Chiane’s progress

Good afternoon to you all.

Chiane is doing very well in general. She had a MRI scan this afternoon.

We have a meeting scheduled for next week Friday (31/08/12) with GOSH to discuss the MRI results. It is going to be a very long week waiting…till next week Friday. Waiting for this MRI results will be different than waiting for previous MRI results. SPNET usually resurface between 6-12 months after treatment. Today was the 6 month scan. We will be on the edge of our seats for the next week waiting…

We have also been informed that Chiane’s gene results came back. We scheduled a meeting for next week and Tuesday (28/08/12) at UCL Hospital to discuss the Gene results and to discuss what the next step will be.

Chiane is currently being evaluated to decide when she will be ready to go back to school. It won’t be in the next 6 months though.

Her feet has not improved, in fact it got worse. She can barely walk flat on her feet. This was caused by the vincristine chemotherapy. One of its side effects, is that it shortens the achilles tendons at the back of her leg connecting the calf muscles to the heel bone. Vincristine shorten this tendon pulling the feet downwards so that you can only walk on your toes. This doesn’t seem significant but it is. It causes her to be off balance, she can barely run and exercise. Chiane will therefore get casts on both her legs for a minimum period of 8 weeks. Pending on the progress they make pushing her feet back/flat, it might take longer. She is schedule for the end of September to receive casts on both her legs.

We requested that Chiane’s PEG (Percutaneous endoscopic gastrostomy) be removed because it is starting to hurt her. We are not feeding her through the tube anymore. All her homeopath medicines are taking orally. We haven’t used the PEG tube for 2 months and it is time for it to come out. Pending her MRI results on Friday, she will go in for an operation on Friday (31/08/12) in the afternoon to remove her PEG. If the cancer is back, then the PEG will not be removed.

We will do another update on Tuesday after we discussed Chiane’s genes.

Thank you for your continues support and prayers.

Chris

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Posted on August 24, 2012, in News from Chris. Bookmark the permalink. Comments Off on Chiane’s progress.

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