so now what?

I've had a few people ask me this now that Chloe is finally able to come home so I thought I'd explain.

As far as treatments go, she gets her last bone marrow sample drawn tomorrow to check it again. She has no more chemo, but will remain on multiple drugs to help her with marrow engraftment and to make sure her kidneys and other organs remain undamaged from what she has gone through. We will still have to take her to SLC weekly for a bit, then monthly probably for the rest of the year.

She can be outside, go places, ride her bike, play on the swingset or whatever, but we still have to be careful for the next 12 months or so. One of the biggest things is just that she is not around a lot people (especially kids) at once or in confined spaces with people - like (unfortunately)school, church and family or neighborhood gatherings. She may not be able to go to school next year either. She was pretty upset about that - she thought she'd be able to start going to school this week when she comes home.

I'm not an oncologist, but I've spoken with several lately so here is my explanation as to why. It takes up to a year after transplant before all of the blood cell levels get where they need to be. Her white blood counts that fight infections are coming back up, but there are other levels that remain low. She could still catch some viruses or bugs from other people - kids especially - that are no big deal to us but can be a big deal for her. So groups of people are less than ideal.

This is a little frustrating because she has been away from home for a long time. We'd like to have party for her or something fun, but we just can't. We need to play it safe. We will even have to limit what we do with our own family and probably should only have one family visiting at a time and only if everyone is healthy. So, if we turn down an invite, reschedule a visit or something - we hope you'll all understand.

We'll still have to watch what she eats or drinks and how it was prepared. No sharing food or drink. No well water unless it's been tested, bottled water when away from home on trips, camping, etc. No contact with streams, lakes, or rivers. No public pools, or any pool occupied by an infant or toddler. And of course, lots of hand washing by everyone. We have sanitizer bottles by every door in our house. Please use them if you swing by. Maybe all this sounds extreme, but we're kind of attached to Chloe so we're just going to have to deal with it for a little while.

Having said all that, she can and really looks forward to playing with her neighbor friends and cousins. We're glad she is coming home as the weather is getting warmer so she can play outside again and see some other faces besides ours. She looks forward to riding her bike again. Chloe called me tonight so I could tell her a story before bedtime. She had just marked off the last couple of days on her 100 day countdown calendar and was so happy. She hasn't been in that good of mood for a long time. She is so excited to get back to a more normal life. She deserves it; and so do her good sisters that have been so grown up and understanding for the past 3 years.