You formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
– from Ps. 139
So today we went to see the monster… and there was no monster to see.
We went down with some measure of fear and trepidation; the unknown always seems to be a heavier burden than the known. We knew good things have been happening as far as Alice’s return to her old form, but we haven’t forgotten that just a couple weeks ago it seemed her eyes were crossing again, so honestly how good could it be?
Plus, we’ve been told that if the tumor is gone, it can mean a quicker comeback. So what do you want to see? Conflicted. I’d love to see it gone. But if that means bad news in the long run, does that mean I’d love to see it there?
Michele and I prayed together several times in the hours leading up to this, not knowing exactly what we should pray for. It always seems more fulfilling to pray for something that you feel deep down like there’s some chance you might get it – and that’s little things, more often than not: a restful night, a peaceful heart, a bit of good news. We still pray, “Please, let us keep her. Please!” But we pray other things too. “Thy will be done” seems to be more and more frequent. Sometimes it feels like a defeatist way to pray, sometimes pious, and sometimes, thankfully, we really feel like we mean it.
Alice had said the night before, “I’m gonna go to the doctor’s house and see my friends!” And she did. She arrived at the Sedation unit a returning hero. The nurses all came to see her and love on her, to marvel at how big Violet has gotten, and wish us all a Merry Christmas. It was like “old times.” A ride in the bed, Alice on my lap, SpongeBob on the laptop, a blast of the white stuff, and off to sleep.
Forty minutes later they wheeled her bed back in, and this time it took her about a half hour to wake up, which she did, a bit cranky to boot. Ah well, no matter.
Dr. Chris, the brain tumor specialist extraordinaire who we only see on really important, usually bad-news kind of days (not his fault!) came in with a light step and a happy heart. “I’m impressed! For someone who’s easily impressed, I’m still really, really impressed!”
Long and short, Alice’s tumor is gone. He explained that aggressive tumors tend to respond particularly quickly to radiation. I guess their retreat is in proportion to their advance. He went on to tell us about a particular mutation in a certain protein in her brain’s stem cells that open the door to tumor formation. Basically (my interpretation once again – don’t go to your garage and try brain surgery using me as a guide…) radiation made the tumor go away, but the door is still open for it to come back. They are still trying to figure out how to shut it; how to repair that mutation. But that’s why it always comes back.
I’m in awe of our Creator as I think about the complexity of our bodies, particularly our brains. The more I learn about them, the more it seems improbable that any of us are able to live at all! There’s just billions of little tiny pieces that have to be working correctly, and if not… well, this kind of thing happens.
It was fun, though, to see pictures of her brain without cancer. And since he made the scans available to us, and said we could share them, here’s where we’re at:

The one on the left is from the first MRI back in August. The one on the right is from today. I don’t think I even have to point out the tumor, but in case you’re wondering it’s the big white thing in the middle of the left scan that’s nowhere to be found in the scan from today. The white patch above the tumor (and also in the other scan) is the “lake” of ever-created spinal fluid they made a new drain for during the biopsy. Basically where she is now, save for the thing that caused it in the first place, is perfect. There’s no sign of a tumor; it’s gone.
Dr. Chris put it this way: we knocked off the leaves and branches, but the roots are still there; it’ll come back. But not today. And hopefully not for a long long time. We pray.
Back to my internal conflict, because I’m sure you’re dying to hear about it, ha! I learned something today, and I wish I’d learned it awhile ago, but better late than never. As we sat down over barbecued goodness at Famous Dave’s for lunch, I was pretty subdued, and Michele said “Sorry you’re not really able to enjoy this.”
I like keeping an even keel. I’m prone to swings, don’t get me wrong, but I hate them. And I guess somewhere along the way I figured that this ends on a pretty down note, so there’s no sense getting up too high, lest the downward stroke fall too hard. And that meant I couldn’t really enjoy what really is good news for Alice, and for all of us. Maybe it does come back bad. But today it’s gone.
Shelly and I talked about enjoying, really truly enjoying, the little things. Yeah, there’s this big ugly thing over our heads. But there’s a lot of little things that are really truly wonderful.

I got a little preview of this epiphany on Sunday night when we went up to Duluth to see the lights of Bentleyville. There we walked through a dreamland of beautiful lights, happy Christmas music, bustling crowds excited to soak in the wonder of the season. It’s truly a festive atmosphere. And I was released to just enjoy the simple fact that God still gives good things for us to honestly and dare I say, righteously enjoy. Maybe they’re smaller than some of the big ugly bad ones, but they’re still good.
