The Elephant

A few days ago, we had this amazing thunderstorm blow through.  It was the kind of storm that was preceded with a very eerie calm.  The sky was mottled with shades of yellow, blue, orange and grey.  The sun was shining but filtered by billowy , building clouds.  The air was cool and the smell of rain was prominent yet other than the strange colors in the sky it was hard to imagine that a storm of such force was about to unleash.  Not even 10 minutes later, the sky was pitch black and rain poured down from the claps of thunder and jags of lightening. 

That's what today has felt like, a big storm brewing!  We had a little fun before going to Shelbie's Oncology appointment but now the blue sky seems to be fading and there is a feeling of unsettling calm.  I'm not sure if I am having the 'mother's intuition' feelings or just getting worked up about nothing. 

For a little good news, Shelbie's platelets were way up!  220!  Up a 100 from the end of June.  Her white count is still high and so is her red count and hemoglobin.  At first, I wanted to cheer but that was quickly muted by the fact that since the day she was born, her white count has never been normal or even close to normal unless she was sick.  I asked the doc what his take was on it.  He asked a few questions but didn't really have an answer.  As the appointment went on and Shelbie talked about her daily nosebleeds that last for an hour or more, the extreme pain in her nose and sinuses, the ear aches, fatigue, heart pains and her list went on, it became apparent that she is not doing as well as it appears to you or me.  She is the master of disguise. 

So, the consensus is that the lousy eye virus she had nearly a month ago has spread to her sinuses.  He was saying that there are only two treatments for this because the danger is that it will continue to spread throughout her system and since she has no immune defenses, could become life threatening.  He told us of a patient awaiting transplant but had to be hospitalized in Salt Lake for the very same problem!  That wasn't comforting!  One of the treatments is IVIG which she has done plenty of times before but seems to be the lesser of the evil treatments.  The other option, which the lady in Salt Lake is getting has side effects that we are not willing to take on and she would have to be admitted to the hospital for a few days.

After hashing through all this, he decided he wanted to wait a couple of weeks and see if she will kick it soon.  Okay...I guess, but I'm not sure why we are waiting when it's been over a month of sickness for her and the last thing I want is for this to get out of control. 
He asked a few more random questions, we collected more prescriptions and were on our way.  Once we got in the car, Shelbie asked, "Do you think I have leukemia?" 
Oh good grief, I don't want to go here even though the thought has crossed my mind recently too. "I don't know."
"I think I have leukemia."  We let that heavy thought sink in uncomfortably deep and not another word has been said but it is definitely the elephant in the room, those eerie clouds just before the pouring rain.

Those strange questions he asked were in the hunt for leukemia. The fatigue, nosebleeds, excessive sweating, increased white count...but it could be a million other things too and jumping to conclusions does no one any good!  It could simply be this virus wreaking havoc on her fragile immune system.  Here we go, another weekend of waiting patiently, trying to keep happy thoughts afloat in the center of our minds while we dance around the elephant taking up way too much room in our lives.  I know I've said it before but I'm going to say it again...I hate this!


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