First, Shelly and I have been absolutely overwhelmed by the outpouring of love and support. As I write that, it sounds so cliche, so let me try again. The bride of Christ, often belittled and maligned for her dysfunction, has dazzled us with her tenderness, compassion, and affection. Jesus doesn’t marry down, and although His work with His bride isn’t done yet, we’ve been privileged to see something of what He sees in her, and I have to tell you, it’s awesome.
Let me catch you up… Monday was Alice’s birthday. What a bittersweet day that was. I always take the kids for breakfast on their birthday. Rock Creek Cafe. I barely managed to hold it together as I wondered if this would be the last one I’d ever have with Alice. I gave her all my bacon when she wasn’t looking. She held one up, “Want one Dad?” That’s Alice. She just knows how to do it. And she can eat pancakes, my word. A plate-sized, 1/2″ thick pancake, and she ate most of it, with three strips of bacon and a cup of apple juice. That’s my girl! Ate more than me that morning, that’s for sure. I gagged down a couple eggs and some toast.
We opened the door of the house, told those we invited to make no appointments, but just come. The last thing I felt like doing was scheduling visits. Screw it, just come when you can and we’ll figure it out.
Friends, relatives, (all the cousins on the Reed side) hugs, tears, tons of presents, and lots of prayer. When my Dad arrived at the house, I ran out to meet him like I was 6 again, buried myself in his arms and wept. It felt so good. Every one of the five pastors we invited came, from Apple Valley to Crosby, and prayed for us as our friends, as our brothers, and as God-called men of prayer. God bless these men for their service to us.
My wife stood like a marble pillar of strength, even through the tears. I’ve marveled at her these past couple of days as if we were dating again, she’s been so helpful to our whole family. I often say that I married her because she was so blonde and so beautiful, and later found out the incredible depth of her qualities as a wife, mother, friend, and child of God. Most people think I’m joking, I’ll let them think that. I won the wife lottery. I had no idea what I was getting, and I got the best.
Tuesday we closed the door, and just spent the day as a family. Alice played “Minecraff” with her brother and sisters, and we took a trip to Chisago City to hang out around a hotel pool. Alice loves the water more than anything. But she was so tired. It was wonderful that she wanted to curl up in a towel and sit in my lap, and awful that she didn’t want to spend hour after hour in the water, like the Alice of two months ago would have done. But it was good to be a family.
Wednesday was more family, this time from Shelly’s side. But it was tough. Alice seemed so weak. We cleared the house out at 5:00, sending home siblings, parents, and cousins. It was hard. Alice just didn’t have much left in her. It was a really, really dark night. By Shelly’s request (and I include that detail to my shame and her everlasting credit) we gathered as a family in our girls’ bedroom, and prayed together. How sweet it was to hear my kids storm the throne room of heaven on their sister’s behalf. I prayed that we could trust that God loved Alice more than we did, even if He loved her differently than we would like. And they prayed similar prayers, in their own words.
Though we felt so utterly miserable, our misery has been tempered by the encouragement and prayers of God’s people. We feel it, even in our darkest hour. We are stunned by the number of hearts stirred to pray for her. I say that to my shame too – I know something about desperate prayer now, and I see people desperately praying for my daughter. I know how incapable I usually feel to enter into other’s sufferings with them, and I marvel at the ease with which other’s have entered into our sufferings. I have so much to learn, God help me.
We headed into Wednesday night in the lowest of spirits. We’d seen Alice seemingly deteriorate before our eyes. Would we even have another week? Those were the thoughts. By this time though, we could hardly cry. How could we make it through the night? Before bed, I had to take a bath with Alice and give her a pre-surgery scrub-down. After hearing biopsy horror stories (and I wasn’t going looking for them, either!), I wondered if I was preparing my child for the end. How dark are the places the mind goes sometimes.
And then God’s grace began to break in. We slept, and slept hard. All of us. Alice between me and Shelly, 4-1/2 week old Violet in the crib beside us, our distraught older four, we all slept. It was incredible.
