March 1st, 2013 § Comments Off § permalink
February 18th, 2013 § Comments Off § permalink
February 15th, 2013 § Comments Off § permalink
I stumbled across this shot as I was debating the means to and value of starting to blog again.
Somehow it suits.
November 30th, 2012 § Comments Off § permalink
It seems another year has gone by, this our first in a long time that hasn’t seemed completely overwhelming. The first half of the year saw us dealing with a few remaining scares, some testing, and continued stress, but as summer came and passed, the load began to lighten. Now we are looking up and realizing that there is a road ahead that may not be lined with hospital visits, and we are grateful.
Zoe’s health is, to put it simply, wonderful. We feel extraordinarily lucky to be where we are. So many families continue fight to get their children and loved one through their illnesses, or mourn their losses. We are acutely aware of how fortunate we are to still have Zoe with us, much less for her to be as healthy as she is.
If you recall the last medication that Zoe was taking earlier in the year was her Hydrocortisone supplement, which we have now successfully cut. There was some question of whether she would always need to take a supplement, as some patients’ bodies never return to making it in sufficient quantity, but we have. Her minimum level needed to be over 5.0, and it’s now holding at 8.0 naturally.
She has continued to grow, though it is still too hazy to tell whether or not her pace is on track to return to ‘normal’ or if she will endure some loss of height. She is currently slightly smaller than most children her age, but she is still so young, just about to turn 3, that she has plenty of time for some growth spurts to occur. A minor concern, in the scheme of things.
[youtube_sc url="http://www.youtube.com/watch?v=aD8y4Vv-skA" theme="light"]
Zoe’s energy level is astonishing, she is even more active than her older sister was at this age, and that’s saying something. She also seems to have a resilience that I don’t see very often in kids her age. She shrugs off knocks and tumbles and pains of all kinds, rarely crying about them. I like to attribute it to the amount of difficulty and pain she has had to endure having raised her threshold for pain in general.
There are days when she bursts into a torrent of words or a song with a big smile, twirling around or bouncing up and down, and I just tear up spontaneously. It’s hard to know how much these things affect you in the midst of them, but as time passes we are able to see.
From here we move ahead. Zoe is turning 3 soon, with a full two years of that life consumed by the process of curing her disease, but with so much life ahead of her now. She has been in school now for a year, and has been enjoying it so much that she will move to full 5-day weeks of school this spring.
May 23rd, 2012 § Comments Off § permalink
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.