Sarah and I met Abi’s Oncologist, Dr Musgrove, on Monday 19th January 2015. We discussed her recent scans, the recommendations of the second opinions I had received, and my concerns regarding the efficacy and toxicity of various chemotherapy agents. Taking all that into account, he had organised an MRI of her spine, an eye test, and also an endocrine test to check her hormone levels. Regarding treatment, Dr Musgrove recommended the chemotherapy drug Vinblastine. He thought that would have very few side effects while helping to control her tumours. He then arranged another meeting for the 26th January, to give us some time to think things through.

Over the next few days, while Sarah took Abi to all the tests and scans that Dr. Musgrave had booked, I spent the time recounting Abi’s story on the online Low-Grade Glioma Group I belonged to, asking for any experiences of Vinblastine.

My daughter has been on Vinblastine for more than a year now. She hasn’t had many side effects. She has pain in her leg often, sometimes bellyache. She can go to school and have a normal life.

Charlotte finished a year of vinblastine last February. It kept all her tumours stable. In addition to stability, the enhancement in the tumours diminished to the point where they don’t enhance at all now and have remained stable over the year that she has been in treatment. Vinblastine for us was the closest thing to not being in chemo at all. At first, they start the kids on a high dose of it and after a few treatments, their blood counts drop pretty low so then they lower the dose. After they lowered Charlotte’s dose, we never had any problems with low counts. She never got nauseous and did not need any anti-nausea drugs during treatment. Her hair did not fall out or even thin out. She went to school every day. Even the day she got chemo’.

My son Jake just finished two years on Vinblastine. It provided a wonderful quality of life and shrunk the tumour as well. He had neuropathy (leg pain) from it, but a dose of gabapentin to get through the night was all he needed. He attends kindergarten every day and can keep up with all of the kiddos his age.

My daughter was on Vinblastine for six months. It did keep her tumour stable, but her eyesight deteriorated so we switched to Irinotecan and Avastin and then to just Avastin. Out of all the previous protocols (including vincristine with carboplatin and cyclophosphamide, cisplatin and vincristine), it was by far the easiest in terms of toxicity. The only negative was that it seemed to make her tired.

Following this (mostly) positive feedback, I decided that I would agree to Vinblastine, despite my previous concerns about chemotherapy. Besides, I wasn’t sure I had any choice now, especially given the proximity of the second tumour to Abi’s optical nerve and the danger that it could affect her eyesight if we didn’t act.

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