The late blog!

Hi everyone

Well I'm home from the hospital and will try to update you on the news so far. Today we saw the Dr (Dr Michael Sullivan) and the team who are going to oversee the next phase of Saras treatment. She will be moving to the care of the Childrens Haemotology and Oncology Clinic (CHOC) as the tumour she has is a form of childhood cancer. It usually is found in children younger the Sara. It is called a PNET which stands for Primitive Neural Ectodermal Tumour. It is described as primitive because it arises from some of the most primitive cells in the brain ie the cells from which the brain originally formed. Because of the primitive cell nature these tumours can be quite aggressive ie they are designed to grow fast. Only 5% of brain tumours in children are of this type and not normally located where Saras one is - normally they are in the cerebellum. Because of where it is, it is relatively small for this type of tumour as a result of the symptoms appearing reasonably early.

So today a lot happened as the CHOC team moved into action. For us the speed at which it is happening is very reassuring and will feel that we are in the best care we can get. The histology was being confirmed today and this may require sending the sample to Sydney. Dr Sullivan has already emailed his colleague in Los Angeles Childrens Hospital (who previously worked in New York) to seek his collaborative advice on treatment.

This afternoon Sara had an MRI scan to see what remains of the tumour for planning the future treatment. Sara will have a lumbar puncture in about 10 days to check for presence of the cells in her spinal fluid - there is no evidence of any tumours in this area on the MRI but there is a need to check this to develop the treatment plan. At the same time she will also have a portacath inserted to deliver intravenous fluids and chemotherapy etc as part of the ongoing treatment.

While this is an uncommon tumour the team is putting in place a plan to ensure the treatment is right. This plan is going to be presented to us tomorrow afternoon all going well. Like we said yesterday it will take 12 months to complete and Sara will be taking a gap year this year.

We have also met with the CHOC social worker and the art therapist today. The OT came and visited and is pleased with Sara's progress. Tomorrow Sara will have her stitches removed and may be discharged from Ward 28. We will be visiting the CHOC ward and seeing the social worker for a full meeting. Sara continues to endear herself to all those who meet her and felt much more reassured after the sessions today with the various specialists involved in the process. She likes to ask staff and others how they like her "trapdoor" including the orderly who wheeled her down to the scan!

Sara had lunch out today at the Art Gallery with my family but is still very tired and cannot handle to many visitors so we will have to continue to ask that you respect the fact she is not able to see visitors yet. All the family continue to help in every kind of way which is wonderful including Robyn attending the team meeting this morning and another massage from Ruth this evening. My other sister Helen has headed home this afternoon to Nelson for a week or so - she has been a great support during the last few days - she is famous for her haybales - lamingtons - hence Aunty Haybale! Mac (Robyns partner) heads to Auckland tomorrow so he spent a bit of time with Sara this afternoon.

So we are all focusing on the future but taking it day by day - we will try to update the site again tomorrow but if Sara is out of hospital tomorrow night we will probably have other priorities! No time for loading photos tonight - maybe tomorrow - see you.

Rob and everyone here in Chch.