Coping with chronic disease



Cardon Children's Medical Center providing comprehensive pediatric care for Arizona's families Mia is a very special girl she has Simon blacks and anemia when she was six weeks old we rest her to the emergency room because she was really pale and lethargic they told us that we think it's this diamond black pan anemia and it was like wow okay is this a lifelong thing and it is it she'll have it for the rest of her life so it's it's pretty hard but with good nurses and doctors it's we've managed it really easy just having that support here I met Mia back in I would say then 2002 she was just an infant at that time so you know we cared for her and loved on her and have watched her grow now for the last nine years as she's dealt with her chronic illness diamond black hand anemia is where your bone marrow fails to produce any red cells at all so she makes everything else just not the red cells kids with chronic illness are in the hospital in and out all the time and they've even at home they've got to go through a lot of different things with medications and you know everything that they've got to deal with here in the hospital they're here in and out of the hospital quite often some of them here once a week some of them twice a week some of them maybe on a once a month basis but they have to deal with a lot of IV pokes and medications and a lot of different things that kids shouldn't have to deal with we would come so much to the doctors which is here at the hospital that she would see billboard signs kind of by the mall and she she would know we were on our way to get poked and so she would cry and she would cry as she walked in the door she just didn't want to go to the doctor but you know as a parent you have to you know you have to do it for your child's well-being and so as she's gotten older she's so great about it well it was for my first time it were it really hurt because it was my first time and I didn't and I didn't know what was going on and I was just like 1 or 2 or I don't know how old I was it just said it was it really heard that's all I can remember Nia's prognosis is I mean she'll have this forever she could have had a bone marrow transplant to cure her if one of her sisters was a sibling match and she has four and none of them are a match so literally she lives off of people donating their blood and she comes in every three to four weeks to get that blood and that's how she survives when kid like Nia come here in peds outpatient on you know four-hour Everlong their treatment is it might be 15 minutes that we see them for for a quick you know medication or it might be all day long like Mia is here typically for 6-8 hours trying to keep them busy is a task sometimes we have Child Life specialists that come in and help provide some distraction entertainment they bring in iPads and iPods and computers and the Wii to play on and anything like that to distract them from what's going on from those pokes that hurt and things like that has really been helpful imagine supports me was Sue's my younger sister she plays with me and I get toy and sense of this happened didn't be watched movies and it they all make us very comfortable and it feels like I'm at home I feel like you didn't do this it feels different every time I don't actually know but my body actually tells me like it feels kind of down and I kind of soar like this and my head starts to hurt my I'm in school so I think it makes them much more resilient sometimes that's hard as a nurse to see that because they grow up way too fast but on the other hand knowing that they understand their disease and understand what's going on with them I think is very important it's so amazing because she I mean we would have to hold her down my husband and I and a nurse to put her IVs in and she's gone from that to being like okay I have to take out my own IV and so she undoes the tape and everything and pulls it out and so she's looking forward to in the future where she can actually put it in herself so we'll see how that goes Mia is very special to me not only for a lot of reasons okay me and I share a birthday we have quite a bond between us but I have been caring for her for a long time she is kind of my favorite nurse because she every time because when I first saw her she was like the first nails I ever did my IV and I just loved her I think her I just like her she's my favorite one Mia has taught me so much again about making those choices for themselves when starting an IV do you want to hear today or do you want it here sometimes you know we need to make the choice but a lot of times if we do that one little choice it makes such a huge difference in in what they do and how they you know deal with their their disease and and how we care for them and I would not trade my job for the world I come to work even if I were given a million dollars tomorrow I'd be at work tomorrow because I love what I do I love these kids and especially these ones that we see on a regular basis you

2 comments

  1. Just watched the video about..MIA..no wonder THE PHOENIX MERCURY chose her as Assistant Coach..If I were ever Blessed in life an won one of those bizillion dollar power balls..this is one of my first charity's ..this Hospital and these kids are SUPER.# made me cry..luv it..

  2. Just watched the video about..MIA..no wonder THE PHOENIX MERCURY chose her as Assistant Coach..If I were ever Blessed in life an won one of those bizillion dollar power balls..this is one of my first charity's ..this Hospital and these kids are SUPER.# made me cry..luv it..

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