Wednesday, October 26, 2016

A lesson in whining

Long day...this is where I whine about how I screwed up and forgot to pick up the contrast for Shelbie to drink while we were in clinic so she could have a CT scan right at 3pm...

But instead of whining, I'm feeling pretty blessed and sufficiently humbled because at 3:30 when we showed up late to the CT Scan and immediately remembered what I was forgetting all day...We stood beside a lady who had no nose.

It wasn't just that she had a flat spot on her face with smooth skin, she had no nose.  Instead, she had a large, gaping hole so you could see the back of her head.  In that moment, whatever else we were feeling, really made no sense whatsoever and paled immensely in comparison to this woman.

My error put us behind an entire hour because she had to drink a liter of contrast over one hour before they could do the testing.  By the time we got back to clinic it was late in the day.  There was only one person sitting in clinic and on her chest was the tiniest baby.  He looked a minute old but he was two months.

We sat down across from her and started making small talk about her baby.  The small talk led to big talk.  Again, I felt so blessed.

She was a single mom with Chronic Myeloid Leukemia.  I asked if she had a good support system and she said her family had abandoned her when she chose to carry her baby instead of aborting it in favor of starting chemotherapy.

Her Fiance was killed in a car accident in Idaho just two weeks before she found out she was pregnant.  A couple of weeks after finding out she was pregnant, they discovered she had Leukemia.  Her family wanted her to abort the baby.  Her white count was 220,000!!  Normal is 5000.  She refused to give up her pregnancy.   For 9 months, she lived alone, with cancer.

She just got to start treatment and hopes that they will be able to get her into remission. This young woman clearly didn't have much in the way of worldly things.  I asked her how she was managing to do it all without any help and support.  Her response was, "Well, I have Huntsman's for support."

I was so disappointed when they called us back.  I really wanted to get her contact information so I could send her some care packages, even get her some help.  I will have to add her to my growing list of prayers to be offered.

As for Shelbie, well, it's another round of stump the doctor!  They really aren't sure what is causing the swelling and pain.  They have ruled out cellulitis.  They have mostly ruled out lymphoma and he is pretty confident that the enlarged lymph nodes in her abdomen are not creating pressure that would be causing this either but the final radiology reports won't be done until tomorrow.  At first glance, there wasn't a glaring problem.

So, what does that leave us?  He isn't ready to rule out a blood clot.  We have to go back on Friday for more testing and a Vascular Ultrasound.  There is a condition that happens when a clot travels through a vein or artery and causes extreme swelling.  This may be what is happening.  The clot may have already passed. Her bad leg is 6 1/2 cm bigger than normal so that is a problem.  He is also considering a malfunction of her nervous system and it is perplexing that all of a sudden, her resting heart rate is up over 100 and her blood pressure has dropped.

I was surprised that he has done so much investigating in the two months since we saw him.  He has contacted a Molecular Geneticists to discuss Shelbie's case.  He is considering a test for a rare disease similar to MS that causes a problem with the myelin covering of the nerves.  They are testing her clotting factors, autoimmune markers and a host of other things.

It is frustrating that we had to leave without a solution or a treatment.  It is so hard on Shelbie to hear over and over that they don't know what to do.  Could this be her new normal?  We will be patient and hope that Friday will bring answers and maybe things will resolve on their own...who knows.



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  2. Wow. I wonder if Huntsman could facilitate getting her a package without breaking HIPAA