Yet More Second Opinions

The days following the news of Abi’s second tumour were difficult. My angel was in trouble. I felt physically sick. My blood pressure must have been very high, and one night I awoke many times feeling as though I was about to have a heart attack. I’ve since learnt that it must have been anxiety. I had never experienced anything like that before; I was a nervous wreck.

My mum’s partner was the first to phone. “I’m sorry to hear the news. So’s your mother. Will you speak to her?” he asked. Before I could decide whether I should, she called. “We want to support you. Let’s put all of our problems behind us”, she said. “I don’t want to talk about that now”, I replied, sharply. I could tell she was shocked. I think she expected that, with the news of Abi’s illness, I would want to settle our differences. But I felt my focus had to be Abi, not my problematic relationship with my parents. In fact, a few days later I decided that I would not change my stance. I only wanted supportive people in my life and they had never been that.

Then Abi’s psychologist at the local hospital called. She wanted to arrange a meeting with all of Abi’s carers to discuss her treatment. She wanted to invite Sarah and me too. Unfortunately, she caught me in the eye of the storm, and while talking to her on the phone, I broke down. I hated showing my vulnerability so openly. I eventually managed to recover my poise, but I told her that I wasn’t sure I would be able to cope with a meeting. However, I asked her to keep me informed.

The next morning I went to an Olympic Weightlifting class at my gym. I felt that I needed to change the scenery and stop wallowing in self-pity. The class was a real struggle. I was on the verge of tears. But I kept with it, and I’m certain that it was a turning point because it helped me realise that I couldn’t just mope around the house. I decided that I needed to act. So when I got home, I immediately got in touch with Abi’s surgical team to ask for her latest medical notes and scans. I then began contacting experts and asking for second opinions on Abi’s condition. I had done this before, so I knew the process, and who to contact. Doing something useful helped my mood enormously. I took back control.

The first to respond was a surgeon from a hospital in Baltimore: “I have reviewed the scans and see that there are indeed two tumours, both quite small. I agree that surgery cannot remove them. I would recommend chemotherapy to see if it will control the disease. I would repeat the spine imaging to ensure no other lesions are present, investigate the tumour for molecular analysis to determine which chemotherapy agents will work best. She will also need a formal eye exam as one tumour is close to the optic nerves.” I spent another anxious night worrying whether my daughter would go blind following that reply.

The next to report back was a paediatric neuro-oncology fellow at a Californian Cancer Institute. “We reviewed Abi’s case in our neuro-oncology conference yesterday and I wanted to get in touch with you regarding our group’s recommendations. We feel that the primary tumour has become more infiltrative and that there is a new lesion at the base of the 3rd ventricle. Our group believes that Abi should begin treatment with chemotherapy. Our first-line regimen in patients with Abi’s tumour is a two-drug regimen of vincristine and carboplatin. We recommend that her next MRI is done with a high-resolution scan to define the area of tumour better and that she should also have her spine scanned.”

Finally, I received a reply from a Director of Neurological Surgery at a hospital in Florida. “I looked at Abi’s most recent MRI. I see a small nodular recurrence in the right cerebellum and a second lesion in the hypothalamic region. In the light of that second lesion, surgery by any means, be it open resection, stereotactic laser ablation, or radiosurgery would not be an appropriate treatment for Abi. Surgery can target only the nodules seen on the MRI. If there are tumour cells beyond that, they could be missed. Radiation therapy by contrast would treat the nodule with a margin around the area of enhancement. So that could be an option. However, I would recommend chemotherapy before that. I would suggest an MRI of the spine with and without contrast and a discussion with your oncologist and neurosurgeon regarding the treatment options.”

All three responses seemed to concur. Meanwhile, we had been given an appointment to meet Abi’s Oncologist, Dr Musgrove, on the 19th January 2015. I had emailed him three years prior, when seeking a second opinion following Abi’s original recommendation for chemotherapy, so I already had his address. I used it to say hello before the meeting and forwarded all three responses to him so we could discuss their recommendations when we met. I also sent him my concerns about different chemotherapy treatments.

I spent the next few days back at the gym, working out my frustrations by punching the stuffing out of the bags there.