For years now, Chase has fought me on his age. On some level, the last year he remembers well is the one he turned two, right before the tumor. For years now, as I’ve told him the next numbers, he’s insisted that he was still only two. I finally got him to admit to five, but it’s usually a fight. But just last week, he came and plopped down next to me on the couch. “Mom, I’m ready.”
“Ready for what?”
“I’m ready to be six. I know it’s six now and I’m okay with it. I’m ready.”
I smiled and kissed his fuzzy head. “That’s great, Chasey-bear.”
“And Mom, after that, can I be seven and then eight and then nine?”
Yes, a thousand times, YES . . . please.
Today, my precious, stubborn, tenacious, beat-the-odds, stare-it-down, never-say-die, don’t-mess, you-and-what-army Chase turns sixwith great joy.
And I’d love to reflect at greater length, but the present is waiting right next to me and the present has his birthday crown on and he’s begging me to open gifts. He asked me to share that he’s “thankful for Bapa and chicken and that he likes his birthday and his presents.”
We are so thankful for another year of life . . . moment by moment.
We sat in the room for almost two hours and dialogued on how the brain works. Chase fell asleep in my arms as Bob and I sat with the epilepsy specialist, discussing the EEG results and asking our questions. The human brain is an amazing place; full of energy and a fragile balance that the slightest thing can disrupt at any time. Marvelous and scary.
Despite Chase’s anti-seizure medication having some issues, after two hours of discourse and answered questions, we were counseled to stay the course. We were told that Chase’s brain was still too close to it’s trauma and needed to be protected from itself. Because Chase’s behavior was stable, we were to stay the course, increase his vitamins and call in three weeks to follow up.
[We were also re-briefed and updated on monitoring for any sort of seizure and the actions we should take if we ever observe anything. This included a seizure crash kit of sorts that travels with Chase at all times…just in case.]
May 2, 2014
Three weeks came and went and even with the extra vitamins, the aggression issue didn’t seem to improve at all, so, despite the continued need for neuro protection, the specialists conferred and decided to try reducing the anti-seizure medication. It’s only the tiniest bit (literally only a half of a milligram on one of the two daily doses), but over the last four weeks, we’ve seen a little improvement!
We’ve had some really encouraging, productive conversations with his teams of doctors and are feeling heard on this issue, however, there’s still much left to understand. Nobody knows for certain if what we’re seeing are the effects of medication, or radiation, or tumor, or being forced into an adult life at age two. The one thing we know is that whether we’re in a hospital room with specialists or in our home, with our family, working through a difficult moment; pursuing answers will be a marathon; not a sprint, and only time will prove…
We would so appreciate your continued prayer for wisdom and discernment as we continue to approach who Chase is and how to best care for him in all his facets of this special life.
Moment by moment.
Hear me, O God, when I cry; listen to my prayer.You are the One I will call when pushed to the edge,when my heart is faint. Shoulder me to the rock above me. For You are my protection,an impenetrable fortress from my enemies. Let me live in Your sanctuary forever; let me find safety in the shadow of Your wings. Psalm 61:1-4 (The Voice)
Today is a day we set aside to count our blessings and stand for the fighters. We stand for Julia and Phoebe and Cal and so many others who won their fight and are finally home. We stand for Matthew and Mia and Lucas and Zeke and so many others who continue their fight right here even now. And we never give up. Because there is strength and purpose in what we’ve been given (horrible as it is) and we believe that someday, whether in heaven or on earth, there will be no more cancer. So we mark this day and stand.
On several occasions, I’ve referenced Chase’s central line, his weekly labs and his dressing changes, but today, I’ll be a little more specific. This morning, we took pictures of Chase’s dressing change. The hope is that he could see what’s happening from a different perspective and that it would help him overcome his anxiety.
I need to preface these images by saying that it is necessary to hold Chase down with very little mercy for his own protection. Despite months of talking, processing, and role playing, he becomes protectively enraged, and rightfully so, when anybody even gets close to his line and he must be still for a successful change. When the dressing is off, one can’t even breath in the direction of the line without risking contamination…hence the nurse’s mask and our heads turned away from the uncovered site.
As I debated whether posting these pictures serves a helpful, edifying purpose, I decided to write this piece and use the pictures because this is part of our every week and even if you must look away (and I wouldn’t blame you if you did!), I hope it will encourage you how to pray for Chase (and his family) in more specific ways.
Stripping off the old bandage
After being restrained on a flat surface by no less than two people (but preferably three…or four), Chase’s old bandage is stripped off. This is without question the most tedious and the longest part of the entire procedure. This is an area that we hope and pray tubes in his ears will improve. When he’s screaming at the top of his lungs, he is unable to hear our assuring, calming words in what I can only imagine is a complete nightmare for him.
The central line
Here is a great and close view of his central line – and his poor and chapped skin, raw from months of bandages and tape. These moments after the bandage is stripped when the line is completely exposed (while being cleaned and dried) are some of the most scary to me. He struggles the hardest at this time and I find myself thinking that it would take so very little for him to pull it out – risking infection and embolism.
Laying the bio-patch
After the line site is cleaned and dried and the nurse changes her gloves (this is how seriously sterile the care is – the same gloves that strip and clean the old can’t lay the new), the re-dressing begins with this bio-patch: a medicated, padded piece that releases antibiotics to keep the line clear and safe. Chase calls this his “donut” for obvious reasons. In this picture, he was beautifully silent and calm for a breath. More often than not, he screams “Band-aid! Band-aid!” as he knows that the last step of the change is the bandage and he desperately wants to be done.
All done!
And then the bandage and tape are on and it’s done! It’s hard to explain the flood of relief as we sit him up, sobbing and laughing at the same time. Another week without mishap…thank you, Lord. The entire process takes less than 15 minutes or a couple decades…depending on which body part you’re restraining.
The “Taco”
In our house, because it’s Chase, we reinforce the dressing with an ace wrap. The wrap, his “taco” (because of how it wraps around him like a burrito), is never off except for dressing changes. We learned this the hard way after losing a line in the Fall.
Five minutes later…
And then it’s five minutes later and the fight is a distant memory. He loves everybody again and he’s busy watching a Disney show on his iPad while Phyllis, his home healthcare nurse draws his labs. And by the time she leaves, he says“Bye, Miss Phyllis! Thanks for changing my donut!”
In closing, holding him down and watching him fight against this simple facet of care each week is extremely intense to me, but I am always so encouraged that this, this is the level of fight he brings to the cancer battle. Almost makes you feel sorry for any tumor willing to take him on, doesn’t it? 🙂