Thursday morning dawned, and I got Alice’s steroids ready. Four little pills, halved, smashed, and sprinkled on a spoonful of honey. As I walked over to the bed to wake her up, I remembered… Crap, they said she couldn’t have honey, only juice. Waste not, want not I say. So I stirred in the honey into some warm water, added some white grape juice, and gave it to her. She was sleeping so hard, she drank half of it, fell asleep for 20 more minutes (I didn’t have the heart to wake her up; Alice falling asleep in the middle of a cup of juice is akin to the Levite stopping for the wounded man on the Jericho road, it doesn’t happen!) then awoke and finished.
When she woke up, the light was back in her eyes, at least a little. She played more Minecraff while Shelly and I packed up. She laughed, she teased, she owned the room again. It was wonderful.
This will make us sound like something we’re not, because sadly this isn’t normal for us, but Shelly took to the piano and we sang “Behold Our God!” (for me) and “Jesus Loves Me” (for Alice). It was awesome. We felt a peace and a calm, on this of all days. We’ve taken to reciting Psalm 23 as a family, which we did, then crawled in the truck instead of the van so Alice could sit in the front between Shelly and me (yeah, probably illegal, but screw it, we are taking every minute we can! Judge me if you like, I don’t mind!), and away we went.
God bless Keith and Paul. My brothers made arrangements to meet us just off the freeway on the way down and pray for us. They cried as the three of us, the Reed boys, huddled in the Park and Ride, and asked God for mercy. Alice gave them a hug from her perch on the front seat, and off to the hospital we went.
The staff here (as I’m writing from the ICU) has been incredible. Alice’s neurosurgeon spent at least a half hour, maybe longer, walking us through what he saw, what he wanted to do, and answered the questions I’d written out the night before. He is absolutely amazing.
Shelly and I had decided that it appeared to be God’s providence that led us to the place we were, the doctors we have, and we felt a tremendous peace entrusting our little girl into their hands. We had our questions, and some of them were hard, but they were answered so wonderfully well.
Our neurosurgeon showed us Alice’s MRI, and what he wanted to do. He explained the procedure so well. One of the things we didn’t anticipate was that he wanted to drain one of the “lakes” of fluid in her brain. One of the common ways to do that is run an overflow tube (this is my construction-worker interpretation talking, I’m not a brain-surgeon!) from the lake out of the brain, and run it down into the abdomen somewhere. But his plan was to punch a drain in the lake (my words, not his) on the front side of her tumor, since the river coming out the back of the lake had been pretty much dammed up by the cancer. Amazing how God designs these organs. The new drain would find its way down into the same old riverbed “south” of the tumor, and her brain would figure that out.
Best case scenario, since he was in her head checking out and draining the lake with a camera and some other stuff all squeezed into a 2mm hose (3rd ventricular endoscopy, that’s what this procedure was called), he’d try to take a short trip to the shore of the lake and grab a piece of the tumor, so he wouldn’t have to do the regular biopsy, which comes from the lower part of her head, and is essentially running a blunt needle straight through her brain into the tumor (for you carpenters, think of dulling a nail so it doesn’t split the end of a board, and you get the idea).
Among the questions I asked him was simply, “If Alice was your daughter, knowing what you already know about her case, would you do this?” He looked at me and said, “Yes, yes I really would. This is going to help her.” I felt he meant it, and Shelly and I both felt greatly at ease.
I also asked “What do you think this is?” He said they were fairly sure, though not perfectly confident, that this was a DiPG type tumor. That’s the nasty one, and the prognosis with it is quite grim. But they don’t know for sure. Five days ago, not knowing what was going on was so frightening; today not knowing seemed somehow comforting.
