The Lord is good to those who wait for him,
to the soul who seeks him.
It is good that one should wait quietly
for the salvation of the Lord.
The other day the family was outside playing around in the snow – something we don’t do often enough – and as Alice was traipsing about, I looked at her little footprints and thought, “Making tracks. That’s what so much of life on this earth is. Leaving an impression everywhere we go, whatever we do, so that when we’re gone, our tracks remain.”
I suppose we’re trying to, in some way, immortalize Alice by capturing as much of her as we are able so we can never really “lose” her. Every picture and video of her is, in some sense, her “tracks.” Beyond that, all that she teaches us, or that God teaches us through her, or when her life and struggle touches others around her, these are her tracks, her mark on our hearts, and the world.
I haven’t written anything since the end of January. I suppose if we were living in a whirlwind of excitement and rapid, significant change, I would have. But it’s been pretty boring around here. Perhaps the best way to proceed with our story is to frame it with some significant phrases that have come up along the way.
“We think you’ll be happy when you come back in February.” – Dr. Chris
This was spoken after Alice’s first post-radiation MRI the week before Christmas. And he was right. Valentine’s Day was her second MRI, and it showed not only no tumor, but it appeared to my carpenter-trained reading of the MRI itself along with my interpretation of the Brain Specialist’s notes in Alice’s file, that she had actually improved; I could see signs that she had actually healed some. Maybe the best way to describe it (and again, totally not a medically verified statement coming here…) was that some of the internal “bruising” where her tumor had been was clearing up.
“When I finally gave up hope, I was able to live.”
After my last post about “doing nothing,” a beloved pastor friend from Colorado called me and told me this is what friend of his with a terminal disease once told him. The point: sometimes recognizing something is hopeless allows a person to cease striving after the illusory cure and just get on with the business of living.
I’m amazed by the hopefulness of the human heart. Alice has, statistically speaking if you round down just a titch, a 0% chance of surviving this tumor. Still, people often say to us, “Have you tried this?” or “What about this doctor?” or “You should check out this clinic” or “I know someone who did this thing, went to this place” or something like that is in some sense offering hope, and we want to reach out for it. We’ve checked into this, that, and the other thing, we’ve hoped, only to come to one (pardon the ugly pun) dead end after another. Still, in our world of medical marvels and the audacity to believe that every problem has some solution, the hopeful solutions keep coming at us (and that’s usually fine, just be aware that they often make our spirits rise… and then fall, sometimes pretty hard). It’s an endless battle to be appropriately hopeful, avoiding despair, but remaining realistic in the face of what this is, which is, as far as I know, the deadliest form of cancer there is.
Still… the radiation did remove the tumor… so there’s a hope that it won’t come back… even though, according to the notes I read recently in a clinical trial concerning her kind of cancer, “recurrence is a virtual certainty.” Nevertheless, I feel like Jim Carrey’s Lloyd Christmas in Dumb and Dumber, “So you’re saying there’s a chance?” “Virtual” certainty is something less than “absolute” certainty and leaves room for hope, yes?
We have hope because we believe in, and are children of and loved by the Creator of the universe. Still, I’ve yet to see convincing evidence that Christian kids with DIPG who get prayed for have a greater survival rate than atheist or Muslim kids who don’t. Nevertheless we pray, and we are so grateful (and still amazed by how much) all of you pray for her and for us.
Lately I’ve been reminding myself that giving up hope that she’ll survive isn’t necessarily despair that she’ll die, it’s taking the hopes I have for her – that she’ll grow up to be as perfect and lovely and winsome as I know she will – and moving the “date of completion” back a bit. Maybe that won’t happen for her just now. Shoot, for that matter I never grew up to be as perfect, lovely, and winsome as my parents (or wife) could have wished either. And in at least two of those categories, I’m trending the wrong direction! However, in God’s good time and by His grace I, my little Alice and our entire family really will one day be perfect at last. So we always keep hope, somewhere. We only have a little for today, but a heckuva lot for tomorrow.
She’s got enough problems, why does she have to deal with this?
Late February, spoken by my wife, in a bit of exasperation. February was flu month in our house. A mild strain to be sure, but one that just kept going round and round, till some of the kids had one version or another at least three times. You know the drill – lie on the couch for a day or two, then make room for the next one. We all had it. Alice had gotten the flu shot with the whopping 10% accuracy; she was a 90%er, she took her turns on the couch too.
So there we lay, trying to cope with the biggest problems we’ve ever had to deal with; “cope” often means “try to have fun and make memories!” Nope. We sat at home and tended to the sick. Sick Mom, sick Alice, sick everybody. Being sick always feels like a waste of time – when time is particularly precious, its being wasted is felt more keenly, that’s for sure.
It’s exhausting trying to capture every little thing!
It was late evening, when spirits typically sag, my wife was going through the pictures in her camera.
