CHASE AWAY CANCER

Someone To Know Me

He’s afraid of almost nothing outside the hospital, but he hates change like the plague. I mean, knock-down, drag-out, hates it straight up. One time I changed his bed without telling him and he lay on the floor and screamed until I could persuade him that new sheets weren’t the end of the world. And I tell you truth when I say that I’ve just gotten him to wear shorts in the warm weather and not steal his winter hat onto the school bus in the June 80 degree days because he doesn’t remember wearing shorts last summer and all he has in his memory are long pants and winter coats.

Everything I’ve ever read about a brain hurt by surgery and tumor says this is not uncommon. It takes longer to adjust and more to cope and the little things are always very, very big. If there’s no mental paradigm for something, it’s usually treated with anything from caution to outright hostility.

Three weeks ago now, Chase was to start summer school, but we sent him to vacation bible school at the church for the first week instead. He wanted to be with his siblings and, his life being so different as it is, I couldn’t refuse him this opportunity.

The Monday morning of “VBS” rolled around and suddenly, he didn’t want to go. When I asked why not, he would evade by screaming about something or simply leaving the room. Finally, he calmed down, crept back into the kitchen sheepishly, and sighed. “Are you ready to talk now, Chase?” He nodded and then whimpered quietly. That sound meant only one thing: Chase was afraid of something.

We sat cross-legged on the floor of the kitchen and talked until I realized that all the screaming had been a sabotage of sorts because while he knew the church and the people, he didn’t remember “VBS”…something he preferred to refer to as “PBS” or “PBS.org” (for real), and because he didn’t know it and couldn’t account for it in his brain, it terrified him.

As we talked, I asked if he wanted to pray and he nodded silently and so we prayed that God would give Chase peace. I said “Amen” and his head shot up with a quick question. “Mom? Will you pray that my teacher would be somebody who knows me? Please? I need somebody who knows me.” Not just someone that he knew…no, someone who knew him.

An hour passed and as we walked into the brightly lit auditorium, I watched Chase lose his fear to intrigue as he took in the jungle set and the replica of Mount Kilimanjaro (a part of the week’s theme). We walked forward to find his seat and at the end of his row, checking the children in, was his 2-year-old Sunday school teacher, a beloved woman who taught him that God is good and glorious and always with us and she said it so often to him from the day he turned 2 that when he lay on pre-op beds and in hospital rooms, when all else pushed aside in his fear, it was those words from the Sunday school room – “God is near me” – that would come to him and he’d sing them softly as he’d wait for the doctors. This was the woman who’d walk him through the week.

I’m putting this story down for you to read because I often fall into thought that finds the hard things unjust and the good things deserved and the small things somehow just getting ignored. So, I’m writing this here and now because life comes with crazy ups and downs and sometimes, I forget to hand the small things over to the One who knows and when I do remember, I’m often too busy to record exactly how He surrounds and blesses. Chase prayed for someone to know him.

Stopping to be thankful… moment by moment.

Still Being “Me-Me”…

Some time ago, I wrote that we were given reason to believe Chase might have cataracts. As only Chase can, he went about the final diagnosis in the most interesting way possible, going “for broke” in the eye department last Monday – having contracted pink eye over the weekend before his meeting with the specialists.

The morning turned into a typical Chase-at-the-doctor type morning, logging in several hours start to finish, one bargaining session [“Come out from under that chair, Chase…I mean it, Chase…], and at least one good, old-fashioned three-people-to-hold-him-down moment. Can you imagine having your eyes dilated in the middle of rampant conjunctivitis? Chase could not. [And to be fair, I wouldn’t put it on my wish list either…] Whether it was the feeling of light sensitivity, not being able to see, or actual discomfort, I’ll never know, but he didn’t stop screaming for nearly two hours after the appointment and only stopped when he fell into an exhausted sleep leaning on my shoulder. It was a Monday for the ages…

The less than great news is that Chase does indeed have cataracts and his vision is quite poor. The cataracts are being attributed to his radiation treatment.

Radiation – the very thing we elected to do when chemotherapy alone wasn’t working to take the cancer from his body.

Radiation – the component that very likely saved his life.

We knew these things might come. We’ve known them from almost the same day of his diagnosis, but that doesn’t mean it doesn’t hurt like a punch to the gut when you see him sitting in the chair, or hear the outcome and know it’s because of decisions you made.

This is the hard part of Chase’s life and treatment – the offered doors are two: death, or damage. To date, there is no third door for AT/RT.

However, even with all the difficult, there is really good news, too. Though Chase needs glasses and will need to be monitored every few months for the foreseeable future, the doctor on his case indicated that Chase is still able to see around the cataracts and that surgery is not a necessity at this time. We realize that cataract surgery is not a big deal as far as surgical procedures go, but when your anesthesia stats are in double digits already, it’s nice to be able to prolong yet another time going under and more work being done.

