All has been going so well, should have known it could not continue to be that perfect. After last week's blood work (we have this done every Wednesday in clinic) we were told that Gracie's liver enzymes were coming back "abnormally high". So we were asked to come back in on Monday to do further blood tests. Monday evening we were called by our Primary Nurse and advised that they were still high, although not as much, however in the manner that the news was delivered to us, it was quite alarming as "we would need to talk to Dr. Ron" was the response she had to all of my questions, this and the fact that she advised that they were thinking we would need to do another bone marrow aspiration (BMA). This put me into a tad bit of a tailspin for two days until clinic on Wednesday. We have a Primary Nurse who is new to the role, so I think this may have had something to do with all of this, however being told things like this in that manner is disturbing to say the least and although in hindsight I probably overreacted, I was scared.
Wednesday's clinic visit brought some relief as Dr. Ron believes that since all her other numbers are good it is probably due to the cold that she has. So we will wait another week and repeat the blood work before we even consider doing another BMA. He is concerned about the HLH returning especially since we finished the cyclosporin on December 31, but he still attributes this to her current cold.
That being done I had a great day planned for us today full of fun, however Gracie woke up this morning really upset and crying and wanted to go back to bed, once again alarms go off. I took her back to clinic and it turns out she has an ear infection. A little bit of a "phew" as this can also explain the higher liver enzyme levels. But being home with a child who has a normal "childhood" illness proves pretty tough, you would think they would rest all day, and that she did, with demands every five minutes, so I just laid in bed with her and we had a pyjama party so to speak.
Because we cannot give Tylenol (no masking fevers in oncology kids) we will take some needed quiet time this weekend as it will take a few days before she feels better.
That's the latest for now, hope all is as well as can be with everyone else.
Love The Sterks
Ear infections suck....walker was on antibiotics for months at a time...little did we know at the time he was deaf in that ear...so of course i thought all the ear infections caused it...nope just born that way...kind of like the song...lol as you said you knew it was going to well...but this is just a small pimple in the grand scheme of things...and who doesn't like to sit in pj's all day.. :) 2012 started off good and heres hoping it continues...xoxo from Ontario
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