Monday, March 30, 2015

Test Results and Prayers needed!

Dear friends,

Current Status: Please pray for Coltrane.  After receiving his antibodies as part of his immunotherapy, he is in extreme pain and uncomfortable.  Our team is trying their best to keep up on his pain dosage and try to get him calm.  I don't think I've seen him in this much pain ever.  It breaks our heart to see our son in this condition.  Good thing it will only last 10 hours, give him a break, and start again the next day.  

Scan Update:  We heard from our Oncologist that the CT scans looked fine, praise God.  The MIGB scan did show a spot around his femur that needs to be investigated out of obligation.  The doctor says it's not likely cancer due to the results of the rest of the scans, but they have an X-ray scheduled in the morning.  He said it could even be a drop of urine that showed up on the scan.  Please pray it is NOTHING.  We are desperate for your prayers.  We are struggling with the stress.  Please pray for Sonja and I to remain faithful and trusting in the Lord.  Pray for our family who is going through so much right now.  We love you guys.  I didn't really feel like going to church yesterday, but Sonja thought it would be good.  I am SO glad we went.  It was very uplifting and encouraging to worship and learn with other believers.  Thank you all.  It was good to see so many friends, and get prayed for as well.  We will keep you informed.  

Love,
Justin,
Sonja,
Jackson,
and Coltrane the hardy.

Saturday, March 28, 2015

Celebrating Coltrane Give-A-Thon


Thank you to everyone who donated and helped us reach our goal. It is so inspiring to see everyone give to help this amazing family. So many times we hear of all the bad stuff going on, but today we can share this accomplishment together. We can know that even though we can’t change the world overnight, we can make the difference in individual lives of our friends and family. Thank you and I am proud to call you my friends.  Our total raised was $3,485 by 130 donors.

I have uploaded the videos and slideshow in case you were unable to see it, missed it, or would like to watch it again. Thank you to Traci Rutledge and Mark Jackson for putting these together. Also a thank you to Adam Woods for donating a hand-drawn portrait. (https://www.facebook.com/adamwoodsportraits?fref=nf&pnref=story)


Here are the videos: The password is Coltrane

Video 1: The Uncertainty and Unknown

Video 3: A glimmer of Hope
https://vimeo.com/122047772

Video 4: Celebrating the Future
https://vimeo.com/122043524


To see the slideshow of Coltrane's journey please click the link below!

http://youtu.be/sY2N9PfDwr4



Wednesday, March 25, 2015

Big Test Results Tomorrow!

Hello,

Please pray for our family.  We will be heading to OKC tomorrow for a CT and an MIBG scan.  These will determine if Coltrane is NED (No Evidence of Disease).  These are very important scans as you can imagine.  We also learned that the upcoming immunotherapy will be very difficult and time consuming.  It's over the course of six months.  Please pray for:

Peace for our family,
Perfect scans with NO cancer cells in Coltrane's body
Coltrane to gain weight
Coltrane to not have any negative side effects from Immunotherapy (nausea, allergic reactions, fever, and pain)
Us to have a very easy time with having to get drugs that are very restricted and are on a time schedule (can't miss days and such).  Pharmacies and insurance companies can be problematic sometimes.
God to help us with this whole experience.  It's been taking a toll on all of us.  It's hard, but God is greater.  We are trying to trust in Him and not be afraid.  We will rely on His strength and not ours, what little we have.  

Thank you all for your support and love!

Love,
Justin,
Sonja,
Jackson,
and Coltrane the Brave

P.S. Don't forget we will be Celebrating Coltrane on Friday for our Give-A-Thon.

Thursday, March 19, 2015

Ring The Bell!

