Second Opinions Again

No image, no straw to support me - nothing To hear or see. No leaves rustling in the sunlight. Only the mind sliding against events And the antiseptic whiff of destiny. Douglas Dunn, “Second Opinion”

Unfortunately, we got bad scan results. Abi’s tumour had progressed. For some reason, even though it wasn’t what I wanted to hear, it wasn’t much of a shock. I think I had become accustomed to a bumpy ride by then. So my immediate reaction was more of resigned self-pity.

Abi’s surgeon wanted to operate again: “I want to debulk her tumour. I will still be unable to remove it all, due to its proximity to major veins. But I’ll get most of it and it will buy us time and open up other options,” he told me. “By ‘other options’, do you mean chemotherapy?” I asked. “Indeed, Mr Langston,” came the reply. So if we agreed, after surgery, Abi would again be referred for adjuvant therapy to a nearby cancer centre. That would mean we’d be having more discussions about treatment about which I remained uncertain. The surgeon continued: “I have looked at my schedule, and I have two dates to offer for surgery: February 19th and March 13th, 2013.” He stopped to gauge my reaction. I gathered my thoughts for a moment, then I replied: “Do we have to act so fast? Is there any chance we could ‘watch and wait’, at least until her next scan?” The surgeon sat back and considered this, then consulted his diary. “Since Abi is not displaying any symptoms, I suppose we can wait until after another scan in early April. But if that shows more progression, we will have to act really quickly,” he told me. “I’d like to take that option,” I replied.

When I got home, I looked back at Abi’s medical notes and saw that during her second surgery, her surgeon had only removed three-quarters of the tumour. Although I was grateful for everything he had done for her so far, I wondered if he’d been a little too conservative? So I was pleased I’d delayed, because, by doing so, I had given myself time to get second opinions about how much of the tumour could be removed safely. Could we do better than three-quarters? Could we avoid being back in this same place just a year later?

So I spent the next few days searching around the world for top paediatric neurosurgeons. The first to respond to the scans I sent was a doctor from a hospital in Baltimore: “I think we can remove close to 90 to 95% of the tumour safely”. The reply excited me, so I immediately forwarded this response to Sarah. I wanted to share the good news her. Unfortunately, this led to a fraught exchange about the surgeon’s reputation and whether it was right to consider treating Abi elsewhere. This was not the first time I had gotten into a fight about treatment. After her surgery in 2012, I tried to involve all the relatives and find mutually agreed options for Abi’s ongoing therapy. In principle, this seemed like a beautiful way forward. But in reality, we were already split in two through the divorce, so it was an idea that was bound to fail. Indeed, one side of the family felt we should follow the Oncologist’s advice and treat Abi with chemotherapy. The other wanted to give homoeopathy a chance. They wanted a particular homoeopath, but If I was to use homoeopathy at all, I wanted to use one with experience in treating brain tumours. So by trying to do the right thing, all I actually succeeded in doing was alienating myself from the rest of the family. I quickly put a stop to the discussion and resolved that Abi’s treatment would be decided by her mother and me alone. However, even that was proving problematic.

I continued to seek the opinion of paediatric neurosurgeons from around the world. I received the following email from a leading French surgeon: “This tumour seems totally resectable.” This was so bullish it actually shocked me at first because it was so at odds with Abi’s current doctor. It thrilled me too, so, despite Sarah’s previous objections, I immediately passed on the reply to her. As soon as I did, all of our disagreements seemed to fall away. I think, by then, she realised that we might do better for Abi. The news got even better still because it seemed likely that the UK’s NHS would pay for treatment in France, if a UK consultant referred her there. So I began exploring the idea of having Abi treated abroad.

However, even while investigating the French option, I realised that the best place for Abi’s treatment would be in the UK. I just needed to find somewhere. Then it dawned on me that Britain was home to a world-leading children’s hospital, and after a bit of research, I found the details of neurosurgeons operating there. Soon after, I had made contact and begun the process of getting Abi referred for review at the hospital. They only treat the most severe of cases, so I wasn’t absolutely sure they would agree to treat Abi. Perhaps that was a silly doubt, given all that we’d been through. Indeed, the necessary paperwork was quickly completed. We were then left waiting nervously for a date for Abi to have yet another scan.

On March 19th, 2013, Abi finally had a brain and spine scan at her new hospital. They were suspicious of the way her tumour had behaved, and I think they thought that it could be a ganglioglioma, and not a pilocytic astrocytoma after all (because gangliogliomas often form on the spine). That worried me, but I was reassured by their being so thorough.

On Monday, March 25th, Sarah and I went to see the surgeon at Abi’s new hospital to get the results of the scan. “Your daughter’s spine is clear of disease,” the surgeon told us. “Tissue samples have also confirmed that she has a pilocytic astrocytoma,” he said. “Furthermore, I’m quite certain, from the scans, that I can remove the whole tumour,” he continued. That was fantastic news. “Of, course, I won’t know for certain until I actually operate,” he said, finally. “However, I have to tell you that Abi’s tumour has progressed. It looks like it now has both cystic and solid components. We need to act.” His concern and sense of urgency were palpable. Recognising this, I found it tough to keep my emotions in check. It was all a bit overwhelming. However, I just about managed and by the end of the meeting, we had all agreed that Abi’s next operation would take place on Wednesday, April 10th, 2013.

I understood that surgery was both necessary and that it offered Abi her best chance of a healthy future. But I would have given anything to have been given the news that Abi’s tumour was stable and that we could have deferred treatment for a little while longer. So I did not take the news too well. I think that was partly due to the past year of worrying over Abi’s condition, which had exhausted me.