As a father shows compassion to his children,
so the LORD shows compassion to those who fear him.
For he knows our frame;
he remembers that we are dust.
Psalm 103:13-14
This is not so much to give out new information as it is to give a little window into what life is like for us and Alice these days. Mostly for us, so we can remember what it was like.
It’s Tuesday evening, almost 9:00. I’m sitting at the kitchen table. Today’s visitors have cleared out, and we’re settling back into our normal. In the other room, I can hear Larry, Moe, and Curly poking, slapping, bonking, and insulting each other. “The Funny Guys,” Alice calls them. The last two weeks or so, they’ve been her favorite. Mixed in is the sound of the kids and Shell, chatting, playing, now Natalie’s making plans for a late grocery run. She’s taken over the kitchen side of the domestic chores and has done a wonderful job. I guess the older four are all going along with her. Good for them, they need to get out and grab a breath of fresh air once in a while.
Each of the kids has found a meaningful and helpful role in these days. Emily is, as always, Alice’s go-to playmate, Kylie has become a nanny to Violet, and Jojo facilitates any random whims to play video games or handle little projects around the house.
It’s all so mundane. And I don’t mean that in a bad way. This is life for us, the life we love.
What do you do when your four-year-old is sent home with what is now down to 3-5 weeks to live? It’s not something you practice for or think about. I suppose if I were to script it in a novel, I’d write it full of significant, meaningful moments, like long hugs, long cries, soul-bearing conversations, maybe even the occasional screaming “Why God?” into the midnight sky. I’d think maybe the days would have lots of family prayer, singing, Bible reading, meditations on heaven, you know, really spiritual-minded things. I’m a pastor, after all.

Those things do happen. Occasionally. Sunday morning we stayed home, and I took the time to walk us through what the Bible says concerning death, the divorce of soul from body, the role angels play in the lives of kids and in the transportation of souls from here to heaven, and finally we watched a video clip of Dr. Tom Schreiner walking through the theology of kids who die. It wasn’t necessarily a time of mirth and merriment, but I hope amid the tears we were all fortified with great hope. We need a hope that won’t let us down. The expected, but still disappointing recurrence of her cancer reminded us that all the other things we’d leaned on (treatments, nutrition, even hope for a miracle) were pretty flimsy. I’m thankful we didn’t lean on them too heavily.
Mostly we’re just living normal life. For us, that means meals, chores, maybe do some reading, some correspondence, sit with Alice while she plays, colors, eats, or watches the funny guys. Since she can’t walk anymore, when she has to “wooz the baffroom,” it’s a little more involved for us than it used to be, but it’s effortless work.
While we’re fully aware that we’re getting down to the end of this chapter in our life, it’s still difficult to emotionally grasp. Partly that’s because with all we’ve been through, we’ve still never been through “the end,” partly because we’ve been living in this mode of impending tragedy for so long it feels “normal” and it’s hard to think of what life was like without it, and partly because we just don’t have much left in the way of emotions. I, for one, feel rather emotionally dead – like my ability to feel pain, sorrow, or grief has been depleted.

I remember back in September when this started, I cried for three days. Then I just couldn’t anymore. When the news came last week, I cried for a day, but now I can’t anymore. It’s rather frustrating. I think perhaps one of the reasons I’m sitting down to write is perhaps to try to jump-start my soul again. I don’t like the fact that my daughter is this close to the end of her life, and I can hardly feel anything. Maybe I can feel something – I feel bad for not feeling.
On to other things… How’s Alice?
Between April 13 and 20, Alice rapidly deteriorated, with each day bringing some new symptom. Sometimes it seemed as though we could see her change by the hour. That was really, really hard. The day after her MRI, Dr. Chris called me and said that upon reviewing her MRI in conference, comparing it with her original one from September, it was possible that her symptoms might be somewhat relieved, temporarily anyway, through a certain treatment that had little to no side-effects. We decided to give it a go, went to Children’s on Friday for it, and after Saturday her slide seems to have stabilized her somewhat. No improvements to speak of, but the daily guessing game of “what’s not going to work today?” hasn’t been played for a few days.
