Good evening to you all.
This picture says it all!
Chiane’s MRI revealed no changes, meaning she is cancer free. The “cloudiness” revealed during the last MRI have grown a lot…it is all over her brain but those changes are post treatment changes. The cloudiness that spread shows “density changes” in the brain, meaning many things but cancer. It will take more or less 2 years for the brain to heal itself due to the damage caused by the 2 brain operations, chemo and radiotherapy. The density changes in her brain is more likely the brain itself healing; finding new path ways to function due to all the harsh treatment she received and due to her original brain cancer … There was more or less 30 specialist that looked at Chiane’s MRI and all agreed unanimously its not cancer but post treatment changes in her brain – WHAT A RELIEF!
These changes in her brain is to blame for the current motor and muscle loss at times. Chiane has some problem in her right hand. Her thumb and middle finger work independently, but her index, middle and ring finger are all working together as one finger – which makes writing very difficult – this is also to blame for the post treatment changes showing on her MRI. We started with piano lessons to help Chiane practice these fingers to work independently… and for her brain to find new path ways to operate and help these fingers work independently. We discussed a lot of things with oncology, and had meetings with neurology as well. So far it all looks good…
We were worried about Chiane’s eye sight, and ophthalmology tested her eyes. It’s all good and Chiane’s eyes are 100% fine.
We had a meeting with education to discuss what home schooling we are doing and identified what support she needs. We met up with a psychiatrist to discuss various concerns and we finally get support we need to push Chiane mentally forward.
We have also discussed future hormone treatment, growth hormone treatment, thyroid treatment etc…
We discussed gene treatment and its so good to finally have GOSH supporting us and we are working together to address the genes.
Chiane will be submitted to hospital during the next few weeks to remove her Hickman lines that is still connected to her heart. These can now be removed. As things currently stand, we will be off to the states early next year. We first have to get a few appointments out of the way that was put in place today at GOSH, before we can fly.
Most StPnet children relapse in the first year after treatment. This was the 9 month scan… The next MRI scan will be the one year scan after treatment. If the cancer is not back by then, Chiane’s chances of surviving her cancer will increase dramatically – provided we sort out her genes.
Chiane was so happy to learn that she is still cancer free and that her Hickman lines will be removed before Christmas.
We are still doing intensive homeopath treatment, a strict organic nutrition and diet, hyperbaric oxygen therapy, and a few other things we don’t want to make public as yet. Chiane gained 5 kg and is now starting to show a healthy weight. She has no more bones sticking out and she has a lot more energy and strength.
Thank you for all your support and prayers. We can finally breath again. Chiane is fit enough to travel, and the gene therapy in the states is finally in sight!
Good evening to you all.
Chiane had her MRI today.
We will need to wait 1 week for the MRI results. We have another meeting at GOSH next week and Monday to discuss the MRI.
We had a meeting today regarding her genes and to be honest, we are no wiser after the meeting, than before the meeting. We have been told that they disagree with the gene report that we have provided and further testing is required on the hMLH1 gene which can take anything from 8 weeks to 10 weeks. If they find any loss of expression in the hMLH1 gene, they need to carry out further tests on the PMS2 gene, which will take a year.
Chiane’s cancer can be back by then, or worse, dead. The NHS is either really under staffed or she has now become 100% research and not priority. We were shocked sitting in the meeting expecting to discuss different options of treatment, only to be told, that they require to test 1 more gene, which will take at least 2 months, and maybe a second gene, pending results of the first gene, which will take a year.
Frustration is an under statement here.
We agreed for them to do further tests as chiane is not required to be there. They have her genes and can continue to do the research. We are not going to wait for the NHS. It’s an aggressive cancer that can resurface in 6 months… There is no time to waste. We will get next week’s MRI results out of the way and then decide which way forward.
Andia and I have already decided to get another 3rd party to re-test her genes….again. This time from an approved laboratories in the states. If the gene report is the same from the company we use in the states, as per out first report… Some hard questions will be asked by us to the health system in the UK. To wait possibly a year is insane…