she wouldn't eat. £3.95 was worth it so so she didn't feel left out + it meant I got an extra half portion!
In the shops we bought Niamh some new canvas shoes which she was very happy about. She kept showing us she had new shoes. They'll be good to have now so we can encourage her walking without splints.
In the evening Mike and Caitlin returned from Ireland and we had a nice meal. Niamh and Emilie stayed up a little and were pleased to see them.
Today she's been a bit sicky, once first thing this morning and once at lunch time. We've stepped up her antisickness medicine and switched her to the easy digesting food and will wait and see if it's here to stay.
All in all a lovely weekend though, Niamh is very happy at the moment, except when she's having her head moisturised.......
Friday, 20 May 2011
Radiotherapy Day 4 & 5 (28 days to go)
Yesterday and today's treatments went very smoothly. The treatments go fast now. Niamh is in the radiation room under general anaesthetic for about 20 minutes, they then let her sleep for another 30 minutes before they gently wake her up. She always leaves with a lovely smile and blowing them all kisses. Helen, the specialist nurse, made her a sticker book for the 6 1/2 weeks of treatment with all her favorite characters. This week's page was Peppa Pig. Who knows what will be next week's? It brings a bit of excitement to our morning trip.
She also loves playing with their train track before her treatment when we get there early. It is perfect as she can play it standing up. Good for her legs.
Today we had to go the Children's Hospital after treatment as Niamh needed a blood transfusion. Her HB yesterday was 9.6 and they prefer it to be above 10. As they needed to do the cross match first, it took a while. We got there at 10am and left at 5pm. It was nice to have Granny and Poppa's company for a few hours and then Nanny's who is over for a couple of days. Niamh was lovely all day, full of smiles and cheekiness. All the staff were commenting on how well and happy she looks. She also made some loud noises and shouted 'no' and 'nanny' a few times which surprised them all.
So alltogether not a bad first week. Our main problem right now is an extreme lack of sleep. For some reason which we haven't quite determined yet, Niamh has been waking up at 3am for the last 4 days and won't go back to sleep after. She then has an hour sleep for her treatment and then no sleep till 8pm. Not sure how she does, we are struggling. One possible reason may be the change in her feeding times. Whatever it is hopefully she will go back to normal this weekend :)!!!!
Wednesday, 18 May 2011
Radiotherapy Day 3 (30 to go)
Niamh is doing well so far. Today's treatment went well and she woke up ok, blowing kisses to everyone, anaesthetists and patients. She is enjoying her daily stickers given by the specialist nurse, Helen.
This afternoon she had a physio session. She is still making good progress.
She is making a lot of progress in terms of communication. At times, she won't stop chatting 'in her own way'. She tries to copy sounds but she finds it hard to articulate specific sounds.
She had also recently been trying food, she ate some prawn crackers at the weekend and also had a go at other types of food. It seems that food doesn't taste as she remembers. She doesn't seem to like chocolate anymore. Quite hard to believe! Yesterday and today she hasn't been willing to try to put food in her mouth. It is likely that her mouth is feeling quite dry from the radiotherapy. If only she could or would try to drink!
The worse part of Niamh's day at the moment is when I apply aqueous cream to her head/back/face. This has to be done twice a day to avoid dryness/burning of the skin. That together with brushing teeth can be quite an ordeal but we get through it eventually.
The people at the Cancer Centre (staff and patients) are all very friendly and kind.
This afternoon she had a physio session. She is still making good progress.
She is making a lot of progress in terms of communication. At times, she won't stop chatting 'in her own way'. She tries to copy sounds but she finds it hard to articulate specific sounds.
She had also recently been trying food, she ate some prawn crackers at the weekend and also had a go at other types of food. It seems that food doesn't taste as she remembers. She doesn't seem to like chocolate anymore. Quite hard to believe! Yesterday and today she hasn't been willing to try to put food in her mouth. It is likely that her mouth is feeling quite dry from the radiotherapy. If only she could or would try to drink!
The worse part of Niamh's day at the moment is when I apply aqueous cream to her head/back/face. This has to be done twice a day to avoid dryness/burning of the skin. That together with brushing teeth can be quite an ordeal but we get through it eventually.
