Erica's CaringBridge Page

Welcome to Erica's CaringBridge Page. It has been created to keep you updated on Erica's ongoing battle with Diamond BlackFan Anemia.

Journal

Saturday, September 9, 2006 6:51 PM CDT

I can’t believe I have been so delinquent in keeping up Erica’s CaringBridge Site. Erica turned 3 on June 5th this year (2006). We had a wonderful BBQ in the back yard. Goodness knows she deserved it. Last year we spent the entire week before her 2nd Birthday in CHEO as she had pneumonia. It was nasty. When she came home we agreed that it was a good idea to cancel the festivities and keep any unnecessary germs out of the house while she recovered. Needless to say, this year we celebrated.

This July we finally made it to both Schneider Children’s Hospital to spend a couple days with Dr.’s Lipton and Vlachos and to Camp Sunshine (with a four days in between with our wonderful friends the Monica’s) :o) We are so blessed to have our paths cross with this wonderful family. I think Erica is planning her Wedding to Cody already – and she is only 3! LOL

As for Erica’s health… she has been doing pretty well over the last year. We have been able to taper her prednisone down to 1 ml every other day. Although her hgb is sitting at just above 100 (10.0 for those of you in the States) it’s better than having to take a higher dose of steroids at this time.

When we visited Schneider’s I thought for sure that we would be discussing transplant due to the fact that Erica’s older sister is a perfect HLA match. I was somewhat relieved to hear that they felt that she was doing so well responding to a low dose of steroids that they wouldn’t even think of discussing it at this point. Now that doesn’t mean it may not become reality some day in the future, but for now we are status quo.

We learned so much during our time in Long Island and in Maine at Camp. The one thing that I am concerned about is puberty for Erica. Apparently it is very common for steroids to stop working, or rather the young female child to stop responding at puberty due to hormones (change of chemistry in her body) around puberty. Whereas a young man going through puberty may have a stronger chance of going into remission because of the increased levels in testosterone.

Other than the odd cold, some dips in hgb due to flu/cold – thank goodness life for Erica has been fairly uneventful. Mind you those dips in her hgb are enough to give her Mommy a small stroke. She likes to keep me on my toes :o)

Paula

Hospital Information:

Children's Hospital of Eastern Ontario

Ottawa, Ontario

Links:

E-mail Author: paulastreet@sympatico.ca

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.