Home and learning to navigate life..

3/11/2019

We were released Saturday but after several drama filled days why wouldn’t this day be any different. We saw Dr. Dipatri nice and early and he gave us the thumbs up to go home on a new medication to help with the Nausea.  Ellie pepped up a little when he said we could go home.  Ellie then Ellie threw up a little but they still felt comfortable to sending us home because she was eating and drinking fine.  Her head is still getting used to the shunt and her brain is settling down.  But when the nurse came in with the discharge paperwork and to take her IV out Ellie took a turn and started complaining of pain.  So we decided to hold off on going home until she was comfortable.  Which meant no St. Patrick’s day parade.  It was probably for the best but still disappointing.  From all the photos and from what I have been told Ellie was well represented in the parade. I cannot thank the town of Lemont for taking her under there wings and making her feel so special.  My family along with Jake marched in the parade in honor of my sweet girl. Once Ellie’s pain was under control around 6pm we where released to go home.

We spent the night relaxing and enjoying family time.  Sunday, I went to a St. Baldrick’s event.  I was invited to several this weekend but I had already made commitments to the one in Frankfort earlier. Unfortunately splitting myself into two is just not an option, although it would make my life al little easier if I could. Jake shaved his head at the St. Baldrick’s Event in honor of his sister.  While I was not home I was wondering the entire day how Ellie was doing at home with Dave.  When I got home Ellie was laying around.  Her Grandma & Papa took her for a very short walk and it wore her out.  We had plans to go to my sisters and celebrate our Bithdays.  It was the first time I saw Ellie with an appetite in days.  It was nice to have the family back together.  Unfortunately, Jake did not do so well as he was emotionally struggling from the past week.  He struggles with the idea that his sister is not doing anything around the house and that he has chores. Sometimes Jake masks his feeling and thinks he is upset about one thing but in reality he is struggling with something completely different. When we got home we talked for a bit and realized he is just really worried about Ellie as she is just laying around, not feeling good, and not herself.  Cancer not only is hard on the person going through it but it makes it really hard to be a family unit as you are pulled in several directions.

This morning we woke up bright and early to bring Ellie for her Proton Beam mask/neck fitting and consultation.  Before we left the house Ellie started vomiting again.  Everytime I feel like we take a turn for the better we get brought back down to what feels like our new reality.  Ellie then continued to vomit on the way to the Proton Beam center.  When we arrived we checked in and I noticed the worker had an #Elliestrong Bracelet.  And it surprised me and she informed me that a bunch of the nurses and workers have them on. It gave a boost of feeling of comfort. We then met with the child specialist to speak about the procedure.  Everyone was so nice.  Ellie didn’t have the energy to lift her head.  She is so weak its hard to see Ellie weak as before all of this she was so athletic and strong.  I know we will get to that point again I just wish it was a faster process.  I need to take my own advice that I give Ellie not to rush recovery that it takes time.

Tomorrow is Audiology and we get to see if Ellie’s hearing has improved at all.  Praying for improvement on her hearing.  The Proton Beam Radiation will affect her hearing also but I am hoping for the best.  She does a pretty good job compensating for the most part.  There are several times she hears nothing when you are talking if you are on her bad side.  Just another learning curve until her treatment is finished and we can figure out what her new hearing baseline is going to be.