NED (no evidence of disease)

Dear friends,

We asked you to pray for our friends who had a son with cancer.  His name was Bennet.  He died in the hospital after his kidneys failed.  Please continue to pray for his parents Aimee and Ben and their beautiful little girl Adeline.

Thank you, thank you, thank you.  We are so happy to announce that Coltrane is officially NED (No Evidence of Disease), or in other more common terms, in remission!  Praise God Almighty.  He has answered our prayers with a "Yes, sons and daughters."  With that many people praying for Coltrane, God HAD to do something (with respect to God's will of course).  His Word is perfect and we give Him all the glory and praise.  He has been with us and shown us so much through this journey, which is continuing still.  Thank you again.  We are so well supported!  

Please pray for:

Coltrane as he's kind of crazy from being on this certain medication

Him to not go into relapse EVER

Our wisdom in deciding to pursue other interesting treatments that are fairly new (after NED occurs)

Coltrane's pain to be gone

For complete restoration of his physical being as well as his emotional status and confidence in himself

Thank you again.  

We love you all and praise the One who healed our son,

Justin,

Sonja,

Jackson,

and Coltrane the NED!!!!

Prayers for us and our firends

Hello,

Please pray for some friends of ours as their son's kidneys have failed and in order to be moved to this floor (from the PICU), he must be taken off a ventilator.  They don't think it will be long for their son.  He is only 3.  Please pray for him and his family.  He has an older sister as well.

Please pray for Nikki as she is dealing with the death of her daughter last October.  She died from exactly what Coltrane has.

Please pray for Jordan, the mother of Charlie.  He has gone into relapse.  She'd like prayer for good news, health, and peace.  He also has Neuroblastoma.

Pray for Isse.  He is a Muslim taxi driver I met.  Pray he recognizes Jesus as not just a prophet, but for who he really is, the Son of God.  Pray for his job and family time to be balanced well.

Coltrane is doing really good during this session, praise the Lord!  He has had no fever.  He is great in the mornings, but really uncomfortable and cranky in the evenings.

Please pray for:

The aforementioned people and their hardships

Coltrane to be fever free the rest of the treatment

Coltrane to recover with great vigor!

His appetite will increase and gain weight

We will get good results from urine tests that will tell us that he is NED (No Evidence of Disease)

Love,

Justin

Sonja

Jackson

and Coltrane the Strong

Great trip

Hello everyone,

We had a bit of a scare during the trip about Coltrane not urinating.  But God took care of that right away.  We had NO issues whatsoever with his health after that.  We arrived safely and received our luggage bruised but intact at least.  The trip was great.  We got to celebrate Sonja's brother Nick and new wife Katarina's wedding in Cape Cod.  Two words......Freaking Lobster!  It was beautiful and Sonja and I and the kids loved the beach so much!  I even body surfed in 55 degree weather.  You want to know why?  Cause my 4 year old Jackson wanted me to.  Cause we do whatever they say right?  :)  It was.......cold, but fun since I hadn't done that since living in L.A..  

Yesterday was Coltrane's best day yet.  It took him a good 3 hard weeks to recover from the two week Immunotherapy (IL2/MAB) treatment.  And then we get admitted last night.  So today starts the MAB treatment.  It is the antibodies that make him feel very ill, feverish, and will most likely be in a lot of pain.

Please pray for:

Coltrane to be in zero pain

The MAB to do it's job with no negative side effects.

Coltrane to not be so weak after treatment

Tolerate feeds and gain weight

The right amount of pain meds to start with

Our stress levels

That Coltrane's symptoms will cease after treatment is done so we won't have to stay longer

A comfortable weak

Us to be comforted by the Holy Spirit and be courageous and bold

Strength and Joy in the midst of hardship

Love to you all and thank you for praying!

Love,

Justin

Sonja

Jack

and Coltrane the Coming Back (alert, wanting to play, happy, active)

Great News!

Hey people friends,

We went to see the Oncologist and his PA today and they reported that the MIBG scan showed NO tumors in his leg.  What a great answer to prayer.  They did mention that Coltrane was quite wiggly and that there was an area of interest in his left adrenal gland (the only one he has left).  They said it naturally lights up as well as the stomach.  They're not very concerned but are being very good at their jobs, thank God.  They said that it would be not unheard of but very rare that the cancer on his leg went away, but then new cancer would spring up in a different spot.  The odds are good that it's not Neuroblastoma.  So, not perfect news, but I would say 95% good news.  We'll take it.  They also said he can go to Boston and we can scare the passengers with our masks if we wish.  The board (Radiation Oncologists, Oncologists, Hemotologists, etc.), meets on Wednesdays about their cases.  They will discuss whether or not Coltrane needs another scan, with possible sedation. 

Thank you all for praying for us.  It's been a hard and fun weekend.  There is praise to give to our Father who loves us so.

Please pray for:

Coltrane to not have any cancer in his body and never will again

Our trip to go extremely well and have fun

Peace in our family

Us to trust God again and again and again, and always.

Please praise God with us for:

Healing Coltrane's leg

Coltrane's muscles and endurance he's slowly getting back

Yet another chance to trust Him and His plan and not our own.

Love,

Justin,

Sonja,

Jack,

and Coltrane the Healed!

News and flight

Hey everyone,

We will be leaving for OKC today and hopefully have some good news about whether Coltrane has any cancer in him or not (from the MIBG scan).  After this we will be traveling to Boston for a few days for Sonja's brother Nick's wedding.  We will also be able to see some dear friends of ours.  It's exciting but nerve racking.  We might just wear those scary masks to ward off people that are ickle.  :)  When we get back, we must check right into the hospital for a weeks treatment of MAB (antibodies).  Please pray for:

Safety in traveling

Kids to be comfortable on flights

Mine and Sonja's sanity :)

Our anxiety and stress levels 

Coltrane to be cancer free!

Us to have complete faith in our Father who watches us always

Our trip to go smoothly with no delays or lost luggage

Airport security to not hassle us about all of our needles (Hahahaha, but not funny.  We called them twice about it, and they said it will be "no problem".

God and His angels to protect us from attacks

For us to be gracious, humble, bold, and courageous warriors in our sufferings.

Thank you and we will update you ASAP.  

Love to you all.  It was such a blessing to be able to play drums yesterday and hear a wonderful message from Pastor Gregg.  Sorry about the early clicks if you noticed.  :)  The Holy Spirit really stepped in for me yesterday while I was drumming.  

Love,

Justin,

Sonja,

Jackson,

and Coltrane in Flight

Radioactive

HELLO,

We are heading to OKC for a night.  Coltrane will be injected with radioactive material today.  it will then flow through his bloodstream and tomorrow will present any cancerous matter via MIBG scan.  The scan itself is simple and easy.  He won't need sedation or anything!  Yay, something simple! (?), but not really.  Whah whah.  :)  God is good and faithful as He says He is.  Please pray for 

NO cancer in Coltrane's body

Coltrane to feel normal and like his old self

Our safety as we travel

For upcoming treatment 

For the balancing act we will be facing soon (school starting, work, treatment, health, etc.)

Thank you for your prayers.  We believe in Jesus' name that Coltrane is healed and without ANY disease!

Love to all of you!

Thank you again and again and again.

Love,

The Smiths