I apologize for the delay in updating you all but it's been a crazy few weeks. Julia's surgery went very well according to doctors. It's amazing that after all I've seen and all the procedures Julia's been through this one hit me hard. I brought Julia into the OR (I don't normally - that's Elio's job) because she insisted I bring her. I had a major meltdown in the OR. I have never in 5 years cried so much that the whole OR was worried about me. They kept asking me "mom are you ok? get her some water?". I felt like saying who cares about me just take good care of my daughter. I held Julia tight as we walked in the OR and she begged me over and over "no mommy don't let them do this to me, please mommy, please mommy". Broke my heart, I could not compose myself. She gave them quite the fight, it took three of them and me to hold her down as they tried to mask her and get her to sleep, and even after getting the mask on she fought with everything she had. She held my shirt so tight and they couldn't believe she wasn't knocked out yet from the meds......that's my fighter. The wait..it was the longest 3 hours ever as I sat in the waiting room unable to control my emotions. Everyone around me must of thought this was my first time there. Finally after about 3.5 hours the doctor came out and pulled us into a private room. The surgeon said that Julia did very well and he was extremely happy with the way the procedure went. Unfortunately due to the size of the chin bone he had to remove he had to put her in a full leg cast (from butt to toes). Needless to say when Julia woke up and saw the cast she freaked. She was in a lot of pain and they did a good job keeping her druged up on morphine. The pain lasted about a week and then like the fighter she is, she totally recovered. She started moving around, determined to walk even with this huge cast. She was at the hospital on Tuesday and they switched her full leg cast to a half cast (for another 4weeks),and she was able to go back to school which made her so happy.
On a sad note Julia's EBV numbers (potential markers that the cancer is or could come back), are on the rise. We met with doctors Tuesday and given that Julia relapsed already once when her EBV titres started going up we have decided to start an experimental drug to try and control these numbers from climbing. The drug is considered "cytotoxic" - like chemo), and of course has potential harmful side effects. We were suppose to start immediately but Julia's blood work on Tuesday was really bad. We repeated the blood work on Thursday and although a little better still not good. Given these results she has been booked for a GFR (a kidney test), on Tuesday to see what's going on and because this new med is extremely hard on the kidneys we have postponed starting until doctors see the results of the GFR. Given that her EBV is on the rise we have started weaning the steroid to hopefully help with the rising titres. We have cut the dose in half and Julia will have a heart biopsy on Feb 22 to make sure there is no rejection.
I'm not really sure why but the last few weeks have been extremely hard. I'm physically and emotionally tired, worried, frustrated, and most of all so sick of being at the hospital. It feels like after 5 years of fighting I am quickly losing strength. I am emotional and can't stop thinking about what we've gone through and even more scary what will happen next? Will we ever be free of the hospital or constant worry? We continue to be at the hospital 1-2 times a week and quite honestly it's really getting to me. Julia's doctors asked me on Thursday if I was ok, my response "did I tell you how much I hate it here". After I said it I couldn't believe it. There are many families fighting tougher battles right now and losing so I try to remain grateful for where were at.
This upcoming week is one of many tests and results on Julia's latest EBV numbers. I am a nervous wreck waiting for the numbers. I will let you know how this week's tests go.
I want to thank you all for your continued support and let you all know that without your support, encouraging words, and prayers we really couldn't have gotten through this. I do want to apologize for my distance. I realize that I have not been very good at responded to messages and I apologize but these days I don't have much to say and feeling a little down. Just need some time to re group. I'll be in touch soon.