Anthony was happy to be here! He ran from hallway to hallway. Room to room. He wanted to play and talk constantly. His energy is exactly what I have been craving. Kayla too! Even if at times she seems annoyed (here at private in our apartment), she is happy to show him off and have him have her back everywhere else. He doesn't get any of this. He had fun making snow flakes w/ child life. He cracks everyone up as we go along....... both of my kids do. Why is that? They just say things.........
We had a hard time avoiding smells today. Kayla was sensitive as usual. Hopefully this new medication mixed with zofran will help. She was THRILLED to have OT today (occupational therapy) OT= play time! She finished her fish. Thank you Ashley for looking forward to Kayla's visits as much as she looks forward to seeing you!
A new day starts tomorrow as we have reached the 3/5 point of this side of the radiation. No new symptoms should arise. We hope her energy will climb (appetite too!) with her brother here. We weighed them both after her appointment today with Dr. Pai. Anthony weighs 3 lbs. more than Kayla. He is 3 years and 3 months younger. They are the same shoe size! (size 1... great starting off point)
Ready. Set. Go!
We pray her weight continues to go up. We pray for this because it is HUGE when it comes to the next treatment round. Kids with more weight on them tend to do better. So, let's get those pounds on!
For the rest of us... well....... we have time to get it off after. (hopefully)
Hug each other tight. Love with all your hearts. It's a constant reminder every single day how your world can just be turned upside down. You never ever know.. I never thought it would be me. We never thought it would be Kayla! We were healthy. Did everything right. Children should not have to go through this. They should not skip one day of being a kid. They should not miss one day of school. They should not miss one practice. They should never have more then the flu. This needs to end. Our kids should never live their lives on Zofran. They shouldn't have their skin and their insides burned off with radiation. We shouldn't have to slather their skin with special creams to heal them from it. We should not have to fear a second a risk of a second cancer from a "cure" that they would die from without receiving. It's just not fair. It's not fair. It's not fair................ today was a just like all days. It was hard. We saw more and heard more then any parent should ever see or hear in a day. It was a hard day. Some days we can be tough. Some days we stand up and still smile at the end of it all. Some days we just cry a lot. Some days we need hugs on tap. I look forward to our time at home. I worry because of this blog that I can't hide and pretend this all isn't happening in those short weeks home like I will need to. I worry because I need it mentally. The road to come scares the crap out of us. It isn't pretty. This "break" is a chance for us to check out and believe we live in a normal house. A place that doesn't have a front desk you have to walk by every time you want to come "home". A place that doesn't judge you. A place that you don't constantly walk into an elevator or down a hall and are reminded of why you are here................. I want to be home. I want this to all go away. It's easy to just stop reading my words. To just turn away, to not read this blog. But this is my reality. I can't turn away. Who knew. Who could have told me that cancer does not discriminate and I would have thought for a second it would have been Kayla?
Ok. It's been a hard day. A good day too... A blessing and a curse as we call it around here. This is my diary.