Update – 1 Year Clean MRI
Good evening to you all.
Chiane had a MRI scan last week and today we went to Great Ormond street hospital for the results.
Chiane finished her primary treatment last year February, and today we were told that her scan is clean. Chiane passed the first year after treatment, which is a golden mile stone to reach, for children that are diagnosed with StPNET. We were so relieved to hear the good news today!!
Chiane had various tests done at GOSH the last few weeks. The main focus was psychosocial testing to establish her mental capacity for schooling, memory, learning etc.
What will happen next?
Over the next 3 months (March, April and May) Chiane will receive all her immunisation again. It’s a long list of immunisations but its important for her to receive it. We were told she might get sick during the next 3 months, because the immunisations will follow each other fast and hard, with very little gaps between injections.
Then we will be off for Gene treatment (June-Aug). With the help of GOSH, we found a specialist that was the leading gene specialist in the USA for Lynch syndrome. We have been told that he recently was offered a position in Germany, and he moved from the USA to Germany. Our understanding is that Chiane’s consultant provided him with all of Chiane’s medical files, scans and medical history to bring him up to date. He agreed for us to contact him directly. Initial introduction will take place in the near future, and our goal is to go to Germany (June-Aug). First priority is immunisation, so that Chiane is able to travel, to receive her gene treatment. More information regarding the above will follow during the next few months.
September, Chiane will start main stream schooling with the support of external specialist.
I will update you all again on the 7th of March when I have more information regarding the psychosocial evaluation, recommendations and results.
Physically, Chiane is in a very good shape. All test carried out today showed that she is physically in top form.
For now, schooling continues as normal at home until September. Our goal is to get her back in to school by September when the new academic year starts.
Chiane is still on 36 homoeopath medicines and 3 alternative treatments. Today was a good day. The 1 year clear MRI was a huge relief for us.
Thank you all for your continuous support and prayers.