Please tell your workmates about 'www.meganappeal.com'

There are 13 page headers,

please scroll through them.

Megan is significantly visually impaired, she is blind in her right eye and only has around 20% vision in her left eye. We have had various adaptations made to our home to aid Megan's safety and she uses a white stick in un-familiar areas to enable her to enjoy as much as possible the appropriate level of independance relevant to her age. As a result of the significant loss of sight experienced as a result of the brain surgery Megan underwent in April 05 her hearing has significantly increased, this in itself can cause major problems for Megan in her daily life as she cannot tellerate loud noise.

Megan had a partial stroke as a result of the biopsy taken when she was first diagnosed in March 01, as a result she has a slight weakness down her left leg, special shoes are made for her to help with this.

Megan receives treatment every 10 weeks for hormonal problems caused by the tumour and some brain damage caused by the radiotherapy.

Megan is experiencing some learning difficulties believed to be caused by the brain damage experienced as a result of radiotherapy, she has a Statement of Special Educational Needs and an individual education plan tailored to her learning ability.

Megan suffered a major convulsion in Oct 05, which she is prone to have as a result of having a brain tumour and moreso having had brain surgery.

Megan from time to time has to have blood transfusions as a result of the toll chemotherapy has taken on her.

The chemotherpay that Megan received when she was first diagnosed has damaged her kidneys and as a result we have to supplement magnesium daily.

Constipation is a side effect of the chemotherpay so Megan has to take medicine to control this.

Megan takes Asprin daily to thin the blood following visual loss episodes in late 2007.

Otherwise, Megan is a very well child!!

Megan is at last not on active treatment (as of July 08). She had been on Vinblastine chemotherpay delivered weekly at Newcastle General Hospital. The course which started in July 05 was to be a 52 week course. Due to the success of this drug keeping the tumour at a constant size the treatment was extended and actually lasted 3 years and in early July we had to make one of the hardest decisions to date, to stop treatment!. Consultants around the world advised stopping the treatment out of concern at the un-known possible side effects that could arise from such extensive use of Vinblastine. No child in the world previously had been on Vinblastine for more than 28 months and so Megan has been pioneering by extending the useful life of the drug, but, concerns were at what potential cost. Linked to this is that should there be growth in the future we will be able to re-start Vinblastine. We also simply felt that for Megan to have gone to hospital every week for 3 years and to have undergone the treatment and then it's subsequent side effects, she simply desreved the rite to not be on treatment and to hopefully be as normal a child as she possibly can be, taking into account the points raised above.

Obviously every child/patient is different but we have been told that Megan is in a fairly unique position. Radiotherapy is normally the curative treatment for the type of tumour that Megan has. The fact that Megan's tumour has with-stood Radiotherapy puts her in a grave situation. It is only estimated that Vinblastine Chemotherapy and the other 2 types that we still have the option to use all only have around a 10% chance of cure. As a result we know that logically either the next scan or one of the scans after that will show that the cancer has broken through and that we will have to switch on the 2nd type then the last type, however this last type 'Cisplatin' runs risks of causing hearing loss if not total deafness and so bearing in mind Megan's vision we are reluctant to use this.

We have been told that Megan's only real chance of a cure is to undergo "massive, radical brain surgery" on a scale far greater than that she had in April 05. The surgery runs very high risks of mortality, disability and would almost certainly remove the remaining sight Megan has.

The decision as to whether to subject Megan to that surgery is only a one that ourselves as Megan's parents can make at a time when we are faced with making that deciasion, that might be as soon as the next scan in 3 months time but hopefully we will have far longer than that if ever at all!!.

Obviously the above is the future as we can best see it based on Megan's current medical situation and treatments that are available to us at the moment. The purpose of Megan's Appeal we hope may come into play at this stage and we are constantly looking and researching options that may give Megan a lifeline, no matter where that is in the world and no matter at what cost!.

We are very aware as Megan's parents that every day we have with Megan must not be wasted and we are working hard to try to find the right balance of having a normal family life, work, school etc.. not just for Megan but for all of us, and really focusing on doing as many things as possible with her individually and together with her brother and sister, to make the most of the time we might have. Megan has recently started horseriding lessons for example which she loves and eagerly counts the days until her next lesson.

Megan during an EEG test in Jan 06>