Good evening to you all.
Apologies for the late update. Everything that we are focused on at this point and time, is time consuming and it’s not “over night quick fixes”.
We are focused on the following:
1. education and support, 2. Chiane’s weight, 3. further treatments, 4. Physiotherapy and 5. Alternative treatments.
Chiane is doing very very well at the moment. We had so many meetings and appointments the last 4 weeks, of which one was with an endocrine specialists. Chiane will now be on hormones for the rest of her life as and when she needs it. Radiotherapy caused a lot of her glands to shut down completely. We went to a park the other day, we were all sweaty but Chiane. She run for 2 hours and were dry as a bone. All future hormone support will be establish through constant routine checks (for years to come).
We also discussed schooling with medical and educational institutions. Chiane will now need special needs help with school. In their eyes, the operations and brain cancer are seen as a permanent brain injury and “should be treated as such”. For now, we are home schooling Chiane and are getting very little outside support. As and when the authorities feel she is ready to go back to school. She will return to a school fit for her requirements and needs, but that is still far down the line. We don’t know yet when that will be, but it is a slow process that will take a long time. Until then, we are home schooling Chiane every day. It was also suggested that we should submit Chiane in to a class year, 1 year younger than her as her “growth rate” will be slower than her friends, and mentally, it will be better for her. As you all can imagine, this is a very intense process. We are swamped with paperwork, forms and meetings.
Currently, there is no visible cancer. We did the high dose thiotepa to push the cancer back as it was too aggressive for us to do anything. Now, there’s no visible cancer, which is good, but now, none of the cancer centres want to take Chiane in to fix her genes, because “there’s no visible cancer”… So good news, but at the same time the worst news! Not even alternative centres want to touch her, because the FDA has a finger in most of them and they’ll get shut down if they “treat someone for cancer who has no visible cancer”… Most centres “treats” cancer and do not “prevent” cancer. Until Chiane relapse, there’s not much that Great Ormond street or us can do…there is 3 very very good Genetic centres. 1) Pittsburg, 2) Vancouver and 3) MD Anderson centre in Houston. None willing to take Chiane until she relapse and the cancer comes back. We are trying our best to get her in to one of the above to give her the treatment she needs but we have had no luck yet. It’s frustrating to say the least, and yet again, mountains of forms and paperwork, hours on the phone and when you get no where it gets us just more motivated.
We are focused on getting Chiane’s weight up. This is not something that happens over night. As she gets more active, she burns more energy. We are slowly making progress gaining 0.5kg on a weekly basis.
Chiane is currently doing yoga to build her muscles, and she sees a physiotherapist every week. Her muscles are still tight and it’s a constant battle for us to get and keep her muscles loose. It was mention that she might need casts soon. Chiane can’t walk flat in her feet and tippy-toe 90% of the time. In itself, this is not a problem but when she start running it is a huge problem. Balance is obviously also becoming a problem if she is all the time on her tippy-toes.
We are still using all her homeopath medicines, are very very focused on the correct diet, nutrition and organic food are still at the top of her nutrition list. Chiane is continuing hyperbaric oxygen therapy.
As you can see, we are running at 110% miles an hour to get Chiane back to a “as normal life as possible”. However, her days are packed with alternative treatments and supportive treatments. Our main focus above anything else, is to get her the correct gene treatment which currently, as a huge challenge because no FDA approved institution is interested to take Chiane.
We will do another update in 2-3 weeks, hopefully with good news regarding gene treatment.
Thank you for the continues support and prayers, fund raising and help at home.