A FAMILY'S JOURNEY DEALING WITH A CHILD WITH A BRAIN TUMOUR

THEIR EXPERIENCES, THEIR FRUSTRATIONS AND THEIR PROBLEMS IN GETTING TREATMENT.

By Faye McCluckie of the UK. E-mail: Faye@roubiliac.demon.co.uk

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In 1992, Alicia at one year old was diagnosed with a brain tumour.

She seemed to be a very healthy baby. She was born, full term, weighing 8lbs 2oz and had never had to see a doctor until we felt that she had developed a slight limp. Our General Practitioner could not see any problem but we paid privately to see an orthopaedic specialist. He also felt there was no problem. We were not completely convinced but decided to watch her for a while.

The limp remained but suddenly we noticed that she was also turning her head to one side to look at pictures in books. We visited the local optician who confirmed that there was a problem. A day later we saw an opthalmic consultant who immediately referred her to the neurological unit at the local children's hospital. The next day Alicia had a brain (CT) scan and it showed a very deep seated tumour by the right thalamus which was the size of a golf ball.

The neurologist referred us to a neurosurgeon who did a biopsy the next day, and said he would be prepared to operate 3 days later. The surgery had to be done urgently because the tumour was causing increased pressure on the brain and this was demonstrated by a rapid deterioration of all function on her left side.

In the meantime, we also saw an oncologist who said he doubted the tumour was operable and it certainly wasn't appropriate to use any other therapies.

We had very little time to take stock of our situation. Firstly, we were in a state of shock that we were facing such a devastating problem and secondly everything happened so quickly that we could only get a second opinion from someone at the same hospital. We knew nothing of the hospital, the surgeon or brain tumours in general and we really followed where we were led, grateful at the time that we were led anywhere at all.

The first surgery Alicia had after this initial diagnosis lasted about four hours. The surgeon de-bulked the tumour, i.e. removed the middle of it, but it was impossible to remove a large part of it because of the limits of the technology and the expertise available. The surgeon could not tell where tumour ended and normal brain began. Any attempt to go closer to the brain/tumour boundary could have resulted in catastrophic brain damage. This surgery bought us all some time. Initially, we accepted that the surgery was the best we could expect. We looked further into other treatment options but the outcomes were negative here in the UK.

After 18 months we were at crisis point again. I asked about treatment in the U.S., and our surgeon agreed to write to Patrick Kelly on our behalf, who was then Professor of Neurosurgery at the Mayo Clinic, and had pioneered a procedure called "computer-assisted volumetric stereotaxy" which meant that some tumours inoperable by conventional surgery could be removed using this technique. Professor Kelly was in the process of moving to the New York University Medical Center but said he thought he would be able to help. In brief, we had no other options but to go to New York and to this we needed to find £36,000 - the costs at that time and pretty quickly.

We contacted our health authority to see if they would fund the treatment, there were no published protocols at that time to follow, simultaneously we launched a public appeal, contacted our M.P., who was extremely supportive and whilst funds were coming in friends lent us the money to go for surgery. On arriving in New York, our health authority agreed to pay for the treatment.

In New York, Dr Kelly operated on the tumour, which was, by this time, the size of a small orange. It was removed successfully and Alicia had no new deficits from the surgery. We returned home a week after the surgery and Alicia recovered quickly.

Alicia's MRI's were clear of tumour for three years. Unfortunately, in September l997 tumour showed in the mid-brain area of the brain stem. Apparently this was residual of the original tumour although it hadn't been obvious on the films until this time. We could not get the health authority funding for the second NYU surgery because our UK surgeon did not agree that the procedure needed the specialist technology and expertise required previously. As parents, we took a different view. It was obvious how vastly superior the surgery had been when performed by Dr Kelly. The post operative MRI's were clear demonstration of this and it would have been intolerable for us to subject our daughter to any procedure which would have compromised her chances based on the knowledge we had acquired over the last few years. Fortunately we were in a position to fund this surgery ourselves.

In November l997 Alicia had surgery, performed by Dr Kelly at NYU. She spent less than 24 hours in the ICU and we came home after 6 days. She negotiated JFK Airport on foot. After the Christmas break she returned to full time school and joined the choir and country dancing clubs. She does very well in school and is a keen student. She goes horse riding and can swim nearly 50 metres now. She is a very lively little girl who loves to "party."

The deficits she acquired which were caused by pressure from the tumour when she was 1 have remained. She has a left sided weakness and left hemianopia (i.e., visual field loss) but she does not seem hampered unduly by these problems.

Her MRI's are clear to date and show no sign of tumour recurrence. We all live in the shadow of the brain tumour. The first eighteen months after diagnosis as our daughter just progressed closer towards death will never be forgotten and we hope that perhaps for some people we can make a difference in telling our story by offering education and hope from our personal experience. Had we been able to read of a story like ours back in l992 our lives would have been made much easier. We hope we can do that for somebody else.