I have been following Cora’s family blog since her neuroblastoma (cancer) diagnosis a two short weeks ago. When I read their blog tonight and found out that she had passed, I just lost it. I remember seeing Cora’s pictures from the past couple of months, and there are so many of the same pictures that I […]
[Continue reading...]Weekend Roundup
8 Feb by
I finally told one of my neighbor friends the truth about what is going on. I didn’t candy coat it, and I hated the fact I broke down for a couple of minutes. Of course, it was right when Boy Boy E walked up, and I didn’t see him. She was so sweet, and she […]
[Continue reading...]Pediatrician Visit
6 Feb by
We met with Dr. B. this morning for our monthly followup. I emailed him an update last night so he could have it printed out in his records and so I wouldn’t have to talk about all the details again. Few issues: 1. Abnormal eye movements. He did notice some abnormal eye movements from Hannah, […]
[Continue reading...]Having a rough night…
6 Feb by
I seem to be using the word “sucks” a lot today. Because this situation just sucks. I keep looking at Hannah, and I realize that I may never get the chance to get to know who she would have become. It just gets me more upset. As a mom, you think of your child’s future. […]
[Continue reading...]Between Gaucher’s Disease Type 2 and Type 3
5 Feb by
We met with Dr E., Hannah’s new genetics doctor today. I really liked her from the standpoint she seemed to know what she was talking about, she was upfront, and she didn’t sugar coat anything. However, based on what we told her and her examination today, she believes that Hannah likely has somewhere on the […]
[Continue reading...]Cerezyme Side Effects
4 Feb by
I’m started to get a bit freaked out about Hannah’s first cerezyme treatment on Monday. We are told to be there at 10 AM and to plan to spend 3 to 4 hours there. We know that it is an IV infusion, and we know that it is being done at the hospital’s infusion center […]
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