I got dressed up in a big white suit, funny hat, mask, and booties for the walk to the operating room. I actually got to walk there twice. In a reminder of the futility of man’s work, and the inescapable reality that something will go wrong no matter what we’re doing, we marched straight into the OR instead of to the CT scan, where they were going to make a digital map of her head, couple it with the MRI, and use that to guide the scope into her head. The operating room isn’t a good place to say “oops,” but it was the best time in the worst room, I guess. So out of the OR, down the hall (and I have to say, the hallways connecting the OR’s are much scarier, more industrial looking, and much more “businesslike” than the rest of the hospital hallways!), into a tiny elevator with Alice in her bed, a pregnant nurse pushing her, another attendant, and a random passenger. Claustrophobia, anyone?
I was so proud of my little girl as she entered that giant donut-shaped CT machine. Somehow she managed to still recognize me while I was in my silly white suit and ugly blue hat (called me “Baymax” from BigHero6), and still knew me when I added a lead apron covered in Dalmatians to my stunning attire. She hadn’t been sedated, and needed to hold her head perfectly still on her way in and out. I got to stand by her and hold her chin gently as she went in and out. I recited Psalm 23, and as I got to “Surely, goodness and mercy will follow me all the days of my life…” it was over. She was amazing.
Back to the OR. For real this time. I held her mask, first away from her face, then nearer and nearer (I’d get 5% of his pay, the anesthesiologist told me!) until her eyes rolled back, and she fell asleep.
I took off my silly suit, knelt down in the little room they gave me to change, and prayed once again for Alice. But it wasn’t desperate this time. Today was a peaceful day in our souls.
We even ate lunch. How remarkably odd that we wheel our little girl into a room, and while we eat lunch someone performs brain surgery on our daughter. What a weird world we live in. But we could eat. We wanted to. Little graces.
The doctor came in with a big smile on his face. It went better than expected. He sat down with us, and said he’d been able to put a new drain in the lake, and it was a good one, it would work, and this would relieve some of her symptoms. We felt like, for a little while anyway, we might get our little girl back. I hadn’t felt a thrill of happiness for a week. I have to say, it felt great. He said he took the camera to the edge of the lake, and there was the tumor. He got 6 samples. Tiny, but he got them. No need to do a regular biopsy. Another little grace.
He asked if we had any questions. I asked “Can I give you a hug?” Sure, we do hugs! So I hugged him, and I cried for joy. I think I hugged and cried too much, because I heard him quietly say, “ok…” so I let him go. But God bless that dear kind ridiculously skilled doctor, even if he doesn’t like big long tearful hugs. I forgive him with all my heart. I wonder if insurance doesn’t pay for hug time. ha!
Alice woke up, asking for juice. So we gave her a cupful. And another. She wanted more. Whoa, hang on camel, let’s see if this stays down. It did. So more juice. And for good measure, one more, this time I watered it down. She didn’t care. Down the hatch. That’s my girl.
That’s where we are tonight. It’s been a good day. If we look beyond today, her future still looks mighty grim. And we’re okay with that. Today God has proven Himself faithful, and the little mercies we received show us He still cares. One of those mercies is that we are both absolutely enjoying today. We got today. Tomorrow has enough trouble of its own, but that’ll care for itself. We got a win today. We’ll take it. God be praised.
Thank you for your tears, and for your prayers. Your labors have not been in vain, in the Lord. If all goes well tonight (and they just took her off blood pressure meds, so they are going well tonight!), we get to go home tomorrow. We’re so happy. It’s a happiness we’ve not experienced before. It may be doomed to sorrow, but tonight we don’t care. God has closed our eyes to the future, so we can’t see it, but more importantly, we can’t feel it. We are trusting Him with it, and we’re good.
— picture taken tonight, Violet hanging with big sis, Alice is guzzling more fluids and watching Toy Story. Good stuff.
note: I hope the Common Slaves don’t mind me hijacking the blog, replacing articles of theological interest with a sort of journaling of my daughter’s current ordeal. But what is an ordeal without theological interest? And what is theological interest without an ordeal? -jr
September 29, 2017 at 5:45 am
Completely following! Amen to everything! I continue to be amazed. God is good. We’re praying for you.
Priscilla from Costa Rica
September 29, 2017 at 6:20 am
Praise God! Thank you for the update.
