Day +137: Goodbye CSA, Hello a bit of freedom

This morning I gave Nadia her last dose of her immuno suppressant (cyclosporin or CSA). There are no words to describe the feeling I have. We are still to take her oral Magnesium for a few weeks more and still have a antibiotic we still administer twice a week. Which is all nothing! Kids that come out of a BMT are usually on at least 15 meds a day, from anti-fungals, to anti-biotics, to steriods, to more than one immuno suppressant, to anti-nausiants. We have been SO lucky that at the height of nadia’s medication she only had to take 4, and she was as trooper taking all of her meds. In fact in the last few weeks she will see them on the counter while she is having breakfast and point to remind me to give them to her.

Graft vs Host Disease can show up at anytime after a BMT. They say 2 years post transplant is usually when you can let out a huge sigh of relief, but there are documented cases of it showing up 5 years + post transplant. So Nadia will be monitored VERY closely for the next few years. So we are not out of the woods yet.

We have been enjoying the great weather for the last few weeks. Nadia’s Great Amma and Amma came out just before Canada Day. We had a great visit with them. Nadia LOVED the attention and she was spoiled. Thankfully my sister and her 2 boys came for their annual visit and Nadia is just LOVING being around her older cousins. We catch her giving them hugs and kisses all the time. It warms my heart to see her interacting with kids as she has been so isolated from them for so long.

Now that she is done with her immuno suppressents she has a bit more freedom. We will be allowed to go out and eat at dodgy restaurants ;), go out to public places without wearing a mask and I can relax on my bleach filled cleaning regime. We are feeling like we can take a bit of a breather. Of course at the back of my head I am constantly seeing germs everywhere. We are still asking visitors to stay away if they have been in contact with anyone who has had chicken pox, measels etc. We were suppose to go to Calgary this week for a visit, but had to cancel because one of the cousins came down with a mild case of chicken pops 2 weeks ago, even though all the other cousins have been vaccinated and the rest of the adults have immunity to them. It doesn’t matter. Chicken pox has a 2 week incubation time and during that time you are contagious. So even if someone has a mild case of anything it could turn into something MAJOR for Nadia. It is a hard concept to grasp, even for Thor and I at times and ESPECIALLY because Nadia is doing so well. I mean everyone during cold season is like “oh I have a mild cold or a slight cough” and you don’t think it is a big deal, and in most cases it isn’t, but not for Nadia.

We are enjoying a quiet and boring life at the moment, and it has been hot as H-E double hockey sticks here. So we have been splashing in the splash pool, Nadia is LOVING it. Her and Einstein are having great fun.