Update 15/11/12

Good afternoon to you all.

Chiane is doing as good as can be expected. Her casts have been removed a few weeks ago and it seems to have done the job. She is off her tippy toes. She struggled to walk for a few weeks but her walking has improved a lot.

She has gained weight and she is eating very well at the moment. We are still continuing with a vigorous course of homeopath medications. The centre of  focus is still very much her genes. The latest gene report have shown some improvement and changes in protein levels in some genes that were previous faulty – are showing normal protein levels. There is still a long way to go.

Schooling seems to be a challenging uphill battle. Chiane is working extremely hard. She is dedicated and motivated but progress is extremely slow. We have noticed that Chiane, unlike other children learning something new, and pick up where you left off the previous day… Chiane can not do that. Everything she learned the previous day is forgotten the next day, and we have to start all over again. We have bought additional material to help with learning, building her concentration, building her short and long term memory, and we are starting to make progress, but it is slow.

As things stand at this point and time, Chiane won’t be able to go back to a ‘normal school’. We are waiting for an evaluation to be carried out on Chiane, and the general feeling is that Chiane will need to go to a ‘special needs school’ for the time being until she starting to make some improvement before we will even consider placing her back in to a normal school system. This really breaks our hearts but we are not putting pressure on Chiane. She is working very hard, and we can not expect more of her.

We have realised that she exceptionally good at music, and for some reason she can continue with music where she left off the previous day. Maths, reading and writing (hand control movements) is a challenge at the moment. We are continuing with the home schooling because she needs 1 on 1 education.

Every day after school, Chiane is stretching her legs and her muscles. The chemo really tightened her muscles, and she is making very good progress at the moment. Once her muscles are loose enough, she wants to go back to gymnastics. She is very determent to go back to gymnastics as soon as her Hickman lines are removed, which is currently still connected to her heart and used on a weekly basis to carry out blood testing.

Chiane’s next MRI date is the 26th of November, and we are meeting with her consultant on the 6th of December to discuss the results. Based on the MRI results, it will be decided if Chiane’s Hickman lines will be removed or not. If the MRI is clean, her Hickman lines will come out, if the cancer is back, then we will keep them in.

Chiane is now strong enough to travel. Her weekly blood results have been stable for the last 7 weeks. Based on her blood counts. platelets, white blood cells, neutrophils and red blood cells, its all looking extremely good. Pending her MRI results, we will decide where to go for final treatment. After speaking to a few patients that have recently been to the Burzynski clinic, and speaking to people who have been treated there this year, we brought it back on to the table. Chiane will start a maintenance program in Texas and we will be going to Colorado as well. Colorado and Denver specifically, is far ahead with homeopath treatment and research. After the 6th of December we will finalise our plans, and be off to the states for as long as it takes to fix her genes.

What ever funding we don’t have in place by then, we will make a loan to cover the rest of the costs.

Estians latest gene report shows a replica of Chiane’s gene report, the only difference is, his genes is in a much worse and extreme state than Chiane. We feel we are running against a clock here and it is worrying us. They both are on the same nutrition organic diet, and homeopath course, and we will push very hard for Estian to get some treatment in the states as well. I won’t expect a no for an answer.

In general, Chiane is doing very well. There has been 2 incidences the last few months where Chiane would be 100% fine, and all of a sudden without warning, out of the blue she would loose complete muscle and body movement in the right side of her body. Her right leg, right arm, right eye lid will be completely paralysed and she would have no feeling what so ever for up to 12 hours before her muscle and body movement comes back. Chiane is still on lots of medication as well, and although she looks well, there is still some major issues to be resolved because she is heavily relying on medication to keep the above from happening. Cut all medications out and Chiane will be hospitalised within hours.

We will send another update after the 6th if December once we have Chiane’s results back.

Thank you for your constant support, fund raising and prayers.

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Posted on November 15, 2012, in News from Chris. Bookmark the permalink. Leave a comment.

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