Her right arm now has no function, and her left is rather shaky. She still likes to try to feed herself, and usually does so with great success, but Shelly has developed a little game where Alice is the baby bird, Shelly’s the mama bird, so this morning eating waffles, I look over and there’s Alice with her mouth wide open going “tweet tweet!” Then, with a mouth full of waffles, she flashes a somewhat mischievous sideways grin that says, “I tricked you into doing my work!”

Her smile remains, at least so far, entirely unharmed and in near constant use. She’s such a happy, content kid. Funny that she should be the one putting smiles on our face, but she is. I guess that’s her contribution to the family life these days. Truth be told, it’s been her contribution since she was born. She’s just always been special that way.
About two weeks ago, she strung a blanket between the couch and love seat to make a tent, then put the mattress from the bassinet on the floor, took a blanket and a pillow inside, and called it her “blanket house.” She sleeps there sometimes, including the last two nights. I sleep on the floor next to her (and boy do these old bones feel it!), but I’m not allowed to stick my head inside, unless it’s to read Curious George before she falls asleep.
Speaking of which… she wants to sleep there again tonight, so Shelly and I are going to re-build it quick…
Done.
She’s lying down now, and I’m on the couch typing. Alice is kicking me through the blanket, laughing. Now she’s complaining, “some people are waking me up!”
You may recall that her eyes going out of alignment was the thing that tipped us off to this think in the first place. That’s happened again, and sadly in a big way. She wears an eye patch most of the time, because otherwise her eyes strain themselves trying to straighten out.

Sometimes she drools a little, and that bothered her more than anything. She said in disgust, “I spit like Violet!” Sometimes when she talks, she sounds exactly like my 90 yr. old Grandma did when she was suffering from ALS. Not always though.
She looks forward to the mail coming, and her eyes light up every day when there’s something for her. You all have been so unbelievably generous and kind, and she loves it all. Monday the kitchen table was full of packages. FedEx, mailman, and UPS all made a trip to the door. Most days lately we don’t have to go get the mail – there’s packages, so they get brought up to the house. Nice!
Alice has an unbelievably accurate mental inventory of her toys that is updated daily, and her obsessive nature means if we can’t find whatever certain little toy (that’s usually half the size of a golf ball,) the only thing that comes out of her mouth is “can you find my [whatever]?” until it’s found.
Hospice came out to meet with us today. Those are sobering conversations. But as Michele and I had previously discussed, we’ve sort of made that mental switch from hoping and praying her life is spared, to hoping and praying her departure is easy for her, and that we will somehow not be ruined in the process. And I know many of the ones who love her have made that same transition in their thoughts and prayers as well. For what it’s worth, we’re ok with that.

If we were to even attempt to list all the really meaningful gestures, letters, emails, etc., telling us how Alice has impacted lives, we wouldn’t be able to scratch the surface. Just reviewing some of the comments left on the blog the other day I was reminded again of how much this little lady has done, and that without knowing it. We can hardly wrap our minds around the number of people praying for her; from Pastors crying their eyes out to little girls praying for Alice every night, from friends and family to people we’ve never met but who, in this world of amazing connectedness via social media, have fallen in love with Alice and found themselves caught up in her story – we are so very grateful, not to mentioned overwhelmed. To our Lewis Lake family, whatever I say to commend you will hardly be adequate to describe the love and care we’ve received from you. Words are my thing – but I really don’t have any. You are instruments in the hands of the God you serve, and you serve Him well. Bless you all.
I’ll try to keep updated as I’m able. I spent some time on Sunday reviewing our journey, reliving some of the ups and downs, and it’s amazing and not a little tragic how much we forget, and so soon.

Alice has fallen asleep for the night; it’s time to grab some blankets and lay these old bones down next to her. We’re told in all likelihood one day she’ll fall asleep and just not wake up. We don’t think that’s gonna be tonight, but just in case, one of us wants to be there. And tonight “there” is on the living room floor, just outside the door of the “blanket house.”
