Radiotherapy Day 11 (22 days to go)

The weekend has been a pleasant one, despite the miserable weather. Emilie was upset last night, she wants to be in France because it doesn't rain there! hmmmmm. Yet the girls enjoyed jumping in muddy puddles yesterday, Niamh loved it. Niamh is obsessed with 'Peppa Pig' at the moment. Emilie says that she is Peppa Pig and Niamh is George but a girl George. So Niamh was enjoying being George and splashing in the puddles. The bigger the puddle the better.

Niamh's favorite activity at the moment is dancing. I am ashamed to say that the girls like to dance on Rihanna 'xxx in the air' song, totally inappropriate lyrics but it does get Niamh moving and singing.

Niamh has been okay on the whole this weekend. She was sick a couple of times and needed her ng tube repassed. In the last 10 days we have had about 5 new Ng tubes. She is only sick once every two or three days but unfortunately the tube comes out every time.

Radiotherapy went well this morning. Niamh was very proud to show off her sister to everyone. Emilie was pleased to at last see where Niamh has been going every morning and meet the team that she has been hearing about. Emilie was great, she held and stroke Niamh's hand when Niamh went to sleep. By the time it was time to wake Niamh up, Emilie helped and got Niamh to smile and laugh. She wants to accompany us again tomorrow.

Niamh has put on weight over the last week, from 15.4kg to 15.6kg, same scale. It is a little surprising as she has been feeding less and has been sick a few times. Her blood counts today were:

Haemoglobin: 11.1 which is good.
White Cells: 1.9. Better than last week.
Platelets: 71. Down from last week but not too much of a drop this time.
Neutrophils: 1.2. Low, but not neutropenic.

Radiotherapy Days 8,9 and 10 (23 left to go)

Two weeks completed and so far so good. Niamh is doing well, possibly a little more tired but she still won't sleep during the day and still wakes up earlyish. The treatments on Wednesday, Thursday and Friday went smoothly. On Friday she took a long time to wake up. The anaesthetist said it was quite normal for the children to take longer on Fridays after 5 consecutive days of anaesthetic.

She has now settled quite nicely in her morning routine: hospital, teeth, vaseline on lips, head clean, full on moisturiser. No more screams, just a couple of attempts at pushing me away. Her mouth must be getting quite dry after treatment as she asked for more water in her mouth yesterday when brushing teeth. She took it from a spoon. Hopefully by the end of her treatment she will be drinking from a cup.

She had a very good physio session on Thursday morning. The physio feels that she is not far from walking unaided now. She still drags her right foot a little but it is improving. The main problem is that she lacks confidence in her ability to walk and stand unaided.

Her blood counts yesterday were still low:

Haemoglobin: 11.6 which is good.
White Cells: 1.4. Low.
Platelets: 94. Dropped again.
Neutrophils: 0.8. Very low, considered neutropenic, ie. very weak immune system.

The White Cells and Neutrophils have plateaued a bit, but her platelets are still dropping which is a concern. They will do another blood test on Tuesday morning. If her platelet counts are under 50 she will most likely need a platelet transfusion.

All in all, the last two weeks have gone relatively well. She looks well and happy. Next week Niamh will only have four treatments as Monday is a Bank Holiday.

Radiotherapy Days 6 & 7 (26 left to go)

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!

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.......

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 :)!!!!

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.

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.

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!

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.

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.

http://www.teenagecancertrust.org/what-we-do/specialist-services/units/birmingham-childrens-hospital/

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.

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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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).

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.

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.

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?