The people at the Cancer Centre (staff and patients) are all very friendly and kind.
Tuesday, 17 May 2011
Radiotherapy Day 2 (31 to go!)
Today went much better. Niamh was fine going to sleep with the Jungle book sound track in the background. They have different music every day, very thoughtful. The adults were listening to Glenn Miller. She was asleep for about 35 minutes. She cried a little when she woke up but soon went back to sleep. She slept for about 20 minutes and then I was called in to help wake her up. She woke up well and happy, no signs of feeling sick.
When we left, she blew a kiss to a lovely older gentleman and his wife who I had been speaking to when she was having her treatment. He was so impressed that he gave her a £5 note. She doesn't know what a £5 note is for but she grabbed it and blew them more kisses. She made them very happy.
We were home by 10am and she seems well so far.
So a much more positive experience.
When we left, she blew a kiss to a lovely older gentleman and his wife who I had been speaking to when she was having her treatment. He was so impressed that he gave her a £5 note. She doesn't know what a £5 note is for but she grabbed it and blew them more kisses. She made them very happy.
We were home by 10am and she seems well so far.
So a much more positive experience.
Monday, 16 May 2011
Radiotherapy Day 1 (32 to go!)
Niamh had her first radiotherapy treatment this morning. We arrived at the Cancer Centre around 8am and she was asleep by 8.10am! Very kind and efficient team. She went to sleep very peacefully in the radiation room. I thought she may be a little scared of the big machines but she didn't seem to notice them too much. She was too busy smiling at the anaesthetists.
Today it lasted about 50 minutes as they had to check her position very carefully and do more images. She has 6 fractions of radiation each day, 2 high doses and 2 small doses in the brain and 2 high doses on the spine, the radiation time altogether must come to about 60 to 80 seconds (guessing, I tried to counts the seconds each time the radiation light came on). We haven't really been told exactly how her treatment has been planned yet. Hopefully later in the week.
The wake up was a bit traumatic, Niamh cried a lot and she was sick. She eventually calmed down and went back to sleep in the pushchair for about 20 minutes, but she was sick again when she woke up. We left around 10am and made our way to the Children's Hospital via Alex' work so we could drop him off. Niamh was sick a couple more times in the car. I thought I would be fine from Alex' work to the Children's as it is only 5 minutes away but no she was sick again. Still feeling traumatised by the experience. Concentrating on driving on the Queensway while attending a sick child in the back and pushing her NG tube back in was a little bit too much (and there was me thinking I was good at multi tasking)!
Once we got to the Oncology Clinic she settled, they gave her some IV ondensantron (antisickness) and she was fine. We found out that the blood cultures from Saturday came back negative. It would seem that Thursday evening's blood cultures had been contaminated after the blood had been taken. As a precaution the Oncologist Consultant said it would be best for her to complete the course of the antibiotics. Luckily the community nurses will be doing it from tomorrow so we won't need to do the two hospital visits.
By the time we got home, 1pm, Niamh felt better but very tired and probably starving. She had a pleasant afternoon, lots of 'Peppa Pig', some walking and climbing stairs with Emilie, the assistant.
Hopefully a better day tomorrow. We will now give her antisickness a couple of hours before the General Anaesthetic and hope that it works!
Today it lasted about 50 minutes as they had to check her position very carefully and do more images. She has 6 fractions of radiation each day, 2 high doses and 2 small doses in the brain and 2 high doses on the spine, the radiation time altogether must come to about 60 to 80 seconds (guessing, I tried to counts the seconds each time the radiation light came on). We haven't really been told exactly how her treatment has been planned yet. Hopefully later in the week.
The wake up was a bit traumatic, Niamh cried a lot and she was sick. She eventually calmed down and went back to sleep in the pushchair for about 20 minutes, but she was sick again when she woke up. We left around 10am and made our way to the Children's Hospital via Alex' work so we could drop him off. Niamh was sick a couple more times in the car. I thought I would be fine from Alex' work to the Children's as it is only 5 minutes away but no she was sick again. Still feeling traumatised by the experience. Concentrating on driving on the Queensway while attending a sick child in the back and pushing her NG tube back in was a little bit too much (and there was me thinking I was good at multi tasking)!