April 25, 2018 at 11:07 am
The Kjellman family is praying for you and the extended family often. I haven’t left a comment before because it’s difficult to know what to say. It’s beautiful to see you all leaning on the Everlasting Arms. Thank you for the update and for your transparency. I am so glad that He will hold you fast through this life-altering, pain-riddled journey.
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April 25, 2018 at 12:18 pm
Beloveds, Twin Cities Bible Church has been and will continue to lift your precious family to the throne of grace, where mercy is more than we can imagine. I know you know that. We love you and thank God for your faithfulness to our Lord!✡️✝️
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April 25, 2018 at 12:21 pm
Peace be with Alice and your whole family. God bless you all.
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April 25, 2018 at 12:33 pm
Oh Alice,, what a beautiful story you have lived in such a few short years,, the lives you have touched, all of you have touched is astounding. You have impacted my life so much, as Ive been convicted to be focused much more on whats really important in this life,, to live for the Lord Jesus Christ. A little about me,, I have lived with many chronic pain illnesses, since 1980, and the most recent diagnosis is rheumatoid arthritis,,, which has caused my strength, stamina, and energy to decrease faster then it every has in my life before, so I am this year especially having to re-think what I can and can no longer do as far as working,, its been upsetting,, and a bit fearful as I need to make a career change.. I’m 58,,, so an old lady.. But,, because you and your family have shared your life , struggles,, with us,, me,,,, my whole attitude has changed about this life change. And trusting in God in whatever His will is for me for the rest of my days, and how I want those days to really count for the glory of God… AS yours has in just a few short years… May the Lords mercies be upon you all as you walk this road and live each day in the moment… much, much,, love and prayer Jamie
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April 25, 2018 at 12:52 pm
Stuffed animals multiply at night, especially when there is a lot of love around. 💕
Kathy Bloomquist is my cousin and after reading her updates , I get down on my knees and pray. Much love to you from Nebraska.
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April 25, 2018 at 1:50 pm
What a touching story as tears roll down my cheeks. I hugged my grand baby extra tight last week. I tell her I love her every time I talk to her. She at the age of two says it back. You have Inspired me with your stories. I will continue to pray for all of you in many ways. Alice can never have enough stuffed animals for comfort to the soul. Peace be with all of you.
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April 25, 2018 at 2:18 pm
Alice has indeed touched so many people with her story, as have you her brave Dad. I am praying for all of you. And I have never been happier a person spent that much on a unicorn in my life.
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April 25, 2018 at 3:58 pm
This was hard to read…we continue to pray often for you all. Thank you for sharing.
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April 25, 2018 at 4:53 pm
Little Alice has touched so many lives. I thank you for every blog , all very encouraging yet heart breaking. The Lord will continue to show Himself faithful to the end. Praying He will hold you all so very closely in the cleft of the rock, in His strong tower, in the shadow of His wings , securely in His everlasting loving arms. So many are praying.
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April 25, 2018 at 4:54 pm
I am compelled to thank you for sharing a bit of your life with us. Especially this post has mirrored, almost perfectly, Hannah’s story and the feelings we went through with her.
Alice’s continuing smile and inner joy that flows out to everyone is such a beautiful reminder of where we should be as Christians. Who do people see when they look at us? Do they see us or do they see the unconditional love of Christ that we see in Hannah and Alice?
Her impeccable memory of her list of toys reminds me of Hannah’s prayer list and inspires me, once again, to get back on my knees, where I was, when we walked this path.
Alice has been an inspiration to so many people that you know and countless others that you don’t. You, Joe, have joined those ranks with your unique telling of Alice’s story.
Thank you! ❤️
Love and understanding hugs 💓💓
Please send your address
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June 9, 2018 at 10:54 pm
We here at Beth Eden Baptist Church, Denver, CO. have been praying for Alice and the rest of the family. We are so sorry for your loss. We cannot comprehend the aching hearts. We will continue praying for the family and grampas and granmas. I am Howards sis-in-law Aunt Nan and Uncle Al Teed .Your writings Joe, are so heart-warming, need to be in a book form, so other families who are hurting can read about all the Faith and the struggles and loss of Gods little Angels.
