For our foreign guests-in English

This is about Olivia, 17 and her fight against cancer.

In August 2003 2 tumours were discovered in our then 6 year old daughter Olivia’s head - one on each side of her brain on the nerves that control her hearing, balance and facial movement. Because of the position of the tumours, the first diagnosis was Neurofibromatosis type 2. This is a very rare type of disease in which the body seems to build up tumours in the central nervous system area although these are benign.

The biggest tumour was removed completely at the end of August 2003 by a large specialist team of neurosurgeons from Karolinska University Hospital in Stockholm. They also transplanted a nerve from here ankle to the facial nerve in an attempt to restore some of the movement in the right side of her face. The operation took 20 hours.

After the operation – recovering
The big operation was followed by several setbacks. The wound refused to heal, which led to meningitis and several operations. To try to heal the wound quickly, the doctors wanted to try a method that had never previously been used for this purpose. Olivia lay in a pressure chamber for 1 hour and 40 minutes twice a day, about 30 times in total. For a while, she had a shunt inserted, which was used to regulate the flow of liqvor fluid directly into her brain manually.

3 different pathologists in Sweden, England and the US analysed the tumor and when we were finally given the diagnosis, it was even worse than we could have imagined. It was cancer and the type of tumour is called Atypical Teratoid Rhabdoid Tumor (AT/RT).

Olivia was prescribed a tough and very painful course of treatment. The doctor told us that they wanted to give “as much as they could without her dying of it”. For a copy of the details, see protocol.
The treatment was divided into 3 parts, with chemo every week to begin with and then every third week for several days, radiation daily for 7 weeks and then chemo every third week again. During the year that she was treated, Olivia became very sick from time to time and she was hospitalised, not only to fight the cancer but also to get her blood transfusions, food, fluids and other medicines.

She had (hopefully) her last chemo in June 2004.

Disabilities and difficulties
Olivia lost the hearing in her right ear because of the tumour. Her facial nerve is better thanks to the transplant but will not recover fully. Her eye is very dry and needs drops everyday. Her balance is very much better and this summer she could ride a bike again (though she was a little wobbly…). Her motor skills are getting better and better but her right side is still weaker.

The radiation and chemo also led to other complications. She throws up in the mornings sometimes. Her teeth are very weak and she looses parts of them now and then. At school, she has an extra teacher that can help her with things she can’t hear or understand. She has trouble with logical thinking and mathematics. She has hardly grown since she became ill, so she is very short compared with her friends.

Now what?
The most important thing is of course that the cancer stays away. She still has a small tumour on the left side of her brain but the doctors do not think this is cancerous because it hasn’t grown. And as long as it doesn’t, they will not touch it because if they do, she will become deaf in both ears. (We have studied some sign language to try to be prepared if this happens).

The doctors have discovered a cavernom in her brain, (a sort of scar or accumulation of blood vessels), which they think is a result of the radiation, but otherwise the MRI has been clear.
Olivia has an MRI every 3rd month.

The biggest issue right now is her growing, or perhaps I should say NOT growing. The doctors do not want to give her hormones yet, as she still has one tumour left, but they are discussing it further.

Rev: Olivia started hormone treatment during summer 07.

Rev April 2014

In 2013, MRI showed NO TUMORS for the first time. 10 years after the diagnosis.