What a mercy that he’s given you a new baby at a time like this. How sweet that Violet is along for the ride to have these moments with Alice… and I know how a newborn can comfort us in our sorrows. We won’t stop praying fervently!
September 29, 2017 at 9:52 am
Praying for your family! Thank you for allowing us to journey with you.
September 29, 2017 at 10:55 am
Prayers continue…thanks for the update! Praying for complete healing and that God will continue to carry you thru each day…may HIS perfect will be done!
September 29, 2017 at 11:23 am
Thank you for the update. We continue to pray for everyone!
September 29, 2017 at 11:54 am
Praying fervently for you all. May you continue to feel Gods mercies and be comforted in His love.
September 29, 2017 at 12:05 pm
Praying to our awesome and loving Father for Alice and all of your family.
September 29, 2017 at 12:22 pm
We’re praying for Alice and all of you, Joe. Thank you for sharing this and allowing us to come to the throne with you.
” how very great is his power at work in us who believe. This power working in us is the same as the mighty strength which he used when he raised Christ from death and seated him at his right side in the heavenly world. Christ rules there above all heavenly rulers, authorities, powers, and Lords; he has a title superior to all titles of authority in this world and in the next.”
Ephesians 1:19-21 GNB
Sending much love to you and Shelly and your family, Candy (Randy’s cousin)
September 29, 2017 at 12:25 pm
Thank you for the update! We continue to pray for all of you! ❤❤❤
September 29, 2017 at 12:26 pm
Thank you for sharing your journey. I’ve shed so many tears over your words. We’re sending so many prayers and so much love from Michigan.
September 29, 2017 at 12:36 pm
Such wonderful news. God is great! We are praying for more great news to follow. Sending love and prayers to the entire family.
September 29, 2017 at 1:04 pm
GOd is good. THanks for keeping us informed. CLBS senior class
September 29, 2017 at 1:18 pm
Glad to hear you were able to enjoy your day with Alice even through the circumstances. It also made me smile that Alice and Violet were watching Toy Story. I remember Toy Story being a family favorite at the Reed house while I was growing up, so I am glad to hear your kiddos are now enjoying it too.
I also want to let you know that I have been continually praying, crying, or thinking about you all since I heard on Sunday. Your family is never very far from mind. Alissa
September 29, 2017 at 1:20 pm
So thankful for the grace of God on your little Alice, and for you all. Still praying!
September 29, 2017 at 1:45 pm
Thank you for the update. You are coming to mind at the oddest times of day and night…God is showing Himself like a rainbow seen through tears. Prayers continuing…
September 29, 2017 at 2:10 pm
Praying for you guys and crying with you as I read on.Praying for your whole family!
September 29, 2017 at 2:23 pm
Praying for you and your precious little girl
September 29, 2017 at 2:51 pm
Continuing to pray, crying and rejoicing at even the “little”miracles.
May the peace of Christ continue to dwell in all of you richly.
September 29, 2017 at 2:57 pm
We haven’t met but, we also attend lewis lake church and have three daughters who pray the sweetest, most adorable prayers every night, and even cry for your little Alice having not met her yet but knowing she is sick. Our hearts and prayers are with your family and may God continue to shine for each and every one of you. The Peterson family
September 29, 2017 at 3:00 pm
Thank you for taking the time to update us. We will continue to pray.
September 29, 2017 at 3:02 pm
Our church family is praying for all of you. So greatly appreciated you share your faith as you walk this heartbreaking piece of your journey. May God continue to carry you.
September 29, 2017 at 3:02 pm
I’m sorry your family is going through this. I’m more than thankful you can lean on Jesus for comfort and that He sent you to the right doctors. I’ve added you all to my ever growing prayer list. God Bless You all. Praying for a complete cure.
