Category Archives: About

Technical note

Just a note if you’ve subscribed to my blog via email. It’s best if you click on the title of the blog entry at the top of the email to go directly to the blog website.  You can’t view the videos I put in the posts through the email; you can only see the image. And watching the video is half the fun!

If you don’t want to set up an account at wordpress to receive the emails, you can get updates on the Facebook page. Or you can just visit www.bonemarinara.com every day to see if there’s any new news!

Thanks for following along!

 

I’m the Boy in the Bubble!

Because my white blood cell count is so low, I’m prone to infections…so don’t be offended if I don’t shake your hand!

When I left the hospital from my first transfusion, the doctor told me to be very careful of infection; stay inside, don’t venture out to crowded places. Wash your hands, stay away from sick people, etc. I joked, saying, “I’m now the Boy in the Bubble.”

john-travolta-boy-in-bubble
Yo, Mista Kotair! How do I get outta he-ya?

The 1976 movie is based on the life of 2 boys that had severely comprised immune systems. Little did I know that one of the actual boys in the bubble, Ted DeVita, was actually suffering from severe aplastic anemia as well! Do you remember who played the boy in the bubble in that movie? The one and only Vinnie Barbarino!

Even more amusing was to remember the Seinfeld episodes (one of my favorite shows) where George was playing Trivial Pursuit with the Bubble Boy.  Classic! Here’s a clip:

I have a feeling I’ll end up with one of those surgical masks I saw everyone in Japan wearing last month. Hmmmm. Maybe they are on to something. Perhaps there is something to the hypothesis that I contracted a virus in Japan. Wonder if they have a style that looks good on me.

surgical mask

 

How did we get to this point?

My name is Phil Page. I’m a 46 year old father of 4. I have a bone marrow disorder where my blood cells are very low (red cells, white cells, and platelets). It’s a condition known as pancytopenia, and it’s a symptom of Aplastic Anemia or Leukemia. We don’t know which it is yet, or how or why I got it. All I know is that this condition is rare and can be fatal, and it may require a bone marrow transplant. If it’s Aplastic Anemia, the survival rate is 70-80%.

My kids and I. This was taken when I first visited the hospital for my transfusion

When I was in the hospital for the first time, I was told that one of my nephews, Hunter, asked his mom, “What is Bone Marinara?” That became the name for this blog, which I hope will continue when all this is done.

I know that others are going under some times and conditions much worse than mine. I’ve chosen to have a positive attitude and to share my experiences for not only my coping, but for my family and friends to follow my journey. I want this to be a learning experience for my children as well by using humor and education.

I am a nerd. I work and play behind a computer every day, searching for information for my job and myself. I’ll be sharing lots of links to more information, particularly using Wikipedia, and other ‘credible’ sources…but always remember to take what you hear on the Internet with a grain of salt. One our favorite ways to remember this is the State Farm commercial below:

I will be sharing the good and the bad, hopefully providing some education, inspiration and the art of survival with a few smiles along the way. There’s a chance this might all blow over quickly, or it may turn bad quickly. Either way, I’ve decided to chronicle my journey for my family and friends, hopefully beyond this part of my life, to continue sharing my approach to life.