Well the days since T-Cell recovery have just shot by!
We had a theatre trip on Tuesday (not that kind of theatre) for a lumbar puncture and bone marrow aspiration to check for signs of leukaemia relapse, chimerism (if any of the donor cells are still there) and overall health of the bone marrow.
So here’s a summary:
After steroids, radiotherapy and chemotherapy, Kip had a stem cell (or bone marrow) transplant at the end of January. After three weeks with no sign of it working he was given a growth hormone to stimulate it, which had the desired effect and neutrophils (cells that fight infection) were found.
Surprisingly after testing it was found that the donor stem cells weren’t growing but that his own system had come back. Nobody expected this because it just doesn’t happen; no nurse of doctor at the hospital had ever seen this before.
Nonetheless, healthy cells kept growing, and there was no sign of any leukaemia anywhere (in remission). That has continued since then and, despite some setbacks and side effects, his immune system has recovered to the point he has the all-important T-Cells to fight off viruses. And what a time to be able to fight off a virus…
One side effect of the Covid pandemic has been a massive drop in other diseases like flu, chicken pox, measles and so on. That suits us quite well.
Kip still has his central line (wigglies) and port connected to his bloodstream for the way administration of medicines but they aren’t needed now. And, as they remain an infection risk, they are due to be taken out on Wednesday next week. The wigglies have been in for six months, and the port for a little over three years!
Kip’s overall health has taken some hefty knocks and he’s quite underweight after a bout of gastroenteritis, but right now he’s running round the garden with Millie being a happy and apparently healthy little boy.
We’ve seen no sign of the leukaemia coming back and, while there’s a real risk of relapse (more so than if the transplant had worked) every week that passes with no sign of cancer cells is a step away from that terrifying eventuality.
The team at Birmingham Children’s Hospital are happy enough with his progress that clinic visits and blood tests will now be just once a month. In February, we can look at getting vaccinations done and, dare I say it, have a normal life!
Sarah starts back at work on Tuesday, while I’m taking a career break to homeschool the kids (and be a kept man!), with some support from my folks for the first few weeks.
I don’t think we’ll ever think that the danger has passed or stop being vigilant, but certainly this is moving us into a different chapter. We can start looking ahead to a year without cancer, two years, five years, maybe a lifetime..?
Many miles travelled, many more to go. What a journey!