Words from a mom whose child has Ependymoma

My last few blogs have been about brain cancer awareness -specifically Ependymoma --Like most of us the word cancer scares us -when I first met Carol I couldn't even say cancer and I was afraid to really ask questions. The whole concept of being a mother of a child fighting that awful illness just pushed me way out of my comfort zone --- as I got to know Carol we talked about their son's illness. The big C word still scares me and I often still feel powerless in what to say. But I have turned that powerless feeling into something constructive. Her and I discussed my crocheting items and making bracelets to help fund raise for the awareness of Ependymoma --- I was so touched and honored that I was asked to be part of their families crusade in helping Jeremy in his cancer fight .It has become a passion for me to help raise awareness and be a support to not only my friend but in hopes to reach out and help others raise awareness in their causes.
Carol is an amazing woman with such strength I admire her and her dedication to her family.

I asked Carol to put together a bit about what they have gone through since Jeremy's diagnosis. The following is what she had to say.

In 2012 our then 9 year son was brought to the emergency room for lethargy and vomiting. One hour later we were giving life altering news. Jeremy had mass on the brain that was about the size of a plum and wrapped around his brain stem. Two days later on Christmas Eve he had a 9+ hour brain surgery to remove this malignant tumor. Jeremy was diagnosed with a rare form of cancer called ependymoma. His 2nd surgery was in January 2013 followed by 2 months of daily radiation. Jeremy came through with flying colors, and he was tumor and cancer free for a little over a year. In July of 2014, at a routine scan a lesion was discovered and he underwent a very risky third brain surgery. Much to our delight they thought it was nothing but a cyst. In late October that lesion more than doubled in size and Jeremy underwent his fourth and 5th surgeries. This time the tumor had moved to a new location in the brain and is considered to be metastatic. There is no cure for ependymoma and we know very little about it other than it occurs in both adult and pediatric patients and only in the Central Nervous system. Unfortunately this was not good news and Jeremy's prognosis is fair at best. His mortality rate is roughly 20%. This is heartbreaking and devastating, but our superhero is no statistic. We are in the fight of our lives, and Jeremy is in a fight for his life. Though he battles daily with aches and pains and the frustrations of some damage to key areas of the brain, he still has bright beautiful smile. He really is a superhero and our bright shining star. Help us in our Fight to epENDymoma! Grey really does matter. Thanks Carol Kohlberg.




Please join in our fight Here are  our Grey Matters crocheted hats- They are selling for $9.50 and portions go to Jeremy and help with costs this battle .

Please contact me if you would like to order one