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Old Wed Feb 15, 2012, 09:17 AM
evansmom evansmom is offline
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Join Date: Nov 2007
Location: Ontario, Canada
Posts: 203
Hi Chris,

Sorry to hear about your daughter Kira having to face the hurdles ahead but she's young just like Evan was and otherwise healthy and strong. With a matched sibling, the odds are very much in her favour for a full recovery.
You already can say your kids are amazing I am sure, but post transplant, you can additionally refer to them as AA/BMT Warrior and Survivor with a Hero for a brother. Pretty amazing titles if you ask me!

But back to one day at a time...

As far as getting her ready leading up to admission, staying healthy and avoiding sick friends, big crowds, mouldy places, etc. is very important. You do not want any infections on board going into this.
Mentally, we prepared Evan in a very matter-of-fact way. Of course we had emotions come to the surface and so did he, but we didn't dwell on the worry side of things as it does more harm than good. So we just developed a "yah, this is a crappy hand you've been dealt and it's not fair but things happen that we have no control over so let's get in there and do what we've got to do to get you all better" attitude. We emphasized how fortunate he was to have a matched and willing donor, because many kids sicker than he was had no one to donate. We also stressed from the get-go to Evan that we loved him, we needed him and in order to get through all of this, he would have to co-operate fully and completely with the nurses, doctors and other health team members. Un co-operativeness and poor manners, even in such difficult scary times was not an option. Kira will understand that her parents love her and wouldn't put her through anything that wasn't necessary. She will know to trust you and the doctors and nurses to make the right decisions that will get her well again, even when she doesn't feel like going along with the program.

I think you have just enough time to petition that hospital (I assume their BMT Unit is a Pediatric one?) to get with the times and get Wi-Fi into that place for the sanity of the youngsters and parents who are in-patient for 6 weeks or more, I mean come on!

Is there any chance that the person who informed you of this was wrong? Sometimes hospitals do have Wi-Fi but it's a well kept secret until you get settled on to the ward and get talking with the nurses there. That's what happened to us at Toronto's SickKids.

At any rate, without Wi-Fi, have your daughter research some movies she may like to see now so that you can ensure your local video store has some of them (of course, dvd rentals are becoming more and more obsolete as well). Friends and family can purchase some new, in-wrapper board games (that can be sanitized and then opened up fresh while in isolation, Apples to Apples is a great game) a deck of cards, dominoes, that sort of thing. Child Life will also have tons of good suggestions for Kira when she's both in and out of isolation, especially in view of there being no Wi-Fi such as crafts and things.

You are right to be thinking about this now because 6 weeks or so is a long time to keep a child entertained, especially one who is of tech age!

Get in touch with Child Life at the BMT Unit now and see what they have to say re: Wi-Fi availability, and suggestions for passing the time there, you may be pleasantly suprised.

Take care and best wishes to Kira for a complete recovery.
__________________
Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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