Ellie

Stable

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)…

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! — 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.

Open Hands

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]

Abundant In Power

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…

Moment by moment.

Chase’s Best Shot

I’ve recently been on a slight writing hiatus. To quote someone I spoke to recently: “That’s good because it means there’s nothing new to write about, right?” …well, almost. 🙂

In truth, my most recent time for writing led to a synopsis of Chase’s story – which was published on a different blog. I had the honor of being able to share Chase’s story and stats with the St. Baldrick’s Foundation and having it be published on their blog!

If you have never read the story, or if you’d like to read it again, please click: “Chase’s Best Shot“.

Chase with Dr. Rishi Lulla, a St. Baldrick's researcher and Chase's attending neuro-oncologist at Ann and Robert H. Lurie Children's Hospital of Chicago. — Chase with Dr. Rishi Lulla, a St. Baldrick’s researcher and Chase’s attending neuro-oncologist at Ann and Robert H. Lurie Children’s Hospital of Chicago.

~MbM~

EEG Update

We received a call yesterday about the EEG results. In almost eight hours of monitoring, they weren’t able to capture a single seizure. This is a HUGE praise!

Despite this really great piece of news, Chase’s EEG is still “abnormal”. The person I spoke with said that some of that is to be expected as parts of Chase’s brain were removed in surgery – because of this, his brain will always read “abnormal” these types of tests. However, there may be an aspect of the results that cannot be attributed to previous brain trauma. This is the part that was unclear. We have been told that this will be something to discuss in further detail with the specialist at our meeting in about three weeks.

We are so thrilled that there were no seizures, but I spent a good part of yesterday afternoon just working through the word “abnormal“. As I’ve recently written, this concept of “normal, but not“, has been a difficult paradigm to optimize. Hearing the word “abnormal” yesterday afternoon just brought back all the questions and many of the frustrations.

We look forward with hope to this meeting in a few weeks and acknowledge that there is never a time that we’re not in desperate need of moment by moment grace.

And Chase is always and forever Chase – about once a day, he turns to us and says “Hey! Remember the stickers on my head? I did that the other day and I was so, so, so brave!”

~MbM~

Chase and Aidan after walking with St. Baldrick's in Saturday's parade — Chase and Aidan after walking with St. Baldrick’s in Saturday’s parade