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.

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

https://vimeo.com/122017793

Video 2: The Heartbreak
https://vimeo.com/122023156

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

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.

https://www.facebook.com/events/1538500909750641/

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

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.

Exciting News!!!

Hello family,

We are so excited to tell you the news we received from the doctors.  A couple of weeks ago we noticed a little bone-like pointy thing poking out from Coltrane's stomach area.  Obviously we were concerned.  We asked one of the Oncologists who said it was an area of concern and that we will have scans set up for checking it out.  We took him back a week later and asked our regular Oncologist.  He looked at it and immediately said, "Oh, that's just a stitch."  I couldn't believe that a stitch could be made of such hard material and be so taut, but it was.  It really is as hard as bone!  In other great news, Dr. Mohammed (our main Oncologist) said that the chances of Coltrane's skull being deformed from the radiation therapy was "highly unlikely" due to how low the level of radiation will be.  Praise God Almighty!  We are so relieved to hear this.  To the moon, seriously.  Sonja and I are very impressed with the radiation department in Tulsa.  They are very professional and so friendly.  They made it seem like we were their highest priority and were of great help to us and our concerns.  After multiple meetings with like five different people in one morning, we finally got it through to everyone that we DIDN"T WANT TO INTUBATE.  Obviously, if it was an emergency we could allow it, but we made it very clear how we felt and what the God-send of an ENT (Ear, Nose, and Throat) doctor said about intubating Coltrane, and the trauma he went through last time.  Coltrane had no trouble with the LMA style of breathing support during his time "out", when Coltrane got his mask fitted and his free (not so free) tattoos on his body.  They are about the size of a small freckle.  So it seems that they will most likely be able to do that every time.  Coltrane will have the radiation every day for twelve days (minus a weekend).  

Please pray for:

Coltrane to not be sick during the treatment (mostly concerned with nausea)

Sonja and I to find something new and exciting during every drive to Tulsa we make (every day, man)

Sonja and I to deal with Coltrane being put to sleep every day (it's actually fairly traumatic to see your son wiggling all around, causing a ruckus, and then going limp on a dime in your wife's arms)

Coltrane to not develop night terrors due to the amount of times he will be put under in a short amount of time.

For ZERO negative affects of the radiation treatment.

We praise God for:

Coltrane gaining weight

Our family being together

Coltrane being so darn strong and brave

The support we are receiving from our family, our friends, and the great and loving body of Christ

The strength we are receiving from the Lord

My flexible job

Our warm home that welcomes us to blissful rest and relaxation (mostly, Coltrane is two after all.  And Jackson has definitely got his dramatic side from his daddy's knack for acting).  Hee Hee.

We love you all so much and thank you for your prayers and thoughts!!

Love,

Justin

Sonja

Jackson

and Coltrane the popcorn lovin' madman

Coltrane update

Hello friends and family,

The Smith family is doing great!  We love being back in town and in our home.  We are so glad to be on the other side of the transplant.  Right now, we are seeing our Oncologist once per week for blood work and general check ups.  We are also in the process of setting up appointments with the Radiologist for radiation therapy.  We had a consultation with him last week.  He told us that for Neuroblastoma, they will give a "ridiculously low" amount of radiation over the course of twelve treatments.  Because of Coltrane's age, they will have to sedate him every time, which will be five days a week for two and a half weeks.  They will radiate Coltrane's abdominal area (where the tumor first originated) and also it was recommended that he have his temple area radiated as well (he has a very small, almost indeterminable bump on his head).  There are multiple concerns that we have from this news.  There is a possibility that Coltrane's height might be affected and part of his skull could be deformed.  Obviously it wouldn't be preferable for these side effects to happen.  The risk is too great for us to not have this done.  The other issue with radiation is when they have to put him to sleep every time.  The therapy is very precise and he must be super still.  We have to meet with the anesthesiologist about whether he will be intubated or be using an LMA.  The LMA would be the best because it only rests on top of the trachea instead of inside of it, which caused some major issues the last time he was intubated during surgery.  

Good news!  We will be able to go to church today!  We got cleared today.  His numbers are great, and his new immune system is doing it's job!  However, we will have to be very limited on the amount of contact we have with others, especially Coltrane.    So if you see us leave church early or try to leave in a hasty way, please know we still love you all, we are only being careful and heeding our doctor's orders.  :)  

Please pray for:

Coltrane to be completely healed

God's wisdom to be revealed to all of Coltrane's doctors

Coltrane to not have ANY negative side effects from his radiation therapy (stunted growth, increased risk of other cancers, deformed skull)

God to direct our parenting

Increased appetite

Thank you all for thinking and praying for our family.  We truly cannot express the gratitude we have for all of you.  God bless and see you all soon!

Love,

Justin,

Sonja,

Jack, 

and Coltrane the Homebody