So I’m processing these thoughts, even tonight. This was a good day. Perhaps this ordeal still ends lousy, I don’t know. But dampening the joyful moments of today in some sort of effort to dampen pain of tomorrow may not be quite as good a plan as I once thought. To be perfectly honest, I wasn’t sure quite how to communicate to you this particular chapter of our story, and still don’t. I love that the tumor is gone. But I don’t want to give the impression that our sorrows are over, or that Alice is fixed because they’re not and she’s not. Why get so happy about the fact that you got your tire pumped up but you still hear it hissing? But dang it, the tumor is gone, and why not celebrate it, even if only for a season?
Shell talked with me about how many good moments we’ve had of late, and there have been lots. And we’ve enjoyed them. But I wonder if I’ve really let myself enjoy them as I could and should. Paul’s line “sorrowing, yet always rejoicing” has been rolling around in my head today. I’m still working on it.

Alice is essentially 100% physically, neurologically, and cognitively at this point. Except for some little mutant protein doors that won’t close, she’s as healthy as any other little girl. And that’s pretty awesome. I’m happy about it. Happier than I have been. Probably happier than I will be tomorrow, but that’s part of the battle that rages in the soul. Sitting at lunch next to Alice, she grabbed my arm and gave it a big hug, then laid her head on my shoulder, just getting close to me. Those are good times. Not all times are good, but some are really, really good.
I was talking with Pastor Bob yesterday, and he reminded me that there’s no going through a storm like this without getting knocked around, beat up, and scarred. There’s no cheating the system, no path through that doesn’t really and truly hurt deeply; indeed, the pain seems to be one of God’s primary tools for doing whatever it is He’s got in mind.
So, we’re probably going to get beat up. Ok. But I’m really going to make a concerted, yet unforced effort to enjoy those moments when our ship pauses for just a moment on top of those giant waves which are just high enough that if you stand up tall and look hard, you can just see the sun coming up over the horizon. Yeah, the ship is going back down again. And it’s gonna get dark and dangerous. But it’ll come back up, for one more life-giving glimpse, and someday, we’ll make harbor, and the storm will be no more.
Thank you for praying. Shelly said to me today, “I can feel we’re being prayed for.” It’s true. We’re so grateful. Thank you for encouraging our hearts; we need it! Thanks for the kind words, the kind gifts, thanks for being God’s gracious gift to us. Thanks for enduring my ramblings as I write to process life and what to make of it.
top photo from bedtime this week.
Jo Bishop hosts an online community for families with DIPG. It’s heartbreaking, but worth checking out if you’re interested in seeing what Alice and others with DIPG are up against. You can find it here
December 20, 2017 at 5:26 am
Thank you for the update. So thankful to hear the tumor has totally receded, even if it is for a season. Alice is such a precious little girl and am so thankful the protein mutation in her brain has not taken our Lord by surprise. I cannot put into words how your trial has impacted so many . As a believer it is so encouraging to hear of your unwavering faith, love and trust in our Lord’s ways and purposes. Thank you for your blogs,we all will continue to pray. Your anchor is firmly within the veil and I know our Great High Priest will continue to hold you all very close. Have a blessed Christmas.
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December 20, 2017 at 6:43 am
Prayers for your family from ours. Thank you for sharing to keep us updated on your families journey. Keep on keeping on! Your faith is amazing and you inspire us all. Love from the Belkholm Family.
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December 20, 2017 at 7:20 am
thanks for the update…you and your family are in our prayers every day and will continue to pray that God will completely heal little Alice and that the tumor will stay miraculously GONE…but most of all that HE may be glorified thru all of this and HIS will be done! I know you have touched many people thru this journey so far and I pray that God will use this to bring many to the throne room. God bless and have a most blessed Christmas time together. ~ Paulette Venhuizen
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December 20, 2017 at 7:34 am
Thank you for the update – You don’t know us – but we know you thru Jesus – WE pray for you & your family every single day! And we know that God is with Alice, you & your family every single day. GOD is Good! Merry Christmas – May it be a blessed Christmas for your family! Lee & Alma Hemness
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December 20, 2017 at 10:45 am
We are truly rejoicing with you for God’s grace given to Alice and to your whole family. We will continue to pray that our gracious Heavenly Father will guard your hearts and minds through Christ Jesus our Lord. We love you all!
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December 20, 2017 at 11:32 am
Dear Joe and Michelle, Alice and family, what good news tempered with reality. Praying for your family and for many many good days ahead!! I once heard a sermon where the preacher used a different phrasing for Hebrews 4:16. An alternate way of interpreting the very last phrase when coming before the throne of grace, is that the Lord will give you grace and help “in the nick of time.” Unfortunately we can’t store up grace for sorrows ahead, but He will walk right there with you and not abandon you in the bad times. Asking the Lord for grace to live in the light of your reality and still be able to be joyful. Thank you for wonderful and thoughtful words in this blog. Alice is a dear, beautiful girl, I can tell. Sorry I’ve not really met you, but may the Lord use His word to comfort you. Blessings!
