Updates
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First things first … MRI was at 7:30am and table time 8:15am …. He just woke up from reecovery and our AMAZING Doctor, Dr. Wright did his LP so she was able to take time to look at his scans – NED means no evidence of disease … CLEAR …. We feel so blessed to be able to fly home tonight …. So another 3 months of life …. Living and Praying that each scan continues to remain cancer free.
I will give a full update later about the whole trip – but in the meantime please pray for a new little one Willa Rose – its her first day here and the same diagnoses as our Nickybear. Please also pray for our friends scan little David. P. and Aaron Bell …. GOD BLESS YOU ALL --- we are so grateful for the army of prayer warriors out there loving our boy!
Dear Lord,
Humbled by you in so many ways …. Thank you for this GIFT …. Thank you for today!
My Great Grandmother and Nickys Grandma had breast cancer - someone asked why I never walked for them, but for this I would .....there is something extremely wrong with a baby, a child having a life threatening illness. It is simply indescribable. It seems like an injustice that out weighs any adult because they simply have not had a chance. People say bald head is a badge of honor, it is not for a baby or a child that had no choice and didn't choose to be a hero and deserved a normal life ... it is simply wrong! 
So it's been a true month since I emailed an update though there is one below this that I wanted to announce but not bother everyone. What a month ... 2 months away from another Jude visit, stay and wait .... I have learned so much this month. While today I celebrate my son's 21 months old .... we lost another baby on our protocol. I know I asked for prayers for Ana Sofia .... she is in God's arms today.....I am thankful I got to see her a month ago in Memphis .... I was able to touch her leg and say property of you Lord.....I hugged her Momma and I walked away just defeated from her room .... I just can't comprehend it .... I remember being in that very same room for an inpatient stay .... it was so hard to walk away and I came back the next day to say goodbye.
Our summer was filled with emotions ... seeing Nicholas swim for the first time was a blessing and he has fallening in love with water now. His laugh is such a JOY to us and he loves torturing our dog Haley by chasing her everywhere. Can't say the dog likes it, but he sure does! He is spoiled and loved and eats pretty much anything you give him now. He is becoming a true 2 yr old and we are so grateful to God that He allows him to thrive and be healthy. He loves the bubble machine Daddy bought and will chase it everywhere. He still loves Toy Story and its a crack up that he organizes his toys in groups accordingly. One day he threw his pacifer at Nick and that was that, he never wanted it again. Odd,yes ... but great too that he no longer wants it. Christian has had a fun summer and got to see his friends a lot and spent time on the boat and lake with Nick. Skateboarding is his thing right now. The top pic was a trip we took to Bay Harbor and it was our first trip since his diagnoses. It was a good break from the world.
I will leave you with this haunting thought today .... while I debated what I was willing to share in this entry .... I spoke to a Mother today that lost her son just weeks ago..... her words will remain in my heart to remind me every day that this fight matters and that it MUST be won. She said, "You want to go back and somehow FIX this, but its PERMANENT and NOTHING can be changed, there is just this HUGE void that nothing can fill, the fight is over.... the HOPE ... is gone .... the BATTLE is over." These words are true and HORRIBLE .... I just listened with tears rolling down my eyes .... the only difference WE can make is by funding research, creating awareness ..... and PRAYING OUR HEARTS OUT FOR CURES ....I hope and pray that you do all you can to help fund childhood cancer research and create awarness.
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 ....