Not your usual B&B Blog post

**Update on Emily, Saturday, May 11th, 2013: Emily’s surgery went very well, and she was out of the OR in less time than anticipated. The surgeon was able to remove the tumor from her spine, and also removed a newly found tumor closer to her neck while in there. She is in a fair amount of discomfort (or should I be honest and say “pain” – eh Em?) as was to be expected. She’ll be in hospital for a week before returning home for six weeks of limited activity, then a three month recovery process. Thank you to all for your prayers and/or positive thoughts! Her whole extended family appreciates it!

It turns out that May is an “awareness” month for many different causes. We’ve recently been having conversations with our kids about how we choose the charities we support. We have causes we support because of family members or friends who been affected by different illnesses: The Canadian Cancer Society, The Nova Scotia Heart & Stroke Foundation, The Canadian Diabetes Association, the IWK Heath Centre Founation, and the Colchester Hospital Foundation.

May is Anaphylaxis Awareness month which we are obviously passionate about, Lupis awareness month, and Duchenne Muscular Distrophy awareness month. It is also an awareness month for something you may not have heard of: Neurofibromatosis. It’s a genetic condition with three subtypes, NF1, NF2, and Schwannomatosis. All three types of NF are genetic disorders involving the growth of tumors along the nerves.

This is the face of Neurofibromatosis – the Schwannomatosis variety – our beautiful niece, Emily: (Well, she’s married to our nephew… semantics.)

The happy couple at their wedding in 2007.

The happy couple at their wedding in 2007.

This is a new diagnosis for Emily. Just before Christmas she discovered a small lump in her back which grew rapidly. She has had two surgeries to remove tumors since then: one in her back, and one in her pelvis. Today, she will undergo a third surgery which is the most dangerous and invasive surgery so far; she has a tumor on her spine. I have asked (and been granted) her permission to share her story to help her raise awareness.

Today, she will have a spinal laminectomy. They’ll be cutting through six layers of muscle, moving ribs and blood vessels, and removing a section of her spine to get the tumor out. Without getting into great detail, the risks of leaving the tumor in far outweigh the significant risks of the surgery. She has a long road of recovery ahead (at least three months), especially as the mom of two very special preschool boys.

The thing is, with this condition, the tumors will continually grow and she is facing a lifetime of surgeries.

As a result of her new diagnosis (and tremor caused by the tumor), Emily has had to leave her job as a server at their local up-scale diner. Mike & Emily live in a house that they built  “off the grid”, and she has recently created a new line of all-natural skin care lotions and creams. Her business is called “Simply Gorgeous” and is aptly named! (She sent me some samples.)

If you would like to follow Emily’s journey with Schwannomatosis, recovery from today’s surgery, and growth of her new business, she has given me permission to share the link to her blog: Swimminhill. She’ll be in hospital for at least a week, so updates may take awhile.

I realize this isn’t the normal bed & breakfast kind of blog post, but I thought it was important to help Emily in her quest to raise awareness, and hopefully eventually – a cure. For Emily, and for her family.

Happy Mama and her boys, the day before surgery.

Happy Mama and her boys, the day before surgery.

7 comments on “Not your usual B&B Blog post

  1. ❤ thank you for writing this

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  2. Bob Lane says:

    i so hope they find a cure for the medical problem that has been bestowed upon Emily, and her young Husband and two lovely young boys, as she is a tower of strength, she will beat this problem, our prayers go out to all, xoxo

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  3. faridahrose says:

    I have neurofibromatosis, and I just decided to start a daily blog of what I’m going thorough, I hate to say, but I must admit I’m glad that someone totally not only understand but can relate and KNOW what it feels like, forget the pain (not really) I’m tired of the stares and questions, so thank you for posing about it.

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    • Thank you for your comment and for reaching out. I’m sorry to hear about your diagnosis. I do hope that you will reach out and connect with Emily. Support and understanding make all the difference! We’re thinking of you!

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  4. […] some food and went out to Mike & Emily’s to help with the boys and make them some supper. (For those who are new here, our niece Emily just had major surgery to remove  tumors from her spin… It turned out that Emily wasn’t having a very good day, and was in the city having a […]

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