Dexter Lawrence Authentic Jersey  May 29 - June 11,2011

It seems hard to believe we had a scan just 3 weeks ago. You all know me and every word in those reports replays in my head from the priminary reports to the final scan reports. I try to not over read their vague answers to certian things they deem notable. So upon leaving St Jude, Nick and I agreed if Nicholas did not lose weight and we stopped his bolus feeds through his Mickey Button (g-tube) that we would remove it. So Friday morning, June 10 at 1am we removed it. It took less than 5 minutes for me to remove it. He isn't too sure about having the bandage on him as you can see in the photo, but its been a year exactly since the tube was placed. Brings tears to my face these small victories .... a whole year exactly .... when I pulled it I didn't even realize the date was the same date we were inpatient over night at St Jude from having his line and g-tube placed. I can't tell you how nice it is to see him without having to wear a onesie to cover it from his grip! That he will be able to go swimming for the first time in his whole life this summer .... any cancer mom that has had to walk the path of their child losing their swallow can relate to the fact of how incredible it is to watch him eat! I cried throwing away the rest of the feed bags and packed up the food pumps to ship back to Jude .... so many times I never knew if we would reach this goal ... but we have by the grace of God ..... I have so much more to share with you about being back home without chemo schedules ruling our lives .... I will share more when I have time .... but for now I needed to share this blessing with you all ....

I also am asking you to keep praying for Baby Sofia (she is in the video I created below) .... shes back inpatient again at St Jude and shes in so much pain, please keep praying for CURES ....there is NOTHING more crippling to me than the word cancer .... a word that is vicious and unforgiving .... a word that destroys HOPE and futures ... a word I pray will have a CURE ......

Dear Lord,

I am so grateful that you have allowed our boy to be able to completely eat on his own without needing anything anymore.  HIs Port is the only thing that remains and we know that it must stay until he is done with that also... in your perfect timing ..... this year has been a struggle Father .... I have seen so many babies I love die ..... please surround those families and give them great strength .... Odies Momma just lost her son ... please be with her and please allow our boy to remain cancer free..... touch all the children at St Jude .... you are the great healer Lord.... please watch over them all ...

Support

Ependymoma - EpendyparentsThe International Largest Group for Support

Go to Facebook Ependyparents and Join

Visitors