It’s really hard to live in “crisis” mode. The last four months Alice has been really
quite normal. So there’s this internal battle between the exhausting labor of trying to make each moment “count,” not miss capturing those special moments because who knows, we may never be able to have them again, and just wanting to relax, put the weights of our minds aside for a while, and live the rather boring life we’ve always enjoyed living, tucked away in our little old house, gathered around the table for supper, reading, watching a movie (she wanted to watch some episodes of the Three Stooges tonight, that’s my girl!), or just horsing around till bed time.
Bulbous Bodies (and me too!)
We went to the Dells for a couple days with my brothers, sister, and their families. I sat next to the lazy river as people wandered and floated by us (imagine… dozens or hundreds of middle-aged mid-westerners in bathing suits… in late February, all crowded into an indoor park… *shudder*) and as I held my little girl with her difficult problem, I thought about my problems, and how hard life is. But looking at the cloth-deficient people all around us, I saw I was surrounded by more aging, wrinkly, misshapen, oversized, undersized, malfunctioning bodies than I ever really wanted to share a pool with. And those are just the ones that looked like me. I was reminded in a new, and strangely powerful way, that life on this earth is just hard. With precious few exceptions perhaps, none of those people (and again, me too!) were physically everything they ever dreamed they would be, and I know behind the outward appearance of almost every one of them was a host of far more significant and difficult relational, financial, and spiritual problems weighing them down.
Somehow I felt a strange kinship with humanity in general – God help us, life on this earth is just plain disappointing, for all of us. Heaven somehow seemed particularly appealing to me in that moment.
Anyway, leaving my sermonette aside, it was a great time spending a few days having fun in the waterpark with the kids (and the sight of the 20 cousins barreling down the corridors of the hotel was almost worth the whole deal!) and say thanks to them for remodeling half our house… in four days. Still, Alice just likes being home the best.
Except Sundays. She loves going to church. We all do; God bless the Lewis Lake gang for their unbelievable kindness and graciousness to us. A few months ago, Alice decided she wasn’t going to sit with the family. Instead she wanted to sit with Cheryl, her Sunday School teacher, on the opposite side of the sanctuary, front row. So every Sunday, that’s where she goes. She (mostly) quietly plays, colors, crawls in Cheryl’s lap, and takes a nap. It’s pretty awesome. Lately I’ve noticed that quite a few kids from her class are now sitting through the service with her and Cheryl, so she kind of started something. Cheryl’s the best – she handles it all so well. And Alice (and now her friends) probably abuse her good graces. But it’s pretty special.
We want to be surrounded, and we want to be left alone
This is how I try to describe the multitude of mixed feelings we experience when people
ask “How are you doing?” and want more than my typical “We’re hanging in there.” Every step of this journey is one we’ve never taken, and we are flooded with a host of conflicting, confusing emotions. As family, friends, and even some strangers have come closer to us to endure this trial by our side, we have found ourselves withdrawing more tightly into ourselves, creating distance between us and those who have been closest to us. It’s the weirdest thing.
I’ve often thought in recent days, “what if this thing is back?” I’d want to open our house up and let the world come in and show off my Alice – because she’s worthy to be seen and admired, in my incredibly biased opinion – but at the same time I also would want to shut the door and not let anybody in. And these paradoxical feelings replay themselves in a variety of ways in a host of different situations. I find myself feeling guilty for being home so much, for “producing” so little, so I commit myself to various projects, then kick myself for not being home. Still trying to figure that out!
If you see anything, let us know – Dr. Chris
We left the December MRI with the hopeful words, “We think you’ll be happy when you come back in February.” We left February with a little different sendoff until our April MRI: “If you see anything, let us know.”
Ugh. They’ve seen this more than we have; they know the progression. It was really nice to not feel like we were going “see anything” for those first couple of months. It was nice not looking too closely, trying not to worry. We felt, to some degree anyway, like we’d lost that freedom to relax.
The week leading up to Palm Sunday was particularly difficult for us. Alice hadn’t eaten much all week, slept a lot, and complained of pain in her legs (probably steroids settling, we’d been told back in February) that became so severe one day she couldn’t even walk until the afternoon, and even then hobbled around putting hardly any weight on it. That was also the week she stood at the top of the stairs and said, “I’m scared!” Ugh. Stairs were one of the things she lost her ability to do before.
Later that week she perked up some, and went to an Easter Camp the church put on for the kids (which she loved!), and I peeked in her room where she was doing crafts, and I swear her eyes were going crossed again. My blood about ran cold. That made for a really dark day, the end of a really dark week.
Michele and I sometimes play this cruel guessing game – is she not doing the stairs because she’s spoiled and knows she’ll get carried? Is the pain in her legs only remnants of her steroids? Is the weirdness I see in her eyes just me being paranoid? Are the late nights she sometimes has just exhausting her?
Or is it brain cancer?
We go back to children’s for an MRI next Tuesday. I guess then we’ll find out. As we say, God help us. Truth be told, I’m not as optimistic as I was in February. But then, I may just be imagining things. See how this game works?
