The life and stories of a cancer ninja
Throw back…to the days when this covered his face and screwed his sleeping head to a radiation table. Throw back…to the 33 days when “X” marked the tumor spot and he’d whisper “I’m so brave” with a sigh as he sank into oblivion every morning. The mask has no earthly use now, but I keep it because I can still see the outline of his precious little face and every time I look at it, I’m reminded of what an incredible, awful, and somehow amazing season that was. … #tbt
-MbM-
Summer 2013
“Please pray”, the status read. The paragraph on a friend’s Facebook went on to detail the sweet little girl, a friend and a classmate, rushed to the hospital and even then in surgery to remove a brain tumor. Please pray…
“Please pray”, the man said. That same night, on our way into the emergency room for Chase, we met a friend: a brave man who rides fast and sure under the flashing lights that bring the littles to the hospital’s safe haven. He said he’d been out by us that day and he couldn’t say who or what, but he said: “Please pray.”
A few days later, I went up to the neurosurgery floor and asked… Upon being ushered into a darkened room, I saw the sweet little girl laying propped on pillows, her beautiful dark hair pulled aside; the back of her head shaved from the surgery. She had yet to regain full movement. She should have been in a classroom with her friends as she’d been a moment ago…not in this room. The exhausted, shocked look in the parents’ eyes mirrored feelings I remembered all too well in those initial days and I asked what we could do and they said: “Please pray.”
On a crisp Fall day months later, the last of Chase’s chemo days, I saw the mom of the sweet little girl in the hospital hall and we hugged and spoke of the future. She asked me what was ahead and I told her my heart and said: “Please pray.”
Just a few days ago, the email came. The treatment for metastatic medulloblastoma was complete and the sweet little girl who fought since that first Summer day would soon be free of the hospital life and we prayed with great joy that night.
And then came the news. A late night fever of 105. A sure sign that illness and infections had set in on a tiny body that knew no immunity. Too soon after the chemo, there was nothing left with which to fight and the medical minds began the rush against time and infection to understand. Yet she fights! Though the situation grows more serious and she moves to the unit for intensive care, she fight on! And I asked her mom – her strong and amazing mom who clings to hope and faith in extraordinary, awful circumstances – what can we do? …and she said: “Please pray.”
Please pray for Kayla.
Moment by moment.
I believe that I shall look upon the goodness of the Lord
in the land of the living! Psalm 27:13
Long before his birth, the adults around him had prayed for a building in which to have their church. Now, the prayer was answered. The old building had been stripped and tooled, fashioned and made new by the loving hands of the community, all but ready for the gathering. The flooring has yet to be laid and the pastor gathered them and challenged… Write. Write a prayer on the floor before it’s covered. Write your heart in faith for what God will do in this place. And so the 8 year old boy crouched on the cold stone and wrote the prayer that came to his heart…
They say that love can heal the broken, they say that hope can make you see. They say that faith can find a Savior if you would follow and believe…with faith like a child. -Jars of Clay
Moment by moment.
CLEAR! Praise God the MRI is CLEAR!
We are so blessed to get to walk through Door #1 this February day!
After being warned of almost imminent relapse and today being a significant milestone to reach without threatened relapse, Chase has once again surpassed expectations with “the shortest radiology report” they’ve seen in a while. His brain and spine looked great and there was literally nothing to report.
We are so thankful for all the love and prayers as we waited this news in silence.
God is good.
More to follow…
Moment by moment.
“The prognosis for AT/RT has been very poor, although there are some indications that an IRSIII-based therapy can produce long-term survival (60 to 72 months). Two-year survival is less than 20%, average survival postoperatively is 11 months, and doctors often recommend palliative care, especially with younger children because of the poor outcomes.” -Wikipedia on Atypical Teratoid Rhabdoid Tumor
Tomorrow, February 6th, is Chase’s first truly post-treatment MRI. The first real chemo-is-all-out-of-your-system, three-months-without-a-single-drug-to-guard-against-relapse, have-your-sleep-patterns-changed, why-did-you-forget-that-word, you-fell-twice-yesterday… MRI.
Tomorrow, there will be two doors. Behind Door #1 is the clear scan and the sigh of relief and the three month wait until next time. Behind Door #2 is relapse and all the possibilities that it brings. Writing that thought down leaves me sick to my stomach, but the truth is, we’ve known about Door #2 since the early days of August 2012. So, even if it comes to that horror, there will likely be few surprises.
People say in mistaken comfort “Yes, but what are the chances…?” For a parent of a child that only ever had a hairs-breadth percentage of getting cancer and this cancer and surviving this cancer, the chances hold no comfort at all.
The only comfort is in knowing that I am invited to bring my worry to God, and then not worry about it anymore, because He will guard my heart and my mind. The only comfort is knowing that all of our days were counted and known before we ever breathed, that we were fearfully and wonderfully created, and our very souls cry out with that thought. The only comfort is knowing that all our pain and suffering is but an earth-moment, and then we’ll stand in the presence of our Savior, understanding the promises and knowing no more pain or sorrow or tears–only closeness to Him forever.
I know those truths. I believe those truths. But as I stand in front of these two doors, my heart is still heavy… what now?
“The Lord will fight for you, and you have only to be silent.” Exodus 14:14
Silence? My make-it-better, make-it-stop, never-give-in heart wants no part of that. Silence is accepting defeat. Silence is acquiescing… isn’t it? Being silent is one of the hardest things for me to do, yet I’m called to do it in this moment. And as I obey, not speaking becomes speaking. The quiet becomes loud. We will watch and see what unfolds as we remember how far we’ve come, and know beyond a shadow of doubt that the same grace that covered all waits always, ahead of us, behind any door.
The doors are in place as they always have been and will be… The right thoughts are known and remembered time and again… and now?
We wait for what He will show us in His time.
We are silent… Moment by moment.