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.

Praise to God!

Hey everyone,

We are excited to write you all and let you know that the two spots on Coltrane's femur are NOT new cancer tumors.  However, they are viable (active) and need to be radiated soon.  Most likely this next week.  What great news this is!  What's worse than hearing your son has cancer?  That the cancer is already growing back!  Fortunately this isn't the case.  God is responsible.  Thank you for your thoughts and prayers.  God is listening as we keep knocking on the door asking for Coltrane's healing.  Please pray for:

Radiation to go smoothly with no problems

There won't be any stunted growth

We will have the very best care and plan for Coltrane's treatment

Coltrane to gain weight

Coltrane to tolerate his nightly feeds

God to help us as we will be away from home for around two weeks coming up for some more immunotherapy (finances, strength, endurance, and trust and faith in the Lord)

I know that the Lord will provide, no matter the need.

Love to you all, and to all a good night!!!  (umm, is that Tiny Tim or something?)

Justin,

Sonja,

Jackson,

and Coltrane the Fierce

Some days are just plain hard!

Hello,

We were supposed to go home today, but Coltrane's fever isn't letting up so we are staying at least one more night.  The MRI scan that was taken today showed that a marble sized lesion was there.  The doctor thinks it is just a spot that was missed, and not new growth.  However, it is "viable" and needs to be radiated.  Because the treatment is a clinical trial, the people need to decipher if we can radiate now during immunotherapy, or if we will have to put a hold on immunotherapy while we radiate the spot.  There is a chance that his leg will be a little stunted.  

So it's a double downer for us today.  We are very disappointed that we couldn't go home.  And we are even more upset about the missed spot on his femur.  We are trying to stay positive by remembering that this is God's deal.  It's God's plan.  We definitely don't understand.  But He does.  The one who's in control knows exactly what's going on and what He's going to do or not do.  And we will trust His judgement.  It's hard, but we can do it through the power of the Holy Spirit.  Please pray for us.  

It's difficult for us to remember what today represents, but we are trying.  What an amazing act of love and sacrifice God has made for us.  

Please pray for:

Easy scheduling for radiation and immunotherapy

Us to go home tomorrow

Coltrane as he starts a new medicine

Coltrane's fever to go away

Our family who is uplifted and discouraged at many different times all the time.  This coaster isn't fun!  But it's worth it.

We are praising God that the doctors caught the spot on his leg.  And we are so thankful that God has helped Coltrane get through his first round of immunotherapy.

Thank you all and Happy Easter!

Love,

Justin

Sonja

Jackson

and Coltrane the Eager to go home.

MRI tomorrow

Dear friends,

Please pray for Coltrane to be able to get an MRI to scan his femur tomorrow morning early.  That way, we can get the results faster and go home tomorrow.  Please pray for his fever to go away and for him to feel better quickly after treatment.  And pray for the MRI to show nothing negative.  Thank you so much!

Love,

Justin,

Sonja,

Jackson,

and Coltrane