2017…

2017…

Well it has been eventful.  I think 2017 is shaping up to be the longest year, we are all ready to see it end.  We moved up K’s annual testing to June b/c she hadn’t been doing so swell.  Just getting sick all of the time.  It was a good visit and her bone marrow biopsy looked great, we were thankful to say the least.  Her engraftment went up a tad but she is still not fully engrafted.  The repeated infections are due to her not having all of her NK cells, natural killer cells are imperative as a first line of defense for infections.  The good news is that her immune system knows that there is an issue and it is trying to compensate by producing extra b cells.  Problem is that b cells and NK cells don’t do the same thing, but hey her immune system is learning.  All of her other systems looked good so we also started hormone replacement…

That didn’t go so swell, she had every reaction and then some to it and after a nightmare summer they discontinued it.  She also had a really rough summer with being sick, a positive blood culture, seizures and throw in a broken toe into the growth plate!  In a two-week time span she was in the ER in NC, TX and Alaska!!  Nothing is ever uneventful in our family, never…  On a good note her and John caught more fish in Alaska then we will ever eat and for the first time we caught salmon – every single type!  Stitch is super happy as he loves salmon.  We also got to see a grizzly bear fishing for salmon in a river which was cool.  We had a car malfunction and were stranded in the middle of nowhere but hey we got to see a black mama bear with her two cubs to give us entertainment 🙂

Kimbell turned 13!  I can’t believe we have a teenager, I’m clearly getting older but every year is truly a blessing with her.

We also received news that it appears they have found the underlying cause of all of Kimbell’s problems.  They are hoping to publish by the end of the year.  Until it is peer-reviewed and published nothing is official but it is certainly not what we were hoping for.  To be honest it is just down right depressing so any and all prayers are greatly appreciated. 

In the last 2-3 months K has lost roughly 30 pounds, she is skinny minnie, her hair has been coming out in patches and well just a bunch of junk.  Tuesday we went to endocrinology for a routine visit but K’s heart rate was 171 and on recheck was 169 so off to the ER we went.  After a few hours of bells going off we were both losing our minds!  Yes clearly her heart is beating too fast, her respirations are out of whack and yes her oxygen goes from 80 to 100.  Last night they started her on heart meds which we hope will be temporary.  Turns out she’s been having chest pain.  Poor K had been getting in trouble for staying up so late at night, turns out when your thyroid is racing and your heart is racing you don’t sleep – oops!  She came home and slept for over 13 hours!!  Our amazing ped called the next morning with her CBC she is anemic but not bad and her white count is low but nothing big.  Not sure what is causing her bruising though as her platelets were good.   Always a mystery with K!  Her TSH is zero which means she’s producing way too much thyroid which explains the weight loss and tachycardia.  Today we go back for more blood work to find out the cause of the hyperthyroidism.  Please pray for quick answers as, well it’s kind of a mess as the treatment options cause more problems.  Hopefully we will have treatment options and ultimately get off of the heart medication.  It can always be worse so we are so thankful for what we have but it would be kind of nice to have a boring couple of months!

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John & Paige