Coltrane and Hospice

Dear friends,

We are enjoying our time at home with our family.  We really like when Coltrane is active, hungry, or wanting to play.  It's rare, but it's like a gem.  Family is in town and it is very theraputic for everyone.  We are still praying for a miracle.  

Coltrane is now under hospice care and they come twice per week.  Their is some tumor growth around the stomach area.  He can feel his legs, but can't move them.  Sonja feels like she is carrying around a little rag doll which is very hard on her.  We are encouraged by everyone's generosity and helpfulness.  We don't know a time frame of his life (like anyone does anyway), but he has defied the three week notice.  This is good news.  He doesn't smile much and seems to be in a lot of pain at times.  We are working with hospice on this.  Over the last few days we have noticed a lot of decline as he is unable to sit up and has lost control of his bladder.  We are having a very difficult time and are pleading to God to save him.  We are so thankful for the meals that are brought to us all the time.  

Please pray for:

Coltrane's complete healing

Our family adjusting to this new transition and possible future outcomes

Complete comfort of Coltrane without being too sedated

The nurses and doctors to have great insight and care for him

Our extended family dealing with Coltrane's decline

Jack's understanding and feeling secure and loved during this period

For me to catch up on school work to continue to get high grades

Us to make good decisions when/if the time comes to make them

Our journey of trust and faith in the God who truly loves us and cares for us more than we can imagine

We are so happy for my Professors and their continuous understanding of our situation

We are thankful for my brother and his family to spend an extra week and for us to see other family members from different states

We are thankful for the doctors checking up on us both in Tulsa and OKC

We are thankful for God's help.

Love,

Justin,

Sonja,

Jackson,

and Coltrane the Brave

P.S.  We will post a photo very soon!

Provide a meal

If you are interested in providing a meal for Justin and Sonja, then here is the website to sign up to take a meal. My hope is to have someone signed up for each slot.  It begins in November and goes until January.


https://mealtrain.com/740mg1

Florida Trip

Hello friends and family,

We have so enjoyed our trip to Florida.  The  beach was wonderful and we were able to see some friends and create awesome memories thanks to the Make-A-Wish Foundation.  So shout out to them.  

     There are no words to describe how grateful and thankful we are to all the people who support us not only financially, but spiritually as well.   We are living witnesses for God’s glory through the use of suffering and torture.  It’s hard to swallow, and it hasn’t (and I don’t think it will ever) sunken in what we’ve been through.  But God is good and we are still praying for a mighty miracle for our young so-loved Coltrane.

     He is doing pretty well.  He is not complaining of his back hurting anymore.  Amen.  He is not declining as quickly as we were told.  Amen.  He is what we would call “stabilized”.  He doesn’t walk at all, and is very grumpy at times, but he is three after all and stubborn like both of his parents…and on steroids.  :)  We look forward to coming home tomorrow, but will miss the ocean.  Make-A-Wish paid for a photographer to take photos of us down here, so we are excited to share those soon.  Thank you for praying.  Thank you for praying.  Thank you so much for praying.

     I had an interesting experience in the ocean today.  I was looking at all the seashells and the ocean, noticing how beautiful they were  I saw God the creator (Elohim) at work here.  I was mesmerized by both the beauty of the shells and the ocean.  I waded for a while in the shallows, then swam out to sea a bit further.  I noticed the waves were stronger and very aggressive.  I felt near to God in this way.  I would let the large waves crash over me hard, and I would go under the sea and get tossed and turned, scraping my back and arms on the sea shells and rocks of the sea floor.  It hurt, but I felt I should do it again.  I swam back to the big waves and let the waves beat me down, punishing me.  I felt close to God knowing that He was in control, not the waves.  I prayed to him.  “Take me.” I said to the waves.  And they did.  I did this around 10 to 12 times.  Each time getting pummeled by the shear power of the water itself.  It made me seem small.  After my punishment I laid on my stomach at the very shallowest part of the water.  I would watch as the peaceful, receding waves slaved back to sea.  Through this, I saw God’s love, care, protectiveness, and gentleness.  God is both powerful, yet gentle.  He is both love and justice in one.  Just as the receding waves and the crashing surf symbolized.  It was very profound and I felt loved and cared for.  The harsh waves I saw the great and powerful Almighty Elohim, and I saw Yahweh, the immanently present one by way of the gentle, white, and calm recession in the shallows.

Please pray for:

Coltrane to be miraculously healed

Our family and friends traveling great distances to see us and be with us

Our trip home tomorrow (Thursday)

Peace in our home

Us to keep our faith and trust in God steady and solid

Jackson to feel secure and loved

Love,

Justin

Sonja,

Jackson

Greetings from Florida

Hey everybody,

We are in Florida!  Yay, palm trees!  We like them.  Flight was amazing.  The fire department shot water at our plane in honor of Coltrane on the runway.  Jackson even got a personal tour of the engine, and got to shoot the water!  Coltrane wanted to stay with Mommy.  :)  We also got REAL wings for the kids.  Metal ones, that is, which is very rare these days.  Jack and Coltrane got to sit in the pilot's seat and push the throttle of the airplane (while in park).  Flight was smooth.  BTW, the people on the plane applauded us as the water guns were shot at the plane, and also as we exited the aircraft.  We were escorted by one of Sandra's students who works for XNA.  He put us in front of the whole line.  We felt so special and can't believe the generosity and kindness of this man.  

     I know I'm jumping around, sorry.  So....Florida.  We were very happy with our accommodations through Make-A-Wish.  Jackson was bowled over by some waves and so was I.  :)  We don't have the ability to process what God is doing right now.  He is blessing us financially like MAD.  Truly....madness.  We are so thankful to all the helpers, supporters, friends, elders, fellow students, and some of my professors.  We love everyone.  Our testimony continues to find itself on the beach, in the lobby, in the grocery store, etc.  God is good.  

