Uncertainty
Over the past 6 months, we have been so fortunate to enjoy a more normal family life. Zac has been getting stronger, is more able to enjoy activities and we have seen, on the whole, a return of his pre-treatment personality. He had a clear scan in April and his consultant was so happy to see how well he has been doing, that she didn’t need to see him until his next scan, scheduled 3 months later. We breathed a sigh of relief and tentatively started to believe. Plans were made for Zac starting school in September. We made the decision to move house, relocating to the Northumberland countryside.
The next scan was scheduled for August 3rd. Zac went down for his General Anaesthetic so calmly and smoothly, a dab hand at this by now. During the hour we waited, we walked to get coffee and food (nobody eats the morning of the GA when Zac is nil by mouth) and we are reminded of the time we lived here for two months. So many memories that get supressed bubble to the surface once back in the hospital environment. Once Zac had recovered from the GA and eaten, we were discharged back home, we would return the following day for the results.
The day of the scan/results never gets easier. You are tense, irritable, agitated (well, I am). We waited to see Zac’s consultant. It was an unusually long wait. Anxiety levels crept higher. On entering the room, we knew something was wrong. A serious face had replaced the usual jovial greeting. “There is an irregularity on the scan. I don’t know what it is, but I am concerned. I need to get a second opinion from the radiologist by day’s end.” I felt my stomach sink to the floor and glanced at Seb who was on the verge of tears. We kept it together, thanked her and waited for the call that afternoon. When it came, it offered more uncertainty, the radiologist couldn’t confirm if it was the tumour recurring or something else, but they and our consultant were both concerned. We would have to wait until Tuesday when the multidisciplinary team would meet to discuss.
We tried to keep ourselves busy over the weekend and do as many fun activities with the boys as we could. But in all honesty, we were preparing for, and expecting, the worst of news. Tuesday finally arrived and we received the call. The neuroradiologist is fairly certain the lesion is not ETMR recurrence, it may be post Proton damage in the area of the tumour. The team had agreed that, presently, there was no need for any urgent surgery and advised another MRI scan in 6 weeks time. We felt absolutely elated to receive this news after the plunging despair following Friday’s results, expecting to be told the tumour was back today.
It has certainly brought us back down to reality with a bump, reminding us of the ongoing challenges ahead for Zac. But also reminding us to be thankful. Thankful that we have been able to enjoy a relatively normal life these past six months, thankful for enjoying so many moments with our boys and seeing their relationship develop. A reminder that the road ahead may still be bumpy, but to always look back and see how far Zac has come.
