Exciting News!!!

Hello family,

We are so excited to tell you the news we received from the doctors.  A couple of weeks ago we noticed a little bone-like pointy thing poking out from Coltrane's stomach area.  Obviously we were concerned.  We asked one of the Oncologists who said it was an area of concern and that we will have scans set up for checking it out.  We took him back a week later and asked our regular Oncologist.  He looked at it and immediately said, "Oh, that's just a stitch."  I couldn't believe that a stitch could be made of such hard material and be so taut, but it was.  It really is as hard as bone!  In other great news, Dr. Mohammed (our main Oncologist) said that the chances of Coltrane's skull being deformed from the radiation therapy was "highly unlikely" due to how low the level of radiation will be.  Praise God Almighty!  We are so relieved to hear this.  To the moon, seriously.  Sonja and I are very impressed with the radiation department in Tulsa.  They are very professional and so friendly.  They made it seem like we were their highest priority and were of great help to us and our concerns.  After multiple meetings with like five different people in one morning, we finally got it through to everyone that we DIDN"T WANT TO INTUBATE.  Obviously, if it was an emergency we could allow it, but we made it very clear how we felt and what the God-send of an ENT (Ear, Nose, and Throat) doctor said about intubating Coltrane, and the trauma he went through last time.  Coltrane had no trouble with the LMA style of breathing support during his time "out", when Coltrane got his mask fitted and his free (not so free) tattoos on his body.  They are about the size of a small freckle.  So it seems that they will most likely be able to do that every time.  Coltrane will have the radiation every day for twelve days (minus a weekend).  

Please pray for:

Coltrane to not be sick during the treatment (mostly concerned with nausea)

Sonja and I to find something new and exciting during every drive to Tulsa we make (every day, man)

Sonja and I to deal with Coltrane being put to sleep every day (it's actually fairly traumatic to see your son wiggling all around, causing a ruckus, and then going limp on a dime in your wife's arms)

Coltrane to not develop night terrors due to the amount of times he will be put under in a short amount of time.

For ZERO negative affects of the radiation treatment.

We praise God for:

Coltrane gaining weight

Our family being together

Coltrane being so darn strong and brave

The support we are receiving from our family, our friends, and the great and loving body of Christ

The strength we are receiving from the Lord

My flexible job

Our warm home that welcomes us to blissful rest and relaxation (mostly, Coltrane is two after all.  And Jackson has definitely got his dramatic side from his daddy's knack for acting).  Hee Hee.

We love you all so much and thank you for your prayers and thoughts!!

Love,

Justin

Sonja

Jackson

and Coltrane the popcorn lovin' madman

Coltrane update

Hello friends and family,

The Smith family is doing great!  We love being back in town and in our home.  We are so glad to be on the other side of the transplant.  Right now, we are seeing our Oncologist once per week for blood work and general check ups.  We are also in the process of setting up appointments with the Radiologist for radiation therapy.  We had a consultation with him last week.  He told us that for Neuroblastoma, they will give a "ridiculously low" amount of radiation over the course of twelve treatments.  Because of Coltrane's age, they will have to sedate him every time, which will be five days a week for two and a half weeks.  They will radiate Coltrane's abdominal area (where the tumor first originated) and also it was recommended that he have his temple area radiated as well (he has a very small, almost indeterminable bump on his head).  There are multiple concerns that we have from this news.  There is a possibility that Coltrane's height might be affected and part of his skull could be deformed.  Obviously it wouldn't be preferable for these side effects to happen.  The risk is too great for us to not have this done.  The other issue with radiation is when they have to put him to sleep every time.  The therapy is very precise and he must be super still.  We have to meet with the anesthesiologist about whether he will be intubated or be using an LMA.  The LMA would be the best because it only rests on top of the trachea instead of inside of it, which caused some major issues the last time he was intubated during surgery.  