September 29, 2017 at 3:18 pm
This journey will have highs like this and lows I can’t explain but God’s love for you guys is always at its best. He has a special plan for you but just like Joseph, you’ll understand best when you look back. ❤💓
September 29, 2017 at 3:20 pm
Hijack away! This is theological interest lived out in real time and while we hurt with you all and wish it wasn’t this trial that had to be, we appreciate being pointed to God in the midst of such darkness. We continue to pray and hope and pray and hope and feel the weight and darkness as well as the sweet graces with you. With Love.
September 29, 2017 at 3:21 pm
Yes! Yes! Yes! This journey will have highs like this and lows I can’t explain but God’s love for you guys is always at its best. He has a special plan for you but just like Joseph, you’ll understand best when you look back. ❤💓
September 29, 2017 at 4:19 pm
Praising the Lord with you, and continuing to petition the Lord for healing, grace, and a great peace!
September 29, 2017 at 4:54 pm
So thankful for God’s great goodness yesterday. I’m continually praying on your entire families behalf. Stay strong in the Lord.
September 29, 2017 at 5:16 pm
Praise the Lord for this day! Praying with you and your little girl as you walk through valleys and are led beside still waters. May the Lord be your portion, brother.
September 29, 2017 at 5:54 pm
We continue to keep your family in our prayers and appreciate the updates which help you as much as they help us to understand what’s going on. We are making this journey with you! God’s Blessings!
Jerry & Joyce
September 29, 2017 at 6:21 pm
Erran and I (our kids, too!) have been hanging on every word of these updates on your sweet Alice and have been SO BLESSED by your transparency and “realness” in sharing each step of your family’s journey during this uncertain time. We think of you all so often throughout each day and pray for you just as often. We love you, support you, cry with you and rejoice in the “little graces.” May the Lord continue to give you just what you need as you need it, and may He be glorified through all of it. We won’t stop praying!
“It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” –Deuteronomy 31:8
September 29, 2017 at 7:02 pm
I just met you a few minutes ago. In the time that it took me to read these two stories about your journey with little Alice, I have enveloped a whole new family in the Lord that I didn’t know I had, besides all the wonderful people who weep with you, leave notes, share Scripture, exalt the Lord and will hold you up in prayer. It’s awesome being in the family of God and hearing how you are handling the storms of life with the living Christ, Emmanuel, at your side.
September 29, 2017 at 8:18 pm
Your family is on our mind and in our prayers. We are praying for comfort, peace beyond understanding and Healing. The Lord is good, His love endures forever.
September 29, 2017 at 9:50 pm
Rejoicing and still praying for God’s amazing care and support for you all!! You are loved!! Sara and Mathan Thompson
September 29, 2017 at 11:04 pm
We are praying for you and your children. Your family is in our constant thoughts and asking God to give you peace and strength. May the Lord give you what you need and may you continue to feel and know how much we and so many others care for you.
September 29, 2017 at 11:59 pm
Praying for your precious Alice, you, Shelly and your other children. Your great Uncle Pastor Ray Schaedig married me and you dear grandmother made my beautiful wedding cake!! God is good!
September 30, 2017 at 12:22 am
Surrounding your family with prayers that our Heavenly Father wraps you in His loving arms and that His Glory is seen in all of this. I am truly blessed by your words as the tears pour down my face. Much love to you all from Negaunee.
September 30, 2017 at 12:23 am
Continued prayers for your family and Alice.
Ron and Lisa Coleman
September 30, 2017 at 1:17 am
Joe & MIschelle, We hardly know what else to say that hasn’t been said already. But we know a little of the fear parents feels when their child is diagnosed with cancer. Our hearts go out to you and we are praying fervently for your family as each faces their own thoughts in different ways. Your writing is wonderfully descriptive and we wept as we read of your ordeal and smiled at God’s wonderful provision of small miracles that speak so loudly to us in these situations. God is so good and cares so much and gives so well to us mortals. We will continue to pray for Alice’s healing, comfort and “little miracles” for each of you as you travel this difficult path. Thank you for allowing the rest of us to pray along with you and have a peek into your journey. Even though we would prefer you not have to endure this valley, we pray that God’s greatness, mercy, compassion, power, wisdom and direction be on display for all of us to see through your experience. Hugs to all. We hang on to your every word. God’s will be done and He will bless you for your faith and dependence upon Him.
