Unpacking Our Bags!

On November 5, everything in our world changed, again.  And honestly, although I was praying for exactly what happened to happen, I didn't expect it.  I didn't expect God's miracle to be so excessive and sooooo soon.  I was praying for God to HEAL JAX's BONE MARROW and on November, 5 God DID just that and Jax came home FOR GOOD.  Jax's count recoveries were so crazy miraculous that what happened could only be explained by a MIRACLE WORKING GOOD GOD!  It still blows my mind and heart, and will for all of eternity.

Since then we have all been home.  We have had appointments at Children's, but have not had any unscheduled appointments, no ER visits, no fever watching ...  Jax's recovery from this last round of chemo has been astounding, shocking, as it's been his best recovery yet.  That's crazy miraculous as it was his last round of chemo, his body having already taken so many beatings from all of the chemo he has had.  It doesn't make any sense.  It should not have gone so smoothly, yet God did it, He did another miracle.

Sam and I drove down this past Thursday for a day of clinic appointments, including a spinal tap, and spinal chemo injection.  About half way through the drive we both looked at each other and said, "how did we do it?"  It is surreal everything that we have walked out.  The truth is, by the GRACE OF GOD WE DID IT!  In other words, HE DID IT!!!  18 months ago our world fell apart when we got the news that Jax's cancer was back as we had just begun the paper chase for him, he was still in China.  He came home literally and miraculously two months later and was cancer free until September of 2015, where once again our world was turned upside down with tumors growing in his eye.  The team at Children's treated it for months until that day in April of 2016 when again everything changed.  Jax went completely blind and what followed was a bunch of tests that showed his cancer had spread outside his eye.  What followed was a journey of being separated as a family, the last several months being the hardest months of my life.  So much has happened, so many doctors visit, so many ER visits, so many chemo treatments, soo much of too much.  We have lived apart as a family, me consistently "leaving" my other jewels.  Not many people know all of the details of everything we have walked, I know the details.  It feels as if only a few people got a window into what became our norm.  My heart holds many emotional wounds and scars from the last year and a half, things that God is going to have to heal, things that only God can heal.

As I have unpacked our hospital bags, what I'm realizing is that I'm simultaneously unpacking my own trauma cancer bag, and that of my other 8 jewels, as well as Jax's.  That is a lot of wounds, that is a lot of "ouies in our hearts."  This has started to be my prayer with the kids, Jax even praying it for himself.  It is the sweetest thing.  Part of my heart is to MOVE ON, but this cannot happen without the necessary healing that needs to take place within all of us.  There are so many layers and dimensions to all of what has happened in all 11 of our lives.  God is going to have to again show that He truly is a miracle working God, as all of us need miraculous emotional trauma healing.  It manifests different in each one of my jewels.  An untrained trauma eye could see defiance, anger, disrespect, drama, lack of motivation, laziness, and aggression.  Instead I see 9 precious jewels who all have been through too much.  I see 9 precious jewels who have been without stability since May, who have been literally and physically without two nurturing emotionally present parents, all the while having to constantly be wondering if their brother is going to live or die.  I could go on, all to say that too much has happened.  As most life and death medical journeys, the cancer journey is an emotional and medical roller coaster.  When I see the trauma of this acting out in our jewels, I'm quickly reminded that they are simply acting out exactly what I'm feeling (it's just that I'm a grown up and on most days I'm able to navigate our trauma life in a self-controlled kind of manner as I've had 42 years to practice life coping skills).

Yet as WRECKED as all eleven us behave on some days, I simultaneously am profoundly aware of how well we are all doing considering all that has happened.  This is a beautiful messy miracle, that our hearts can be so broken, yet simultaneously I feel my Jesus closer than perhaps I ever have in my life.  I can honestly say that throughout the last year I have consistently felt His goodness in the midst of the crazy roller coaster journey that defines cancer.  He has held me in times of desperation, isolation, and loneliness.  He has been there when others haven't been.  He has been there when I thought I couldn't go on.   It has been literally in those times that He picked me up and carried me.  Even as we were confronted with the very real possibility of Jax not beating the beast that is cancer (in August), God's very real and loving presence was felt.  God's goodness never left me.  The same is true for my jewels, their brave spirits despite all of what we have walked is mind and heart blowing.  Despite all the struggles, I'm so proud of them.  I praise my Jesus for this, as it's as a result of His protection and covering.

Jax's spinal tap this past Thursday came back clean for cancer, not even a speck was evident.  We also got the approval on Thursday for Jax's to have his Hickman line removed.  This is HUGE, we are SO EXCITED.  We are waiting for a date to become available and scheduled.  We were hoping for December 20 (they only do them on Tuesdays), December 27th seems more realistic.  January 12th will be Jax's FINAL spinal chemo injection, this is what our doctors just shared with us.  They also shared that instead of doing an MRI and Spinal tap every 3 months as typical with cancer follow up, they are going to do it every month for the next three months starting in February.   As I've shared before Jax's cancer is 9 times as aggressive as other kids with the same type of cancer, our doctors consequently want to stay on top of his case.  This new plan does not increase my worry but instead makes me feel relieved.  I still believe that "God has it covered."  This is what He told me and this is what I will hold on to until He tells me something different.  Radiation has been taken off the table, our doctors do not feel that this is the best decision for Jax for right now.  Nor do we feel this is what our Jesus is wanting us to do.

LISTEN TO THIS THOUGH YA'LL!!!  On January 14 we will be packing our bags again, as all 11 of us will be going on a trip.  Whaaaaatttttt!!  Very early on in Jax's cancer journey our doctors sent a referral to Make A Wish for Jax, and very early on we were told that Jax was eligible and would receive a wish.  We didn't have to do anything and literally got a phone call one day that Jax would be receiving a WISH!!!  In just a few weeks, all of us will be going to Disney World as part of Jax's Wish and will be staying at the Make a Wish resort for 6 sleeps!!!  Be still my heart!!!  I'm beginning to wrap my brain around this, it will be sooooo good for all of our hearts.  My prayer is that Jesus would use this to bring closure to all that has happened, and to provide healing and celebration.

I know I've said this before, but THANK YOU SO MUCH to all of you who have been a part of our Jax force.  Whether you have prayed for Jax or us, provided a meal, done a fundraiser, done our laundry, provided for our family financially ... we could not have done this without you.  It is astounding to me the MIRACLES that God has done through so many of you.  It could fill up literal pages of a book.  If we haven't thanked you personally, know that we are genuinely beyond thankful!!!  You have blessed us beyond measure, we will be eternally thankful to our Jesus for the way He has used you in our family.  You've been the literal hands and feet of Jesus to us, you are part of our story, of walking out this miraculous cancer journey of our precious Jax!

PLEASE continue to pray with us for our Jax, that God would continue the MIRACLE He has done and that cancer would forever stay away from Jax.  PLEASE also continue to pray for trauma healing for Jax and all eleven of us!  Thank you Jax force!  PLEASE also pray wisdom for us as we navigate Jax's new life of being blind.