Good news!  We will be able to go to church today!  We got cleared today.  His numbers are great, and his new immune system is doing it's job!  However, we will have to be very limited on the amount of contact we have with others, especially Coltrane.    So if you see us leave church early or try to leave in a hasty way, please know we still love you all, we are only being careful and heeding our doctor's orders.  :)  

Please pray for:

Coltrane to be completely healed

God's wisdom to be revealed to all of Coltrane's doctors

Coltrane to not have ANY negative side effects from his radiation therapy (stunted growth, increased risk of other cancers, deformed skull)

God to direct our parenting

Increased appetite

Thank you all for thinking and praying for our family.  We truly cannot express the gratitude we have for all of you.  God bless and see you all soon!

Love,

Justin,

Sonja,

Jack, 

and Coltrane the Homebody

Urgent Prayers

Dear friends,

I'd like to send you an urgent prayer request for Coltrane.  First, the praise.  We are thanking God today for great lab results.  His numbers are getting better and better every day.  Praise God!  He is really doing very well.  We woke up to Coltrane vomiting this morning.  We think it's feeding related (formula being given through his G-tube).  After a while, we noticed he wasn't acting his usual self.  We went to the Oncologist's office in Tulsa today for a regular check up and labs.  We found out he has a low grade fever.  Please pray for Coltrane's fever will not go up at all.  If it does, this will mean auto admittance to the hospital for a few days while he receives antibiotics.  Please also pray that Coltrane will be able to handle his feeds better.  I also have a doctor's appointment on Friday that I can't miss.  Please pray for this as well.  Thank you so much for your love, care, and support for our family.  We are overwhelmed with your tender hearts toward our family.  Thanks and enjoy this beautiful weather!  Whooo!

Love,

Justin,

Sonja,

Jack,

and Coltrane the Monkey (his Papi always used to call him that)

Coltrane update

Hello dear friends,

We are all so very happy to be home again.  We made it.  What a rough road that was.  The stem cell transplant was every bit of "down in the depths" as the doctors said it was going to be.  But we are home at last....and there's nothing like it.  Due to the flu being so bad, we are a bit quarentined at the moment, but we'll take it!  I believe we must stay away from the general public until his bone marrow fully engrafts.  We go on lots of walks and try to get out of the house as much as we can.  

Coltrane is doing so well!  He is getting better every day.  His eating is slowly getting more to normal.  He's playing, running, laughing, and being a two year old....so he's also screaming, stomping, and crying too.  :)  It's really neat to see our Oncologist at work.  Within the first minute he's already noticing little abnormalities that may or may not be an issue with Coltrane.  It's amazing.  We went to see the audiologist to make sure the chemo wasn't effecting Coltrane's hearing (50% of Neuroblastoma patients need hearing aids).  And thanks to your prayers, his hearing is 100%.  He is starting to say many words that great pronunciation.  We also went to see the eye doctor to make sure his eyes were okay.  And they were!  This is great news.  We are so relieved at God's blessings.  "Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change."  James 1:17.  Also, the doctors noticed a small "lesion" on Coltrane's femur back in September that he wanted to check out.  He knew it wasn't cancer, but wanted to make sure it wasn't a concern.  The scan showed that it was still there, but that it was improving.  Dr. Mohammed said that he wasn't concerned about it.  Awesome.  

Thank you so much for your thoughts and prayers.  We are home and it is beyond beautiful.  Coltrane is on the downward slope of his treatment mountain and it feels so good.  It's been rough to say the very least.  Thanks again, and we will see you (maybe?....probably not) soon.  Have a great week!  God bless you and your families!  We love you all very much.

Please pray for Coltrane's upcoming radiologist appointment, that it goes well and the doctors will have God's supreme wisdom.  And for no negative side effects from the radiation.

Pray for Coltrane's eating habits to become completely normal again.

Pray for Coltrane's strength and balance to keep improving.

Love,

Justin,

Sonja,

Jackson,

and Coltrane the Brave