The Fine Line

I am reminded again this week, that we walk a very fine line.  Maybe several fine lines to be more accurate. To be honest, I am done with fine lines.  I feel drunk and overhung on the past month; both emotionally and physically and nothing looks straight to me anymore and putting one foot in front of the other isn't as easy as it was a few months ago.

There has been so much in the news this past year about children being taken from their parents because the parents have been accused of causing medical harm to their children, even accused of making up symptoms and diseases.  I am not a judge and jury but I have had a hard time comprehending how that could happen and as I read their stories, I believe that the parents were doing the very best they could.  They were advocating for those children and sadly, fell into a system being choked out by egos and inflated positions of perceived power!

This week, I have been startled at our own little confrontations with doctors and can see how very easily things like this can happen.  When it comes down to it, I will always be the crazy mom.  No matter how kind I am, how submissive I can act, how far I dumb myself down,  I will never be seen as a partner in my children's care to some doctors.  When I try to be knowledgeable,and spend time trying to understand the disease processes that are affecting my children, it will likely be misconstrued as bossy, controlling, egotistical and even hysterical.  Hypochondria may even be a word that is uttered and I hate that word!!

This week has done a number on me.  Tuesday, we saw our Oncologist because of Shelbie's whole ITP hiccup, H-Pylori infection that appears to be back and we needed a re-evaluation for IVIG for the insurance company.   It would take another 12 pages to rant on about the visit we had so I will spare the details of that however, the word frustrating doesn't even come close.

For some reason, the doctor whom I have worked so well with over the past 7 years has taken a complete 180 turn and become much less considerate, compassionate and caring. I don't even know what happened.  It makes no sense to me at all.  Since the boys received their DC diagnosis, things have been different.

All of a sudden, he is treating Shelbie like she has nothing wrong with her than a couple of minor auto immune problems.  He even went so far as to say that he will no longer do bone marrow biopsies on her and continuing IVIG is actually hanging in the balance as well.  He seems to think now that every problem she has can fit under his little umbrella of auto immune.

When we began discussing the H-Pylori issues, he said he didn't believe she ever had it in the first place.  I explained that we had a positive blood test for the infection and classic, text book symptoms.  He argued that the blood test probably just picked up anti bodies from someone who donated plasma that Shelbie received.  He said, she probably just had pancreatic insufficiency and we should just start her on enzymes again!

That makes no sense at all...if she has pancreatic insufficiency is not caused by an autoimmune's caused by diseases like Cystic Fibrosis or Shwachman Diamond Syndrome and in some cases, Dyskeratosis Congenita.  Yet just earlier, he denied that she had anything but an auto immune problem.  He refuses to even keep her in the SDS camp until we figure out what is going on.  I questioned his reasoning but not in a rude way, just trying to understand.  I finally suggested that I would take her to the GI doc and get his opinion since he was clearly the expert in GI issues such as H-Pylori.  He didn't like that notion and then decided to order some fecal fat tests, fecal antigen testing for H-Pylori etc.

Her white count crashed on Tuesday but came back up by Thursday.  Her platelets were also up so that was good.  But, he isn't convinced that we need to keep doing IVIG even though without it, her platelets drop, and she gets sick.

Finally, as we left he said, "See ya in a year!"
A year???!!!  The kids are suppose to have their bone marrow biopsies in August/September.  Now, he doesn't think Shelbie needs one because of course...there isn't anything wrong with her...or so he makes it sound.

His attitude couldn't have hurt more if he had of just slapped me across the face.  In fact, I would of rather felt the sting of that.  I don't get it.  Just because she doesn't have what the boys have, doesn't mean she is magically better!  For 18 years we have done biopsies because things are never right in her marrow.  She steadily loses cellularity. She has gone from intermittent neutropenia to chronic neutropenia.  There has been no improvement in any area of her life so I don't understand how he is justifying a complete halt of these tests.  Even if her marrow failure is autoimmune such as Aplastic Anemia...bone marrow biopsies and aspirates are the gold standard so it can be treated with transplant before it becomes fatal.

I tried so hard to be kind.  To be understanding.  I asked questions to try to understand but his attitude was less than helpful.  All of sudden I am working with Dr. Ego.  I could tell he was getting frustrated with my queries.  At what point do you risk coming off like a witch in order to be heard?  At what point do you shut up and walk away, or stay to fight? If I stay to fight...I get the crazy label and then accused of all sorts of evil!  Is that a risk I want to take?

Some people, lots of people in fact,  have suggested I go back to him and smooth things over, apologize for my behavior...but I didn't misbehave!!  What am I apologizing for?  Wanting to take care of my kids? Wanting them to stay alive?  I have to apologize to him?  Not once has he acknowledged the challenges the past month has brought to our family.

I wonder if he has even stopped to think how completely overwhelmed I am.  I wonder if he has any idea that the smallest, tiniest thing sets me off?  I wonder if he knows how scattered I've become?  I wonder if the families whose children were taken from them this year for stupid accusations wish that maybe they had just remained passive and dumb?

It's a fine line.  It's not a comfortable place to be.



  1. I am so sorry things are so difficult right now. I keep you guys in my thoughts and prayers!


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