Chase spent yesterday afternoon at “his hospital” meeting with audiology and neuro-oncology. We are so blessed to be able to report that any further hearing loss is negligible and Chase’s hearing tests in the last year are virtually unaltered.
We had a good meeting with Chase’s neuro-oncologist as well and were officially granted a four month reprieve from scans and clinic – at which point, Chase will have been off treatment for about TWO YEARS. Wow – even typing that blows me away.
It was superhero day at the hospital, and our bald superhero [with his cancer-fighting super powers and his faithful sidekick “Super Duke”], decided to play it up during his hearing test, telling the audiologist: “If I get all the pieces [to this game] then I win, but if you get all the pieces, then...I STILL WIN.”
Ah, yes. That’s how Chase rolls…
-MbM-
“Super Duke” checks the headphones to make sure everything goes well.Listening to sounds and voices…Even superheroes need their vitals checked…Clinic Selfies 🙂
He took the envelope out of his backpack and placed it on the kitchen table when the days were still short and cold. “This is for you.”In a matter of seconds, I held a vision screening brochure in my hands. On the front, the words “passed test” had been crossed out in red and there was a note stapled with an exam sheet to be taken to an ophthalmologist. Chase had failed vision screening.
I’ve done many interesting things with Chase, but one of the more challenging was performing any semblance of a useful eye exam. In a paradigm where letters, numbers, shapes, and spacial agreement are all so highly relied on to diagnose, a child who struggles with all of those thing as well as memory and direction poses quite a dilemma .
Did he call that “P” a “T” because he can’t see it or because he doesn’t remember the name of the letter?
Is he saying “I don’t know” because he can’t see or because he can’t remember the words to say that drawing on the screen is a man on a horse?
Is he saying 2 is clearer than 1 because it really is or because it was the last option given and it’s the only one he remembers?
I learn in life with Chase on the regular that I take things for granted far too often. But, through a prolonged time of trial and error, we devised a system to try and put the tests into words and actions that Chase could work with – including tapping his chest on the right or left side to identify which was clearer (as he gets his right and left confused). I couldn’t help but agree with him, for, as the lights came back on, he hopped off the chair, turned around to look at us, giggled a little and said “Well, that was awkward.”
Despite the difficulties of the exam, Chase was still Chase, and at one point, for that puff of air in the eye that even I dislike, he ran a bargaining session so experienced and smooth that the tech and I ended up promising an extra glass of juice at lunch (a luxury usually only given at breakfast), iPad time, stickers, and we were about to bet the farm when he finally agreed to the terms. That kid knows how to work a room.
At the end of the long morning, as we sat in the exam room with the doctor, she looked in Chase’s eyes, looked again a little closer and longer, and then turned and asked if he’d been on steroids as part of his treatment. In truth, Chase had less than two weeks of steroids around the time of his brain surgery, but she seemed perplexed and then explained: both of Chase’s eyes were filled with cataracts and that is something she usually sees from long periods of steroid use. We concluded the eye exam with a recommendation for a local specialist to make an official diagnosis and treatment plan.
As far as this preliminary exam could be given, it would seem that overall, Chase’s eyesight is quite poor, but that he is still seeing fairly well around the cataracts at this time. Our prayer is that Chase can retain full sight and that surgery can be put off for as long as possible. We meet with the specialist in the next few weeks.
After a brief discussion with his oncology team, there is strong reason to believe this is due to radiation. More collateral damage… yet, Chase lives.
Choosing hope and thankfulness. Moment by moment.
The man looked around. “Yes,” he said, “I see people, but I can’t see them very clearly. They look like trees walking around.” Then Jesus placed his hands on the man’s eyes again, and his eyes were opened. His sight was completely restored, and he could see everything clearly. Mark 8:24-25 NLT
Chase practices cutting along a line we aren’t sure that he can actually see
There are a million ways I could classify the strength and character of my mother, but never has it been so clearly showcased as in the days of Chase’s treatment. She held him when he cried, spoke words of comfort and calm when he could find none, and gave of her home, her time, and even her rest as she’d wake extra early or stay extra late just to be able to hold him on hospital days.
We often laugh in amazement at the turns life takes and shake our heads at the deceitful notion that occasionally creeps in – the one that says we’ll somehow outgrow our need for a moment by moment life. We laugh a little because we’re continually reminded that outgrowing the constant need for grace is not something that will ever happen as long as we draw breath.
This week, the moment by moment took us back to a place we hoped never to return: to another cancer diagnosis. This time, it is not the bald one being held, but the strong one doing the holding and the color is pink. The prognosis is good and there is much to be thankful for in this first week of unfolding, but the realities of scans to check for spreading disease, surgery and treatment remain intense and imminent. We will fall again, but as always, our prayer remains that we fall towards Him who understands far more than we ever will in this life.
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.
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.
