The last time we posted on here we said that Emma would be getting to go home on Friday, October 3rd. The good news is that Friday was an eventful day it just wasn’t what we as a family were hoping for. We found out early last week that the therapists at Madonna recommended adding on another two weeks to Emma’s stay here this time. Ironically enough we had discussed amongst the two of us that we felt she needed more time here as well, so it was nice to be on the same page as Emma’s therapists. We all felt that Emma had skills and abilities that she would be able to hopefully get if we stay for a couple more weeks.
God blessed us as a family on Friday with a sign that we were doing the right thing by challenging Emma with continued intensive therapy. On the day Emma was supposed to be discharged Haley sent us this picture at school.
The sight of my daughter sitting up for the first time since very early July was just too much to take. We now know how much pain she was in leading up to the surgeries out in Boston and appreciate that much more how important that this skill is for her development and independence. Praise God for this and for her determination to overcome this disease.
The past couple of weeks were in true Emma form exciting to say the least. The day we posted last Emma had a temperature and her blood counts dropped dangerously low. Because of this she was placed on isolation which meant that the door to her room had to constantly be closed, anyone in the room had to wear a face mask, and Emma was unable to leave the room unless necessary and even then she had to wear a mask. This started on Wednesday morning and didn’t end until Tuesday. Sleeping in the mask is interesting to say the least. Most people would stop there with the drama but not us, we also started the day with our fridge and freezer going out in the house and got a very surprising call that afternoon telling us that Aiden had a temperature and needed to go home. Talk about a challenging 12 hour time period. We made it through it though and it really helps put in perspective that no matter how bad things are, it could always be worse.
Emma still continues to work on sitting everyday at therapy while trying to add in some butt scooting so she has a way to get around the house. The walking has been slow progress as Emma still seems to have quite a bit of pain in her hips and does not enjoy the process of bearing weight on her legs. We aren’t sure where this pain is coming from but will continue to ask doctors for their input on the issue. Emma also has developed a rash randomly covering her stomach, chest, neck and face at times. It comes and goes and different times throughout the day and week without much reason so we are praying that it isn’t an allergic reaction to the new chemotherapy regimen.
It has most definitely been a challenging past three months but continue to be lifted up by the generosity of those surrounding us. I can’t express the gratitude for communities like Clarkson, Leigh, Papillion and others for their dedication to support not only our family but also those from around the area that are battling this awful disease.
I want to leave everyone today with a thought. When Kathryn and I were shopping for a new stroller for Emma (the old one didn’t have enough support for Emma and we don’t want a wheelchair) we came across a piece of artwork at a children’s store that said “Together is our Favorite Place to be.” At no point in my life has this ever been so true. My family has spent less time together then any family should ever have to experience the past three months. Make sure to take time to appreciate those that surround you and love you unconditionally, as you never know when it may be taken away.