Carys Parkinson, diagnosed with neuroblastoma in Feb 2010 at 12 months old at Queen Mary Hospital Hong Kong. Moved to Melbourne to seek treatment at the Royal Children's Hospital. Confirmed to have stage 3 neuroblastoma, favourable histology, (non- N-MYC). At initial diagnosis, the tumour was non-resectable. 4 cycles of chemotherapy shrunk the tumour to 1/3 of its original size. Surgery to de-bulk the tumour was successful with 90% removed. Now on regular monitoring of remaining tumour.
Monday, December 12, 2011
Holding my breath
I know this sounds like a weird title for a post, but I’ve been feeling this way lately – holding my breath, not daring to get too excited. You see, last time we scanned and urine tested in September, we had some very positive, encouraging results. The urine test measures the levels of catecholamine’s in Carys’s wee. The tumour secretes this hormone, so the test is used primarily as an indicator of the presence of neuroblastoma. The first time Carys was tested for this back in HK, her levels were “grossly elevated.” I can’t remember the exact number of the level, but this was the test result that made us decide to come back to Melbourne. Up until then, all her tests had been imaging, so it was the presence of this hormone in such high levels that made the beast inside Carys so very real for me. Since the surgery, the levels had been “higher than normal.” Then in September, the levels fell within normal levels! Could this mean the tumour was regressing? Quite possibly, said Lisa our oncologist. The tumour is still the same size in the scans, hence the reason for our cautious optimism. If we continue to see lower catecholamine levels, hopefully, the tumour itself will start shrinking. Our next scan and urine test is scheduled for Dec 23rd, and I keep reminding myself to breathe……..
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