Once we got to the Oncology Clinic she settled, they gave her some IV ondensantron (antisickness) and she was fine. We found out that the blood cultures from Saturday came back negative. It would seem that Thursday evening's blood cultures had been contaminated after the blood had been taken. As a precaution the Oncologist Consultant said it would be best for her to complete the course of the antibiotics. Luckily the community nurses will be doing it from tomorrow so we won't need to do the two hospital visits.
By the time we got home, 1pm, Niamh felt better but very tired and probably starving. She had a pleasant afternoon, lots of 'Peppa Pig', some walking and climbing stairs with Emilie, the assistant.
Hopefully a better day tomorrow. We will now give her antisickness a couple of hours before the General Anaesthetic and hope that it works!
Sunday, 15 May 2011
Home
Niamh was discharged from Ward 15 at lunchtime today. She will need to go to the oncology clinic tomorrow after radiotherapy for her daily dose of antibiotics. We are hoping to get the blood culture results tomorrow. If her lines are colonised, they will continue the daily dose of antibiotics till further notice. As she is well they felt they could do this as an outpatient. Phew!
Niamh had a good sleep last night. As Alex said in his blog yesterday, the Teenager Unit is very comfortable, especially the parents' bed.
This morning she enjoyed spending time with Hifsa who sadly is still on Ward 15. Hifsa (6), Niamh and Daisy (3) played 'What's the time Mr Wolf' and hide and seek around the Ward. It brought a smile on many people's faces.
Tomorrow, first day of radiotherapy under GA. We need to be at the Radiotherapy Centre for 8am. Niamh needs to be starved from 2am, then on water till 6am. We are going to have some fun nights for the next 6 1/2 weeks.
Niamh had a good sleep last night. As Alex said in his blog yesterday, the Teenager Unit is very comfortable, especially the parents' bed.
This morning she enjoyed spending time with Hifsa who sadly is still on Ward 15. Hifsa (6), Niamh and Daisy (3) played 'What's the time Mr Wolf' and hide and seek around the Ward. It brought a smile on many people's faces.
Tomorrow, first day of radiotherapy under GA. We need to be at the Radiotherapy Centre for 8am. Niamh needs to be starved from 2am, then on water till 6am. We are going to have some fun nights for the next 6 1/2 weeks.
Saturday, 14 May 2011
Afternoon Home Leave
Last night we were moved to a room in the Teenage Cancer Trust unit at Birmingham Children's Hospital as this is where there was a free bed. This unit is very nice to stay in. Niamh has here own room which has all sorts of gadgets for controling the lighting. You can ask the lights to cycle through sorts of colours.
Niamh had some trouble getting to sleep but she did sleep well. Daddy not so well, but not too badly.
Today they let us know that one of the blood cultures from Niamh's central line showed an infection, I think with Enterococcus. This could either be that one of her lumen is colonised with the bacteria or because the sample was contaminated after it was taken.
They have taken some more cultures from Niamh's central line and started her on a new antibiotic Teicoplanin.
We have home leave this afternoon but Niamh has to come back in tonight for the antibiotics. 3 doses in first 24 hours. After that is is once a day at lunch time.
We should know more tomorrow or Monday.
Friday, 13 May 2011
In hospital
After three weeks at home, we had to take Niamh to A and E yesterday around 6pm. She started a temperature in the afternoon. She seemed well in herself but very very hot. The oncology doctor examined her and said her ears look sore, her tonsils are swollen and her throat is red. It is possible that it is a viral infection. Her immune system is fine at the moment, WCC are 4.3 and her neutrophils 3.5. Yet because of her recent history they need to treat her for all types of infection, ie. the usual two very strong antibiotics. She will be on these antibiotics for 48hrs min, until the blood culture results come back.
