Here's our NickyBear .... I want to thank our photographer Sabreena for being so patient with him! I told her we have so much to catch up on with memories .... she is very talented and if you like her work she comes to you - here is her info:

On another note, yesterday Nicky is now 29 months old. I celebrate every milestone and everyday with him! He is becoming easier around people socially and that is a blessing. His tummy is healing great from surgery and the scar is already fading away. This time of year fills me with such mixed emotions. I am so very grateful for my family, for another clean scan and yet there is a part of me, the vaunerable mother in me that knows the pain of watching your child have to walk through the mind field of cancer and so, so many are missed this time of year especially is hard on these families.

It is hard to place into words the pain my heart I carry for these families, especially now. I had a friend email me this week and he said that this had changed me forever. That comment could not be more accurate. It has changed the compassion I have the love I have for complete strangers, the JOY I find in being able to be there when I am needed. I recall a quote from Spiderman, "With great power comes great responsibility."  I like to change those words and say with "With great love and compassion comes great responsibility."  It is in this whole process that I have found God deeper than I ever thought possible, it is with that relationship that I have learned to love deeper than I ever knew how. I recall last Christmas Eve, ready to walk out the door to go to Nick's parents house and my cell rang, and I the other end was Ryken's Momma. That call was surreal, she told me he had scanned because they thought he had the flu and the doctors gave him a week to live. That entire night I had such a heavy heart, such a empty feeling of helplessness and I couldn't change the pain she had in her voice. There seems such an unfairness that is hard to accept with this process of life and why one so little and precious was going home too soon. We miss you Ryken B. your little fist pumps and smile, what a precious child he was. Kendal is also on my heart, we wanted her to beat Leukemia sooo badly ... she fought so hard! Pray for these families ....

This morning a little one we have been following peacefully passed away at 6:22am and while I never knew this princess, Bella Bowman was truly beautiful and again .... I ask for prayers for her family Her story can be found here: , she too was not only part of our St Jude family, but our ependyparents group also and she and Nicky shared the same diagnoses. I recall so many that passed away Jonathan M., I quoted his Momma last years letter, so profound her letter explaining how would she tell his siblings that we wasn't going to wake up to open presents ... There are so many memories I have of soooo many children, many I did not even know - but as a community whether it be St Jude, shared diagnosed or just cancer alone .... there is a silent bond that no words would be adequate enough to to describe that catastophic toll this new way of life places on you.

This Christmas I am reminded of a Christmas card I send out in 2003 and inside is said, Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store? What if Christmas, perhaps, means a little bit more? This Christmas be so grateful for what you have, you can not buy what is most priceless .... FAMILY.

Another Mother (Ivee the Blessed) wrote this, Many of you know why we call this G.I.F.T. week. It makes sense, being that it's Christmas time, a time for giving and receiving. BUT, I didn't call the day of remembrance that for just the fun of the season. No! Not at all. G.I.F.T., of course an acrostic, but it holds so many meanings for us.

I am incorporating this G.I.F.T. into our lives with Nicky's story, it wasn't what some call "mother's intuition" That the night I was so uneasy with Nicky's body feeling limp in my arms On May 22,2010, because I prayed and God told me - get him to ER .... there is nothing to explain, God saved Nickys life, God gave us a second chance,  that through the hands of Dr. Holly Gilmer that He administered a clean surgery .... is it a G.I.F.T. that St Jude had a curative protocol for our son and as you can see from these photos, WE ARE SOOOOOO BLESSED! We take nothing for granted.

G.I.F.T. is not about me. It is all about my Lord, my Savior, and Nicky's Healer.
...............Faithful and

May you have a Merry Christmas, please always pray for CURES ... pray that God shows mercy to Nicky and that he remains cancer free. Next MRI Feb 23.2012 .... and pray for the endless list of families with loved ones they miss dearly during this holiday season.



Ependymoma - Ependyparents

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