Alice: Life Beyond Radiation

For God alone, O my soul, wait in silence,
for my hope is from him.
He only is my rock and my salvation,
my fortress; I shall not be shaken.
On God rests my salvation and my glory;
my mighty rock, my refuge is God.
Trust in him at all times, O people;
pour out your heart before him;
God is a refuge for us.
Psalm 62:5-8

Three weeks since the last trip to Children’s Hospital for radiation, two and a half months since diagnosis. Time is marching on, and sometimes it seems to be flying by at a cruelly rapid pace.

We have been feeling things we’ve never felt, thinking thoughts we’ve never had to think. And there seem to be new ones all the time. The latest relates to this business of time flying by.

Alice and Violet. They’ve covered a lot of miles together in the backseat, and she’s pretty good at calming her baby sister

We pray for Alice’s complete restoration. As do so many of God’s people. We do not lose hope.

 

But we also know, of all the families who have prayed for their own child smitten with this particularly wretched tumor, in essentially every case, God has provided neither medical nor miraculous healing. As St. Jude’s, the best in the world at this point, says concerning DIPG, “there is currently no cure…”

We try to walk that balance between living with hope in what could happen by God’s grace, and living with the grim reality of what always happens with this kind of disease. There’s no sense pretending to know the future; there’s no sense pretending that without a doubt we will be the exception to the “rule.” Luther once (so I’ve been told, though in a different context) described the challenge of maintaining these delicate balancing acts as akin to the efforts of a drunken German trying to sit atop a donkey, continually falling off one side and then the other.

So back to time flying by… One of the unforeseen difficulties we’ve found is the pressure to make every moment count; to make every event memorable – and meticulously record it. The burden to enjoy life is like a dead weight that just gets heavier all the time. To use a different metaphor, it’s like staring down the barrel of a gun, watching an unstoppable finger slowly squeezing the trigger, and telling yourself, “Hurry up and make life count!”

We didn’t do much to celebrate our 18th anniversary, but we did manage to get to Caribou Coffee, along with Alice and Violet. If memory serves, Alice took this picture.

The opportunities to enjoy many of life’s highlights are plentiful for us right now; the pressure to savor how special the moments are is actually quite burdensome. It’s made all the more difficult because, for Shelly and me anyway, all of life has this shadow over it, so the dark things are a little darker, and the things that are normally so bright are somewhat dimmed, making the effort to enjoy these days and make memories tainted with a sense of urgency, which kind of poisons the experience somewhat.

Hopefully that evens out. But it can be a rough ride.

The last time I wrote was the night before Thanksgiving. I felt positive, hopeful, encouraged and strengthened by the promises of God. The day of Thanksgiving itself was the opposite. It was, for me anyway, one of the darkest days of this journey. Usually when I’m down, Shelly is up, and vice versa. Thanksgiving I was down. We spent the afternoon at my sister’s place with a houseful of family, generally my favorite crowd, but that day I wanted to crawl in a hole. I slipped out to the van for an hour to be alone, and later while the family gathered around the piano and sang, I hid out by myself in the backyard. It was a dark day. I didn’t have tears to cry, and I didn’t have any strength left. I didn’t want to share Alice; I just wanted to sit and hold her all to myself and let the world disappear. I know, sounds like I’m 6 yrs old with a new toy… it felt about like that too.

Eventually I just gave the word and we left, rather unceremoniously; I couldn’t even say goodbye. Just put my head down and headed for the door. That’s all the strength I had in me. It was terrible. I’d love a redo, and maybe I’d do better. Who knows. It just stunk. Thankfully I haven’t had any days like that since.

Out getting a tree the morning of the party. Only Shelly thought to bring gloves, and Alice wound up with them. These three girls are wonderfully tight friends. I’m like Job in that I have the most beautiful daughters in the land. And there’s two more not in this picture! 

That debacle (for me, that is) weighed on my mind as we prepared for Alice’s benefit dinner last Saturday afternoon. I’d be the first one to say we can’t be slaves of our emotions, but I’m also rather unable to hide how I feel. So when the day finally came, Shelly and I were a little nervous as to how it would all go. We had a really crazy morning full of cleaning the house before my mom and two uncles arrived from Michigan, (there’s nothing more soothing to the soul than that panicked kind of “company’s coming and we want to trick them into thinking we’re not pigs!” kind of cleaning) getting a Christmas tree, saying a quick prayer for help, and almost racing out the door.

The dinner started at 4:00. We arrived at 3:05, and as we looked at a myriad of cars in the parking lot, Shelly said to me, “Look at all these cars! There must be a sporting event going on.” There wasn’t. I believe something like 80 people volunteered to help put this together. We walked in the door and were completely blown away by what had all been set up. Rows and rows of really awesome stuff that people had donated, that had been made, baked, quilted, knitted, painted, you name it, it was there, and it was amazing.

Alice had been looking forward to “her party,” as she called it, but I don’t think I did a good enough job of preparing her for what that was going to look like. But that’s probably because I had no idea what it was going to look like, either. The reality was that it was so big, and so well-orchestrated, that it really was beyond us; it was bigger than our family. This was a community event; this was family, friends, brothers and sisters in Christ, people who cared about us, about each other, and we just enjoyed it the same as everyone else. That made it awesome, and we had such a joyous time.

I previously told Shelly I’d try to stick by her for the night. After we walked in the door, I think I saw her about four times, for maybe a minute each. It was a whirlwind. Jerry Tvedt finally ordered (at least twice, maybe more times!) us to eat something, which we did about 7:30, and it’s a good thing he did. So at least we got to eat together. For 3 minutes anyway!