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December 20, 2017 at 2:30 pm
Thank you once again for your post and your raw honesty,,, I have a new understanding through your families experience of “sorrowing yet rejoicing”.. thank you for that. In the most horrible, hard, heart wrenching experience in a parents life,,, you are a picture of honest faith. and rejoicing in the midst of the worst sorrow a parent can experience on earth,, yet in the midst of it all you are a powerful testimony of true faith in the Lord Jesus Christ. Please know your family is in my prayers each day by Gods grace… You are being used of God in ways you may never see on earth… love and prayer Jamie
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December 20, 2017 at 6:36 pm
Thank you for the update. I have my group of people at work and my family all praying that the monster stays away for a long long time
I was reading about a boy who had this same thing at 9 months and is now celebrating his 9 th birthday. God is good all the time and all the time God is good.
Have a Merry Christmas
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December 21, 2017 at 2:56 pm
Yes, we are still praying for you all! Praising the Lord with you for the good news of today…It’s ok to dwell just on today and let God craft tomorrow with His Almighty hands, while He is working in the dark. What a special gift to be given in this Christmas season…..no tumor, just your Alice! So thankful for joyful news and another day that you get to spend with all your kids, right there beside you.
Love, Chuck & Jennifer Hervin
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December 21, 2017 at 7:43 pm
thank you for the update. I like Pauls ” sorrowing yet always rejoicing” In different degrees it seems like most of life is like this. Sorrows for the pain we are suffering, or sorrow for things done or undone, but always knowing that our Christ has cleansed us to be whiter than snow. Perhaps we rejoice even more when we consider how transient the present joy may be. Ah, your family means so much to so many. God has gifted you with an articulate pen and a wonderful articulate way of presenting the gospel. Thank you many times over
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December 22, 2017 at 10:38 pm
“In the eye of the storm You remain in control. In the middle of the war You guard my soul. You alone are the anchor when the sails are torn. Your love surrounds me. In the eye of the storm.” Part of a song by Ryan Stevenson.. It’s hard to imagine in these storms and wars, but God is in control, and will never leave us or forsake is. Keep hanging on. He will not let you go.
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December 30, 2017 at 11:45 pm
Keep people updated, good news is good. Let’s pray God will continue the miracle, & it won’t come back. I was watching Hillsong church channel. Zoe church in LA, one of their pastors found out their oldest child’s brain never developed, he stated he has learned how to help people, through their tough times. They were told many marriages do not survive, y’all can help others in many ways, while also, enjoying the happy & blessings of life we all take for granted. All & many should continue to pray for miracle healing for Alice, God can do it. You have learned many things, perhaps even just taught all of to be more thankful, appreciative, giving. Continue updates, even if things are good, no new growth, & Alice is so adorable so those photos are just precious. You have been blessed & suffered & learned so many things, So now, you can help others more prepared. I PRAY God will never allow this to grow back in anyway. In Jesus name.
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January 8, 2018 at 10:16 am
Continuing to pray for your sweet family!!
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January 19, 2018 at 9:23 am
Praising God with you for this wonderful report. Our daughter is a 6 year survivor of a malignant brain tumor–and it is a journey that no one ever asks for, but the Lord has been near to us. I wanted to let you know that there is an ongoing trial at augusta university using immunotherapy alongside traditional therapies (chemo/radiation) for recurrent tumor and bad players like DIPG. Dr Theodore Johnson is the head physician of the trial. If you need info on that, happy to connect you. My husband and I are physicians as well.
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January 19, 2018 at 9:02 pm
Can you shoot me an email at joereedmn@gmail.com? Thanks!
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January 28, 2018 at 2:01 pm
After reading this entry about the protein possibly leaving the door open, I wanted to share with you, a small bit of information a friend sent me. Her son has cancer, and she knew since I was on that journey, I would be interested. It’s about an amino acid called NAC, and it’s been shown to keep the protein in cancerous cells from spreading to healthy cells. I wish I had kept the article, but sadly, I did not. I asked my oncologist on Thursday (Jan.25), about taking this supplement, and he said it wouldn’t hurt, but that he preferred for me to wait 8 weeks, until my chemo is finished. We just never know what God will choose to put in our path to help us, but I do believe God has put many helpful things in His created world, that we just haven’t discovered yet. Many blessings on your life’s journey with sweet Alice!❤
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May 28, 2018 at 10:01 pm
Good luck to all! But please note we are on a rock called Earth in the middle of a vast cosmos, mainly by accident as a result of an asteroid that killed off the dinosaurs about 60 million years ago, paving the path for mammal evolution – including humans. There is no such thing as God, we’re just advanced animals with big brains. Faith is fine, and it provides comfort but is not a reason to believe in fairy tales about someone looking out for you and your family. There is no meaning to life, happiness and sickness happen due to genetic and environmental causes, and that’s that. Wishing you the very best in your recovery.
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