Time to rest and heal

Hey friends,

The doctor said he doesn't have a fever or anything and that he's been through a lot.  He needs time to recuperate.  This is good news!  We are so happy that it's not something else (like he needs blood or some other type of transfusion).  It's very hard on us to watch our son only smile twice in two weeks or so.  He's just not himself.  Please pray for:

Coltrane's confidence

Strength for his mind, spirit, and body

Coltrane to get back to himself again soon, like now would be good.  :)

Coltrane and Jack to be able to play together 

Motivation for him

Patience for our family

Wisdom in knowing how hard to push Coltrane with his endurance

Stress in general

Love to you all,

Justin

Sonja

Jack

and Coltrane the Weak

Uodate: Thank you for your prayers!

Hey everyone,

We got home Saturday, and ever since then Coltrane has not been acting himself.  After his infusions are complete, the symptoms should go away, but he seems very non-playful, not energetic, doesn't want to walk or anything.  Naturally, we are worried.  We think it might be hemoglobin counts are low.  Not sure though.  We have an appointment tomorrow to see his local physician in town.  We are hoping to not have to go to Tulsa or OKC for anything because that would um,.....suck, to be blatant.  We just got home!  We love home.  Home is home is home.  

Please pray for:

Coltrane to become his normal, energetic self

Coltrane's levels to be perfect

His body's strength to recover along with his confidence

Coltrane to not be in any pain whatsoever

Thank you all.

We love you,

Justin

Sonja

Jackson

and Coltrane the Rough Cut Diamond!

Home at Last!

Yay to everyone!

Thank you so much for praying.  We are finally home after a long two weeks.  The doctors looked at the x-rays and decided there was NO obstruction.  Thank the Lord.  He is so good, helping us in every way.  They said it's most likely his stomach very slowly working back to normal due to the amount of pain meds he had to take to be comfortable.  He is doing really well at home.  There's nothing like home.  It's simply true.  Thanks for all the prayers!

Please pray for:

Coltrane's stomach to resume to normal

Coltrane to bounce back like a bouncy ball

Our home to be a healing place and a peaceful one

For our understanding of God's will in our lives as well as our children's lives

We love you so much!

Love,

Justin

Sonja

Jackson

and Coltrane the Homebody (at least for a couple of weeks)

Going home.........NOT!

Hey all,

We were so excited to hear that we were being discharged this morning.  After two weeks in the hospital, it is very sweet to hear those words.  I was packed the entire van full of two plus weeks of the stuff we had to bring (both from the apartment at the Kid's Korral and the hospital).....only to find out that Coltrane has excess fluids coming out of his G-Tube area.  It normally leaks a little bit, but that's normal.  The stomach produces lots of fluids and such so it usually isn't a lot or anything.  But this time it was A LOT of fluid.  And the color was off.  The doctors want to keep him overnight.  They will take an x-ray to see if there are any obstructions.  If there are, that would require surgery right away.  There is a 5% chance that there is a blockage.  We will know results soon.  Our poor little son has been through SO much these past two weeks.  We hate to see him in such agony.  We haven't seen him smile in days.........but he will again!!!

Please pray for:

Coltrane to not be in any more pain

There to be ZERO blockages of any kind

The abdominal leak will cease

We will be going home tomorrow.

Our morale to increase......weariness creeps at our door

Thank you so much for praying for us.  We need it, desperately.  I am beyond annoyed to say the least.  But I must think about it in a way that is not from my perspective.  I'll try my best to see it from God's eyes.  We are so glad we caught it before we got home.  That would've been really terrible.  He is in good hands and there is a reason we are still here.  

In God we trust,

Justin

Sonja

Jack

and Coltrane the Man

Update and loving prayers!

Hey friends,

Coltrane is doing very poorly.  He feels terrible and is retaining a lot of fluid.  They will give him meds to help with the fluid release.  His fever is still very high.  His fever is around 106 so you can imagine how that must feel.  His pain is being handled well though.  The doctors are basically saying that we just need to ride it out.  These symptoms and everything are going as expected.  But it is hard, very hard to watch and do absolutely nothing.  Which is actually a relief due to the fact that we must solely rely on God Himself to handle our young son.  Tomorrow is the last day of his MAB (antibodies, which is the painful part), and IL2 will end Friday morning (causes the fever).

Please pray for:

Coltrane to rest
Fluids to be discharged
Coltrane to feel God's presence
Our family's moral
Fever to go away
Immunotherapy to be successful
Wisdom for the doctors and nurses
No infections to occur


Thank you so much for praying for us.  We love you all so much.

Love,
Justin
Sonja
Jackson
and Coltrane the Feverish

Update and yearly reflection

 During the first part of this two week treatment, he did really well.  He only got sick to his stomach one time.  His pain was minimal.  Yesterday, he started to feel the symptoms associated with this treatment, IL2.  He spiked a 105+ fever at one point.  He mostly felt blah and achy as of late.  He is now done with his first week of treatment.  He should start feeling better and lose the fever very soon.  He's getting blood now, so that should help his hemoglobin level to go up which in turn will make him feel better.  Because of having to get blood and everything, we would have a later discharge time, so we decided to stay in OKC.  We will re-admit on Sunday for the next four day treatment which is expected to be rough.  

