Thank you Celiac…. 

Lying in a hospital room with 4 kids and 4 mums crammed in to their childrens beds. Ive been told today that my daughter has a lung disease thats so rare our doctor – who is a lung specialist – has only seen it once before. The name is so long and complicated I dont think I will ever learn it. So tomorrow we have a CT scan to see how much damage this crap caused, and another bronchoscopy (because having had two at the age of six is totally cool) where they will also do a small biopsy.

On top of that she has a lump in her left armpit, blood test results that point towards lupus and major signs of autoimmune activity in the blood.

So the lupus isnt for sure I asked? And no, it isn’t, because lung departments dont diagnose it, but everything points to it. Great. Awesome.

We leave the day after tomorrow, have a week at home, then check in to heamatology and reumatology ward in another hospital in another town (because whoever visits the mosts hospitals before they die wins….right? Not many to go in Poland!)

So yeah. We are cool. All good.

Thank you Celiac. Really. ALOT.

5 thoughts on “Thank you Celiac…. 

  1. My heart truly aches for you and your family for what you have been through, and especially for your daughter who has endured more in her short life than most adults in a life time. I pray God is watching out for you and holding you all in the palm of His hand. May He bring peace and offer you comfort. Hang in there..

  2. So sorry to hear about the challenges you are facing with your daughter. Nothing is worse than seeing our children in pain and even more so when we don’t know how to make it better. I hope that you get some clear answers soon!

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