Anyway, God has helped us. He is helping us. His will be done. His plans are for good, not evil, and if they seem evil, I can hardly imagine the good He’s going to work out of it. In this life, no doubt, but especially the next. After all, He’s not safe, but He’s good. Besides, at the end of the day I suppose we could say, like Alice, we’re 0%’ers. Maybe she beats us to the end, maybe not, but we all stop making tracks in this world some day and move on to the next. So God help us all.
We are incapable of expressing all the gratitude that belongs to all the individuals, churches, family and friends who have, often at great expense, borne our burdens with us. Thank you for all the prayers, cards, gifts, text messages, for filling our freezers, our gas tanks, and our hearts in the myriad of unseen (but not to God or us) ways you have encouraged us and aided us along this difficult journey.
April 11, 2018 at 12:54 am
She is beautiful, we are praying for her and you!
April 15, 2018 at 8:08 pm
I agree! And thank you so much.
April 11, 2018 at 4:43 am
Thank you for the update.. She and your family are so precious. I so appreciate you sharing the concerns, worries, joys,fears and deep trust and acceptance of our God’s unfolding plan for all of you. Please know still, that so many brothers and sisters in Christ have been will continue to pray for all of you and have been deeply impacted, challenged and blessed in their own walk with our Lord.
April 15, 2018 at 8:09 pm
Bless you Debbie. Thank you so much.
April 11, 2018 at 6:01 am
Thank you for your update. You don’t know me but I started following your story because of a young man, Mike Bennett, who went to school with my daughter. Alice is prayed for every day in our home, I pray it helps to know you are not alone.
April 15, 2018 at 8:10 pm
I went to college with Mike! We were good friends. Thank you for your prayers. They move heaven and encourage our hearts.
April 11, 2018 at 6:19 am
Thank you for your beautifully written piece about Alice. What’s incredible (and miraculous) to me is that sick as she is, she looks joyful and full of life in every single photo. Sending prayers to sweet Alice and the rest of your beautiful family.
April 15, 2018 at 8:11 pm
Thank you so much. She’s everything you see and so much more! Bless you.
LikeLiked by 1 person
April 16, 2018 at 7:29 am
Thank you Joe. Bless you and your family.
April 11, 2018 at 8:05 am
You, your family and Especially Alice are never far from our thoughts… Our prayers.
April 15, 2018 at 8:11 pm
April 11, 2018 at 8:50 am
Your account is so beautiful, you may just publish it in a book someday. We pray for you and carry you in our hearts.
April 15, 2018 at 8:14 pm
Thank you Miriam! I’ve been encouraged to compile these all someday, so who knows maybe that will happen. Greetings to Alan! To think – our family (Shelly and me!) spend it’s first days of existence in your honeymoon cabin almost 19 years ago. Seems like yesterday.
April 11, 2018 at 10:12 am
Continued Prayers! 🙂
April 15, 2018 at 8:14 pm
April 11, 2018 at 2:28 pm
Oh what a sweet beautiful daughter you have,, as well as all of your children. My prayers are with you all daily,, may you be knowing the grace and mercy of God each and every day as you rest in Him with the unknown. Not unknown to Him though, ,praise God.. much love and prayer ,
April 15, 2018 at 8:16 pm
Thank you so very much. God is good, and we look forward to the day when we say that without wondering how His goodness fits with the trials He allows us to endure.
April 12, 2018 at 10:10 am
There are few things more horrifying to process and be a part of than the suffering of a child. Yet, at the same time, there is truly few things more amazing than the joy children often have in the midst of their suffering. Alice’s smiles, play, engagement and laughter remind me that children live each day seeking fun, engagement, connection and joy. She is amazing and beautiful! She truly is making tracks that will last for a lifetime. I applaud you for being real with your emotions through this. Embrace them, endure them, process them and lift them up. I will continue to pray for healing for her, wisdom for Chris and his team, and continue to pray for peaceful endurance you all.
April 15, 2018 at 8:19 pm
Bless you Amy! Indeed… horrifying process along and amazing joy, all at the same time. Thank you for your gracious, compassionate, and incredibly skilled love and care for our Alice.
April 13, 2018 at 4:33 pm
Joe, thank you so much for your honesty and being real with us during these days of suffering with Alice. I agree with one of the other comments that you may end up putting this in a book someday. You definitely have the gift of words! Alice is so beautiful. Just seeing her smile and having fun can’t help but make me smile! Mark and I pray for you and your dear family every night. Thank you again for your updates!
April 15, 2018 at 8:21 pm
Bless you Mary! Thank you for entering this journey with us and holding us up. How great is the body of Christ – to share our joys, sorrows, hopes and fears together with those who love us most. Look forward to seeing you in a couple weeks, Lord willing!
April 16, 2018 at 4:47 pm
You are writing a beautiful legacy of your daughter through this suffering. You are capturing her spirit well and she sounds like the sweetest thing ever. May God continue to give grace.
PS: The Dumb and Dumber reference killed me. 🙂 Only Joe…
April 17, 2018 at 9:27 am
Praying for you all this morning…