Apologies, this update wasn't posted. This will give some context to another update to follow shortly....
Firstly, a huge thank you for your donation. We have been humbled that both total strangers and also friends and family who have been touched by our circumstances and given us your assistance. We have been wanting to put through an update and anticipated that once we were under way we could update you. Things have dragged on a bit longer than we originally anticipated and I guess that some information is better than hearing nothing from us at all.
We had a visit to Star Ship at the end of January 2017 and were planning to be admitted the following week on the 6th of February 2017. After reviewing that visit Hugo's specialist sort further input from other specialists in Boston, the resulting advice was that the earlier test for another type on anemia (Fanconi Anemia) could have returned a false result so they recommended further genetic testing to take place. Fanconi Anemia is genetic and it can be detrimental to Hugo's other organs if it is treated in a similar fashion to Severe Aplastic Anemia. Tests were arranged to be sent to Bristol and results were expected back in 4-6 weeks.
While these tests were going on overseas Hugo was receiving both Blood and Platelet transfusions at the CHOC ward (Children's Haematology and Oncology Centre) in Christchurch hospital, generally having two visits a week and returning to school when able to. Hugo has had a permanent Hickman line put in to enable the nurses to take blood samples and for him to receive his transfusions. Sometimes blood and platelet transfusions fall on the same day, this can take around 6 hours to process. To date he has had around 40 transfusions, to all you blood donors out there you deserve a hearty thank you, these have kept him in good health and more importantly have helped in keeping him alive. The staff that we have encountered while at CHOC have been fantastic in helping treat Hugo.
The test results arrived a couple of weeks ago (some 14 weeks later) and while they have shown that Hugo does not have fanconi anemia they have shown up an unknown gene, at this time it is also unknown what the relevance of this new gene is. There are a lot of emails going between Christchurch, Auckland, Boston, Bristol and Australia while further advice is being sort as to the best way to prepare Hugo for his bone marrow transplant and the possible relevance of this new gene.
Hugo has also been having a lot of back pain and a recent MRI has revealed than he has fractures in his back and juvenile osteoporosis (it seems that when it rains, it pours). We are planning to meet with a skeletal and gland specialist in Auckland in the coming week/s.
On the 18th June 2017 we moved from Christchurch to Auckland expecting to settle Hugo into Star Ship for a week as an outpatient and then get his transplant underway. Hugo received two platelet transfusions and a blood transfusion and has been very good with his visits to Star Ship, the staff have been wonderful in welcoming him (and us). Our progress has been delayed while the specialists come up with a suitable plan and we are again in the position of being in a holding pattern and only being able to plan a week in advance while Hugo will continue as a Star Ship outpatient.
So far the monies raised have been placed aside until we will need to draw on it as both Simone and I are having to take mostly unpaid leave while being with Hugo at Star Ship. Again thank you for your generosity and also a special mention to our friends and friends of Hugo's brothers (Caleb and Harrison) who have donated, thanks to William and George for baking and selling cupcakes, Ohoka school for the money raised and donated during the mufti day, and to those of you who have remained anonymous and given so generously … THANK YOU!.
Richard, Simone, Caleb, Harrison and Hugo
(now, go hug your kids)
