First and most importantly, our next MRI date is Wednesday, November 30, 2011. As you all know I HATE Wednesday scans because getting results right after is really close to impossible because our doctor is in meetings all day. She said she is really going to try to see us in between but that she will at the least give us a call no matter what. Ughhhh .....Please pray for NED ( no evidence of disease)

Seems as posting lately isn't as easy taking a whole month and trying to verbalize and cram it all in a short enough time span that you will still want to read about it. I think I will go back to updating biweekly so that I don't miss important things and email you once a month a notification.

As you all know that follow and read My Nickybear updates - I find ways to advocate, because if I personally can't fight cancer, then I find ways to do it for Nicky and all the children. I want to thank so many of you for signing the petition. On October 21, 2011 not only did the petition meet its goal it surpassed it and people are still signing it! God Bless each of you for signing, re-posting and emailing it out, it truly took an army of people to help and the numbers surpasses the goal! THANK YOU LORD!

On October 20, 2011 my dear friend / sister, Nicole welcomed Baby Jackson Carter B. into the world and I can't be happier for her and her family. I pray for nothing but love, laughter and health to you sweet Jackson! She will always remain a mother of three, two whom will walk and one that soars. We miss you Baby Wade!

Nicky is growing and is being an active 2 yr old and is into everything! He eats like a little piggy and it reminds me of how blessed we are that he can actually eat! a year ago we had switched to baby foods and bolus tube feedings. No more machined feeds and hours of tubes attached to him - finally a little freedom! I think about Jacksonville a lot lately. It was my 2 months alone with Nicky and we watched Toy Story 2 a million times. We cuddled and always slept together, those days will always be precious to me and walking the dock on the St. John's River. Now I get to experience fall here home and I love this time of year. Nicky loves the park and to take him away from a playground is torture!

We are enjoying him and all his spunky attitude. He has become a bit of a Daddies boy lately - Nick can't leave a room without Nicky throwing a fit. I guess he's bored with me since I am with him 24/7 and when he catches Daddy running to another room he runs screaming for him. One of the most stressful things we are dealing with since Nick mainly works from his home office.

It was a rough month in our circle of friends, Lyssie R. gained her wings and within days Drake K. earned his. We were in treatment in Jacksonville shortly with Drake and he would come walking in with his cowboy boots.... both these children and their families need prayers. On a different note, Little Anna Rose whom I have followed since the PICU in Buffalo, NY had a bad scan and there was progression .. some children just capture a part of me and Little Anna has done that, so please pray for her and her family. And since cancer does not discriminate in any way, I ask that you send prayers to Heaven for Flo whom is battling ovarian cancer and Aline also. Please pray for Megan P. in scans, Colin T. and Luca P. both scanning next week.

Nick and I had a chance to go out with friends to ECC and it was fun to be part of the "normal" world, though out of the corner of our eyes at the table next to us was a child, maybe 9 or 10 and he was there with his family - the hallmark signatures of a child that has been treated or in treatment for cancer. Faintly I could see a light scar on his head as I approached them, and he was bald sitting between two siblings and his parents. No stopping me when I see a child, I sprinted over with a Nickybear card in hand and said I have to ask, since my son is local and we just finished a year of treatment at St Jude ... enough said .... he was a boy diagnosed at age 3 PNET tumor and it was removed, they were treated at U of M and he is now 9 years old and cancer free. His hair just never grew back from radiation - but it didn't matter - he pulled off bald beautifully. It shocks me, was I blind before - walking around oblivious to the hallmark signs of pediatric cancer? The normal world goggles that most people wear ... mine were ripped off my face scarring me permanently on May 22, 2010.

I hope that whomever reads this takes those goggles off and sees life and all its beauty and pain and understands what is truly important.

I took this photo while Nicky was sleeping on Oct. 22, 2011 this date marks that he is 25 months old and while I starred at him sleeping and thank God for every minute with him ... I couldn't help but cry looking at the I love St Jude t-shirt he wears. Boy I wish it was a t-shirt we bought in support, but because my little man was a patient. It made me realize that life changes in an instant and nothing is ever the same and that I am suppose to tell all my readers to be grateful for what you have because it can change in a blink of an eye. Pray for CURES! Thank you for always supporting us, loving us, praying for us and reading NickyBears journey ..... God Bless you all .... xoxox

Support

Ependymoma - Ependyparents

Go to Facebook Ependyparents and Join