Summer is here, and it’s hard to believe so much time has passed since our last update. Sorry! As time passes it becomes harder and harder to revisit the memories of our experiences and write about them here. In time I’m sure that will get easier.
First, a brief note about pictures on the site: in order to make available many of the pictures lost when the site was hacked earlier this year and had to be recreated, I have added an image gallery. There should a menu at the top with many of the photos that were originally available. This is meant for families who might be interested in what to expect as treatment progresses, good and bad.
As for us, well we’ve had some bumpy weeks and some fantastic weeks, but we are still moving forward with our two happy-go-lucky girls. Zoe is growing, happy, and looks great. Her >98% graft remains intact and we have no reason to believe that will ever change at this point.
We have had some ongoing issues with her skin, many of which have been documented here, but until recently we have had little understanding of the whys of what’s been going on. We’ve thought that it could be HLH rashes, sun sensitivity, MRSA and allergies all at one time or another.
A few weeks back we had another rather nasty virus go through the house starting with Michelle and Maya, then Zoe. When Zoe got sick she was fine at first, but this particular virus carried a skin component (some itchy red spots) that were benign in most of us, but set off a severe skin reaction for Zoe.
We spent 4 days in the hospital when the breakout happened, it looked very similar to Chicken Pox and because Zoe has not been vaccinated against everything yet (she has been unable to), we had to be safe. After a matter of hours she was covered nearly head to toe in red bumps, and the hospital did a full work up on her to figure out what was going on. In the end, what came back to us was a virus (the bumps and fevers), and a type of Eczema or dry skin.
At this point Zoe is fully recovered, but we have moved past thinking that this is all sun sensitivity, and are looking at treating her for Eczema and a few allergies only. Things could certainly be worse, and as usual every little scare sends us back to dark days, but we have been assured that there is no reason to fear anything major at this point, we simply need to take extra care of her skin.
As far as treatment goes, the last remaining medication Zoe is on at this point is Hydrocortisone. We’re working on weaning that even now, but everything else has been discontinued. We appear to be at the end of the ordeal by and large, and now we need to keep her healthy and happy and deal with the long term effects, if there are any, as they appear.
2 thoughts on “Tempus Fugit”
So glad that you have the site back up. Such a great site for other HLH families.
Also glad to see that Zoe and your family are doing well 🙂