Dear loved ones,

This has definitely been the most physically taxing parts of the journey that we've been traveling on.  We get up super early and drive about an hour and a half to Tulsa.  Coltrane gets pumped full of propofol (the doctors call it the "MIchael Jackson Drug".  He falls asleep immediately and goes completely limp.  He rests (although Coltrane is already building up a resistance to it) and receives his 15 minute radiation treatment.  We have to wait for him to wake up to start the 20 minute countdown for us to be able to go home (standard anesthesia protocol).  We drive home and get all of our other stuff done.  We go to sleep and wake up at midnight every night to stop his G-Tube formula feeds.  We go back to sleep and do it all over again.  This has been going on for the last two weeks.  We are exhausted.  One more day of this.  Tomorrow our sweet boy gets to ring the "Done with Radiation" bell at the hospital.  The Smith family is so ready to be done with this part.  Fortunately Jack gets to play at his Mimi's or Nana's most days.  

If you see me (Justin) driving around crying or working while crying, or walking to my home from getting the mail while crying, please don't think I'm crazy.  Well, I might be a little bit.  I will most likely be crying tears of awe and wonder.  Tears that cannot explain how much we appreciate everything that God and so many people are doing for us.  They are tears of astonishment.  In the beginning I was saying to God, "Why, God?!  I don't understand.", in the hope of God revealing to me what His ultimate plan was, or to gain His favor in Coltrane's healing.  It was very "Coltrane" based.  This I find is good and normal for it to be this way.  But if my tears could cry out themselves, they would say the same thing, but with different meaning.  "Why, God?!  I don't understand.", in the hope that God would tell me why he's being so good to us.  Why is God blessing us in so many ways.  Why are people giving to us the way they are?  Why is God showing His complete love to us?  Why is God leading us so well during this hard time?  I don't think I've ever been so clear minded with my life than now.  God changed the "all about Coltrane" to the "all about God".  It really is about Him.  It's not about how I'm feeling, how my family is doing, or even how Coltrane is.  It's all about God.  He's the one we can rely on.  He's the one we need to focus on.  He's the one that deserves our best.  He deserves our worship.  He is the being that has this grandiose plan that is so masterful, I cannot comprehend it's depth.  Lives are being touched through my son's story.  God is working in those who are caring for us.  God is whispering to the people who are watching us.  Everything points to God.  And I am beside myself most days, in awe of how He loves us.  God really is good and He really cares for us.  We are so grateful to get to know Him so well during this time.  God is already turning things from evil and sorrow to good.  Pure goodness.  Like the perfect cookie.  The perfect caramelized brownie.  The five tiered, perfectly layered chocolate cake.  The perfect filling.  God is truly the filling.  He fills that void in our lives with exactly what we need and what is best, for His plans are perfect.  

We are at the end of radiation therapy, thank God.  Coltrane has gotten sick a few times and his numbers are low, but other than that, he really is doing great.  We have some scans coming up next week.  They will hopefully show great results to the doctors.  

Please pray for:
Coltrane to have No Evidence of Disease (NED) 
The Smith family to have more faith and trust in God and His plans for us
Our bodies to be rejuvenated 
Wisdom in decisions we have to make
The doctors to have God's wisdom
For the upcoming Immunotherapy in OKC to go extremely well and that Coltrane will not have negative side effects.

Thank you all so much, we love you.

Justin,
Sonja,
Jackson,
and Coltrane the Old Soul

Sunday, March 15, 2015

Celebrate Coltrane Give-A-Thon

Help us celebrate Coltrane Smith and aid in his recovery! Our goal is for 150 people to donate at least $20. Why this goal? 150 people donating $20 will equal $3,000 which is the amount of their 2015 insurance deductible. Please consider helping this amazing little boy and his family!

The Give-A-Thon will start at 8:00 AM on Friday, March 27 and will end at 12:00 PM (noon) on Saturday, March 28. Here is the Facebook link to the event. 
https://www.facebook.com/events/1538500909750641/

So many of you have opened your hearts to this family and supported them during this journey. We are celebrating Coltrane for everything he has been through and the strength he continues to show each day. We are celebrating Justin and Sonja for their tremendous faith and honesty during this journey. We are celebrating all the lives this family has touched and will continue to touch. Please join us for this give-a-thon and celebrate Coltrane's journey and future ahead.

Thank you in advance for any help you can provide for the Smith family! May God richly bless you.