Heavy Hearts

Hey everyone,

With heavy hearts we must inform you that we have heard some bad news today.  Coltrane is in relapse of his cancer: Stage 4 Neuroblastoma.  They found a spot in his brain (not too deep, which is good), a tumor on his right shoulder area, one on his femur, one as big as a plum by his heart, and one that is straining on his spine.  They are pretty confident that there are lots of little tiny cells that are going to grow into Neuroblastoma cells too.  The one by his spine is time sensitive which will require chemotherapy in Tulsa (Thank you Lord!), probably next week.  The chemo will shrink the tumors.  If the scans show that the chemotherapy is working, then they will continue until that protocol is finished.  If it doesn't seem to work, we will seek out other options (possible treatment in other states).  However, the diagnosis is not good.  There is no cure for relapsed Neuroblastoma.  The point in treating this is to prolong his life as much as possible so hopefully he will be alive when there is a cure.  I know it almost sounds hopeless.  Unless he is completely miserable and in pain all the time and can't walk and stuff, we will continue to try as much as we can to research and get treatment for our youngest son.  

We are overwhelmed and tears of sadness flow frequently.  We do believe in God's miracles, and will continue to have hope in our God, who defies the world of sin and disease!  We stand firm and trust in God's will.  His will above all else.  No matter what the outcome, our testimony is GREAT!  And it's of God's help, faithfulness, love, kindness, and joy in the midst of darkness and weakness.  

I was at home while Sonja, Jackson, and Coltrane were in OKC.  I just got off the phone with Sonja with some news.  I fell to my knees on the kitchen floor, weeping uncontrollably, making no sound.  I finally had to breathe and when I did, it was a cry I have not known.  A shriek of terror came forth.  I laid down on the floor on my back.  I raised my hands to the Lord crying, "Why Lord? Why is this happening to us?  I need your help!  Please take me instead of my son, Lord!  Help me God Almighty.  Help me."  And when I said that last sentence, God shut my faucet off...immediately.  I was grateful for the instant response.  Sometime he helps us in strange ways.  I'm glad that I expressed my feelings to him and that He responded the way He did.  He did help me, so much.  I needed that faucet of tears to stop!

Please pray for:

A miracle for Coltrane

Strength for our family

Wisdom for us and the Dr.'s making decisions

That Coltrane will respond well to the chemo and shrink the tumors.  And make them disappear.

That Coltrane's chemo won't make him sick

Thank you so much!  We appreciate your prayers.

Professors:  Please forgive my absences.  And feel free to read to and update the class as you see fit.  Would you kindly excuse my absences?  I will turn in work and assignments on time.  And if there is a chance of coming to class, I gladly will be there.  Thank you for understanding.

Love,

Justin,

Sonja,

Jackson,

and Coltrane the trooper

Results!

Hey everyone,

Sonja was leaving the hospital when they called her back in.  The results kind of came in.  They know enough anyway.  Here's what we know:  There are 3 spots that are concerning to the doctors.  They don't know if it's Neuroblastoma or an infection.  One is in his brain.  The second is in his chest next to his heart which is plum sized.  The other, is right by his spine.  They are very concerned about the one by his spine, so they will most likely perform surgery tonight or tomorrow.  This is hard news to take in.  We are in shock mode.  We are still processing information.  We are not trying to be strong because it's of no use.  The Lord and he only is our strength.  We know not His plans, but they are perfect.  It does seem odd that the spots are all in the "worst" areas.  But then again, it doesn't seem coincidental.  

Please pray for:

No relapse

No surgeries, but if so then he will have the best surgeons to work on him

For our faith and trust in the Lord

For us to be thankful in this trial

For Coltrane to be completely cured of ANY sickness.

We love you guys so much and thank you for your constant prayers.

Love,

Justin, 

Sonja,

Jackson,

and Coltrane the Brave

Not through the woods yet

Dear Friends,

Here we are once again asking for your prayers.  We had been waiting for results from Coltrane's urine test from last week and today the doctor called and said the numbers were elevated from his last test in July.  This is a urine test that can test secretions from certain types of tumors, neuroblastoma being one of them. The doctor said the results were concerning so we will be moving the scans up to next week.  He will be getting a bone marrow aspirate, CT scan and MIBG scan.  These scans will probably take about 3 days and then maybe longer to receive the results.  This test result is surprising because, overall, Coltrane has been feeling better and starting to eat very small amounts but at least eating something as opposed to nothing last week and starting to play a little more.  We are asking for prayers that these elevated numbers were just a fluke and Coltrane will remain NED (no evidence of disease).  

Satan knows that we are very vulnerable right now.  The unknown is so scary and the fear can be engulfing.  Not only has Coltrane not been feeling well but now Jackson has a fever and has had to be quarantined to his grandma's house.  It is difficult to not be able to comfort your sick child out of protection for your other child.  Please pray that we rise above the temptations of fear and worry and trust in Him.    