We have a room in the high dependency unit on ward 15 (only bed available). It is a treat, lovely room with ensuite bathroom, big tv, big windows, very nice. Niamh has slept very well, she hasn't had a temperature over night. She is on paracetamol every 8 hours to control possible ear/throat pain although she hasn't complained about either.
Hoping to go home on Saturday evening or Sunday. It feels strange being back on Ward 15, the oncology ward. We can't help but wish we could be here finishing her chemotherapy treatment as was originally planned.
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Sunday, 8 May 2011
Enjoyable few days
Life has been quite normal over the 
last few days. Today was a special day, we had our first proper family day out in a very long time. We took the girls and Auntie Aislinn (who is visiting us for the week) to the West Midlands Safari Park near Kidderminster. It was a great day. Niamh was a little scared of some of the animals, especially the camel who tried to come into the car and give Alex a kiss. She wasn't scared of the lions, tigers and wolves as luckily they stayed away from the car. We then had a walk in the adventure centre and the girls got to see a sea lion show. Niamh had her first go ever in a carousel. She never wanted to try before. This time, she was very keen to go in, especially in the princesses' carriage next to Emilie (or princesses' cabbage as Emilie likes to call it).
last few days. Today was a special day, we had our first proper family day out in a very long time. We took the girls and Auntie Aislinn (who is visiting us for the week) to the West Midlands Safari Park near Kidderminster. It was a great day. Niamh was a little scared of some of the animals, especially the camel who tried to come into the car and give Alex a kiss. She wasn't scared of the lions, tigers and wolves as luckily they stayed away from the car. We then had a walk in the adventure centre and the girls got to see a sea lion show. Niamh had her first go ever in a carousel. She never wanted to try before. This time, she was very keen to go in, especially in the princesses' carriage next to Emilie (or princesses' cabbage as Emilie likes to call it).Niamh is continuing making great progress with her communication. She seems to be chatting and singing a lot. We understand a few words but unfortunately not many. 'maman', 'no', 'ello' and 'night' come out clearly. She is still making progress with her walking and standing but slowly. She really enjoys playing 'what's the time Mr Wolf', especially when she needs to run away from the wolf. She laughs so much that her little legs seem to go in every direction.
The consultant neurosurgeon had a look at Niamh's scar on Friday morning. He is very pleased with it. Hopefully she can start the radiotherapy as planned on Monday 16th May.
Wednesday, 4 May 2011
No to Protons, Yes to Xrays
We heard from the Doctor at the Oklahoma proton center late this afternoon and he reiterated everything that we have been told by Niamh's consultant oncologists here over the last couple of weeks.
Proton therapy would have some advantages in reducing the long term side effects of treatment for Niamh. In Niamh's case however, there are less advantages due to the area which needs to be treated. In particular, treatment to the large original tumour site in the middle of the supratentorial part of her brain.
If we lived in Oklahoma, Niamh would most likely be treated with Proton therapy.
In our situation though, the risks involved with seeking treatment in another continent and the risk of delay outweigh the advantages from treatment with protons.
It's taken us the last two weeks to accept this but now there is no doubt in our minds.
Thank you to all our family and friends who offered support and made us believe absolutely that if we needed to raise the money for treatment in the USA we would.
We also received a lot of support to get where we are from Niamh's doctors here in the UK, the Paul Scherrer Institute Switzerland, Procure Oklahoma City and Ros Barnes (Alex Barnes's mum)
We are now fully committed to Niamh's path with radiotherapy which is a very effective treatment against cancer.
Niamh is loving being at home and is making good progress with her communication and walking.
The neurosurgeon will check Niamh's wound on Friday and then Niamh is due to start her Radiotherapy on Monday 16th May at the QE Birmingham. Please pray that her radiotherapy treatment is effective and that Niamh will win her battle without too many side effects.
Update on Protons
We've been more than a little quiet recently, in part because of the tough news about Niamh's cancer progressing and in part because of our uncertainty of her treatment.
To catch up, we've got ourselves into a situation now where Niamh is due to start radiotherapy here in Birmingham on 16th May. On the other hand we have the possibility in principle to treat Niamh with Proton therapy in Oklahoma starting on the same date.
