oncologist

A word I never wanted to say.  A doctor I never wanted to meet.

Thursday’s CAT scan went well – like opposite of how it went last time.  She looked so cute in her hospital gown which made her FEEL really good too 🙂 She went under anesthesia really easily and woke up groggy – not a total terror like last time.

IMG_9090

She rebounded quicker too – we watched a movie in bed once we were back and by lunch she was eating a grilled cheese.  I was really optimistic about how the day went and what the results would say.

We got a call from Dr Campbell with the results later that day.  Here is what she said….

EBV is the lowest it has ever been.  Crazy.   The whole reason why we started this CAT scan thing is because her EBV was the HIGHEST it’s ever been.  Now it’s the lowest.   Great news.  Jordan took her yesterday morning (6:45am) for extensive blood work to have shipped to Pittsburgh.  Hoping to have those results later this week.

She has had this lingering cold since the last CAT scan (which was over 5 weeks ago).  Tons of mucus in her lungs and even a lot of mucus blocking some major airways.  Why can’t she get rid of it?  Why is it still there?  This is a red flag especially since she has easily beat the common cold multiple times before.

It could be a million things so Dr Campbell wants us to see Pulmonary to figure out this lung situation.  They thought she may have cystic fibrosis and wanted to test her for that but we vaguely remember them running this test when she was first admitted at 10 weeks old and it was negative.  Thank goodness.  We have an appointment with the Director of Pulmonary this afternoon to hopefully get more answers.

While doing the CAT scan they also noticed that the blood flow to the liver isn’t as strong as it was post transplant.  This can be because where they sewed my vein to hers there could be scar tissue.  We are getting an ultrasound on Thursday so we can take a closer look and decide what to do.  If this IS correct, they will do a procedure to stretch out her vein to increase blood flow.  This potentially works for awhile and then she may need the same procedure a couple more times as she grows in order to insure it’s success.  Not a MAJOR concern but definitely something we want to address.

And finally, the lymph nodes.  The lymph nodes that were swollen last time we did the CT scan stayed about the same size.  There is one that grew by 25%.  Obviously very worrisome and it is in spot where we can’t biopsy.

Because one of the lymph nodes has become bigger Dr Campbell is introducing us to an oncologist at Cincinnati Children’s to talk next steps.  They may just monitor these lymph nodes and see what they are doing (especially after we figure out the lung stuff), they may adjust her medication more (potentially decrease her immunosuppressants to INCREASE her chances of fighting this herself), they could potentially biopsy the other ones, they could start chemo.  All of these are on the table right now.  I will have more info this week when I meet with the oncologist on Friday.

SO – big week for Miss Bea.  Tuesday (labs), Wednesday (pulmonary) , Thursday (ultrasound), Friday (oncologist).

I am certainly wearing out my welcome on your prayer list but please continue to send one up for Miss Bea.  Pray we get some answers and a steady course of action.

And please pray that chemo isn’t the route we have to go.

#BEAstrong

Hillary

 

 

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