February 28, 2017

January 2017

Well we started off the year in the hospital.  I think Adilene has a thing with spending holidays in the hospital, I hope she gets over that soon.  She made sure to stay up to midnight and give me a kiss, Blaiden didn't make it past 11.  There were fireworks but we were facing the other directions so we could only hear them.  We got to home the following day but it was a interesting start to the year. 

The next couple weeks we didn't do much because we were waiting for Adilene's numbers to come up.  While we were stuck in the house I did a few little home projects.  Fred was still working in Columbus and so we didn't get to see him much but as soon as Adilene could leave we went to see him.  We had a great time and got to spend the night again.  We went to the movies and the same play place we had taken the kids before.  We learned that it is hard to find a kid friendly place to eat on a Saturday night downtown so we ended up eating takeout in the hotel room.  Fred had to work the next day so the kids and I headed back home after breakfast. 

The kids and I were supposed to take a weekend trip to Denver but Adilene wasn't healthy enough so we had to postpone the trip to February.  Then it was time to celebrate Blaiden's birthday.  He decided that he wanted a "Wild West" party in the beginning of the month after saying he wanted a Power Rangers party for the last 6 months so I had to plan a new kind of party.  It was a small but very fun and relaxing party.  Blaiden had a blast and was so happy his best friend from here could be there. 

February 27, 2017

Goals 2017

I am only 2 months behind on posting this... 😞This post is specifically for me to see if I completed my goals for the year and to help keep me accountable for the upcoming year.  I had thought about what my new goals would be and so although I am a little late writing about it some are already in progress.

Goals from 2016
1.  I want to donate my hair for a wig.  I will be donating it to Wigs for Kids.
           --Completed in February 2016.  I will not hesitate to do this again when my hair gets long enough.

2.  I want to work on my sewing skills.  I want to learn how to make hats and bags and give then to the families that are staying in the hospital.
            --I did do a little sewing this past year but I didn't make anything for the families in the hospital.

 3.  I also want to do something for the nurses and doctors.
          --My original thought was that I wanted to try and do something about every other month but that didn't happen.  I took in goodies and a few small other things about 4 times during the year.

 4.  I want to have a yard sale. 
           --I actually had two this past summer.  The first one was thrown together overnight when one of my neighbors had one and then I had another one a month later that I was more organized for.  It turned out great and everything that didn't sell went straight to good will. I was happy to clean out a lot of our stuff.

Goals for 2017
1.  Work on the outside of the house.  There are several projects that we need to get done in the yard and exterior of the house so that it will be ready to sale in the summer of 2018.

2.  Work on the inside of the house.  I want to get all of the little projects off our list before the baby comes.  I am hoping to do a room or two each month and then hopefully end the year off with finishing the kitchen. 

3.  I want to get in shape and build some muscle.  I had big plans that were kind of thrown off by the surprise pregnancy and so after this baby is born I really want to get back into shape like I was after I had Blaiden. 

4.  Make it back to Disney World this year.  The kids had such a wonderful time last year and I am very hopeful that we can take them again this year!

5. Take more pictures with my good camera.  This past year I hardly ever got out my real camera and only used my phone.  My camera takes great photos and I love having tons of pictures to look at so I want to use it more often then my phone. 

1 Year

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.