I left our saga in “Limbo Land,” the land of unknown between initial diagnosis and confirmation/prognosis. I’ll pick it up there and catch you up…
Last Monday or Tuesday morning, Alice woke up particularly irritable and ornery. I wrapped her up in a blanket, then in my arms, and as we laid on the couch, I figured I’d try to make up a story to tell her. Lewis did that with Narnia, so how hard can it really be?
I didn’t get far, but managed to come up with a frog she named “Ribbit” who went fishing. “Dad, I wanna go fishing.”
“Dad, I wanna go fishing.”
“Dad, I wanna go fishing.”
This is how it goes. She gets something in her mind and it doesn’t leave. But she’s not demanding, not entitled, just persistent. I knew my dear friend and brother in Christ Larry had a special place in his heart for Alice and fishing, so I asked him to take us.
Actually, I took a video of Alice saying “Please Mr. Larry can we go fishing?” It wasn’t fair to him, he didn’t stand a chance. Of course he’d take us fishing! So we set a time a couple days out, and Alice patiently waited.
In the meantime, we had good times and bad. On the one hand, we wanted to do fun stuff, on the other, Alice was too tired to enjoy it, and was pretty much done being “out.” But one afternoon when we couldn’t stand just sitting around anymore, Shelly asked to go to a state park. We went to Banning State Park up in Sandstone. Alice wasn’t crazy about it at first, and moped and griped for the first 15 or 20 minutes.
I wound up spending those first 15 minutes talking to someone from the neurology department answering questions about her recovery from the biopsy procedure. Surely this was going to be a failed outing.
But then it began to turn for the better. Alice perked up, my phone call ended, the other kids started running and playing on the banks of the Kettle River, swollen and raging from four inches of rain the night before. It was really a sight to see. I tried, with limited success, to avoid thinking that a Job-like calamity was befalling our family these days and I was going to be watching one of the other kids swept downstream. Ah, how hard it is to just enjoy life, when it seems so incredibly fragile!
We managed to get a good family selfie in, and it kind of captures our enjoyment of the day. It was fun to see Alice perk up and enjoy watching the water, try out the trails a little bit, to watch the other kids climb around and do stuff kids do, pitching rocks into the river, giving their mother heart failure, and all those things that need to happen at a state park.
On the way home, we picked up some steaks for the grill. We don’t splurge like that often, but Alice in particular loves meat, so why not? It made for a good evening, and we enjoyed it greatly. Alice ate as much steak as we’d allow. This steroid-driven appetite is crazy. It’s like there’s no “full” on her tummy gauge. So no matter how much she eats, she always wants more, and that’s miserable for us.
Next day was fishing day. Alice was so excited. Larry took us to Lewis Lake, where he’d done the no doubt arduous and sacrificial labor of “testing” the day before, just to make sure we’d catch fish.
Alice loved fishing. It was a day so perfect it couldn’t have been ordered better off a menu board. The temperature was Laodicean, (neither hot nor cold) and the lake looked like a sheet of mirrored glass. She sat in my lap, cranking in fish like crazy for an hour. The only time she isn’t talking about food is when she’s found something that captures all her attention. This was it. She smiled, laughed, and for a few blissful moments we forgot about the cancer.
After an hour, she wanted to rest. So I laid out a blanket on the back deck of the boat, set her on it, threw her blanket on top of her, my sweatshirt for a pillow under her head, and she slept. Bittersweet, I guess. Sleeping kids are really adorable, and nobody understands the value of a good nap as much as I do! But there’s also something unnatural about a 4yr. old doing what she loves doing, but just doesn’t have the gas to do it for long.
I write all this, not to bore you with things that aren’t particularly important, but to give you a sense of how we were feeling – our Tuesday meeting to get the biopsy results and prognosis was looming, and we tried not to think about it, and in some ways it felt like it might be our last week of normalcy as we knew it, and we just wanted it to last forever.
I told the dear folks at Lewis Lake on Sunday that if Tuesday didn’t arrive for 10,000 years, that’d be fine with me. I knew it had to come, and we were enjoying that sliver of hope that it might be better than we expected, but since we weren’t expecting much in the way of positive, we were happy just to let it not come as long as possible.
But come it must, and come it did. Tuesday morning we got up early, spent a few minutes as a family reciting Psalm 23 and praying together, loaded up Alice and Violet, sent the older 4 up to my brother Paul’s place (how nice to have a driving daughter!), and headed to Minneapolis.
Alice’s appointment was at 9:45. We arrived at 9:30. As we got on the elevator, we were joined by a man and his son, about 11 years old, and a lady and her infant son, who was about Violet’s age – maybe a month or two. They, like us, were heading to the 9th floor.
The ninth floor, at least as far as that elevator is concerned, is kids cancer center. You don’t go there if you don’t have cancer.
As I said, we arrived 15 minutes early. In one of God’s fascinating little twists of Providence, we sat in the waiting room for 45 minutes until we were seen. I think we needed those moments, because for 45 minutes we saw kids of all ages and all colors walk in and out of that place. We saw babies, toddlers, kids Alice’s age, young teenagers, kids without hair, kids with masks, kids with poor eyesight, and one sweet little black girl about 10 years old who looked scared, but was putting a brave face on. It reminded me that indeed, as terrible as this is, it is a trial “common to man.” It gave some perspective, and I needed it. God be merciful to these little ones!
We were called back, did the whole height/weight/vitals thing again for the zillionth time. Alice tolerates them.
Dr Chris, the brain tumor specialist we’d met back on that first Sunday morning, Dr. G., who’s been so good to us all throughout this process, and Dr. Tammie, who we’d never met before, all came in to see us. The moment had come; we couldn’t put it off anymore. My heart pounds just recalling the moment.
Here’s what we heard from Dr. Chris, in a nutshell, carefully putting my own words in his mouth…
“The biopsy confirmed that Alice as a DIPG tumor. (He explained the letters; it’s Digressive something something Glioma. Google it if you like…) It’s a really crappy tumor. It’s aggressive, and we just haven’t found the key that unlocks it. It’s intertwined with all the nerves in her brain stem, so we can’t go in and take it out, which is the best thing to be able to do. But we can’t do that. If we do nothing, she’ll have two, maybe three months. We still treat these the same way we’ve treated them for years, through radiation. If we radiate this, it’ll shrink down, and Alice will have six, maybe eight months of good life. Then it will come back. That’s all we can do.”
What do you say? Ah crap, I guess. We expected something like this, but it still hurt. Hearing about likely time remaining, using the phrase “quality of life,” and once again envisioning an empty seat at the table wrenches the soul.
We heard about some clinical trials for this kind of tumor, and Dr. Chris explained what they were, and why they were closing – they just haven’t been able to beat this one yet. Bless him for looking into them, nationwide, for us.
I let slip the word “hopeless” somewhere in our conversation, since that is how it felt (and often still feels), and God bless Dr. Chris and Dr. Tammie for pointing upward, and saying “there’s always hope.” Every time I’ve turned to despair, the Lord has put someone in my face to draw my gaze upward.
It turns out Dr. Tammie has been following Alice’s case through the hospital records, knowing we would be coming to her, but a friend of hers had also sent her this blog along the way, not knowing Alice would be her patient. So how cool that even though we were meeting her for the first time, she’s had an eye on us from the medical side and the personal side already. Dr. Chris said she’s on all the prayer chains. We’re so thankful for her, and again, for all the doctors and nurses who have been absolutely phenomenal to us.
We talked about radiation. Five days a week, sedating Alice, putting a custom-made mask over her head that holds it perfectly still, and blasting the crap out of this thing (not a technical medical term, you understand) with incredibly accurate beams of radiation, if I understand correctly, coming from multiple angles, all designed to hit the tumor and essentially nothing else. This buys us some time. That’s where we are. Redeeming the time. The days are indeed evil.
Dr. Chris walked us through the difference between “what’s best for Alice” and “what’s best for us.” When the tumor comes back, there are things we can do to eke some extra days out of her life, but they make life very miserable for her. God help us, we want what’s best for her, but no doubt it’ll be hard to not give her what could prolong her life, even if it’s just briefly postponing what seems, at this point, inevitable for a few more hours.
After they left, my wife said to me, “All night long, I kept waking up with the song ‘He Will Hold Me Fast‘ running through my head, and I thought, ‘Why can’t it be a different song??'” Indeed. Shelly says more in one sentence than I can say in a book.
We returned home via Famous Dave’s to feed our ever-famished daughter, tucked her in bed for a nap, and told the kids the news. That was tough. And yet, I don’t know if it’s because we’ve been expecting this kind of news, or if it’s because we’re acclimating to this new life, or if we’re just emotionally drained, or a combination of the three, but we don’t cry so much anymore. We just don’t have it in us. I for one feel bad about it sometimes, like I must have lost my soul somewhere along the way, but it’s just how it is.
This morning we returned to the hospital where Alice got another CT scan, this time to “map” her head for the special mask they’re making, and they installed a little “port” just below her right shoulder. It’s more or less a “quick-connect” for IV’s and such. It’s buried below her skin, and they can just poke into it to administer the sedatives she’ll need for getting radiated, and whatever else. I guess if her life involves getting put to sleep at least 25 more times, this will be a help. But it’s tough.
She understands that she’s going to the doctor, but hasn’t yet made the connection that she’s sick. I’m glad – her innocence and ignorance is our bliss.
The remainder of this week is quiet for us. I get to preach on Sunday, and I’m very much looking forward to it. My assignment – “Your Father knows how to give good gifts to His children.” No joke. Pastor Bob said I could trade it in for something different, but I think there’s no greater text to wrestle through. If I can’t look into the face of my little girl and know that all gifts from my Father are ultimately good, I don’t think I have any right to stand in a pulpit and tell all my fellow sufferers (because we are neither the first, the last, nor the greatest of sufferers, by any means!) to lean heavy on God’s goodness.
Speaking of leaning… We are still praying what we’ve prayed since the beginning – “Father, we wanna keep her. Really bad.” I wrestle in my soul how much weight I should put on God’s healing hand. I’d stake my life and rest all my hopes on the truth that He is able to take this cup from Alice; I don’t place quite so much weight on the hope that He will take it away.
I’m helped by three phrases from the Bible – “who knows,” “if not,” and “nevertheless.”
David’s son was dying, and he begged God to save his life. God sent the affliction, God could remove it. I take it that David placed all his weight on God’s ability. Yet he said, “who knows whether or not God will be merciful?” I think that means he didn’t lean too heavily on “God will fix this.” Hope, yes. But a hope that, if not realized, didn’t leave him tumbling to the floor, having nothing else to hold him up.
Shadrach and company were heading into the fiery furnace, and they told Nebuchadnezzar, “our God is able to deliver us. But even if he does not...” God is God, whether they walk into the furnace and have a leisurely chat with Jesus and walk out 10 minutes later, or if they walk into the furnace and are incinerated. “God is able” will hold all the weight you can put on it. “God will” can’t bear that same weight.
Jesus was staring at the cross; His own horrifyingly brutal execution. And He prayed, “If possible, take this cup from me, nevertheless, not as I will, but yours be done.” Jesus could rest all the weight of the world on the Father’s goodness, love, and ultimately His good purposes. But the notion that the cup could be removed, while it could carry some weight and give perhaps some comfort, was never meant to bear that much weight.
Sometimes the hope “God will” doesn’t come through. Sometimes it collapses, and the one whose soul is resting only on that hope will fall with it. “God is able” is where we’re living. And we’re still gingerly resting on “God is willing,” but we’re finding that we aren’t placing as much weight on it as maybe we did even a few days ago. We hope, we pray, and we believe beyond a shadow of a doubt that God is able to take this cup from us. Will he? We hope.
One last thought – I keep thinking of the little line from Jonathan in 1Sam 14:6, “It may be that the Lord will work for us, for nothing can hinder the Lord from saving by many or by few.” We’re going to do the best we can to fight this thing with and for Alice. We are, by God’s grace, prepared to accept losing her, whenever God may ordain that day.
Even though I’ve planned her funeral a thousand times in the last couple of weeks, I am constantly brought back to this: We still have her. She’s sleeping in our bed, as I write. In an hour, I’ll lay down my head beside her, she’ll wake up a little bit, put her arms around my neck, I’ll say, “You’re so special, Alice,” and she’ll say, as she always does, “You’re special, Daddy.” And so we’ll keep at it. We’ll hope and pray and figure out our way through this, knowing that God is not hindered by saving with many or few. We’ll do some things right, some things wrong, we’ll offer up some “many” and some “few,” no doubt, but we take heart that we serve and love and worship a God who can save no matter what.
We hope He does. And we pray, with Moses, the man of God,
“Make us glad for as many days as you have afflicted us.” Ps. 90:15a
God help us.
Thank you so much for all your notes, texts, comments, cards, and the overwhelming expressions of affection and love. We read them all, we love them all, we draw so much encouragement from them. We are so blessed. – joe, michele, natalie, emily, jojo, kylie, alice, and violet.
– top photo is another Alice selfie, by my request, taken on the way out the door Tuesday morning.
October 11, 2017 at 8:54 pm
Dear brother we love and pray for your family so much during this time. Keith let me know the details today about 20 minutes before I preached a funeral for a lost man who is the father of a church member. The Lord providentially timed it so I could use your little Alice and the passing of the man in the casket as a segway into the reality of life and hope of Christ alone to save us. We love you and your wife. I have shed some tears on your behalf today before the throne of grace.
October 11, 2017 at 10:55 pm
My dear friends, I think of you as such, although I only met you briefly a few weeks ago. I was a school nurse, and so I have seen some of the agony of people who have gone through situations like this. God gives needed grace as we need it, and perhaps it is small comfort to hear how much your blog touches me. When you feel the time is right, I have a poem that I got from the parents of a little 5 year old girl named Becky who was one of my “kids” at Birch Grove Elementary School. It speaks of God loaning us children and it is really beautiful. When you need it, or when it might enhance your life please let me know
October 11, 2017 at 10:57 pm
We are praying for a miracle… Because that is Who God is… You have all our love and prayers and a huge hug. You are our brothers and sisters in Christ.
October 11, 2017 at 11:36 pm
You have no idea how much Alice’s story parallels Hannah’s. God’s ways are not our ways. We are amazed at the things we learned personally and as a family going through this trial. God will heal your little Alice, in His time and in His way. He loves her!
We will be here to pray you through this valley. ❤
October 11, 2017 at 11:45 pm
Constant prayers are being sent for Alice and all of your family.
October 12, 2017 at 12:01 am
Thank you so much for the update on sweet Alice. My heart hurts to try to imagine all you are going through but just imagine how hard it would be if we didn’t have our Awesome God to be there with us each step of the way. We prayed for your family at Bible study tonight and prayed for healing for Alice. The one bit of comfort through all this is that either outcome she will be healed- either on this earth or in heaven. We can only see one tiny piece of God’s puzzle and it doesn’t make any sense. When God gets all the pieces together we know that it will be the most beautiful picture ever. Praying daily for your family.
October 12, 2017 at 1:15 am
Hey Joe. It’s been a while. I know this is going to sound trite, but thank you. I know you can’t and don’t especially feel it right now, but your insight and faith to rest in God and His sovereignty is powerful, encouraging, and deeply convicting. I have wept over your situation, and I feel that my trust in God is so juvenile when I read your words. Thank you for recording this and sharing it. I need your trial right now to help me be reminded that we serve a compassionate, personal, and powerful God. I love you guys. I will be praying.
October 12, 2017 at 5:40 am
Thank you for sharing. So many Christians are praying for your precious Alice. Your trial has a profound impact on all who hear of it and drives us to the throne of grace. The Lord will continue to use your pain in so many lives to His glory. May you continue to realize His greatness, love and wisdom as our Lord shows Himself faithful to meet you at your need ;”Day by Day and with each passing moment….. “
October 12, 2017 at 8:19 am
I just wanted to let you know that my heart truly grieves for all of you. Your words are encouraging and challenging to me in so many ways, thank you for allowing God to use your hurt to help others.
October 12, 2017 at 9:10 am
“When doubts filled my mind, your comfort gave me renewed hope and cheer.” ~Psalm 94:19 (my prayer for all of you!)
October 12, 2017 at 8:48 am
We are so hopeful too, expecting a miracle from God. Little Alice has touched us and so many that we know God is working in his people too. Our prayers to Alice and the family that his grace continue to hold you in his loving arms. Thanks for your blog!
October 12, 2017 at 9:12 am
My wife and I are praying for your little Alice and your family through our tears. When I first met you at Lewis Lake I instantly liked you and adored your family. Reading your blogs have brought tears to my eyes and tears streaming down my wife’s, but also at the same time it’s been a amazing story of faith in God no matter what happens , which is not very common in this world anymore. Thank you for your courage and honesty in your blogs. Sarah and I will continue to pray for little Alice and your family.
Love and prayers, Mark and Sarah Hron
October 12, 2017 at 10:31 am
I believe people are brought to Christ through situations like this. The journey to heaven takes different routes and sometimes we have the opportunity to bring others with. Could it be that Alice is bringing along many others in her journey? I know that reading your blogs and seeing and hearing about your family has caused me to reach out to God and bring my life closer to Him.
Love and prayers, Paul Vedders
October 12, 2017 at 10:45 am
Our hearts ache for you but we are truly encouraged in our faith by your obedience to his word and your trust in him. We will continue to pray for beautiful Alice and your precious family ❤
October 12, 2017 at 10:57 am
First of all I would like to thank all in this glorious family of God. Then permit me to extend the blessing of peace and grace to each of you through Jesus Christ.
What I see in this horrific trial is that a beautiful extended family has come along side of the suffering family members and has emerged as a portrait of God Himself. His love knows no boundaries and you are reflecting that love and compassion.
Some of us have never or will never meet until eternity and yet you are freely sharing a portion of the “oil and wine” that has been poured out on you during your trials. You are telling us about the character of God and how He has proven faithful to you.
As I walk with you in prayer through this journey and read these postings, especially from the heart of those in the middle of it all, it is like getting one of those pictures on my little cell phone; putting my fingers together and stretching it out so I can see details. With each posting I am seeing glimpses of God and a great big beautiful mural is being stretched out before me as to His all-encompassing love and sovereignty. Family of God, you are sharing His character as you have gotten to know Him through your trials and afflictions. You are magnifying or glorifying our Father. You are telling the world He is worthy of being trusted even when it is your most prized possession on earth. You are making His name Great because you know Him and are eager to share Him with those who will listen. You are inviting us to worship with you as you help us to know Him better as well. He alone is worthy of worship! We bow before our Sovereign Lord and continually commit precious Alice to Him. How Great is our God! Thank you!!
October 12, 2017 at 11:11 am
Your words are so challenging! They confront me every time. We continue to pray for you and your family. I would love to hear that sermon on Sunday. May God continue to use you.
Love from Costa Rica 🇨🇷
October 12, 2017 at 11:49 am
Praying for you! I know the blessings of a child and the pain of his loss. If your family has to take the pain of Alice’s death, be assured that after time the light of her life will illuminate the hole that will be left in your heart.
October 12, 2017 at 12:12 pm
Hello and God bless, I have been following your story on precious little Alice. My heart breaks when a young one is hit with something so horrible. I feel I should write you and ask if you have looked into natural / alternative ways to rid her of the tumor? I am a Christian and fully believe the Lord heals us. In 2012, I really started to believe this and God gave me some situations to test my belief. My granddaughter fell down the stairs (she was 3) and I was upstairs. When I rushed down the stairs, she was upside down with her neck bent backwards. I picked her up in one quick swoop and just said “Jesus.” Her neck should have been broken. She got up and wanted to go back to playing. That same year, I discovered lumps on my cats belly and knew it was mammary cancer because I had a cat before that passed from that. I took her to the vet and it was confirmed. After talking about how much it would cost and no guarantee that she would be okay, I told the vet I was going to pray and that God would heal her. I started doing research and discovered that LEMON JUICE kills tumors. As I was praying for her daily, I was adding a little bit of lemon juice to her water. That was 5 years ago and she is perfectly healthy today. In 2013, I was diagnosed with stage 2 colon cancer. Mine was operable and I had them remove it all the while standing on the fact that is was God that healed me. I drink lemon juice in my water all the time now and I’ve changed my eating habits. I really believe that chemo and radiation are poison that God never meant for us to put into our bodies. He has given us things in the earth that can help us. Doctors will deny this because of the link to the pharmaceutical companies and how much they are making from these poisons. I do believe God has given us the technology and science for these brilliant doctors to help us and the development of some medications that are really helpful. I pray for your little angel all the time. I am also praying for the Lord to lead you and your wife and that He will comfort you all and give you peace that is beyond our human imagination. God bless you all.
October 12, 2017 at 2:27 pm
Please watch this and research a Christian man, Chris Wark and his testimony and teaching about beating cancer! Please God has given us everything we need to fight and beat disease including cancer. Watch the video please!
October 12, 2017 at 6:18 pm
May God help your little Alice. My thoughts and prayers are with your family.
October 12, 2017 at 7:37 pm
We have been praying our hearts out. I have shared this with some people at work that are praying as well.
Please let us know if there is anything we can help with.
Ron and Lisa Coleman
October 12, 2017 at 8:45 pm
Please know that we continue to pray for all your family!!! We love you guys!
October 13, 2017 at 7:33 am
My friend just went through this battle with her son. I can ask if she would share what she found. Feel free to email me. There is a Dr in TX they were trying to get him to.
October 13, 2017 at 9:06 am
We don’t know you but a friend posted your initial blog entry about Alice on Facebook and my kids have been faithfully asking about her and praying for her everyday. We will continue!
October 13, 2017 at 10:35 am
Hello Joe, Michele, and family,
I’m a sister in Christ from Bethany Bible Church with a daughter about Alice’s age. Joe, we met the last time you preached at Bethany (I don’t expect you to remember). I can’t read your posts without sobbing, I feel for you and I’m praying for you.
As I read your post about the doctor saying there is nothing else he can do for the DIPG tumor, it made think of this new breakthrough & advances for this specific tumor that many doctors don’t know about yet.
Perhaps I’m being presumptuous by posting this link (and I’m sure you’re getting bombarded with information right now), but if it were my Rebekah in Alice’s position, I would want to know any and every option available to her.
God bless you all, and thank you for your example of leaning on Christ through suffering. As God leads you, please take a look at this:
October 14, 2017 at 9:37 am
Joe and Shelly, we are still lifting you up in prayer to our Great God who spoke the world into existence, knows each star by name, and keeps our tears in a bottle. We know God is able to deliver Alice and you! We are also pounding heaven’s gates to let siblings and cousins see how great God is, especially in the hard. Let us know if we can bring or do anything for you all. Love Chuck & Jennifer Hervin
October 14, 2017 at 8:49 pm
My 13 year old daughter has DIPG. She has been living with it for 14 months. She has had theee rounds of radiation I’d love to talk to you. We share the same faith and a fellow friend who told me about your daughter.
October 14, 2017 at 8:50 pm
The last anonymous is me , sorry didnt leave my name
October 14, 2017 at 9:13 pm
Catherine again. We used a lavender spray made for radiation patients on Mollys head where the beams were targeted and a gel called calendula. Her radiation oncologist was thrilled with the condition of her skin She didn’t turn pink or burn or peel as my mother did during her radiation treatment for breast cancer. I didn’t know about this stuff for her. I bought way too much for one person to use. I’d be happy to send it to you. She still lost hair at the radiation sites, but healthy skin was left behind.
Radiation will make her sleepy. decadron or dexamethozzone makes children eat more than teenage boys. We’ve had to purchase molly several new wardrobes. I wish I’d had someone to walk this journey with At the beginning when I had so many questions.
Praying for you as few others can. Praying for Alice.
October 14, 2017 at 9:34 pm
Many prayers and many tears from Colorado.
October 14, 2017 at 9:41 pm
In reading our devotions Thursday night a verse came up that we thought might encourage you. It is Isaiah 40:11 “He gathers the lambs in His arms and carries them close to His heart.” May the Lord,”who tends his flock like a shepherd” guide and hold you through this difficult time in your lives. Our hope and prayers are for a miracle for Alice.
October 15, 2017 at 10:50 pm
Thanks again for your continued writing allowing us all to have glimpses of what you are going through. Praising God for your continued deep faith. We continue to pray for you all and ask for God to show Himself real in tangible ways every day, every hour. Just know we care and hang on to every word.
October 16, 2017 at 7:37 am
This was very hard to read. We continue to pray for your family.
October 17, 2017 at 10:47 am
Through these storms with your daughter – it is amazing that your daughter does not make the connections of her condition ~ but why would God give her that information – it would only cause fear in her. It sounds like she is living a life filled with life, a life of hope – it is your love hope and faith that moves her forward each day.
If you have not heard of Joan Hunter, she prays for people of cancer all the time and sees results of healings. Here is a link to one of her video’s she has many https://www.youtube.com/watch?v=cvzqe919ywY. She is located in Texas, but right here close in MN are some very anointed people with the Holy Spirit gift of healing cancer specifically who see fruit from their prayers. I would love to come pray for your daughter and you as a family.
Praying from a standpoint of victory! ~ Valory
October 17, 2017 at 3:16 pm
Joe: I heard about your sweet Alice from a mom whose daughter also has dipg. I’m a dipg grandmother myself and started a nonprofit in honor of my granddaughter, Jennifer, which provides free professional photography (the shoot, all of the edited digitals on a flash drive for your future use, an album with 4×6 prints of everything and your selection of $150 in beautiful canvas prints). I ordinarily wouldn’t post all of this on a blog but want to get the information to you however I can. You can get an idea of what we do at http://www.quietstrength.org which, although quite out of date, has the basics. Also, my daughter is always willing to talk to other families dealing with this horrible tumor and I can put you in touch with her at any time. [meet Jennifer and her family at http://www.unravelpediatriccancer.org] I know that photographs aren’t the first thing on your mind right now but, if you’re interested in having a shoot (and I ask the photographers to take lots and lots of shots….which is important for people like you and me who have large families!)….and you call the shots as far as the style you’d like, the location, etc. My only suggestion if you’d like to accept this offer is that you get the photo session sooner rather than later. I read that Alice is taking steroids and, while helpful, they can change the child’s appearance. I know that she’s having radiation treatment but we’ve done many shoots during that time (including some amazing photos taken of Jennifer) and, if you’re interested, we could set something up very quickly. Whatever you decide, you and your wonderful family are in my heart and prayers and I will check your blog regularly for updates. [In case you haven’t learned this yet….many families set up a separate Face Book page for the child and/or fundraising sites like GoFundMe to help with financial needs, fun trips, etc. There are also FB pages for dipg families…one for support/sharing and the other discussing research, clinical trials, etc. I hope to hear back from you when you get a chance….at email@example.com Once we’re in communication via email all I’ll need is your residence address and phone number (necessary for the photographer to contact you and for later shipping). I’ll take it from there! God bless you all. There is hope! Mary Scharrenberg
October 18, 2017 at 10:07 pm
Joe and family,
Been joining you at the throne of grace since we heard. The Hill difficulty lies ahead for you and you know full well there is no safe way around it. A Hill who’s upward traverse may seem all downward but who’s downward trek I fear may be the deeper trial. May God cofirm His sovereign grace in Alice, sustain you all in your continued waiting on the Lord (Psalm 27:13-14), and may He do exceeding abundantly above all we can ask or think.
Yours to the bottom of the Hill and to the Celestial city,
October 19, 2017 at 12:57 pm
I am asking the Lord to pour out His kindness by giving you, as your daughters advocates: every kind of wisdom & insight to know what steps to take & that you can hear from the Holy Spirit, his plans for your daughters future. His plans are always good. Jesus Christ rules above cancer ~ power & authority are in His name, so I put cancer under the name of Jesus. Blessings & Peace to you and the family!! Valory
October 23, 2017 at 11:36 am
Hi Joe, I’m a dipg advocate who’s been supporting families for many years. I’m here to help with anything I can. I will post Alice’s page so that others can donate and join in praying for her and for you all.
I see you are not on Facebook but your wife is, here’s a link to our closed support group if she would like to join. It’s a great place to meet other families and get information about trials and treatments. I know the diagnosis is a shock and overwhelming with so much to take in as you navigate radiation so I often suggest that you get a family member or close friend to join and get information on your behalf. I will post the link at the bottom.
I also work to join up families who live near each other, for support and then try to link people up to others who are doing the same trials and treatments. I’m on Facebook as Jo Enoughoftherare Bishop if Shelly would like to contact me there or I can put you in touch through email if that’s easier. Please feel free to message or email at any time. I don’t know everything but I usually know someone who does.
We are praying for Alice, never give up hope.
April 18, 2018 at 10:47 pm
We have been walking with our 5 year old daughter this year as she has battled cancer herself. We will be praying for your sweet family and for Gods perfect peace upon you all. Thank you for sharing your journey.