Supatra continues on steriods although we are near the end of her cycle and almost finished weaning her off. Her tiredness is coming back and can not walk more than a few hundred meters before wanting to sit down. Her left eye also continues to bother her as she can no longer properly close her eyelid which results in a dry eye. We continue to actively try and restrict her calorie intake but she continues to increase in weight. We are starting to think that as we wean her off the steriods that some of the symptoms might be psychological rather than tumour related and that she is now dependent on it.
On 3 and 4th May 11 we went to London with two other families and their kids and had a lovely time visiting the London Aquerium, having dinner at the Rain Forest Restaurant and cruising the Thames River. The kids really enjoyed themselves and Supatra was great especially with her brother Jason whom she helped to look after.
27-30 May 2011
Well Supatra has managed to stay off steriods for a full week but as of today we decided to put her back on as her instability became really bad and included weakness in her limbs. There was also a little shakyness to her limbs and what is very noticable is her going up the stairs at home. When on steriods she can climb the stairs with little aid of using her hands for support but off the steriods for more than a few days and she will need to lean forward and almost crawl up the stairs on all fours. On 28 May 11, Supatra also complained of pain in her left eye, headaches and fuzzy vision. On 30 May 11, with our regular doctors visit we asked if Supatra could get an eye patch to help alleviate her discomfort and they gave her some eye bandages that you can wear and then remove as needed. They come in different colors and patterns and Supatra really liked this.
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