Old to group, but never formally introduced

[Guest guest]

I lurk here on behalf of my daughter. She was diagnosed in March of 2007

with an optic pathway glioma, which is a juvenile pilocytic astrocytoma

(grade 1). Siobhan has lost the peripheral vision on the left hand side in

both eyes due to nerve damage. Her endocrine system seems OK, but for

low-ish cortisol levels and her height being in the bottom 15% for her age

(used to be 5%). The tumour is a disc-like mass surrounding the optic nerve.

Rising above this is a multi-loculated cystic mass that causes most of her

trouble. Six or seven operations to drain the cyst later she is experiencing

reasonably stable disease.

At first she experienced the standard chemo protocol of vincristine and

carboplatinum. This was terminated six months later after no response

(continued growth in both cyst and tumour) and an allergic reaction to the

carboplatinum. Six weeks later vinblastine was administered. This continued

over a period of a year. At this time the oncologist pronounced that we

could stop treatment. The tumour and cyst had slowed in their growth. We

have caused Siobhan to endure an alphabet soup of therapies and supplements.

At the moment we practice a reduced Budwig Protocol, some juicing, the veges

and whole grains, the flax seed oil and cottage cheese (quark), the ground

flax, the sunshine, exercise and relaxation. Supplements are reduced to some

colloidal silver, an 'oxygen solution' we have hanging around and vitamin

B12. We see a applied kinesiologist chiropractor and a neurotraining

kinesiologist on alternate weeks.

Whilst the last year we have been pleased with results (no operations, no

cystic growth) the last MRI indicated that the cyst may be showing increased

activity. Any suggestions will be appreciated.