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April 25, 2018 at 5:43 pm
Thanking the entire Reed family but especially Joe, for having the courage to share your life, struggles, GOD’S Sufficiency in every part of life. Your journey is precious, hard and yet in this Valley you walk, you have many walking with you in love and prayers. May GOD comfort your hearts and supply every need. I have walked this walk and KNOW HE will do this for you. HE hangs on when we cannot.🙇♀️
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April 25, 2018 at 7:16 pm
Many hugs, prayers,and yes tears too coming your way! 😇🤡🎈
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April 25, 2018 at 7:24 pm
My wife and I have been following Alice’s story. Many prayers and tears. We continue to pray for all.
Mitch & Jenny Branum
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April 25, 2018 at 7:27 pm
We are a family who was blessed by your dad’s faithful preaching. Our beloved long distance MN family at TCBC shared your Alice’s needs with us to pray. The Lord is keeping you on my heart and in my prayers. May Jesus’deep comfort continue to guide you through this and keep using you all to witness to many. Much love in Jesus, Sandra Beasley. Lamentations 3:32
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April 25, 2018 at 10:59 pm
I’ve been thinking about your comment regarding your absence of emotions. Maybe it’s like holy anesthetic “numbing cream” bathing your soul. Maybe it’s as if God’s grace has been poured upon you; without the numbness you’d be left with unbearable agony. “My grace is sufficient for you.” Is it possible that the tears that all others pour out of their souls are lifted up to ease yours? Well that I do not know. But what I do know is God apeaks truth truth. “My grace is sufficient for you.” Try in those times of agony to rest in him. Pouring tears and prayers and thoughts out for your family!
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April 26, 2018 at 12:26 am
Love and Prayer
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April 26, 2018 at 3:52 am
What a beautiful explanation of what you and your family are going through. Alice sounds like such an amazing, strong beautiful soul. Prayers and thoughts from Australia 🇦🇺
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April 26, 2018 at 6:53 am
Your extended family continues to pray for you all. Our hearts break with yours. We ask Jesus for comfort for Alice, especially, but for the whole family, also.
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April 26, 2018 at 11:09 am
Praying for continued comfort , peace and normal. Praying her smile remains whole It’s brightens up the room ! Gods fingerprints are everywhere. Sometimes we need to look for them , sometimes they are obvious. Her smile is obvious. It’s a blessing, a gift.
The Lord allows you to feel what you need when you need it. There will be time for tears later. Don’t beat yourself up now for having nothing left. Enjoy every moment , even those sleeping on the floor next to her.
Praying for you and your family to allow the joy of the Lord to be your strength as you venture down this road travelled by few
Love and prayers from the Worners. Would you please ask Sweet Alice to hug Molly for me
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April 26, 2018 at 12:06 pm
I’m so blessed by your writing. I pray for Alice and your family daily. Sometimes I’ve struggled in my faith when I don’t see a tangible difference between Christians and non believers. Thank you for the concrete example of trust and faith in Him. Thank you and Alice for inspiring me.
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April 26, 2018 at 4:09 pm
We have been praying for you all. I am Brittany, Vanessa and Charity Aultman’s Mom. Please send your address if you don’t mind. Thank you.
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April 26, 2018 at 5:21 pm
Your eloquence and honesty is amazing. Alice and your whole family will be in my prayers…..
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April 26, 2018 at 10:35 pm
Hola hermanos, soy Josué de Puntarenas, Costa Rica. No sabía de esto, es muy triste, no sé qué decir más que llorar pensando en el dolor que pueden estar pasando pero cuando grande es Dios que nos da su gracia y el consuelo verdadero que solo en Jesús podemos tener. Mis oraciones serán para que Dios les fortalezca.
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April 27, 2018 at 9:30 am
Prayers for peace with you all!!
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April 27, 2018 at 2:31 pm
Praying for Alice and your whole family. Praying that the Lord surround you with His love. Praying the Lord will bring you peace and comfort during this heart-wrenching journey.
