Wednesday, July 4, 2012
Julia is in the OR.........
Hi Everyone,
I did not expect to be writing to you all so soon but what a crazy day we had yesterday. We came to clinic as planned and Julia's blood work was a little concerning. That coupled with her clinical appearance lead to chaos. Our oncologist asked us to wait as she paged both ENT and Infectious Disease with the hope of organizing a biopsy time and some direction from ID. She came back and told us to go straight to ENT as they were going to bring her to the OR a s an emergency add on. So we ran down there only to find out that Julia would go to the OR at night, but that didn't work well for oncology as they wanted to do a bone marrow biopsy at the same time but the lab would be closed and could not recieve the samples. So after a lot of back and forth (all while keeping Julia NPO no food) it was decided they would do the procedure Friday. So we were admitted to day hospital in order to give Julia hydration for 3 hours. At around 5:00pm the doc came to our room and said be ready we will bring Julia to the OR tomorrow morning at 8am. So we arrived at the hospital this morning at 6am,and at 8am Julia was brought into the OR for removal and biopsy of 2 lymph nodes in her neck, a sinus wash, a biopsy of her adenoids, tubes put in her ears, and a bone marrow aspirate and biopsy. Poor kid is an understatement. She was so scared and cried so much, begging us not to let them take her. It was so bad that the anesthetist had to drug her in the hallway to calm her down. The waiting (no matter how many times we go through this), is brutal. Julia has just been brought to recovery as i am writing this, but is still fast asleep. There is blood everywhere coming from her nose, and she has a huge cut on her neck all stitched up, and if that's not enough another big dressing on her back from the bone marrow biopsy. When is enough enough? This poor kid can never catch a break and really not sure how much more of this emotionl roller coaster I can handle. Once Julia is awake she will be moved to the ward and be watched closely for the next 24 hrs. Biopsy results will take 8-10 days......more waiting....story of my life. I have asked our doctor here to contact NY and set up another cell infusion to buy us some time. Julia's counts are getting bad and I feel strongly that she needs a boost to buy us some time till we figure out what is going on. I hope to go to NY in the next 2 weeks for cells. The last 2 days have been an emotional nightmare and I am not answering any calls....sorry.....I just can't right now. I will be in touch and if anyone really needs something please call Elio. Once again I ask you all to pray for my precious baby girl as she AGAIN is facing more challenges. Thank you all for your on going support.
Sincerely,
Nadia
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