The good news, we made it home!
The bad news, we're back already.
Grayson and I managed four glorious sleeps in our own beds for the first time since November last year. In a strange symmetry we arrived home on Valentines Day, exactly one year to the day since we left for Starship, back when all of this began.
The chance to bring Grayson home to his own space was just too good. Alex left for Police College on Saturday so it was also our last opportunity to be in our own home together as a family for a rather long while, and Grayson had been doing so well! It was not an easy decision for Alex to accept the offer of place at the RNZPC at Porirua to compete the intense 16weeks training to join the police, but it's an act of faith. It's our way of walking the talk that everything will be ok, and that we still have a bright and busy future to plan for. It's an investment for the son we will bring up and role model for. For now, we can only trundle along like there is no alternative.
Unfortunately Grayson had a flair up of Graft vs Host Disease (GVHD) which is simultaneously the worst side effect of his bone marrow transplant, and his best chance of reaching remission. Nothing else has yet worked. It's a thin line between benefitting from a new immune system and suffering from the effects of the donor cells attacking his own "healthy" cells.
Ultimately the goal is for the donor cells to attack the cancer cells, but when the GVHD flairs up too much he ends up with painful rashes over most of his body, especially his hands and feet; some areas become so bad the skin wipes away, leaving areas that are more like deep burns than any normal rash. The GVHD also affects his bowels, basically creating the same effect as the skin rash but throughout his gut. This has lead to weight loss and more pain.
We were admitted on Monday and spent four days in isolation. Unable to leave the room we had to make do with whatever games we could come up with, but Grayson is fantastic company, even when he's having a hard day. Nothing much slows him down. It's almost a blessing he is too young to really understand because he doesn't dwell on the on the pain. He lives in the moment. He's full on, but he's lots of fun.
Now, we are thankfully back at the Ronmac house, our home away from home. The doctors want us nearby to keep a close eye on his progress before we can head back to Whangarei. He has a bit of healing to do, but he's doing well. He's come so far already, improving daily. The medications do throw him around a bit but we take that day by day, just like eveything else.
At first I was so disappointed to be back after finally being home. But, really, it was just a good reminder to be in the moment, find the things I'm grateful for and then just get on with it. We've been doing this long enough now that nothing was a surprise.
We've also been following the Market Day for Grayson being put on by the Parua Bay playcenter; what an emotional lift it's giving us! Just to see the pure altruistic generosity of so many is so inspiring and heart warming. The effort the ladies are going to, the donations being made by our community, the lot! It's got me thinking hard about how we'll ever be able to pay it forward. We sorely want to be there, but at this stage its touch and go if we will be able to make it home for the weekend, even for a short visit.
I'm so looking forward to getting Grayson home again properly and reclaiming our 'old' normal - as much as we can do after a life changing few months away, anyway. Grayson has developed so much since we left; he's not yet two but he's leaps ahead of where he was 4months ago. Truely living moment by moment is a hard habit to learn, but I think I'm getting there slowly, with Grayson's great example.
