When we left the hospital Saturday night we were told that the oncologist would call us Monday (today) with a plan for the final scan that needed to be done, Brady's surgery to place the central line, and the start of chemo. That is not what happened. A secretary from the oncologist's office called and gave us very vague instructions about being at the hospital Wed, Thurs, Fri, and Monday for different tests. By the time I called to clarify, no one was available to talk with us. So we wait...With waiting comes time, with time comes fear, and with fear I feel my faith slipping. Please be praying in that area.
Brady's days have been okay since coming home. He certainly isn't "our Brady." He is on heavy doses of steroids which cause him to be lethargic and sad. This poor boy...he never could walk, so he relied on crawling for his mobility. He would keep up with Eli and Cara so well and spent his days playing with them and then playing independently for hours. His mobility has been taken away as crawling is painful for him since the surgery. He seems much too weak to even know what he wants right now. So, we are having to carry him everywhere. My heart is breaking as I feel his spirit slipping further away. I miss so much the sounds of him playing with Eli and Cara.
We are currently trying to put together support "teams" to organize groups for the many areas for which we need help. Matt put it best when he said that he is learning to swallow his pride and accept help. We are graciously accepting help on behalf of our children.
Please, please keep praying for all of us. Please don't forget to pray for our whole family, including my mom, Ron and Sandy (Matt's parents), my sister and her family, and my brother and his family.
One more thing: There are SO many people contacting us via this blog, through email, and in other ways. This outpouring of support is so important to us right now as we need constant encouragement to keep going. I wanted to say that I'm finding it difficult to keep up with writing back to everyone and to contact everyone who has reached out. I WANT TO but right now, I just can't. I'm very sorry about that, and promise that in time I will get to it:)