Thursday, February 24, 2011

New Children's Hospital at Johns Hopkins

This photo was taken from the Mix106.5 morning crew Facebook page. I wish I could've gotten over to Hopkins to see them but Haven didn't have any appointments this week. If you live in MD and have been following along the radio station has been doing a 3 day radiothon at the hospital. They have spent lots of time with the kids in the Children's section and shared lots of stories with everyone. I started listening to this station when we moved her in 2007 and my first radiothon was in 2008 - only then I didn't pay attention because we were living at Hopkins at the time. Haven had just gone through a 14 hour surgery and was about to start a multiple type chemotherapy regiment for her cancer. Then we spent the next 2 full years living at Hopkins testing different chemos for ROHHAD until we finally figured out what was working.

I love the stories of the other children and it is true - you do become a family at Hopkins....not just a patient with a fast food number! And then sometimes when you've lived there as much as we have it becomes the norm and what used to be the norm isn't as comfortable anymore. A huge example was when we had to rush Haven in to the ER about two weeks ago. We realized that sitting there at her bedside while she was getting wired up and port accessed that we were feeling at home. As you can imagine - Haven's Oncologist is not happy that we feel this way and that's what he has worked so hard to get away from. He wants all of us out of the patient mind set....but after this long it's become our home.

We will probably forever live in MD and this is because we just can't imagine leaving Hopkins or Haven's doctors. We trust them with our daughter's life and you can't give anyone more trust than that.


Above is the concept of the new Children's Hospital at Johns Hopkins! You can check out the rest at the Johns Hopkins web site by clicking the link and watching the video. I remember when we first started coming to Hopkins it was just a pile of metal.....we can't wait to see the new building and share it with all of you!

1 comment:

  1. Hi Haven
    My name is Jenna and I came across your site. I was born with a rare life threatening disease. U are an inspiration and a brave courageous fighter and a hero. U will be in my thoughts and prayers. My site: