At this point, we don’t have much more to say as far as Alice’s condition. Writing helps sort out the scattered thoughts of a beleaguered mind, so what follows is more therapy than journalism.
We’re home, awaiting the pathology results and then the process of working through treatment options. More thoughts on that a little later. I call it “limbo-land” because we’re sort of in our old “normal,” wondering what the new “normal” will be like when treatment starts. In the meantime, we talked with her doctor and reduced her steroids to half of what they were, and that’s having some favorable results.
Alice effortlessly ate 4 boiled eggs for lunch today. To say she’s been really hungry is like saying Spurgeon was an ok preacher. She’s been voracious. Hopefully the reduced steroids help curb some of that. Our biggest challenge is trying to help her not eat constantly, especially when everything in us wants to dote on her every wish.
Our church family has been incredible. Saturday night Natalie and Jojo went with me to a special prayer meeting the church was holding. They weren’t expecting us, but we wanted to go and pray with them. We were stunned and amazed to find 30 people gathered together, with tears in their eyes and deep affection in their hearts, as they passionately prayed for Alice and our whole family. We are so deeply moved by the love these folks have for us, a family of relative strangers.
Sunday we returned to church, this time as a family, all 8 of us stuffing in our 7 passenger van to enjoy something of a “normal” Sunday morning. As an aside, I don’t plan ahead well, even when I know mathematically that child #6 is going to mean we don’t have a vehicle we fit in. But my moderate disregard for vehicular seating safety opens up options that get us all squished in!
Mostly we went because we needed to worship. We needed to give thanks to God for His grace, we needed to express our dependence on His wisdom. We sang “Remember Your promise, O God. Your grace is enough.” We needed that.
We were greeted with ribbons – almost everyone was wearing one – yellow with a gray stripe. Gray for brain cancer, yellow for pediatrics. We’re so new to the church, I doubt I could pick Kim Swenson out of a police lineup, yet it was she who loved us enough to make 150-200 ribbons to minister to our hearts and remind the people to pray for Alice. God bless you dear sister!
Pastor Bob preached on “Be anxious for nothing, your Father knows what you need.” It was awesome, and a great encouragement for our weary souls.
It’s been good to be spending these last days with Alice, Shelly, and the family, unencumbered by the typical attention-grabbing, time-consuming tasks of normal life.
In times of upheaval and uncertainty, it seems our minds try to take the pieces that compose the puzzle of life and somehow figure out how they all fit together to make a bigger, more beautiful picture. We need to know that all the little pieces, especially the ugly ones, are both necessary and useful. And I have to say, there are some really big and ugly pieces we just found in our puzzle, and we are struggling to find how they could ever be part of something pretty. We didn’t want these pieces. We still don’t, to be honest. In the first days, we all said at various times we hoped we’d wake up and find it was all a dream.
But it’s not a dream; it’s not even a nightmare. This is happening, this is a part of our life. We believe the Great Puzzle-Designer knows how to make a beautiful puzzle even with really ugly pieces. After all, what is the cross of Christ but an ugly yet necessary piece woven into the tapestry of the most beautiful story of all? If the execution of Jesus, attended by the sobs and tears of Mary, could result in such glory, might not a tumor in the brain of my little girl, attended by the tears of my beloved wife, somehow result in something so wonderful that we’ll actually, meaningfully, sincerely say, “Thank you Father, for crafting such a beautiful puzzle out of the pieces of our life!”
The Apostle Paul wrestled through the reality of life in a world where things end badly for everyone – no one escapes the grave – and what’s more, almost without exception, we don’t reach the grave without a significant amount of trauma en route. Yet God says through his pen that “the sufferings of this present time are not worthy to be compared to the glory that is to be revealed.”
If that’s true, (and it is!) we’ll be ok somehow. The challenge, of course, is actually believing it, when I’m staring into the eyes of my little girl, feeling like she’s got a bomb in her head exploding in slow motion. My head believes; my heart is sometimes slow to catch up. How can this kind of suffering that we’re going through ever be worth it?
The answer that comes to mind so often is this: I don’t know how it could ever be worth it! Anything that worthy is entirely beyond the realm of my experience. I’ve told a couple of people, “If losing Alice meant world peace, leave the world at war, and leave me Alice!” I can think of nothing that would make this “worth it.” But I believe in a God who doesn’t show all His cards, and who has surprises in store for Alice, and for the rest of us, that actually will make this ordeal, however it finally resolves itself, “not worthy to be compared” to the ultimate resolution. After all, isn’t that the point of the phrase “the glory to be revealed?” It’s not revealed yet. We don’t know what the results of this suffering are. We must trust that when it is, we’ll actually be jubilant about it.
But honestly, sometimes that seems far off. So we pray, God help us trust. We believe, help our unbelief! It’s one thing to believe when it doesn’t cost much in the way of emotional output; it’s quite another to believe when we’re trying desperately to accept the fact that this piece of our puzzle has to fit in somewhere.
We want truth. When the sun is shiny and the biggest problem we have in the Reed house is the fact that the eggs coming out of the coop are plastered with crap, cutesy coffee-cup phrases and bumper-sticker Christianity seem so charming. Chicken soup for the soul is fine, if your soul only has a minor cough.
We don’t cling to the Bible as a crutch. God is our witness, we never did. We believe it because it’s true, and if it wasn’t, we’d drop it and go on to something else. I’m an optimist, and I hope for the best, but so help me, I’ve got no time for living in a dream world of make-believe. But we are now living in a world where hard truth is hard to come by. Our world is full of maybe, probably, might happen, should, most likely, and wait and see because we don’t know. We’re looking at a future that’s incredibly foggy.
So we need something to grab on to that doesn’t move. “God loves Alice more than we do,” seems to be one of those helpful rocks on which we are anchoring our souls. He loves her unlike we would if we were Him, that’s a fact, but that doesn’t mean He must love her less.
This thing with Alice hurts. I like to think I have dragon scales covering most of my soul; not much hurts. But God is a sharpshooter, and he doesn’t bounce arrows off the scales, He drives them into the heart, and they hurt. I used to sometimes imagine what it might be like to go through something like this, but it never hurt this bad. In my mind’s eye, all the theology came rushing in, and I faced the darkest of foes with a smile on my face and a song of victory on my lips. What a dope. The theology is still there, and I need it, and it’s holding strong. The song is still there, and I sing it, and my soul is moved. The comfort of brothers and sisters is there, and we are swimming in an ocean of affection we never knew existed.
But it still hurts. Bad. Deep. It hurts when I look at Alice and see the effects of this tumor on her face and in her body. It hurts when I look at my wife and see the pain in her heart. I like to be Mr. Fix-it for her. And I can’t fix this one. I like to be Mr. Homeland Security, but this snuck in and I couldn’t do a thing to stop it. The feeling of helplessness sucks.
God give us wisdom. We live in an age of information. But it turns out, not all available “information” agrees with itself. God help us to navigate our way through. One expert’s cure is another expert’s poison. Amazingly, none of them ever seem to fail! I’ve heard of so many successes, but only privately have we heard a couple of times, “we tried this for our daughter, but it didn’t work, and we lost her.” Strangely perhaps, those stories of “failure” are the most comforting. In the glamorized internet world where the successes are set before us, tantalizing us with promises of the weird being miraculous, and the miraculous being assured, the thought that we might be the only ones who totally screwed up and didn’t do what we should have done, to the detriment of our little Alice is really a heavy burden.
We find ourselves living in a day when it is more or less “common knowledge” that every problem has an avoidable cause and available cure, you just need to know what to avoid in the first place, and where to look in the second. The difficult downside to every solution that’s proposed to us (and we can’t try them all!) is that it leaves us with the feeling that if we choose the wrong one, we’re ultimately to blame for the outcome. It’s complicated further by the suggestion lurking just below the surface that if we’d only led the right lifestyle in the first place this never would have happened to begin with.
I’ve never been a fan of the Gospel of Nutrition, and even though justification by righteous eating alone (I believe the latin is sola non-deliciosa) may soon find itself as a 6th pillar of the Reformation, I’ve never quite bought into it. I once wrote an essay about it (which, if you like, you can read here), and even though there are those moments when I wonder if there’s something to the notion that we brought this calamity on our own heads by riotous living in the frozen pizza aisle or excessive revelry under the Golden Arches, the comfort I have is simply this: There is ultimately no hope of anything beginning or ending well ever outside the grace of God, and if God’s grace is greater than my sin, it should be able to handle all our other challenges, which are minor by comparison.
Therefore, God give us grace. And as we say, God help Alice.
Picture credit to Alice. She used my phone this morning for a few “selfies” sitting in the front seat of my car. (I know, I know… at least we weren’t moving at the time…)
October 4, 2017 at 1:03 am
Your in our thoughts and prayers! May God bless you with wisdom as you face decisions to come!
October 4, 2017 at 1:13 am
Continued prayers for your family ❤ our hearts are with you and in our thoughts often float back to positive thoughts for your family ❤
October 4, 2017 at 1:20 am
I just wanted to thank you for sharing Alice with me during Sunday School. She’s absolutely adorable! I was truly blessed. Continued prayers from us to you.
October 4, 2017 at 1:23 am
My heart aches for your family. Thank you for your transparency through this difficult journey; I am not sure I could be so honest. I don’t have comforting words to offer but I do have my prayers and the love of a fellow believer that God would embrace your family, especially little Alice and provide comfort and peace through this uncertain time. No one knows the plan of the Master but may the process that your family is going through bring Him Glory.
October 4, 2017 at 1:32 am
You have no idea who I am and honestly I had no idea who you or your precious family were until this horrible situation popped up in my FB newsfeed through mutual friends. But I have been thinking of and praying for you, for all of you. I can’t even begin to imagine what you are going through but in my own little corner of the world, learning how to cling to God in spite of (or maybe because of?) mountains that God chooses to keep unmovable is something that I find myself practicing all too often. That being said, music is very comforting to me and as I was sitting in my car in the Walmart parking lot today, a favorite of mine came on and your sweet family immediately came to mind. I have no idea how this is all going to “play out” but I am praying that no matter what, you can still cling to Him…even if.
October 4, 2017 at 1:44 am
Prayers continue daily…
October 4, 2017 at 1:53 am
I hope that you are keeping this as a journal to help others who may have to walk this path. Praying continually for you. My study group at Park Forest is praying for you also.
October 4, 2017 at 3:26 am
You do not know me, but I grew up at Lewis Lake Church- choose to become a follower of Jesus there, was confirmed and baptized there, was married there and have been supported in ministry by them for over 30 years. I can not think of a better group of people to walk with you through this storm. I have read your posts with great interest. You are a gifted writer and you allow us to feel your pain by your transparency. Thank you. May His Shalom peace surround you-the peace that passes understanding. Continuing in prayer for you and your family, Diane Norman
October 4, 2017 at 3:37 am
Joe & Michele,
We prayed for Alice on the prayer chain at my new church and there’s someone who has had a similar personal experience with her son who is now 26. I have not felt sure about this as you said, “One expert’s cure is another expert’s poison.” You can call her if you’d like. I can text or email the full message and her number.
Precious Alice. I really don’t know what to say, except this verse came to mind.
Ephesians 6:13 Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to Stand Firm.
Stand Firm, friend.
October 3, 2017 at 11:02 pm
We used to attend Ashley Baptist Church in Michigan, and I’ve been following Alice’s story as folks from there share your blog posts. Today’s post prompted me to reply. We’ve walked the road you are on. 7 years ago, while we were overseas as missionaries, our 12 year old son was diagnosed with cancer. So many decisions to make; so many recommended alternatives. We did do several things, as God put them in our path and provided for them. One of our biggest prayers was that God would direct our steps and our decisions even when we didn’t see our understand the future ramifications- that when we would look back, we’d see that even when all seemed a blur, we’d see how He led us through the bewilderment. God answered that prayer and gave us peace, even through what eventually proved to be a misdiagnosis and a need for different approach. As one prayer supporter reminded us, “Now we know what God already knew all along.”
You mention those rocks anchoring your soul. For us, it was the truth that carried us through our son’s 3 1/2 year battle. Before Benjamin was born, God already knew the day of His birth as well as the day of his death. We would affirm to his medical team that this cancer would not cut his days short, even by a day. And nothing we did would add to the number God already had counted. While we tried to choose wisely and pursue options available to him, ultimately, we did not need to grasp at straws, trying everything to desperately try to add one more day. God already knew our path, and He would walk it with us. And truly, His grace was always sufficient. And it still is.
October 4, 2017 at 12:30 am
For someone who seemed to think, at the beginning, that you were just rambling on you did an extremely good job of bluntly and eloquently portraying so many of our thoughts when making decisions for Hannah.
Thank you for sharing your side of Alice’s story. It will be beautiful because God will heal her. In His time. In His way. ❤
To Benjamin’s parents:
Thank you for sharing your beautiful story of faith.
October 4, 2017 at 5:00 am
God Bless you as you journey through this difficult time.
Lord Jesus cover this family with your love, strengh and healing.
Prayers and hugs to all.
October 4, 2017 at 7:13 am
We are continuing to pray, keeping your entire family close to our hearts..
October 4, 2017 at 11:58 am
As someone who has been through 2 types of leukemia and a stem cell transplant, spent months in the hospital, I understand your thoughts. May I recommend the book “Off Script, What Happens when God Rewrites your Life” Was very helpful to my family https://www.amazon.com/Off-Script-What-When-Rewrites-ebook/dp/B0058UEO4K/ref=sr_1_1?ie=UTF8&qid=1507136054&sr=8-1&keywords=off+script
October 4, 2017 at 12:56 pm
I am continuing to lift your family and beautiful Alice in my prayers. Thank you for sharing your blog. It helps us who don’t personally know you to know how to pray. God is merciful and he hears your concerns. Continue on believing.
October 6, 2017 at 7:56 am
Wow…..such powerful and true words. Many are praying for all of you. Thanks for sharing.
October 6, 2017 at 8:56 am
Beautiful words! SO confronting to me. We continue to pray for little Alice and your family.
October 20, 2017 at 7:14 am
I was sharing with my friend and asking her to remember your family in prayer this week. She asked me if your Dr’s. knew about the treatment they are doing for brain cancer at Duke in Durham NC. They have been using live polio vaccine to treat brain tumors and have had positive results in both adults and children. I told her I would share the information with you. Your Dr’s may already be aware of this, but it doesn’t hurt to share. Keeping you in prayer. I attend church with your cousins in Michigan.
November 5, 2017 at 5:54 pm
It’s refreshing to me, to read your blog. Having been raised in church, it’s a challenge for me to hear so many people use the word ‘praying’ so much that it begins to feel like a word, or actually praying to God for things to happen. He isn’t a magician, in my opinion. He feeds our spirits and guides us if we’re willing to put our hand out to Him. When we are mindful of His grace, we can build strength to endure life.
My point is that your approach is realistic in that you admit it feels awful, but you work on learning to accept His will. I appreciate it your truth. I am very glad you have the support of your church community and family. That will mean the world to you as you go along-especially on days where you want to make a cushion fort and stay in there coloring all day.
My son, Sam, had DIPG.