Chase is very concerned about his need to wear glasses. He keeps asking me if he’ll be able to take them off at the end of the day and go back to being “me-me” – the phrase he’s using to define the real him – as if the wearing of them will turn him into somebody else. We keep assuring him that he’ll still be Chase even with the glasses on his face and that many people around him – many that he knows and loves – all wear glasses. The glasses won’t change his person, just his sight. And given how poor the number on his current vision is, we look forward to opening up life for him and allowing him to see more. As always, we’ll take it…

…moment by moment.

Even superheroes get pink eye... — Even superheroes get pink eye…

The End Of A Moment: Intersecting Lines

You guys, for real… On Friday, Chase finished preschool.

I know people are always wishing that their babies would stop growing up and moving further on and away with their lives and I get that, I really do, but in Chase’s case, I love the growing up because it’s what life is about and there have been days and seasons when I didn’t know if we would have those life chances with him.

And for real… this is the kid that I held when he was too weak to walk, and I balanced him when, at age four, he learned to jump on two feet, and I sat with him as he diligently traced “exes” and “crosses” on paper – because intersecting lines were something his brain needed to work hard to figure out. Chase has gone from all these challenging places to taking the intersecting lines and spaces and forming the letters of his own first name.

He holds it in his hands here – not “Last Day of School” or anything else, but this, his name – a part of who he is.

For weeks now, he’s practiced and traced and when I asked him if he’d put it on the sign, he asked me if it had to be perfect, because Miss Marlene, his teacher, said it didn’t have to be perfect.

But, see…? It is perfect, the whole moment is perfect because it’s Chase and he’s gone further than anyone dared hope.

We are so blessed. Moment by moment.

And It Comes Yet Again… UPDATE

She’s out and she’s amazing. The surgeon said she handled surgery and anesthesia like a pro.

The biggest joy in this is that he also removed and tested several lymph nodes, all of which were negative for cancer, so, pending the official pathology report, it would seem that while the cancer is invasive, it never spread further than the breast. We are deeply thankful for this really, really good news.

She went in with great strength this morning and said she felt “wrapped in peace” – this woman blesses me all the time. The biggest prayer tonight is for rest and sleep as she is pretty uncomfortable and hooked up to a lot of things.

Today was completely crazy, but a good cancer day.

-MbM-

And It Comes Yet Again…

And it comes yet again… the hours before a loved one’s surgery…

There was one night when I was very small that I sat, crouched in the dark hall, huddled on the old, brown carpet outside the door and listened quietly. I’d been wakened from a sound sleep and I knew if I were found, I’d be in trouble for getting out of bed, but I couldn’t stop myself from coming close to hear. My mom was on the other side of the door and she was ill. She’d gotten out of her bed and tried to make it across the room and, feeling too faint, had cried out for my dad in the middle of the night. I still remember the sound of her voice as it woke me because children remember the sound of their parents when the tones are helpless. That’s the kind of thing that sticks with you for many long years because mothers are strong and when you’re little, they’re strangely larger than life. Mothers make skinned knees hurt less and storm clouds less ominous, and everything feels better when they’re near. Much like “Marmee”, Louisa May Alcott’s beautiful matriarch to the March sisters, when my mother was in the room, all the upside down was set to right.

Tomorrow, my mom goes into surgery to remove the cancer and a part of her body with it. And it’s strange how, even though I’m grown with babies of my own, I feel like a tiny child in the hall again and the woman who could make it all right is having to undergo great wrong and it feels so helpless.

Even so, her words have remained sure… she doesn’t fear the cancer or the surgery, or even the potential complications: “I know where I’m going when I die”, she said. And if ever it hits her, she worries about the drugs they’ll use on her. She’s always been so careful with those things. And she worries what she might say when she’s under anesthesia, and because it’s a genetic tradition on my father’s side, we laugh and joke about the worry moments because somehow, it works for us, and if we’re honest, we get funny looks when we’re trying to be serious, so who are we kidding anyway? She got injected with something radioactive and the text came from my dad – a message to let us know she was okay and that she’s beautiful when she glows.

But when you strip away the laughter, the strength, the years, and even the helplessness and fear of it all, what is left? Especially in these days when, it feels like there’s cancer everywhere I turn…what is left?

I want to share this that she wrote:

As I walk this path I am being lovingly and unhesitatingly escorted by dear women who are willing to return to this route and walk it with me. They are precious friends whose strength and encouragement has been forged in the fire of their own trial, and from their loving dependence on the Lord.
“Praise the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort. He comforts us in all our affliction, so that we may be able to comfort those who are in any kind of affliction, through the comfort we ourselves receive from God.” 2 Cor. 1:3-4

One of her greatest joys in this to date has been watching links form in the chain of ugly turned very beautiful; the awe of knowing a little more of Chase’s journey now, the wonder of those coming around her to share their own experiences. And she is willing to be helpless to know what it’s like for others. That’s something kind of breath-taking if you really consider it.

And so it comes yet again…these hours before the surgery. Tonight and tomorrow and in whatever follows, we are all drawing near to the One who loves us in brokenness and understands our helplessness and takes the ugly things and pours them out in great beauty for His glory and our ultimate good.

Mom, I’m so proud of you. See you on the other side…

Moment by moment.

With my mom in her beloved Germany, June, 2001