Good evening everyone.
Apologies that we have been so quiet the last 2 days, but we were extremely busy preparing for Chiane’s treatment.
We read all the information given to us by the hospital and we did our own research. We only have until tomorrow before we have to sign consent forms and the week flies by so quickly when you have to read and rake in so much, familiarise yourself with the different medical terms, what treatment plan is the best? Secondary cancers? Chiane’s illness… Etc etc. We have spoken to specialists from China to Boston and Memphis, from Italy to Germany and we have a lot of questions for Great Ormond street as we have some concerns. We will share our findings once we have spoken to the specialists here. In between all the chaos… we have been at the hospital Tuesday, back on Wednesday for her Stealth MRI; tonight Chiane and I are sleeping here and yes… Tomorrow they will operate yet again on her brain! This is not protocol to have two major brain ops so close together but we have no choice… Now that they have the Diagnosis (sPNET) they reviewed her MRI and the rate it’s growing again at… And they have to go “deeper” if she has any chance of success to make it…. There are very very FEW cases where children with sPNET made it in the end if there were still traces of the cancer in the brain when they started chemo and radio therapy…it’s therefore important that they get as much of it tomorrow as possible… and because they are cutting deeper in to the brain they are worried that she will have defects this time and not a speedy recovery, because they have to cut “past their comfort zone”….
Chiane is sleeping now and it is almost custom now… After they sleep we study her illness, reading loads of case studies re her illness and treatment… It’s going to be a long, hard road but forward we will go!
Thank you all for your support, cards, flowers, words of comfort, emails, phone calls…
Chiane did write a dairy earlier with my help but I have not had the time to send it… I’ll send it now…
Please please please pray for us tomorrow as it will be a far more risky operation than last time….Chiane is scheduled for AM tomorrow.