While Jack stays at the Korral with Nana or Mimi and wakes up at 6am everyday, Sonja, Coltrane, and I have been enjoying sleeping in until 8 or 9am everyday!  This is something we haven't been able to do really since 2010 when Jack was born.  :)  

We are doing well.  It's hard to see Coltrane so sick, but we can see the end, and it's close!  We've had a really rough year last year.  We started off the year with me (Justin) being diagnosed with depression.  The next month we lost our third child through miscarriage, Emory, which crushed us.  A couple of months later Coltrane was diagnosed with cancer (exactly one year today, hence the 2014 year recap).  As if that wasn't enough, Sonja's dad Rick died in August.  We were crushed again.  I then found out I had to have a surgery which I had to somehow manage to fit in our crazy schedule.  After that, we learned that my dearly loved grandfather died at the end of the year.  The year was..........no words.  It was the worst year of our lives.  Through all of this crazy stuff that most people didn't know about, God was with us the whole time.  I had no idea how we'd get through it without Him.  It would be easy for someone to say, "Oh, you just got through it and you stayed strong and whatever.  All by your onesies."  But we believe and know that God was planning something good and great to happen out of this.  We have grown, no doubt.  We might not be able to see all the growth, but I know it's shaped us in ways that only He knows.  We are happy to be getting toward the end of Coltrane's treatment.  It's hard to think it's been a year!  Can it get worse than last year?  Why sure!  But we will trust in God and His plan.  Our world stops, our plans cease, our minds go crazy with worry.  God is the only constant.  We have heard so many positive things and experiences that people have had from hearing our story.  This I know is part of the good that God works out of the imperfections in this world.  And there is more to come......We are hopeful.  It's amazing that God is using our family in such a powerful way.  Please know I say this in complete humility.  I boast only in the power of Jesus Christ and the Holy Spirit.  

Thank you all for praying for us.  The verse that speaks most to me at this time during treatment is James 5:16  "Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.

That is the truth.  Even though we've had "setbacks" during our son's treatment, this verse holds true, as it would of course.  I say try to prove it wrong.  It won't work.  I have complete faith as so many righteous people (made so by Jesus' sacrifice) are praying for him.  These prayers are POWERFUL and EFFECTIVE.  This is the perfect combo!  

Please pray that:

Next week goes smoothly

The pain medicine will ease his suffering

Fevers will not continue after the infusions are complete

He won't have any unexpected side effects 

The medicines will do their job in killing all the cancer cells

He will take the Accutane easily

The Accutane will have no negative side effects

Our family's faith, trust, and relationship with God grows in ways we cannot imagine

We love you.  

Love, 

Justin, Sonja, Jackson, and Coltrane the ImmunoTrain

Our Story

This slideshow pretty much sums up everything I want people to know about our experience over the last year.  Please take a few minutes to watch it, it would mean so much for you to hear it in our own words and see the pictures.

We have a really talented friend who created this and put so much work and love into this project.  She definitely deserved the "A" that she got for it.  Credit goes to Gabi Satola for this project that was so close to her heart and ours.  

Love,

Sonja, Justin, Jackson, and Coltrane the Courageous

A light in the dark world

Hello friends and family,

Things have been going very well lately.  We've had two whole weeks of radiation for the spots they found on his femur (not new cancer thank God).  He doesn't seem to be affected by it hardly at all, if any.  We've been enjoying the time together when we are.  Coltrane gets done at around 8:30am every day, so the rest of the day is fun times for us!  We've gotten to go on a river boat cruise, see the National Cowboy Museum, the Myriad Gardens, and received lots of play time together.  Tomorrow is Coltrane's final day of radiation!  We are so excited to be done with this part of his treatment.  Thank you for your prayers.

Next up, is two weeks chalk full of Immunotherapy.  Week one will be a treatment that he's not had before and week two will be the antibodies that he's had before plus the new one.  This is expected to be very rough on his body, mostly pain, nausea, and fever.  After that, we will be at home for a a couple of weeks most likely.  

We are doing well for the most part.  We are always having to rely on God for help, as we do anyway.  In one way, it's nice to be with other families who are going through the same sort of experience with their children, at the Korral.  But it's very hard to see those same people delivering bad news about their children.  Satan uses this to distract us and bait us into worrying and not trusting God.  

Please pray for us to focus on what God is doing through us, to not be distracted by worry and things of the world.  Pray for us to be encouraged and strengthened by His Spirit.  We know God is with us and that He is good.  Pray for us to be lights in this dark world, and to ALWAYS trust God and His perfect plan.  Please pray that we will all see things from His perspective, and not our own disillusioned one.  

Please pray for:

Coltrane to be completely healed

No future side effects from radiation

Immunotherapy will go super smoothly, and not have any lingering fevers

We will be able to all make Sonja's brother's wedding in Boston in June

Our patience, trust, faithfulness to grow exponentially

To be awesome and consistent parents

The next scans (a few weeks from now) to show NO signs of cancer

Thank you family.  We love you all.  We appreciate your prayers and encouragement and understanding.  God is truly working through you in so many ways.  We love you.

Love,

Justin

Sonja

Jackson

and Coltrane the Chatterbox (He is saying SO many words and multi-word sentences.