Sheryl & Keith Tisdel
September 30, 2017 at 1:40 am
Continued prayers for Alice, your family & Dr’s. Thank you for the update.
September 30, 2017 at 1:54 am
I have been following your blog and I’m am sincerely heartbroken at what both you as a family and little Alice are going through. Please know you are in my thoughts all day and I’m on my knees as often as possible praying for God to bring a miracle for her. Your faith is a beautiful thing to witness through all that you are facing.
September 30, 2017 at 3:56 am
Thank you Jesus! Your mercies are new each morning!! Continuing in prayer….
September 30, 2017 at 6:14 am
Love you and praying for you, Joe, Shelly and Family!
September 30, 2017 at 12:01 pm
Psalm 5:11a… Let me hear in the morning of your steadfast love, for in you I trust.
This verse came to my mind this morning as I prayed for you guys!
September 30, 2017 at 4:41 pm
September 30, 2017 at 5:17 pm
Joe and Shelly, we want to let you know that we are praying for your family. How GREAT is our God!!! As we read your blogs a song comes to mind. It has helped us so I hope it is a blessing to y’all.
Life is easy, when you’re up on the mountain
And you’ve got peace of mind, like you’ve never known
But things change, when you’re down in the valley
Don’t lose faith, for you’re never alone
For the God on the mountain, is the God in the valley
When things go wrong, He’ll make them right
And the God of the good times
Is still God in the bad times
The God of the day is still God in the night
We talk of faith way up on the mountain
Talk comes so easy when life’s at its best
Now down in the valleys, of trials and temptations
That’s where your faith, is really put to the test
For the God on the mountain is the God in the valley
When things go wrong, He’ll make them right
And the God of the good times
Is still God in the bad times
The God of the day, is still God in the night
The God of the day, is still God in the night
October 1, 2017 at 4:07 pm
All of Trinity Lutheran Church in New York is praying for Alice!
October 1, 2017 at 6:56 pm
Your writing has touched my heart. I am praying for your precious Alice. God bless you and comfort you and your family with His sweet peace.
October 2, 2017 at 1:19 am
The choirs at the University of Northwestern-St. Paul and so many others on our campus are lifting you and your precious daughter Alice in our prayers. I have two daughters, and I can’t even imagine how difficult this has been for you. It practically takes my breath away. But, I know you all – and Alice – are in such Good Hands – of the Great Physician. And we know our future is in His hands. A few years ago, we sang a piece called “God, Thou Art Love” by Craig Courtney. The poem is here, attributed to Robert Browning:
If I forget, yet God remembers.
If these hands of mine cease from their clinging,
yet the Hands divine hold me so firmly I cannot fall.
And if sometimes I am too tired to call for Him to help me,
then He reads the prayer unspoken in my heart and lifts my care.
I dare not fear since certainly I know that I am in God’s keeping,
shielded so, from all that else would harm,
and in the hour of stern temptation, strengthened by His power.
I tread no path in life to Him unknown;
I lift no burden, bear no pain, alone;
my soul a calm, sure hiding place has found:
the everlasting Arms my life surround.
God, Thou art love! I build my faith on that.
I know Thee who has kept my path,
and made light for me in the darkness,
tempering sorrow so that it reached me like a solemn joy.
It were too strange that I should doubt Thy love.
I would love to share our recording of it with you or any of your friends and family, if you wish. Feel free to email me at email@example.com. It’s been a tremendous encouragement to many of us in dark times and difficult days.
All my best,
Director of Choral Activities
University of Northwestern-St. Paul
October 2, 2017 at 11:40 pm
Thank you for sharing your heart and for being “real”. Our prayers will continue before the throne of grace for sweet Alice and your entire family.
October 3, 2017 at 6:39 am
Tears flowing here, and many prayers.