Note: Luanne died on Friday March 16, 2001

My daughter. Luanne's first symptoms started in March 93, we went to our local G.P. and we were told, not to worry it wasn't anything serious like a brain tumor!, it was merely stress from taking her exams at school. After presenting with progressive symptoms over the course of the following year, Luanne, was finally diagnosed as having a large diffuse Pontine Glioma (probably grade 3/4) in May 1994 (aged 17)

         Luanne received Radiotherapy at a dose of 5000 cGy in 30 fractions over 42 days. This finished on the 29th July 94. During this time she was also taking Dexamethasone at various doses  ranging from 1.5 - 8mg per day and she had 10mg of Maxalon for her sickness. After radiotherapy she deteriorated rapidly and by the end of September was in a wheel chair. Luanne could no longer wash or dress herself, could not write, cut food, when eating she often choked on the food resulting in it coming out her nose. Her speech was slurred and she also got breathless just by trying to talk. Luanne had double vision over all fields of view and she was suffering from panic attacks as well as sickness each morning.         

Doctors here in the UK wanted to start chemotherapy with CCNU but we refused (I did not think it would have much effect on her low grade tumor. On the 26th of September we went to Canada for 4 days  treatment by a Dr. Rudi Falk. The drugs she had were 30 mg C-BPR, with 30mg Hyaluronic acid, and 20 mg Hyaluronic Acid with 30mg/1ml Toradol ( Votarol). They were given by I.V.  on a daily basis for the 4 days. On returning home she continued on this treatment twice a week by I.V.  However the drugs were unlicenced in England so I was taught to use her line and for the following 11 months I gave her the treatments. During these 11 months Luanne improved tremendously and when we stopped the treatment at the beginning of August 95 the only problem Luanne had was her double vision, all other symptoms had disappeared, ( the doctors here thought that this was damage done by the radiotherapy).  PET scans showed a very small amount of residue low grade cells in the bottom corner of the pons.        

Luanne had to take a year out from school, but in April 95 Luanne was well enough to return to school to complete her "A" levels. Her grades were high enough for her to get a place at Imperial College of London studying Biochemistry, and so in October 96 she started university.        

Luanne remained stable until February/ March 97 at which time she gradually grew weaker on her right side.  In April Luanne had another pet scan  which was compared with her previous one that was taken when Luanne was at her best in August 95. The results of the latest scan showed some new tumour growth.        

Of course we tried the Canadian treatment once again, but did not expect it to do very much, and this proved to be the case. During the 4 years since Luanne had been diagnosed I had researched many treatments, but all the ones I was interested in were not suitable for Luanne's type of tumor. Luanne wanted to try the CCNU, because in her words, I had nothing better to offer her, and it was better than doing nothing. I was still very anti her having chemo, but it was her body and her choice.             

In March 1998 Luanne started on the CCNU. Then after her third round she had an MRI scan, the report said there was a very slight shrinkage, but the oncologist said he could not see any difference when he compared her last two scans. He was disappointed with Luanne's scan results but suggested we try another round of the CCNU, as she seemed to tolerate it quite well. Luanne is due to see her oncologist again in September, when she is due to start a fifth round of chemo, however we are going to tell him Luanne does not want any more chemo (of any kind). We had already hinted at this at her last appointment, and he agreed and said he understood why we felt as we did.        

Luanne has remained at university throughout her illness and is due to return in October to start her final year, her grades have continued to be well above average and she has gained the admiration of all those who come in contact with her on a daily basis.