update (friday)

Hi!  TGIF 🙂

Here is a little update about what’s going on.  We got a TON of tests back and they haven’t found much.  We were hoping they would catch something viral or bacterial so we could at least rule out EBV causing all of this craziness.  We didn’t.

BUT – some little factors within the tests gave our doctors confidence that this ISN’T caused by EBV and, instead, is maybe a viral infection in the lungs that is causing the lymph nodes to swell.  Bea just can’t kick whatever is going on.

However, the pulmonary doctor thinks it IS EBV related and wants to treat with chemo.  Dr Campbell and the Oncologist DO NOT believe this is EBV and want to take other steps first.

Honestly, it was hard to hear that there were differing view points on this but Jordan and I have hitched our wagon to Dr Campbell from the beginning.  She knows Bea best and we trust literally whatever she says.  She always has her best interest and I truly believe she is the best and perfect person to be in charge of Bea’s health.  My Dad always agreed – he loved her too.

She chatted with all doctors involved and they all got on the same page as far as next steps.

Today Bea goes into Cincinnati Children’s for a 6-8 hour infusion of IVIG which is a therapy that can help people with weakened immune systems fight off infections.  It is administered through an IV and she basically just sits there for several hours while it goes into her body to help fight whatever is going on.

The tentative plan is to do this every 4ish weeks.  Kind of a bummer because watching her get an IV is never fun and trying to keep her occupied and happy for that long is a challenge.  I hate that we may be spending 1 day a month for the summer doing this BUT

it isn’t chemo.

The hope is that we do another CAT scan in 6 weeks to see if progress has been made and then we will decide the next steps.  I am so confident that this will clear with the IVIG and that this ISN’T EBV causing PTLD.

That has always been my gut and sometimes, you just need to go with it.

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xo

Hillary

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