Where We Are with Jax!

I can look at Jax and with an instance have tears form.  He's been through so much!  He's lost so much!  It doesn't seem fair that a little boy has had to suffer so much.  Cancer has taken so much.  My other jewels can complain about something that used to not bother my heart but now my heart instantly feels triggered.  Please be gracious with me as I adjust to life after cancer (although it will be many years before the journey is completely over).  Images of my own son suffering will never leave my heart, images of his body and heart so frail, the effects of chemo proclaiming its damage.  Images of so many other children going through the same things, all of their cries, their screams, their physical wounds, their eyes that tell their stories of fighting the Goliath that is cancer.  Part of me wants to move on and live the life that's been put on hold for so many months.  Yet all of me wants to never forget all of what I've learned and seen.  It is a fragile balance that makes returning to life as it was almost impossible.  Even if it was possible my heart and soul don't want it.  I want to live a different life.

I've had many people ask me when I'm going back to work.  I don't know.  I was scheduled to go back January 1 which now is just not doable.  Jax's medical needs are just still too many.  Then come the needs of all of the other kids, which have essentially been hold. The emotional trauma being even greater.  Financially we can make it work until the end of of April.  Ive had lots of sick days donated by other staff within the district and there still is money left from all the money that was given.  This however leaves 4 months of not having the finances we need, my income being an integral part of meeting the needs of all 9 of our jewels.  I'm seeking the heart of my Jesus in what to do.  Working as a school counselor with at-risk jewels truly is part of my calling and is something that I've had to totally detach from this last year.  It is something I love to do and it's something that is a big part of who I am.  Since Jax's cancer, Jesus has asked me to surrender it.  I'm trusting my Jesus to make then next steps clear.  What He's however especially re-taught me throughout the last several months is that He will be faithful.  No obstacle is too big for Him.  He can handle it all, including big financial gaps.  God has not only provided but has richly blessed our family throughout Jax's cancer journey.  I had no expectations, and so what He has done has blown my heart and mind.  He's a nurturing, detail focused, loving God.

Jax has an MRI and CT scan this Monday, your prayers are appreciated.  The doctors will check for tumors and will also look at the 9 nodules (fungal infection) that have been present in Jax's lungs since June.  I feel as if we can only focus on a little bit at a time, and still only make plans for the very near future.  Jax will also have blood work done on Monday.  We are expecting things to go well on Monday.  We are expecting our Jesus to continue the miracles He has begun.   We should have a date soon (for Lord willing before Christmas), for Jax to have his Hickman taken out.  This will be huge as the Hickman still put Jax at great risk.  Jax will have about 3 more monthly spinal taps and spinal chemo injections.  Jax is also still finishing antibiotics for another infection that he still needs to clear.

A major thing for Jax these days is eating.  It's taking on average 1-2 hours each meal to feed Jax, even with him really trying and staying positive.  You can imagine the demand this puts on either Sam or I.  Since June, since getting the feeding tube put back in, Jax has essentially not being able to eat regular food.  He has had no appetite and has been nauseous more time than not. In addition, he's not been able to chew any regular size food without throwing up.  He is essentially having to re-learn how to eat, now also without being able to see, having to overcome the trauma of his own fear of throwing up when swallowing food.  He's continuing to be a champ and has not lost weight during the last few weeks of eating again.

We are going to have to learn to continue to choose joy regardless of our situation.  For the next 5 years Jax will continue to be tested for cancer, for the first two years it being every 3 moths.  Jax's case is unique as it's 9 times as aggressive as other kids with the same cancer.  We are going to need to stay on our knees, asking our Jesus to continue to keep cancer away from his little body.  Jax will still need the miraculous healing touch of our God.

As of a couple of weeks ago, radiation has been taken off the table.  There's much that could be said but for now I'll leave it at that, all to say that our doctor heard our hearts.  He also agrees with us and feels confident in this being the best decision for right now.  The pros of doing radiation essentially balance out the negatives of doing it.  It's a tricky balancing act for Jax's unique case.  He reiterated that if there's any sign of cancer, "radiation will need to happen immediately to save Jax's life."  We've talked to many of our doctors, they all have without hesitation said that they lean towards not doing radiation.  When we ask our Jesus, He's telling us, "I got this."  Our Jax also seems to be done being brave, he's emotionally spent from all that he's gone through.  It's all been too much!!  This weighs into the decision too.

It's thanksgiving and there's so much to give thanks for.  My Jesus has blessed my life enormously.  I don't say this loosely.  I've not only walked through the halls of a cancer unit carrying my own son, I've also had so many other experiences that shout at me of how profoundly blessed I am.  I've seen the inside of orphanages, filled with orphan jewels, some of who will never have a family.  I've been to third world countries, where the poverty I've born witness to is hard to fully comprehend in comparison with our over excessive North American life.  I've lived in the inner city and have seen the injustices that exist there for incredible jewels and families.  I've read Police reports and heard the stories repeated by sweet jewels here in the US, that have experienced domestic violence, and other thing that no one should never go through.  I've walked some of my own jewels through trauma, that is at times unbearable and is too much.  I could go on and on, all to say, my heart fully understands the depths of God's blessings in my life.  Everywhere I look I truly see blessings and gifts, thank you Jesus!

I look at Jax and I see BLESSING and GIFT!!  And to think, I could have missed out.  I could have let my fears rule my decisions instead of God's voice.  I could have let my desire for comfort and convenience rule my mind instead of the passion for orphans that God has put on my life.  I could have stayed bitter at the hard of all of the trauma we've had to walk out with some of our other jewels, and are still walking out, instead of seeing that each one of their healing journeys is different yet still miraculous in their own right.  I could have stuck to the plan I had for my life instead of surrendering it for my Jesus's plans.  I could go on and on ... 

"I fall down upon the ground,
press my face against the art.
Till my heart it rises over my head
As the wheat it bows down low
When the autumn wind blows
I kneel before the one I love

Find me grateful
Find me thankful
Find me on my knees
Find me dreaming
Find me singing
Find me lost in your grace

Like the dust that you first held
In a garden where you knelt
Pull me up against your face again
Till the breath of your hope
Fill the depths of my soul
Till all I know is I've been found by love."

Ya'll I'm deeply loved and cherished by the Creator of the Universe.  This is not lost on me.  He wants the absolute best for me, and for each one of my jewels, and my sweet hubby.  This is not lost on me. My God is completely faithful, and completely good all the time.  This is not lost on me.  He has deeply blessed my life, each day of life being a sacred gift.  This is not lost on me.  He has done miracle after miracle after miracle in my life.  This is not lost on me.  

Ya'll, He feels the same way about you!  Ya'll, He's got amazing plans for you too!  Ya'll, He's trustworthy with our good, bad, hard, and ugly!!