Grayson Partridge, still smiling despite his ongoing ordeal.
Grayson Partridge, still smiling despite his ongoing ordeal.
For 20-month-old Grayson Partridge, and his parents Jody and Alex, the best news for some time was that they could return to their home in Whangārei early this month.
The bad news was that after four nights the little boy was back in hospital.
Grayson, who has been fighting anaplastic large cell lymphoma, a rare cancer of the immune system, for the last year had had four "glorious sleeps" in their own beds for the first time since November, Jody said.
"In a strange symmetry we arrived home on Valentine's Day, exactly one year to the day since we left for Starship, back when all this began," she added.
"The chance to bring Grayson home to his own space was just too good. Alex (who grew up outside Kaitaia) 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.
Grayson Partridge got to go home for four days before he was forced to return to hospital.
"It was not an easy decision for Alex to accept the offer of place at the RNZPC at Porirua, to compete the intense 16 weeks' training to join the police, but it's an act of faith. It's our way of walking the talk that everything will be okay, 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 was simultaneously the worst side-effect of his bone marrow transplant and his best chance of reaching remission.
"Nothing else has yet worked," Jody said.
"It's a thin line between benefiting 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 led to weight loss and more pain."
Grayson was re-admitted and spent four days in isolation, but he showed no sign of losing his remarkable resilience.
"Grayson is fantastic company, even when he's having a hard day," Jody added.
"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 Whangārei. 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 everything else.
"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 ... living moment by moment is a hard habit to learn, but I think I'm getting there slowly, with Grayson's great example."
