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.
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