Please pray for:

-The scans to be clear and Coltrane to remain NED!

-Jackson's fever to go away so he can come home.

-Coltrane's appetite to increase and pain to decrease.

-Our minds to stay focused on the God who is bigger than all of this.

-Justin's stresses of classes, work, family, and juggling hospital visits.

Thank you friends, last time we asked for prayers, we immediately felt a surge of peace.  We cannot even begin to tell you what it means to us.  

Love,

Sonja, Justin, Jackson, and Coltrane the Courageous

*I sought the Lord and He answered me and delivered me from all my fears.  When the afflicted man called out, the Lord heard, and from all his distress He saved him.  The angel of the Lord encamps around those who fear him, and delivers them.  Fear the Lord, you his holy ones, for nothing is lacking to those who fear him. (Psalm 34:5,7-8, 10)

Coltrane update

Dear friends,

      We went to the doctors today in OKC.  He said the pain Coltrane's having, and not eating and the fatigue is most probably caused by the Accutane Coltrane is receiving (only one more session of those!).  However, they will be looking at his urine sample on and hopefully get results on Monday.  Good news!

Thank you for praying.  It has helped us immensely.  God is listening.  

Please pray for:

No relapse

A good urine report

Coltrane to eat and sleep better

Coltrane's pain to go away.

Love,

Justin

Sonja,

Jackson,

and Coltrane the Travel Master

Prayers for Coltrane

  These past weeks have been going pretty well.  I am personally juggling a lot of things right now being in school, spending time with family, studying, and hospital stuff.  

This past week or so Coltrane hasn't been acting like himself.  He's not eating well or sleeping well.  He seems to be in pain somewhere.  We have a doctors appointment tomorrow and they will check his levels and all that.  The devil has studied us for a long time now and can easily see the time to attack.  One misstep and it turns into paralysis.  Our minds get attacked and we think the worse.  We need so much prayer.  It's hard not to think he's relapsing already.  Our worst fear realized.    Please pray for:

God to cure Coltrane

God to help us with our anxiety

Coltrane to not be in pain and to eat and sleep better

Swift answers about why he might be acting like this (answers that are positive, of course)

Us to be spiritually aware of attacks against us and to be watching out for them.  Please pray for us to not fear and be bold in this situation.  

Love,

Justin

Sonja

Jackson

and Coltrane the Sleepless

Hospital Freedom

We have just completed Cycle 5 out of 6 of treatment for immunotherapy.  We are completely finished with our long hospital stays and we couldn't be happier.  Over the last year, I counted that we have spent approximately 28 weeks in the hospital, so being home for more than 2 weeks at a time is amazing.  Coltrane will have 2 weeks off and then startup his last 2 weeks of Accutane.  After that, we will be officially done with the standard treatment for Neuroblastoma Stage IV.  We have been seeking your prayers over the last few months about the possibility of doing further treatment in the form of a clinical trial of the drug DFMO (trust me, it is such a long name).  Since, the relapse rate for Coltrane's diagnosis is high, we have been trying to research and pray about our next steps.  We prayed for the Holy Spirit to guide us in our decision through the advice and recommendations of our oncologists.  Today, we went to visit our primary oncologist in Tulsa and we were so happy to see that he had been doing his research as well.  He recommended that we follow through with this trial as it didn't seem like the side effects were very toxic and the early results of the trial were very hopeful.  It was such a relief to have a definitive answer and now we have some direction about our next steps.  It is another 2 years of treatment (Boooo!) but at least it is just a pill twice a day.  We will be getting scans every 3 months, and blood-work every month.  We would have been doing those things anyway.  The trial will involve further traveling since only certain hospitals are coordinating this trial.  We have chosen to go to the Children's Hospital in Kansas City.  We will probably begin this treatment in the late fall, early winter.  

We have been constantly encouraged and inspired by our wonderful family in Christ.  As we look over the last year, it is easy to see God's hand.  God used you guys to send us encouragement in our darkest moments and to share in the praises of good news.  Being on the other side of this mountain feels so good and knowing that Coltrane is getting better each day is a blessing.  Praise the Lord, Oh My Soul!  Praise the Lord when I hear my boys fighting, praise the Lord when I see that onery twinkle in Coltrane's eye again, praise the Lord when I hear the boys chattering in their beds at night, praise the Lord Coltrane will need a haircut soon, praise the Lord, Jackson and Coltrane can have dance parties together, praise the Lord that Coltrane is NED, praise the Lord.  

We appreciate your prayers and are surprised and astonished that so many of you are STILL praying for us, it means the world to us and our journey is not yet over so please keep them coming.  Please help pray for:

-Coltrane to gain some weight, his appetite will increase

-Clear scans at the end of treatment next month

-Details of the DFMO trial (getting enrolled, insurance blah blah blah)

-No side effects from treatment to haunt Coltrane further down the road

-Justin balancing school, work, and family time

We love you,

Sonja, Justin, Jackson, and Coltrane the Free