Hi Everyone, hope you are well, keeping safe at home in your bubble. Firstly.. Thank you so much again for your contribution to this fund, I cant express how grateful I am to know that Neil, Jodi and their Boys have your support. Neil has been given his result from the bone marrow test I mentioned in the last update. There was a little bit of good news and some other news relating to the Covid 19 situation and what this means for Neil. I am just going to copy and paste Neil's facebook post sharing his news as i think he explains it well. I am also going to be appealing for more help.. but this time not financially, especially from you Kiwi Blokes (living in NZ currently) aged between 18 - 40.. So please keep on reading and if you are the Man and want to step up and help, please follow the link at the bottom.
From Neil... "Ok so here’s an update on where I’m at, earlier in the week I got the news that I was in remission which was the goal of this first bout of chemo and one which they considered a long shot to do. But because of covid 19 this came with a very harsh double edged sword that definitely dulled the brightness of the earlier said good news.
So because of the virus they can no longer search world wide for a donor , the donor has to come from New Zealand until things change in the world. This obviously takes me from billions of choices to just the donors of our five million population. Then obviously most people aren’t on that donor list so I don’t even know how many people that is to choose from, but I doubt it’s many. That person then has to be willing to do a two month isolation period on top of what they are already doing in order to donate. From there Christchurch hospital actually needs to be able to be in a position to be able to do the transplant as I will definitely require a stay in ICU with respirators and the stuff needed for coronavirus. Which depending on how many people are sick with coronavirus may not be possible to give me. Even if they can do transplant I will be severely immune compromised sharing a ward with coronavirus patients while I’m in icu , which puts me in extreme danger.
So we move on to they can’t find me a perfect donor. Then they could go with a partial donor and we take that risk. Problem is if it doesn’t work that’s my one and only chance at a transplant done and dusted. Chance of it being successful with a part donor like Gavin or even some one slightly better matched is chances are not very good that it’s successful.
The last option unless I’m forgetting shit, which I probably am but we’ll sort that as it comes to me, is I do four rounds of this chemo go into remission and wait out the coronavirus. Now the issue with this option is I may stay in remission for a year maybe two, we don’t know. It might be enough to clear coronavirus where they can then search the world again for a perfect donor. I also may slip out of remission a week or two after chemo stops. In which case there is no way of getting me back into remission as I can’t do more chemo after this so we then potentially miss out altogether on the bone marrow transplant.
So basically I need a whole lot to work in my favour now. Ideally I think if they found me a perfect donor in nz I risk the coronavirus and do the transplant if that hospital and donor are still willing. But I may not get that choice and the second or third option are then all I’m left with. So yeah that’s kinda it
Now before everyone goes offering to be a donor you can’t be unless you already on the list willing to donate to anyone. The test is very expensive and they won’t check everyone just for me. They tried my brother already as he was best chance for a match and came back an imperfect match.
Cheers Neil
Ps sorry for bad grammar or whatever but I just freestyled my thoughts straight down without think if it makes sense or not.
Also waiting out the virus is not really a realistic option as that won’t be going anywhere fast and I won’t stay in remission for that long."
So folks there you have it, now here is where you guys can help... please sign up to become a bone marrow donor, you may not be a match for Neil but you could be for someone else and you could save their life. The more of us (guys and gals but the NZ Bone Marrow Service really needs guys, especially Maori or Pacific Islanders because you guys are so unique and there are not many of you awesome men in our world, so sign up, help a brother or sister out) that register to be on their donor lists the better right.. more options for Neil to find a match or partial match. 2 months in isolation may seem a long time but if you live for another 30, 40 or 50 years then what is 2 months to help a guy who really needs it. It is easy to register and easy to get the process started.. you can find information on the following sites.. www.bonemarrow.org.nz or on www.nzblood.co.nz or give the NZ Blood service a call to make an appointment to donate blood and when you are there donating tell them you would like to go on the bone marrow register.. call 0800 448 325.
Give Neil or someone like Neil the gift of life.
Thanks for reading all the way to the end here.
Covid 19 is creating havoc in our world and alot of us are worried and scared. We need to stick together (at home of course) and do what we need to do.
I'm going to end this update with another stolen post from Neil, his attitude amazes me. Take care people xxx
"I see a lot of worried and anxious people on my friends list over the coronavirus. So as someone who has dealt with situations and feelings that a lot of you are feeling i will give you a really good piece of advice that may help when your feeling a little hopeless or like things are out of control. It’s only a simple bit of advice but I get through a lot remembering this.
Don’t sweat and worry about the things you can’t control no matter how much worry you put into them. Instead focus on what you can control in a situation and use that to gather strength and resilience.
Some may care others may not but I’m only offering some perspective. Love to you all and you will get through it.
Love Neil
sometimes we just have to hold on for brighter days will follow"
(The photo of Neil and his son Nate was taken prior to lock down.. Neil is no longer allowed visitors)
