In pre op waiting for the MRI to be available so Chase could proceed with anesthesia
After a very long day that included an inner ear procedure, waiting over an hour for the MRI, almost three hours under anesthesia, and a painful peripheral IV in the arm (instead of accessing Chase’s port), we received an early, unofficial word from the hospital last night: Chase’s MRI results were still being read, but there was no evidence of new tumor growth. However, there was still a question about the areas of fluid retention and cavernomas (effects of surgery and radiation)…
Removing the painful IV
This morning, we received the second and final call. The official word is “stable” on all fronts!
There may have been some very minor changes to the cavernomas, but nothing of concern at this point and the areas of fluid are virtually unchanged. We will have the chance to view the MRI and discuss all of this more in depth next week with Chase’s neuro-oncologist and his neurosurgeon in his routine follow ups.
Taking vitals in post op recovery – and getting to eat for the first time in 9 hours!
Praising God in awe. Some days, I still can’t believe Chase has survived 21 months after an advanced AT/RT diagnosis.
Thank you again for your prayer and encouragement as we take this…
Moment by moment.
In the car, on the way home. A long day for a very brave boy.
The shadow has descended again and I’ve found myself unable to write because of it. Three whole months have passed like the snap of a finger and once again, we stand in front of the two doors: the next MRI is in less than 48 hours.
Technically, the shadow of relapse is always with us, but we feel it ever so strongly the week before the MRI. I wasn’t going to write because I’ve had no words -only fears and fighting fears- and I’ve wanted to be silent in my thoughts and prayers until after the results are known. However, today, I was reminded to open my hands. To relinquish again the dread of the unknown to the One who knows.
So, tonight, I finally sit and write. I still fear much and fight the fear, but today, I opened by hands – a thing I haven’t done in too long. I needed this reminder that Chase is not ours to keep. In fact, none of our precious littles are. They are our entrusted treasures and we are their stewards. We’ve gathered them around us in front of the two doors and we wait… with open hands.
Moment by moment.
The earth is the Lord’s, and everything in it, the world, and all who live in it. Psalm 24:1 [NIV]
One year ago tonight, I sat on the side of our home church sanctuary, watching Darcy and Aidan finish their Awana year. In my arms lay a limp and sometimes whimpering Chase. It was the tenth day since his last chemo cycle and his counts were obviously plummeting; but masked, attached to his IV, too weak to stand and in strong discomfort, he refused to leave until he’d heard Darcy and Aidan’s names read for their awards.
When Darcy’s name was called at long last (as Aidan’s had been called several minutes earlier), he sighed, fussed, and begged to go home – his little body starting to burn with fever. Within an hour, we’d be one our way to the hospital and late this night a year ago, he’d be admitted for many days to fight infection and the chemo toll.
I’ve been thinking of those year ago moments with him in my arms all day today. And now, one year later, THIS…
Great is our Lord and abundant in power. Psalm 147:5
Abundant indeed that he who should have no memory can stand and speak, having memorized these words. I stand in awe…
The brothers eat gummies and pick late night movies to help keep Chase awake
Yesterday’s EEG -a test we were told would take 4-6 hours- lasted a full 8 hours.
This face. For an easily over-stimulated child, the wet/cold electrodes all over his head were very difficult at first.
For Chase, who was being video-monitored (in addition to the electrodes covering his head), this meant about a 2 foot range of motion on the bed…for 8 full hours.
Chase. Being still. For 8 hours. Ha.
Sleeping peacefully. An answer to prayer as sleep is an important component of the test.
Actually, he did incredibly well considering the circumstances. It was a grueling day for him and he managed it with a great attitude.
There are few things that a lollipop and coloring time won’t make better…even a head full of electrodes. 🙂
We haven’t done this test since the initial days of his diagnosis – haven’t kept him up late into the night since two days before we found out he had a tumor and I was amazed how going through the ritual again brought back the memories of those sleep deprived, scared hours when we first felt the dread of some unknown thing being very wrong with our little boy. And then the memories passed and we had a great sense of peace and even joy in the middle of the long night and day.
We hope to hear some results within the week and will be able to discuss a plan of action with the epilepsy specialist in early April. Thank you for your prayers.
For some time now, these words have refused to come out. The unknown, undefined place we’ve inhabited post-treatment has been crippling to my writing because I haven’t known what I’m writing about any more. I was reminded this week that life is a journey and my heart is to honestly chronicle my way through it – whatever it may bring. With that reminder, the words finally came and I could write out the struggle.
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11
“His counts are in normal range”; “You can return to normal activities”; “You should treat him like a normal boy”; “Not being in this hospital is good…it’s normal”… Normal, normal, normal…
We keep hearing this word; they keep using this word; but to quote the great Inigo Montoya: “You keep using this word. I do not think it means what you think it means.”
I look at Chase – at the scar, at the hair that’s trying to grow past radiated skin. I watch him – how he struggles to hear a whisper even when we speak directly in his ear, how his mood swings, how his words jumble and garble. Excuse me for sounding skeptical, but this is normal? Do normal children have to have medical clearance from teams of specialists just to get their teeth cleaned? (a true story of how several hours in my week went down)
I remember clear as day – sitting on the couch in his PICU room in the dawn before brain surgery and wishing for normal. I confronted that wish and had to put it aside. “There is no normal. There is only Christ.” And now normal is being handed back to us…and it’s terrifying.
My brain whispers that Chase could have been dead. He could have been unable to walk, unable to speak, unable to do a hundred other things. My thoughts turn to all that could have been and all the cancer children who have stopped breathing since Chase was diagnosed and I can hardly breathe myself. The anger and frustration flares… How dare I ask where we are and where we’re going? How dare I? What right have we to wonder? Is it not enough that we’re the ones who still breathe?
But we do wonder. It feels thankless and rude, but we do. We are beings created for a purpose and we chafe and fight against this normal not-normal life that at times feels so purposeless. We no longer belong to the world we inhabited pre-diagnosis. Those people have been ripped apart and rebuilt time and again with new eyes, hearts and focus. But we no longer belong to the world we inhabited during treatment. How do we use our changed lives? Where do we belong?
The truth is that I don’t know. I believe that the answer is something that is still unfolding. And while it unfolds and we wait with hope… this:
For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them. Ephesians 2:10
We were made by God for good things. Good things that He planned for us to do long before we ever breathed. He planned them for us, so we can’t miss them or mess them up. He planned them.
Breathe.
There is a plan. It won’t be normal, but it will be good.