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April 27, 2018 at 5:43 pm
Know that kind of far away, in a little public school in the state of Pennsylvania, a group of teachers gather to pray before school on Thursday mornings. And sweet girl, we pray for you. You have touched our hearts and shown us what it means to be brave. Tonight when I think of you all cozied up inside of your little tent, I’ll know you are in the safest place, because underneath you will be the Everlasting Arms…..promise!
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April 27, 2018 at 11:17 pm
We have been praying for you for some time. We thank God for you and
your ability to share with us a bit of what you are going through. Life is not always easy but our God is faithful and will take care of us all. Bless you all and give Alice a hug from us. We will continue to pray. Ken and Jan Christensen Maple Lake, MN 55358
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April 28, 2018 at 9:33 pm
I am one of those that have grown to love Alice. She is a doll… and I am heartbroken over what is happening to her.
I know sometimes the right thing to do is to change the prayer from “long life” to “peaceful passing” but I can’t get there yet. She has so much life left to live. I’m praying for thousands and thousands of good days!!
You are an amazing family!!
Praying!!
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April 29, 2018 at 1:55 pm
Always praying for your precious Alice, and for all of you as well . “Underneath are God’s everlasting arms. ” Deuteronomy 33 : 27 ❤ He is holding each of you gently to His heart !
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April 30, 2018 at 6:35 am
Praying this morning for you, precious family. Remembering that in Psalm 3:3, our Lord promises to be, “the lifter up of our head”. Thanking the Lord for sustaining you today, and for giving you new mercies. So, so many are continuing to hold you up to the Lord God Almighty….” in oceans deep
YOUR FAITH WILL STAND”.
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May 1, 2018 at 6:32 am
Continued prayers from one of those who has never met any of you but has been so led to pray often. Little Alice, you have truly impacted so many lives. Praying for your whole family. 💚
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May 1, 2018 at 1:57 pm
Alice and your blog has changed me. Spiritually, I am renewed. Thank you. Continued prayers for peace and comfort for you all.
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May 2, 2018 at 11:10 am
First time leaving a comment. Just read this update and cried, again, for what is happening. So glad Alice has a family that loves and supports her. I am now trying to look at life through shades of holding dear to the blessings I have in MY life. When I first heard of Alice’s tumor, first diagnosis, I was saddened and prayed for her. Upon hearing the radiation had seemingly worked the first time, I was so relieved and excited for your family. Then the tragic news of the recurrence of the tumor. I am angered and overwhelmed with grief for your family. However, your love, faith, devotion, and praise gives me a renewed faith in my own life, as I, too, am going through some trials that are VERY hard. You’re new to our congregation and yet I love your family very much.
I’m still hoping a miracle will happen and Alice will be restored and live. But, God’s Will is usually not our own will and He knows what’s best. As hard as that is to type, read, and accept, I know God is Good, all the time. All the time, God is good.
Your sermon also reminded me of a quote from the first ‘Narnia’ movie, from a conversation between Mr. Tumnus and Lucy, that Aslan (who represents Jesus) is not a tame lion, but he is good. You mentioned that God is not tame, but He is good.
Thank you.
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May 5, 2018 at 1:59 pm
My heart goes out to your family. Through your posts I’ve been keeping up with your story. So glad you post pics. Makes all the more real since I’ve never met any of you. My sister Is Sue Williams. She asked for prayers way back when this all started. I asked for prayers at my church the following Sunday and was able to show pics at coffee an’afterwards. We are a small congregation but because of our size, all concerns become personal to all of us so know there is a congregation up on the Iron Range praying right along with you. So sad for your upcoming loss, but even more happy she is in no pain. Hoping she just floats away like her big bubbles. She seems such a little sweetie, God just wants her with him sooner than later. Sad for your family, but happy she will be with our Lord for eternity.
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May 7, 2018 at 10:51 pm
Thank you for your beautiful update. I’m praying daily for Alice and the whole family. You and Alice are an inspiration.
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May 23, 2018 at 10:20 pm
I love little Alice. She is awesome. God bless her and you and all the dear family. Jesus came for my boy Feb 14 2016.. We went through all of this with him. He encouraged us constantly. I vividly remember Dr Zhu telling us he had at the most two months.
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