I thought about skipping this post since I am a little behind on the blog but it was such a significant year, I just couldn't do that, I had to write about Adilene.
I have started this post over and over again and I still don't know if I am getting my feelings across so I will start with some facts:
December 6th 2016 is one year since her diagnosis.
Adilene has spent 85 days in the hospital. Now considering that the first 31 days were consecutive that leaves 2 months out of the 11 other months in the year. It feels like that number should be higher because I felt like we lived at the hospital.
She has had 68 scheduled outpatient visits. This number doesn't include times where I have called and asked to be seen that day for different reasons which I would guess adds another 15 days.
This all adds up to 168 days that she was at the hospital. That is 14 days short of exactly half a year. This is probably why I have felt like we have lived at the hospital. When we were home the other half of the year I would say at least 3 of those months she was not able to leave the house due to her counts being to low. That means that there has been 3 months out of the year where she was able to act like normal healthy girl, but I think the days of her feeling 100% healthy is much much lower. This is the first time I have added up all these numbers and I am a little shocked. Seeing it in this context is much different then living it day to day.
Everyday is a little different with her medications. She usually gets Chemo once a week but those medications change almost every week. On a daily basis she gets anywhere from 3 -8 different medications at home.
She has had 14 lumbar punctures, 4 bone marrow biopsy's, 2 PICC lines, 1 surgery to put her port in, countless x-rays and 16 nights in the PICU.
To say this year has been trying is an understatement. There were times that the only thing keeping me going was Adilene, Blaiden, and Fred. I have felt like I am just going through my days worrying about the next 10 minutes and trying to keep my head above water, and not miss something that is essential. I hardly cooked meals, was never on top of laundry, choose cleaning and disinfecting over playing with my kids numerous times and overall was not a great wife. But we made it though the year. We are all still here together and continue to support Adilene through the next 15 months of her treatment. I am already planning the celebration we will have when she is declared cancer free.
Although this year has been the hardest of my life (and my families) we have had some wonderful experiences too. People have supported us in ways we have never dreamed of, we have met some amazing nurses that care for Adilene and care about her. The physicians are nothing short of amazing, they are so knowable, kind, and every one in the practice knows Adilene by name even if we have only met them a few times. We got to go to Disney World for the first time which we loved so much we are planning on going again. On those very special occasions that that we could all 4 go and do something together we would always find something fun to do. Adilene (and all of us) has made it though the worst part of treatment, although I am currently writing this from a hospital room during an 8 days and counting stay. Going though all of this has made me appreciate the family time we get to have. There is nothing I love more then the 4 of us at home playing a game or watching a movie.