There was no official count, but the kitchen served up about 675 plates of spaghetti. It was a wild night. We saw so many dear friends, many of whom traveled a lot of miles to get there, and the only frustration was not getting to talk to everyone, and only getting to talk to the ones we did for a few minutes. It was a 4-hour whirlwind of basking in God’s grace and the kindness of our friends and family. We can’t believe how many came to show their love and support for little Alice.

Meeting Cinderella. Shamelessly stolen from Joyce Tvedt

She handled it really well. She’d fallen asleep on the way there, and now that she’s more her “normal” self and off steroids (hallelujah!) she’s back to being a bit touchy and extra shy for a half hour after waking up. But recover she did, just in time for the princesses, which she really enjoyed. I was afraid she might just scream and run, and I’m not sure that didn’t cross her mind, and as she approached them I could see this internal battle of happiness and trepidation going on in her mind, but she did great, and they were amazing.

After the princesses, Alice just disappeared with her cousins to play games and such; that was pretty cool. Then she came back to me, I picked her up, and while I was visiting, she fell asleep in my arms. When her puppy-dog balloon animal fell out of her hand and hit the floor, I knew she was out. She slept for about a half hour or so on my shoulder, it took her about another half hour to wake up again, then the smiles came out, and she was off once again. It was great.

I wanted to write about the benefit immediately after, but I knew it was going to take me some time to process it all, and it has. You know if you were there. It was absolutely unreal. We can’t really get our minds around the magnitude of the time, effort, sacrifice, and skill that made the evening such a memorable event.

We saw brothers and sisters from all over the area, from so many of the churches we’ve been privileged to visit and preach in over the past couple of years, old friends from way up north, dear friends from the cities, family and friends from out of state, even. There were people whose faces I’d never seen, whose names I don’t know, there was people who don’t know us, and all these came together to give of themselves. Once again, we wished we could freeze time so we could better savor each moment!

Our Lewis Lake Church family – how can we describe their active love to us without somehow tarnishing its beauty by the use of mere words? They have opened up and poured out their hearts and souls over and into this little girl they hardly know. It’s just wild. We’re so blessed to be a part of them. Our Quamba family showed their continued to love us, which is quite startling because they actually do know us a little bit, and finally managed to be rid of us! Indeed, our journey is well-attended by so many loving, affectionate souls, in some sense we’re traveling this rough road “first class,” and that’s been an unexpected joy and comfort.

The dining hall during Alice’s Party. So amazed at and thrilled to see the outpouring of affection for Alice

I’m still learning about all that went on and the labor that went into the dinner. When we got home, Shelly and I sat on the couch and watched some of the Facebook Live videos taken, and were amazed at all that was going on that we didn’t get to see. The crafts – how incredibly talented some people are! The baked goods – cardiologists must have been grinning from ear to ear thinking about how much business they’ll get from that one night alone! And the auction – 200+ really awesome things that were given for Alice’s sake. The school gave free use of the facility, the cooks gave their time, the custodians of their labors as well. Amazing. It will go down as one of the momentous events of our lives, and stands as a wonderfully fitting tribute to the Little Lady whom it honored so well.

How is Alice feeling? She’s Alice. As much as she ever was. And that’s awesome. She remains blissfully unaware of her condition, not so much by our intentional design in keeping it from her, but because of her utter lack of any curiosity about it, the absence of any pain, and… she’s barely four. She runs, plays, teases, laughs, hides from strange faces, all the things she should be doing. She opens cards, loves getting presents, and what makes me as a Dad so happy is that with all the attention given to her, she remains sweet-spirited, generous, and undemanding. She’s a really great kid.

Alice and her longtime friend “Hob” in the kitchen reading Calvin and Hobbes

One of the secret fears I harbor is that Alice will be known for her disease, not for who she is; that she’ll be thought of in terms of a condescending sympathy case, rather than being loved for all the things that made and still make her so endearing. I really want her to be thought of in terms of who she is, not what she might have been. I want people to sorrow not because of the tragedy of cancer, but because of the threat of losing something incredibly valuable to all of us. I don’t know if that makes sense, but it’s a recognition of how I’ve failed in thinking about other kids in similar cases. I saw the disease, not the child. Somehow tragedies like this have the ability to dehumanize their victims; it’s sad to see a child suffer, but it’s not like they’re a normal child, so it’s not like their loss will be that bad. Standing on this side of the river, sometimes I don’t like the person I was on the other side. I guess that’s part of the process, and painful as it is to see myself in that mirror, I’m glad to see more clearly.

Alice and Em

The older four have made us so proud. They have handled this entire ordeal so incredibly well, they’ve watched their little sister become the focus of so much attention, and rather than turn inwardly in feelings of being left out, they’ve joined in caring for and doting on her as well. I can’t tell you how impressed I am with all of them. Thank you for your prayers.

 

I will leave off here. Next Tuesday, the 19^th is her MRI, the first real look at this thing since the ordeal started, so we’ll see perhaps what our “cup of sorrows” looks like in medical terms, and I’ll let you know. Beyond that, I’m not sure what else it will tell us. We continue to trust the Lord’s wisdom, some moments better than others, hoping for a release from the futility we’ve all been subjected to most unwillingly, trying to keep close to the front of our minds what life might be like when the hand of God Himself wipes our tears for the last time.

for more pictures from the benefit, and the awesome videos showing something of the magnitude of the love for Alice, check them all out here

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