Julia had her biopsy yesterday and all went well. She is in a lot of pain but recovering comfortably at home. It was a very emotional day yesterday as we waited and watched Julia cry about having to go into the OR. Her surgery was delayed by an hour which made things even worse for all of us. She cried and begged us not to send her into the OR. She kept asking for the "white, sleepy medicine". As she was doing her pre op assessment her temp registered 37.6 (border line fever for her). The nurse looked at us and said the anaesthetist may not bring her into the OR with a temp. She was not feeling well and I could see something wasn't right. The anaesthetist came to talk to us and I explained that this was the reason we were doing the biopsy (too find out why my kid was always sick and has fevers). The interesting thing is that Julia finished her oral antibiotics on Monday and as always 48 hrs later here came the fever. Everyone agreed that the benefits of going forward out weighed the risks. So Elio geared up in OR wear and walked her into the OR. We both walked her to the big OR doors and than I could not go any further. I watched as Elio carried her into the OR as she reached her arm out to me calling for me in tears. My heart broke as I totally lost it in front of the OR doors. I have been through this so many times but yesterday realized that this never ever gets easier and I can't take one more visit to the OR. The OR staff reassures you that they will take good care of her but really to hand your child over to strangers and not know what will happen in there is absolute torture and in my eyes we've done it enough.....NO MORE. As we were sitting in the surgical waiting room a family right beside us was pulled aside and told that something went really wrong in the OR with there daughter and doctors were working frantically to stabilize their child. The mother just about passed out and was shaking in disbelief. This is the first time ever in all my times waiting in the surgical room that I have seen this happen. I started to panic and realized that even in the simplest procedures with the best doctors anything could go wrong. Needless to say that it was the longest wait ever after seeing what this other family was going through. Finally after an hour and a half the doctor came out. He had actually taken pictures of the surgery (and boy were they hard to see), and showed us what he saw. The good news is that once he went in he did not see a mass (which he was expecting to see based on the CT), he did see an area on the side of the throat that looked abnormal so he took some samples and sent it to pathology. He also took some samples of other areas just to be sure. All in all he felt like it was good news that there was no obvious mass. Now we sit and wait for pathology results, which will take approx. 2 weeks.....torture. In the meantime Julia remains unwell and no one knows why. As I mentioned she wasn't feeling that well before the procedure so after was even worse. She was tired and complaining of stomach pain. Her oncologist decided to draw cultures and give her a dose of IV antibiotics to protect her for 24 hours in case she spiked a fever. And boy does she know Julia.....last night she spiked a fever...again. She remains unwell this morning and still has a fever so I will contact her docs and see what to do next. It was decided that she will go back on oral antibiotics until we have the pathology results. So once again she has to take more antibiotics (which she hates). We are also meeting with Infectious Disease next week to hopefully get some guidance from them. All these antibiotics can't be good for her. The other piece of news we got yesterday is that Julia finally has some of her B cells back (about 20%), therefore her oncologist will contact Texas about growing her own cells and shipping them to us for the future. Now that she has B cells the possibility of the EBV returning is higher therefore we tested it yesterday and await the results of that. If she's positive she will be ready to go to NY. I hope she remains negative long enough to figure out what's going on and hopefully get her better.
I realize that going to NY is where we need to go but you have no idea how lucky we are to have an oncologist like we do. This lady is the most incredible person I have ever met. She's not only brilliant but caring, compassionate, and kind, and she goes well beyond her call of duty and is always there for us. I don't know if I could do this and remain sane without her. She is the closet thing to God I have right now in my life. I trust her completely and value her expertise. She really is a saint. I will miss her while we're gone and wish we could bring her to NY with us. She has a calming about her and always makes me feel comfortable. I don't know what we will get in NY. The good thing about her is I know she will remain in contact and be checking up on Julia while we are there cause that's just who she is and what she does for her patients....incredible person.
As we wait for the EBV and pathology results I will be a little insane these next 2 weeks so bare with me. I know I have fallen off the radar with most of you but please know I think of you all and appreciate all your support.
I will keep you all posted on Julia's progress and the results once they are in.