Sunday, January 8, 2017

Change Pains

It seems I am feeling the pain of change in my life...as opposed to growing pains!

Sam has been officially on his own since Wednesday of last week.  I am going on record to say it is much harder to have a kid move 2 miles away than a State away like Spencer did.  It doesn't seem right that I haven't seen him in 5 days.  It doesn't seem right that he won't be here for FHE tomorrow night.  It doesn't seem right that I only set three plates at the dinner table.  It doesn't seem right that I am so lost and pained over the whole situation.  I can hardly wait for laundry day when he will come home to clean up!  Ha ha.

He sent me a picture on Saturday of his lunch with the caption..."Eating like a college student." It was disgusting.  Some sort of TV dinner with a shmeat of indescribable horror  (Shmeat is short for "not real meat".) and a side of rubbery mac n cheese!  Oh, my poor mama heart.  I can hardly stand the fact that I'm not taking care of him. Sigh...

Shelbie has been sick since Thursday.  Really sick.  While I was in Salt Lake on Friday, I was getting text messages continually that she thought she was dying.  Finally, at 6 on Friday night, I asked Spencer to take her to the Urgent Care.

We are really out of the league of any general practitioner anymore.  I don't say that to be rude, its factual.  They wanted her to go to the ER for a spinal tap because they were afraid she had meningitis.  They did several tests and her white count was double, her platelets were below normal, which hasn't happened in a long while and she continued to bounce a fever around despite round the clock dosing of Ibuprofen and Tylenol. The Flu test came back negative but they really felt it was a false negative.  So, it was really inconclusive though it certainly seems like influenza.

We had a very rough Saturday, her and I.  She was so miserable and there was really nothing I could do.  She was getting angry that I wasn't doing something to make it all better.  We exchanged a few words in trying to understand one another.  My lack of action translates to her that I just don't care.  The fact is, I care too much.  I care and it hurts deeply that we have reached a point where I can't change the course of this disease.  I can't make it slow down or even stop.  I can't make doctors smarter or more compassionate.  I can't wave a magic wand...I can't even make a fever go away if it doesn't want to!  There is literally nothing I can do at times like this.   All I can do is pray for answers, relief and wisdom.

This morning, as I was getting ready for church, I wondered if it was a reaction to the plasma transfusion from Wednesday.  She had a reaction midway and we had to stop and remove the needles for a bit and then start over with the needles in a different part of her belly.  Later that night, she broke out into hives from the injection and the following day is when the Flu-like symptoms began.  I did some research and found a lot of articles on Hizentra causing Flu-like problems that can last days.

I am very worried that this only leaves us one last resort...chemo again!  It totally sucks!  I will call our Immunologist tomorrow and see what he thinks. It's a conversation he and I had back in October when she was in the hospital. Her immune system is attacking every part of her body.  She breaks out into hives whenever she washes her hair even!  Her body thinks it is continually under attack.  The drop in her platelet count is another reason to believe that her immune system is poised to start attacking those cells again.  The chemotherapy kills the immune system so it can't overreact. Because it leaves her without immunity, we hit the IVIG again hard core and in theory, things settle down.  The whole process takes almost a year!  9 months of Chemo is what she has had to endure in the past.  They use the same drug they use for treatment of Lymphoma.

I don't want to put the cart before the horse and get ahead of things but it's something I am coming to expect and hopefully, I will be relieved if they can find another way to get things back on track.

In the meantime, she continues in misery but we have a better understanding of one another and things are calmer here.  Maybe tomorrow will bring some answers.  It's been one tough weekend to finish off one tough week.



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