bea’s liver.

As you remember from the last several posts, there is no real way to know exactly how the liver is doing unless you biopsy it.  We do labs frequently to see anything major that is going on but just because her blood work says she isn’t rejecting – doesn’t mean her liver is 100% okay.

The reason we would typically biopsy every 5 years (instead of every year or every 6 months) is because they have to put Bea under and it’s taking a little piece of the liver out so the less we can irritate it, the better.  With a procedure like this, you’re also worried about internal bleeding, etc (that is why we have to stay in the hospital overnight).

If all things were normal, we would have waited until she was about 5 and a half to biopsy.  Because she has been fighting the EBV, we’ve had to drastically lower her immunosuppressants – thus making her MUCH more prone to rejection.

It’s all actually so complicated but bottom line, no kid her age is on this low dosage of immunosuppressants and NOT rejecting so we were fearing the worse.

Good news is – GREAT news is – her liver looks surprisingly awesome.  Really really really awesome actually.

Dr Campbell called me yesterday while I was at work and gave me the news that she went and personally looked at the piece of liver under the microscope and it looked healthy.  No giant red flags, nothing really majorly noteworthy.  Just that is looked really really good – a 9.5 out of 10 actually.

What.a.relief.  This means we keep her on her low dosage, we keep fighting the EBV, NO CHEMO, and continue letting her grow and thrive the way she should.  We will continually get labs to make sure this EBV isn’t causing any major issues and right now, it is still relatively low.

Next obstacle to tackle – the lungs.  We are still waiting on results for several tests and will know more in the next few weeks.  In the meantime, we will be celebrating fireside with turkey, family, and friends all weekend long.

And one last thing – thank you to Cincinnati Children’s and all who work there.  We are so proud to be a patient of such an incredible hospital filled with such outstanding, kind, and intelligent staff.   We are also so lucky to have the support and love from the community in Cincinnati and the people who have followed Bea’s journey from the beginning.

We are so lucky to have each of you.

Thank you for the love, the prayers, the good vibes, and the support.

Thank you.

 

#BEAstrong

Hillary

One thought on “bea’s liver.

  1. Keeping you all in my thoughts and Prayers. I wish I could take this on for Bea so she (and you) wouldn’t have to go through it. Wishing you all a Happy and Blessed Thanksgiving. Be sure to watch Santa Claus in the Macy’s Parade. When I was little I would always watch it with my Grandpa George D Kelly (Your Dad’s Grandpa). ❤

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