GOOD NEWS FOR COLTRANE:

He is doing SO well.  To God be the glory, seriously.  He is literally ravenous.  We haven't seen him this active and playful in a long time.  He seems to be in better spirits.  He is very comfortable, and laughs sometimes.  Jack and him are getting along pretty well.  Sonja and I are absorbing this unique opportunity to be thankful for every single moment in our marriage and our lives.  And to the people that God has used whether Christian or not, we thank Him for that help and support.  We love all of you.  Here are some pics, thus far.

Love,

Justin,

Sonja,

Jack,

and Coltrane the Beach Bum (Hotel Bum, really).  :)

Please pray for:

Coltrane to be miraculously healed

Us to have a great time together as a family

Us to be great witnesses

Healthy family structure

Catching up with my classes

Safe trip for family coming in.

Us to trust and have complete faith in God Almighty

Praise God for:

Everything

Your family

Our blessings of abundance in so many ways!

God bless you all!!!!!

Coltrane's 3rd birthday Give-A-Thon

Many of you know that yesterday Make-A- Wish put together a small birthday party for Coltrane and today Make-A-Wish is sending them to the beach. This give-a-thon is to take off any finicial stress they may have when they get back and allow them to just focus on each other and spend every moment together. So many of us have been touched by the Smith family and want to do something, so I am asking you do do this. Please donate to the Smith family and continue to pray for them. Let God have the final say in how long Coltrane can live. Pray for a miracle, peace, and understanding. Share the post. Any donation will help us reach our goal.Sonja Long Smith and Justin Smith we love you and hope your vacation is wonderful filled with many unforgettable memories!

https://www.facebook.com/events/1059808684030013/1065235893487292/

Going home

Hello friends,

Obviously it's been a really hard past few days.  I'm numb at the moment.  Good news, bad news.  Bad news: There is nothing more to do for Coltrane medically besides keep him comfortable and out of pain.  After finding out the aggressiveness of the cancer, the doctors/specialists in Tulsa/Oklahoma City/New York, said that we not Coltrane is not eligible for any kind of trials.  We've exhausted all avenues of medical cures.  But of course not Godly cures.  Good news: Make-a-Wish is sending us to the beach on Sunday for a a few days so we can enjoy the ocean and warm, white sand......just our family.  It will be great.  We are sad to say that hospice will be taking over from now on. It's so tear jerking and heart wrenching to get a call from them.....about your almost three year old son.....

Please pray for:

Wisdom for the Dr's, nurses, and pediatric hospice nurses

Coltrane's cure

Our marriage to keep strong

Jackson to take this in a healthy way.

Coltrane to take all this in a healthy way.  

Spiritual guidance

For me to not cry in my ice cream.  It would be just sad, and well, too salty.  In all the darkness, God brings us joy in many ways, especially laughter, the best medicine.

We love you.

Love,

Justin

Sonja

Jack

and Coltrane the Contrarian

Through our Tears

Dear Friends/Family,

     We have experienced the worst day of our lives today.  We received the devastating news that Coltrane's tumors are aggressively growing (twice the size in ten days).  The one in his brain alone is 1/5 of his brain now.  The tumor around his spine is very concerning and his leg is not working properly because of it.  I type through my tears that our options are extremely limited.  Radiation/surgery would only produce severe side effects that would only result in decrease his quality of life and wouldn't improve the outcome.  The doctors said that we would be "chasing our tail at this point".  They have affirmed us that we have exhausted every possible avenue to help our son.  Our Doctor will contact the Neuroblastoma experts in New York only for our own peace of mind, as they know what they will say.  We have been given advice by many doctors and family members to not put Coltrane through any more agony than he's been through already.  Right now the idea is to keep him cozy and comfy, and create great memories with him. It looks like we will be going home very soon and will receive the proper care.  The doctors have given us a timeline of two to three weeks for Coltrane to live.  We are beyond ourselves.  We are still praising God and asking for a miracle.  We have not given up on Him.  Please keep praying for Coltrane's healing.  We love you all so much.  We are sad, angry, upset, and sick of all the hospital stuff that we've all gone through.  Pray for us, please.

Please pray for:

Coltrane to be healed

Peace in our family

Joy every morning

The doctors and decisions they make

The decisions we make

Coltrane to feel good and play well

Wonderful quality family time 

In Christ,

Justin

Sonja,

Jack

and Coltrane the Contrarian  :)

Prayers this morning

So after we heard the terrible news of relapse, the doctors told us that we needed to start chemo right away (after consulting Tulsa, OKC, and New York), due to the tumor that's close to the spine.  Throughout the week, they have been managing Coltrane's pain, started IV nutrition, and is continuing with the steroids.  It's been a really hard week for him.  He's really grumpy, and doesn't want to stand or walk.  The weakness in his legs is very concerning to the Doctor.  Because of this, they will conduct another MRI in the morning, which will be around two hours long.  

Please pray for:

Our faith and trust in God as we are very discouraged right now.

MRI to show shrinkage of the tumors/no tumors

Coltrane's attitude and playful spirit to come back

His blood counts will go up

Coltrane to not get any infections due to his low blood counts

For us to be a "normal" family in the hospital

For us to be home soon

Wisdom for the Docs for the next steps

Me (Justin) balancing school, work, and hospital life

Sonja, for being alone at the hospital at times

Jackson to feel family unity.

Love you guys!

Love,

Justin,

Sonja,

Jack

and Coltrane the Treasure