“Be still, and know that I am God.
I will be exalted among the nations,
I will be exalted in the earth!”
The LORD of hosts is with us;
the God of Jacob is our fortress. Selah
A good mother might say, “If you can’t say anything nice, don’t say anything at all.” If I could tweak that for my own purposes to explain a 6 week lapse in recording our journey, “If you can’t write anything interesting, don’t write at all.”
I could see myself morphing into Captain Hook – desperately trying to stop the incessant march of time. If only clock-smashing were less symbolic and more effective! It’s almost sickening sometimes to think we’re already 4 months post-diagnosis and 2 months out of radiation. The heaviest burden we bear is the stewardship of days that seem so much more valuable than they did before.
Of course, all our days are numbered, and of course the number could be “up” for any of us at any time, and in that sense, one day is just as valuable as the next. Still, when you realize that the number of someone you love, particularly a little child, is probably getting really small, that realization is attended by an inevitable sense of urgency to wring maximum value out of each day.
It’s interesting to me as I ponder what “maximum value” looks like. Typically it’s synonymous with “maximum pleasure.” A good day is a fun day. Boring or unpleasant days often feel wasted, and weigh heavy on the heart when we kiss Alice goodnight, another day gone forever.
So we’ve done some really fun things. We hosted Christmas dinners for both sides of the family. Hosting is work and the stress of cleaning up and all that jazz, but for me anyway, somehow there’s a comfort sitting in our own house that I lose at someone else’s house. I can’t explain it, but I feel it. But Christmas was good. Family, food, presents, you know, all that stuff. “Normal.” Trying to take pictures out of a sense of the happiness of the moment, not out of an unsettling awareness that, statistically speaking, this is our only Christmas as a family of eight.
We decided that for Christmas, rather than buy the kids material things, we’d try to “buy” some memories. So instead of dolls and dvd’s, in early January we took them downhill skiing, accompanied by their aunts, uncles, and cousins. It was beautiful weather, good company, great snow, and lots of fun.
But we’re learning something… I got Alice all dressed up and in her skis and took her over to the bunny hill. I was excited; she wasn’t so much. With a measure of difficulty we made it to the top of the hill, where we stopped while I consoled her – she really didn’t want to be out there, and complained about almost everything she could think of to get herself off the hill and back inside. She did a great job going down the hill, her little skis exactly between mine, my hands firmly around her little body. But we got to the bottom, and she was done. One run.
And yet, she spent some of the happiest hours of her life that day sitting in front of a window sill with her cousins playing with little toys and making fart jokes (I blame her cousins for that!) and doing what little girls do. It wasn’t the fun I’d planned for her, but she had a great day nonetheless.
In mid-January the Make-A-Wish Foundation sent us to a beautiful little house on the northern end of Anna Maria Island, about an hour’s drive south of Tampa, Florida. Alice loves sand, water, and shells.
Shell’s cousin Megan has worked in the pediatric medical field for some time, and she began filling paperwork out for us back in October, so for our part, the only thing we had to do was go to one brief meeting at the Make-A-Wish office in Minneapolis (if you recall during radiation Alice threw up in the car just before we walked into a meeting… this was the meeting), signed a couple things, and showed up at the airport.
I won’t bore you with the details of our trip. We took a boat-ride, we found some shells, we hit some touristy shops, we came home. I can’t say enough about how great Make-A-Wish is. They put together a really fantastic time for us.
But again, all the things that Alice loved, that we went to enjoy, she really did enjoy them, but maybe not as much as we might have hoped. We had a pool in the backyard of our house down there – she swam, and enjoyed it. She dug in the sand at the beach, and picked some shells. But to be perfectly honest, when we arrived back home, she grabbed her giant stuffed SpongeBob and Patrick, gave SpongeBob to me, and for an hour I chased her as she ran from room to room talking, laughing, making voices for all the other characters, and while I kind of hate to say it, I think she was enjoying herself more that first hour back home than she did on the trip.
That’s not to say the trip wasn’t awesome, because it was. But it’s a little window into who she is, and what we’re learning about making our days count. Sometimes being home and doing nothing is the best thing in the world.
While we were away sunning ourselves on the beach, my two brothers and two of Michele’s brothers, along with their kids, were at our house doing some pretty significant and horribly unpleasant remodeling. The idea was to change around our bedroom to a space that had enough room for an extra bed, should that ever become a necessity. They’ve spared me most of the horror stories of tearing this 115 year old house apart, but I’ve done other sections before, and rumor has it that the 10yd dumpster I had in the driveway was mounded with lath, plaster, and 70yr old insulation. Gross. But we’re so thankful for their labors, and how amazing to come home to a beautifully redone half of the house. It’s a project I wanted to do in the worst way, but between the challenges of disabling a major section of a house while 8 people are living in it, and my desire to enjoy Alice more than tackle a project like that, it just wasn’t going to happen.
I’m learning that when God says, “My grace is sufficient,” that doesn’t only mean some inner peace or acceptance of the lot we’ve been given, it really means in a concrete way that God’s people will show up with handfuls of grace. A card, a gift, a hug and a sympathetic tear. A trip to Florida, a house more suited for the challenge. These are all graces that help us know we’ve not been abandoned by our Savior.
The day after New Year’s we had an appointment with Dr. Chris, our brain tumor specialist. He had told us he would be looking into some drugs that may be helpful in keeping Alice’s aberrant, tumor-producing proteins shut down, in effect helping to keep the tumor from coming back. So we were a little excited to see what he might have found, cautiously enjoying that glimmer of hope, and we had a couple treatment possibilities we’d run across that we wanted to ask him about.
