Julians World

Mimi's story about one of her sons Julian...

The word “cancer” is a terrifying word, a death sentence. Imagine hearing it in a doctor’s office, from your doctor’s mouth, referring to a part of your own body. Pretty scary, right? Now, imagine hearing it in a hospital room, referring to your three-year-old son.The words “cancer” and “child” should never have to be associated.After hearing the words, “Your son has a cancerous brain tumor,” I had two options. Either I lost it or I fought it with all I had. At first, I lost it (what mother wouldn’t). I was crushed and I had to get away from my son’s hospital room. I had to be alone. I had to think. I went to the chapel on the second floor of Cook Children’s Hospital, which has become my favorite place to think and pray. I asked God for strength to carry on. When I left the chapel I heard the sound of a piano coming from the atrium of the hospital. I sat on the floor of a balcony and listened to this angel playing just for me, with tears rolling down my face.When I got up, I felt empty and lost. But, somehow, the music had left me with a glimpse of hope. My baby needed for me to hold on to that hope, desperately.A few months before, through my church and a friend’s personal tragedy, I found out about a website where people could keep a journal, reporting on personal health issues or those of their children. Through CarePages, friends and family can have access to daily updates and photos. They even have the opportunity to leave a message. I, then, created Julian’s care page, which we call “Julian’s World”. My family lives in France and Canada. This way, they are right here with us, sharing our journey. Little by little, people heard about Julian’s page and our support system has now grown to over 200 people.I knew people had a lot of questions about Julian’s prognosis, surgery and treatment but they were too afraid to ask. Strangely their strong but quiet demand for information built up my determination to provide them with everything I could. I was not sure then why I felt so strong about it, but now I do. It made them feel like they were part of our journey, feeling my emotions and knowing what “Juju” was going through. Julian touched so many souls and hearts, and even changed so many lives, that only with God’s blessing could this bond have been created. I just need to remember this when times are hard.Julian himself is a huge encouragement to me. If he sees me sad, he says “Don’t worry Mama, it will be ok.” And hope comes back even stronger.My mother in law thought of a creative way to thank everyone for their support. We had wristbands made that said, “Trust God to Beat Cancer” and “Julian’s World.” We gave them out to friends and family, so they could own a little piece of his world and share his story. At that point, someone mentioned that we could sell the wristbands to help with medical bills. A “Julian’s World Fund” network was spreading from here all the way to France, with the help of my family. It is a great feeling to see so many people joining together around my baby.Most days go by pretty well, full of laughter, kisses, and cuddles – never forgetting a little bit of Julian attitude. Some days, though not many, anxiety sets in, but it doesn’t stick around long.And to the ones who wonder how I do it, how I keep on going and stay strong, I would answer, my strength can only come from up above, and from the smile of an angel God sent me. His name is Julian.And remember, NEVER forget to kiss your children goodnight…

For more information on Julian and MiMi, you can visit Julian's site:www.carepage.com- "Juliansworld"Resources:www.reminderband.comwww.cookchildrens.org

Julian, was diagnosed with Medulloblastoma (aggressive cancerous brain tumor) .The tumor , the size of a golfball was totally resected on march 9th 2007. He has gone thru 6 weeks of radiations in april/may and after a 4 week break started chemo.