It’s been a hard day.  Coming off the emotional high of our vow renewal this past Saturday, today’s hard day has left me with a case of emotional whiplash. I know we will power through and I know we’ll be ok.  I remind the kids all the time:  “there’s nothing we can’t get through together.”  But even so, tonight just finds me so sad.  

Bennett’s spine x-ray is worse.

When doctors found the tumor in his chest in July 2021, the plan that was crafted for its removal included having the neurosurgeon remove the tumor tissue around his spinal cord plus an additional segment of tissue extending about 3cm into his chest.  The neurosurgeon then clamped it, and they repositioned Bennett so the thoracic surgeon could take over.  He then separated Bennett’s ribs about 3.5-4 inches to remove the remainder of the tumor.  (Just typing those few sentences reminds me of how complex his tumor removal was, and it makes me so fiercely proud of the strength and character he showed as he recovered from surgery and reclaimed his life as a happy kid just waiting for the next time he could go swimming! ❤️)

In order to resect the tumor for removal, the neurosurgeon had to do a T7-T9 laminectomy (think unscrewing the center of the switch plate from the wall, so you can put tools in the wall and work on the wires hidden inside)… but because his spine is still growing they don’t replace the middle portion of the switch plate when the work is over.  Upwards of 80% of the weight that the thoracic spine bears is done so on the front half of those vertebrae, so many times there is no problem with the spine moving forward after a laminectomy.  His neurosurgeon has been doing X-rays every 4-6 months since surgery in July 2021 to ensure that his spine maintained proper position.  All was well until last August when his X-ray showed the first sign of curve.  (15° angle).  When that occurred, his neurosurgeon referred us to the pediatric spine specialist within their practice. Today was our first appt with him.  Unfortunately, today’s X-ray showed worsening of the curve.  It now measures 22°.  In the neurosurgery world, an increase of 1° per month, is considered a fast rate of change.  (FYI: 45-50° angle is when they plan surgical intervention.)  

We have no choice but to begin the years long process of back braces for our son.  He will be fitted by an orthotist in Charlotte and will be wearing a back brace upwards of 20+ hours a day.  Bracing Bennett until his growth plates seal means we might be able to:

1.) prevent worsening of curve.

2.) avoid surgery altogether!

2.) delay need for surgery until much later in life, and keep the work that needs to be done minimal and not major.

For most boys, the timeline for growth plates to seal is around age 16-18.  The look on his face when he said, “you’re saying I’ll have to wear that thing IN HIGH SCHOOL?!”  😳

I just don’t want him to have to do it.  

I wish I could just snap my fingers and make it all disappear.  

The Lord has been faithful, and He will continue to be faithful.  His grace will be sufficient for all our needs.  I am confident that we will weather this storm as we have weathered others, but tonight the newness of this sits so heavy on my heart.  

We’d be so grateful and honored to have you join Team Bennett and PRAY:

*Commit to praying daily for Bennett’s heart and his spirit.  Pray against discouragement, specifically.

*Please pray that insurance won’t hinder our ability to get him fitted for his new brace.

*Please pray that I will remember each and every day that Bennett belongs to God; I have the unmatched privilege of being his momma, but he really belongs to the Lord. I need to trust the Father with all of his tomorrows, especially the tough ones.

Proverbs 3:5-8:

   [5] Trust in the LORD with all your heart,

        and do not lean on your own understanding. 

    [6] In all your ways acknowledge him,

        and he will make straight your paths. 

    [7] Be not wise in your own eyes;

        fear the LORD, and turn away from evil. 

    [8] It will be healing to your flesh

        and refreshment to your bones.

-Liz