Today we have to decide if self funded travel to the US for proton therapy is really the best thing for Niamh. We have to balance the risks of travel and self funded treatment in the USA against the benefits in reducing side effects of treatment. We have two main phone calls left to decide this, one with a Dr in Oklahoma and the other with the finance team at the proton therapy centre in Oklahoma.
If after weighing everything up we believe that treatment with Protons in the US is the way to go we will need to raise ~£150,000 in a very short time.
A key consideration is that Niamh's consultant oncologist is very specific that a delay in her treatment would reduce her chance of being cured.
We'll update the blog later when we know more.
To catch up, we've got ourselves into a situation now where Niamh is due to start radiotherapy here in Birmingham on 16th May. On the other hand we have the possibility in principle to treat Niamh with Proton therapy in Oklahoma starting on the same date.
Today we have to decide if self funded travel to the US for proton therapy is really the best thing for Niamh. We have to balance the risks of travel and self funded treatment in the USA against the benefits in reducing side effects of treatment. We have two main phone calls left to decide this, one with a Dr in Oklahoma and the other with the finance team at the proton therapy centre in Oklahoma.
If after weighing everything up we believe that treatment with Protons in the US is the way to go we will need to raise ~£150,000 in a very short time.
A key consideration is that Niamh's consultant oncologist is very specific that a delay in her treatment would reduce her chance of being cured.
We'll update the blog later when we know more.
Sunday, 1 May 2011
Waiting for news
Life is a little strange at the moment. It feels like we are getting some normality back into our life (we're home together as a family, seeing friends, etc)and yet we know that we are at a very difficult stage in the treatment of our beautiful daughter.
On Wednesday we took Niamh to Ward 10 to have some of the stitches removed. She was so happy when she got there saying hello to all the staff and blowing them all kisses. Unfortunately little did she know what was coming. Screams!!! Yet by the time it was all done, she smiled at the surgeon. She is very forgiving. Before we could go home, Niamh needed blood test done to check her phosphate level. It was frustrating when we found out that her lines were blocked and they would need to put some special product in her lines to unblock them and that takes a minimum of two hours. It did work though, lines were unblocked and her phosphate level was fine.
On Thursday we took Niamh to the Queen Elizabeth Hospital Cancer Centre for the radiotherapy preparation. She was under General Anaesthetic for a couple of hours whilst they made two masks, one for her face and one for the back of her head. They also did some very small permanent dots on her back after a CT scan. The masks and the dots are to help with the positioning when she will be having radiotherapy. It all needs to be very precise. Alex and I found the experience very difficult and quite strange. Almost all the patients were adults aged 60+ and then there was Niamh aged 2 and 9 months. Helen, the co-ordinating nurse at the centre was very kind and helpful to us and Niamh.
The last couple of days have been lovely, it has been great seeing friends. The girls really enjoyed the Princes and Princesses party they went to on Friday afternoon. They loved getting dressed up as princesses specially after spending the morning watching the wedding. It was nice to have both girls at the party (first time in 7 months). Niamh enjoyed seeing all her little friends. It was a fun day!
Niamh was a little tired yesterday (day after the party) but she still enjoyed her visitors. In fact both girls were very sad when they left last night. Emilie was still upset this morning...
In terms of what happens next, we are still very confused. Alex has had contact with a Professor at the Paul Sherrer Institute in Switzerland. The Professor has been suggesting that Proton therapy could be the best treatment for Niamh and this could be done without delay in Oklahoma. We have been waiting for the UK specialists to make contact with him to confirm this. We are very confused as it has now been 5 days and the UK specialists haven't made contact with him. We just wish someone could tell us one way or another. Is proton therapy really the best treatment for Niamh and in this case should we start raising funds? or is proton therapy not suitable?
Tuesday, 26 April 2011
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.
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.
Friday, 22 April 2011
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.
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.
Wednesday, 20 April 2011
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.
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.
Tuesday, 19 April 2011
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.
Monday, 18 April 2011
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.
Sunday, 17 April 2011
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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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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Saturday, 16 April 2011
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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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.
Sent using BlackBerry® from Orange
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