It's almost as if we should make reservations...I mean maybe if we reserve a good room ahead of time, we could spend St Patrick's Day in a good room with a tub and a window view! We've decided that the hospital is the place to be on each and every holiday, although it's not for their wonderful way of celebrating -- more for the humor it brings us each time we land in here.
Avery started running a fever on Sunday night, so once again we packed up the car and brought her in at 9pm. The usual routine ensued...lab draws, cultures, antibiotics, and tylenol. We added a chest x-ray to make sure she wasn't too backed up and found out she was very gassy - and therefore miserable. We spent the next 8 hours attempting to settle her back to sleep and ignore the nurses coming in and out. She woke up around 1am and was not happy so we asked for some gas drops...she woke up again a few more times in pain and then again at 4 she started to spike a fever again...more tylenol. Rough night for us all, especially when she decided she wanted to get up at 6:30am and Daddy had to get up with her while I left for work. We both loaded ourselves up on caffeine and slapped a smile on our faces, heading straight into the day. Role reversal for us both, as I found myself attempting to be nice to everyone and Jeremy tried to remember to ask the Dr's about all the tests and what if's. Tomorrow will be a little more normal - if you can call our life normal, as he goes to work and I log on from the hospital while entertaining a 2 year old.
Jeremy and I were able to sneak away for some Mommy & Daddy time on Saturday and that was a much needed break for us both. It's crazy to think that the last time we had really done that was for our anniversary in August. These last 6 months have really flown by, like they do every year with all the holidays, but this year seems so much quicker. Jeremy and I spoke to St Jude and the Dr's are recommending we take Avery to Sloan-Kettering in NY for a Phase II clinical trial when we finish our chemo here. This is most likely what we will end up doing, but it means more time away from each other. The good news is that the time is much shorter and 5-6 weeks in length as opposed to the 5-6 months we did this time last year. And - as much as we love St Jude -- NYC is way more fun! As we get more information and make more decisions I will let you all know...but for now -- this is the idea....
We are hoping to be discharged tomorrow night after her 48 hours are up, but we'll see. We return next week for her 6th and final ICE Chemo round and we are very excited to be closing this chapter of treatment. On Wednesday she will also be having surgery to remove her Hickman line and replace it with a port that is under the skin. This is a huge thing for her and some fun baths and pool time, but also for us as we say goodbye to the routine of changing the dressing every other day and flushing her lines each night. I can honestly say that I am over this process and ready for something new. The hospital refuses to give me a Nursing title so I am totally boycotting starting next Wednesday. I'm just saying...I mean really I think every cancer parent deserves an honorary degree of some sort - we know just as much about the important stuff as they do --we know the kid. That deserves something...right?