Nice to be home...

1900 15/1/10

Anouk broke all records with her handling of the High Dose (Napalm) cycle of Chemotherapy...her last Chemotherapy treatment for now. We were let out Mon March 8th March, 14 days after her stem cells went back in. They really starred to kick in 10 days after the transfusion & she took off after that. It got pretty grim there for a while but as always Anouk just got on with it. The last week has been great. Eating normal food has been a bit hit & miss but she is getting there. It's a balance between maintaining her weight, Currently around 14.6 kg's & not having to rely on the bags & pump. So we have been feeding her some overnight & nothing during the day in the hope that she will be hungry & will go for normal food. So she gets whatever she wants, whenever she wants it. Sweeties are always popular but it's the other stuff we are trying to push...patience.

This week Anouk will have a Audiology test & a General Anaesthetic (GA) for her face mask "moulding". Hearing wise she is doing fairly well. Her hearing went downhill during High Dose due to the blocking of tubes with the Mucossitis she had. It has improved since that has all finished & we are just hoping that the good right ear isn't getting any worse. However as we have said before we will not be surprised if she will have to have an hearing aid at some point.

We met with Frank the radiologist on Wednesday last week & he laid out all the pros & cons with radiation treatment. As with all the treatments Anouk has had there are risks involved & radiation is no different. However the benefits far out way the risks. The most concerning risk is possible damage to the part of the brain that will effect her ability to learn in the future. Ie she would possible learn slower than others, but the gap would get bigger over time. Frank spelt this out as a possible risk but it was no more than any other...good news. The tumour when 1st scanned was approx. 3.2cm in length & we an oval shape off approx. 1.5cm wide. The Radiation will be focussed on the original size/are eventhough it has shrunk since then. The moulding session is to have a head mask fitted so as to protect her dung radiation & to make sure she is in et exact same position each time & there is proper access to monitor to her her mouth for monitoring the GA.

Radiation will start on either April 12 or 19 & be five days a week for 6 weeks excluding public holidays, in which case those days will be added on at the end. Our slot is 1200 so we will arrive at 1100. The actual treatment is only a few minutes & as soon as she has recovered we will be able to go home. We estimate that this will be around 1300 but we shall see. Luckily granny Sue & PA will be here in a couple of weeks & they know all about the radiation game!

Neave has ben fantastic with Anouk is really enjoying have a normal family life. All we need now is for Anouk to take a leaf out of Neave's book & sleep in her own bed for the night!