Category: Family

The call came early this morning.  Chase’s brain and spine look wonderful, except for the area that’s being watched in the initial tumor bed…

The bad news is that the small, cyst-like areas have grown again.

The good news is that the growths have maintained their cyst-like quality and at this time, the consensus is that they pose no threat and are consistent with damage, or “effects”, from Chase’s radiation days.

This is great news, but at the same time, it’s hard to hear on some level because we find ourselves in a state of distrust, not towards our doctors, but rather, towards an aggressive, malignant disease.  We find ourselves asking how, short of a pathology report, how can they be sure this isn’t ATRT laying dormant and waiting to explode into tumor?

For now, the full answers unfold with time alone, and so, we find ourselves deeply, purposefully thankful for a stable report, another scan reprieve of three or four months, and no known cancer in this moment.

Thank you for all your encouragement, love and prayers this week.

-MbM-

The sedation doctor bent over the bed to peer into Chase’s mouth and while he complied with an open mouth, the doctor made conversation: “So, are you married?  Do you have a job?”, to which Chase giggled and exclaimed “Ew, gross, no!” to the first, and “Yes, my job is to make my bed and clean my room.” to the second – and oh, how I wish I had that work promise in writing.

No MRI news to date, and none expected at the moment, but a great answer to prayer in this moment is that Chase did very well under sedation and that the procedure itself went well.

It will take anywhere from a few hours to a few days for the full effect of the sedation drugs to wear off and in the meantime, somewhat sedated Chase is making things interesting.  He’s unsteady on his feet and when I tell him to turn left and he slowly and deliberately responds: “No Mom, I’m going to turn left.”  🙂

He was so proud of himself for doing well with the scan as well as the needle in his arm for labs and IV fluids.  We are so thankful for the good day even as we continue to wait under the shadow of unknown results.

Thank you again for walking this road with us…

Moment by moment.

 

 

Standing in front of two doors…

On the edge of a cliff…

Holding life with open hands… all these metaphors and so many more come to mind (and have come to life on these pages) as I consider another MRI in the morning.

By my very rough count, Chase has lay in “the tube” and been scanned over 20 times, and on the one hand, preparing for the experience feels almost as routine as running to the store for milk, and on the other… well, really, really not routine.

Chase stayed home from church today in order to protect him from any germs that might interfere with sedation tomorrow and for a minute, we sat in the sun on the back porch with the blooming trees all around us and I asked him what to write and what he’d want to say.  He shrugged and said “I don’t need to say anything.  You can say it, Mom.  Just write about cancer and my baseball and the MRI – that I would be brave and not be afraid.”  So there it is… Please pray for Chase to be brave and not be afraid as he goes in tomorrow.

Despite all the experience, tomorrow will still be a first.  At the suggestion of his doctors, to reduce stress and the hours spent with no food or water, we are going to attempt an MRI at an outpatient facility (his first full scan not done in the hospital), using sedation instead of general anesthesia.  Our hope and prayer is that his little body will take to the new medicines well and that he’ll be able to fall into a deep sleep and stay there for upwards of two hours.  We were told that there are only a small percentage of children who don’t take well to the procedure and need to be transferred back to the main hospital for future scans, but as ATRT parents, we eat “small percentage” for breakfast every morning, so it really didn’t come across quite as comforting as we know the nurse meant it to be.  Also, it’s Chase… 🙂

So, as always, we go forward …

Moment by moment.

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

Our dear friend John teaches Chase’s class at our church and is an amazing runner. He stopped by to see us and gift Chase with the first medal from his first marathon many years ago and this coming Monday, as Chase lays in the MRI machine, John will be on the ground in Boston, running the 2015 marathon. We are so proud of him and are so humbled that he does this in honor of Chase.

“There’s a cloud of witnesses, the ones who’ve run this race, and even louder than my fears they’re crying; ‘Warrior, lift your face, and keep running, keep runnin’, don’t lose hope, don’t you give up now, don’t turn around, you’ve got to find a way to just keep reaching, keep fighting, the pain does not compare to the reward that will be yours, that waits in store for those who just keep running.” A Pilgrim’s Progress, Matt Papa