LIVERversary – year 2

I am so proud to write this post.  As of July 7th, our Beatrice is 2 years post transplant and we are so beyond happy!  We celebrated down in Longboat Key with some of her favorite people and her best friend (and cousin), Patrick 🙂 We played on the beach, ran around, went out to dinner, made smores – it was her perfect day!

Since we are talking about Miss Bea it is the perfect time to give an update about her health.

If you remember, Bea had a CAT scan about a month ago to look at her lungs.  They were infected and one was partially collapsed.  The Director of Pulmonary thought this was EBV related and wanted to treat with chemo.  Bea’s liver doc (Dr Campbell) and the head of EBV for Oncology said they disagreed and they didn’t think it was EBV related.

We were basically given two options. Treat with chemo or lower her immunosuppressants and see if she can fight off whatever is going on by herself.

The risk of lowering her ALREADY low immunosuppressants is that she could reject.  I know I have said that in the past but the amount they were suggesting was the lowest they would ever go without pulling her off completely.  The dosage is what we would HOPE she’d be on when she is 6 or 7 while we were trying to test how she’d do without it.

Even lowering it further made Dr Campbell nervous but she didn’t see another choice before jumping to chemo.

SO – we had a real grown up moment.  We were faced with doctors with differing opinions and different strategies on Bea’s health.  It was up to us to make the decision after being presented with both options.

Honestly, it was without even a pause that we decided to go with Dr Campbell.  I have said this before and I will say it again – Dr Campbell is THE reason Bea is doing so well and I have my absolute and full trust in her.  Whatever she says goes and as always, I know my Dad would agree.

We then started on Dr Campbell’s plan on lowering Bea’s immunosuppressants to .2MG 2x a day (7:30am and 7:30pm) and check her liver and EBV every week.

We’ve had labs the last several weeks (the latest being Monday) and her liver looks happy.  I am so beyond thrilled with how her body is doing (and the liver specifically) with on such low immunosuppressants.  Her EBV has been fluctuating – before we left for Longboat it was really low and now it’s up again but the GREAT news is that she isn’t coughing up green and isn’t coughing at all.

To me, that sounds like her lungs have cleared up but I will wait for the doctor to confirm 🙂  We have a big appointment with the head of Pulmonary on Thursday and then with Dr Campbell afterwards to figure out next steps.  My gut is telling me that we will put her under for another CT scan to look at her lungs and then go from there.

Either way, I think she is on the up and up and anyone who sees her would think she is healthy as healthy can be!  In fact, I was at a little family party over the weekend and two doctors even said to me (unsolicited) that Bea looked really healthy.

There is no better thing to say to a mom with a child like mine.

#BEAstrong

 

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