The result of that appointment was basically, “We should just wait until the tumor comes back, enroll her in a clinical trial, and we’ll go from there.” All the things we asked about – “I don’t think we should, it hasn’t been shown to help.” We were pretty crushed. We’d hoped there was something that we might do. But, nothing. Technically speaking, we’ve added Flintstone’s vitamins to Alice’s diet, if you want to count them as something. But that’s it. She’s on no meds otherwise, and for reasons I won’t take time to explain or defend here, her diet is basically what she loves – oatmeal, pizza, “stick,” (steak) “crispus chicken” (chicken fingers), “eggs like a ball,” (boiled eggs – she only eats the whites, the yolks “are for you Daddy”), “cheese circles” (quesadillas, but only the ones Shell makes, definitely NOT the ones from Taco Bell), and she’s recently discovered what I’ve known for a long time – the joy of Dorito’s. Oddly, after 3 years, Cheerio’s are off her menu. Won’t touch them. So weird.
It’s hard to do nothing. We trust our doctor; we have to trust someone, and he and his team are far more aware of both the problems and the solutions than we are. They’re on top of it.
But still… it’s hard to do nothing. It’s hard because “nothing” seems like giving up, it seems like resigning Alice to the mercy of a merciless disease. It always seems better to do “something” than “nothing.” Something feels hopeful, it feels like you’re fighting forward, it feels useful. Nothing is just dumb. Who does nothing, when you could do something?
After three weeks of doing nothing, realizing how incredibly fast time is marching on, we decided to contact another pediatric oncologist at another children’s hospital who has treated other DIPG kids, just to get her thoughts. Maybe she’d have a “something” for us to do.
We sat down with Dr. Ann on Thursday. She’s a diminutive lady with gray hair, bright eyes and a friendly, intelligent smile. She reviewed Alice’s most recent appointment reports, took a look at her MRI scans, and said “Tell my why you’re here.” I said, “It’s hard to do nothing, we just want to ask you if there’s something we can do.”
Bless her. She spent a most leisurely hour and change with us, talking about DIPG, talking about clinical trials, talking about ongoing research, talking about things she’s tried, others have tried, talking about the less-than-a-handful of patients she has had that have survived DIPG for over 5 years, talking about somethings, and talking about nothings.
I began to notice a theme when she spoke though… “Some families will do X because it gives them hope,” or “If you want to feel like you’re helping, you could try Y.”
“Dr. Ann, I think what I hear you saying is that any “something” we do is more for our own benefit than Alice’s, to help us feel better about helping instead of just waiting for this to run its course, is that right?” That’s about it.
There’s nothing been shown to increase ultimate survival rates; there’s no real understanding of why those who survived did. Proving causality is a difficult task. She said of her three survivors, two did something, one did nothing. Others have done the “something,” and it didn’t work. Her best advice, formed after years of dealing with kids and families just like Alice: just make up your mind and do it, and you won’t regret it. What if we do nothing? You won’t regret it. That helps.
What’s best for Alice? Every “something” has a side effect. It might as minor as her gagging on the awful taste of some powderized medicine (now that she’s off steroids, she doesn’t just inhale anything we stick in front of her!), it might be the side effect of traveling to a different city for a clinical trial and the discomfort of not being home. It might be rashes, it might be sore joints, who knows, but every “something” has a side effect.
The question I wrestle with is this: Maybe “something” makes me feel better, like we have some hope, like we’re doing something. But statistically speaking, none of the “somethings” have proven to do anything. Say Alice has 8 months left, that’s about the medical forecast. How do we want those months to look for her? She’s currently playing in the kitchen with her dolls. I hear her little voice giving life to the imaginary world she’s created as her dolls talk to one another. I see the joy she gets out of being home, doing nothing. And just about any “something” interrupts that at some level – with no certain benefit to her.
This has been our challenge from the beginning. Do we try to eke out as long a time as we can with her, despite what it costs her, (we are of course, willing to pay almost any price; the weird thing is, we’re also in a place where we have to decide what she has to pay) or do we make her days as good as we can, even if that means they may be shorter? Or more accurately, how many more days can we “buy,” and what kind of days are they?
It’s not that we’ve not done “something.” Radiation was “something,” it was costly – to her and to us – and it worked incredibly well, and the time “bought” has been and continues to be well worth the price paid. Dr. Ann said she’s only seen 1 or 2 other cases where someone responded as well to radiation as Alice did. I think of all the prayers offered up for Alice, and I once again thank God for His people, and for His grace to us, even in this trial.
But doing nothing is hard. It’s hard to do nothing well. But sometimes, it seems, nothing is the best thing. For us, anyway. For now. We wait, we hope, we pray. We try to live in the present in such a way that in the future we’ll look back and have no regrets. But it’s hard to do nothing and really believe we won’t regret it. Then I’m reminded – I might be doing nothing, mostly because it seems my “somethings” aren’t ultimately very helpful, but there is One who is never doing nothing, always doing something, and sometimes puts us in a place where we can’t do anything but wait for Him to do His something, whatever that is.
As I write, Alice is still “perfect.” Other than some missing hair, it’s impossible to look at her and know that maybe someday way sooner than I could have ever wanted, she’ll truly be “Alice in Wonderland,” or my own pet name for her and maybe the title of a little piece I’ll write sometime, “Alice in the Palace.” But I still hope that’s not for a long, long time. Until then, I’ll be doing nothing, as well as I can, hoping the God who loves her more than I do, who has “somethings” that actually work all the time at His disposal, does something, and knowing that even if we see him do “nothing,” there’s still a greater, if now imperceptible “something” being done, for her, and for us.
note: My dear cousin Laura penned an incredibly beautiful article about Alice’s ordeal. I hesitate to mention it only because it portrays us in a better light than we deserve, but I’m just so grateful to see God be honored and his people encouraged, and I want to thank Laura for ministering to our hearts. You can read it here.