Day +100: We Made It!!!

We did it!
We made it!!!
100 days since transplant!
Woop woop!

This is a major milestone for us. At Day +100, we are now officially "out of quarantine". This means a bit more flexibility and scope for me and Sean as far as where we can go, and although we still have to be vigilant about staying away from sick people, Sean is now to mix with the general public again.

All in all, we were blessed with the smooth road that Sean's been on since we were discharged from the hospital post transplant. We had only ONE return visit to hospital, very late in the piece, and there were no signs of Graft Versus Host Disease since transplant, which was amazing. We are constantly reminded by all the doctors and nurses that most BMT kids bounced in and out of hospital on repeated readmission post transplant, and all suffer from some degree of GVHD. But not our boy. Our little man is a superhero!

For me, Day +100 looks, feels and tastes like freedom. I feel like I've been in a jail cell for the past 100 days, and more, and while some days were better than others, this stretch of time was hard. Really hard.

I don't think I've ever felt so low in my morale. I'm usually a cheery, cheerful person, always trying to look on the bright side of life. Since Sean's diagnosis, I've become cautious and a lot more reserved, more withdrawn. The last 70 or so days since official discharge post transplant have mostly been mind numbingly boring. Every day was Groundhog Day - measuring Sean's input and output, struggling and fighting with him through both, trying to keep amused an ever-growing curious little person transitioning from babyhood into toddlerdom throughout long days by myself while Jonathan was at work. The lack of adult company was debilitating, as was the seemingly lack of "me time". I was envious of Jonathan for having 2 hours to himself while he sat on the bus going to and from work. I was envious of my friends who were able to go out and have manicures and pedicures and eat lunch without having to worry about feeding an ill child boluses of fortified formula. I was envious of the ladies in my Mothers Group for having healthy children and only needing to deal with normal growing pains. I was envious of adults who didn't have children.

I didn't think I'd make it to today. Day +100 seemed so far away when we were discharged from hospital just before Anzac Day. And Day +100 seemed to never want to arrive when we were readmitted on Day +84.

But...
We did it!
We made it!
100 days since transplant!
Woop woop!

I am so grateful to have a wonderful husband who has tried and tried and tried to lift my spirits and keep my head above water. I am so grateful to have wonderful friends from all over the world who have tried to keep me sane. I am so grateful to our extended families for all their prayers and good wishes and words of encouragement. It's been very hard being at home, stuck, with my own family not able to visit and keep me company for one reason or another. But, for now, the light at the end of the tunnel is starting to get brighter.

We are still a long way off from being "signed off" by the doctors. The doctors haven't officially told us we are out of isolation. That will happen next week, hopefully. The next major milestone after this will be the removal of the nasogastric tube, followed by the central line. Hopefully, the time will pass quickly, and our little man will be free of plasticware in the near future. I can't wait till Sean is back to his natural state - no tube in his nose, no tube in his chest. Jonathan is very much looking forward to being able to give Sean a bath without having to worry about all the plastic tubing. No long to go now. We just need to hang in there.

After showing us what an eating machine he can be, Sean continued to show interest in food. He ate lots of everything, from mushed up food to biscuits. We are so pleased to see him eat so well.

Eating was really the only thing we could do. The weather was rather foul today - wet, cold and rainy. Today was definitely an indoors kind of day.

To celebrate the Day +100 milestone, we treated ourselves to home delivered pizzas for dinner. Mmmm... pizza...

Fingers crossed we get all good news at our next weekly visit, and we can be declared FREE.