note: Since I (Joe) am not on social media, but we have many friends with whom our only contact is through the digital pipeline, I’m going to use this site as a platform to share my heart and thoughts about our little Alice. Please know that we’d love to hear from you, but for reasons our own, leave your comments here on the blog instead of Shelly’s Facebook, and we’d greatly appreciate it.
In various conversations around the dinner table over the last couple of months, my wife and I occasionally discussed the fact that it seemed the “light” had gone out of our little girl’s eyes. This was significant, since Alice’s full-featured smile could infamously light up a room of any size. She has seasonal allergy issues, so we chalked it up to that, and did the whole Zyrtek Allegra Claritin thing.
Then she seemed a bit more unstable from time to time. Shaky might be a better word. Not much, just a little. But still our happy little girl (and she still is, by God’s grace!). Last Tuesday I came home, and she met me at the door, which she often did, and as we talked together, I noticed her eyes weren’t quite tracking with each other. Not crossed, and not really a lazy eye, just not quite in alignment.
I mentioned this to Shelly, and she said she’d been thinking that same thing for a couple of days, but that maybe it was just her worrisome nature making things up. But if I saw the same thing, we thought we’d get her checked out. Wednesday morning I brought her to see an LPN who suggested some additional allergy treatments, gave us a referral to an allergy and an eye specialist, and sent us home. In previous experience, it takes weeks or months to see a specialist, but when Shelly called, they had an appointment for Friday morning in Wyoming, MN.
We watched, Shelly worried, and when Friday morning came, we really only had one question for the allergy specialist: “Do allergies make eyes misalign?” Answer: No. Then some additional allergy info, and we left, I took her to Target to buy her a teddy bear (and for once, I was hoping she’d pick the expensive one. She made a solid mid-range choice, and when asked his name a thousand times over the next two days always called him “Bear.”) Then we headed back home. On the way, we called the Pine City clinic once again, figuring we’d try to be seen by someone else, and lo and behold we got an appointment for 3:00 that afternoon.
As Violet and I sat in the waiting room and Shelly took Alice to be seen, the Doctor took one look at Alice and said, “I don’t know what this is.” He ordered some blood to be drawn for lab tests. A nurse came to get me, to help hold Alice while they drew blood. I sat holding her while two nurses worked on getting a needle in her arm. They had just got the needle in, (and I must say, Alice was amazingly calm, as she has been this whole ordeal) and they’d missed the vein and were trying to find it when the Dr. walked back in the room, told them to stop drawing blood, and pull the needle. Weird.
The nurses left, Shelly was off with Violet, and the Doctor said to me, “I called down to the Children’s hospital, and actually got a neurologist on the phone. He said bring her down. Take her to the ER, it’s Friday night, but we don’t want to wait until Monday. I’ll tell them you’re coming.”
So, we swung by the Dairy Queen to tell Natalie our plans, by the house to grab an overnight bag (how my wife manages to get all the essentials and miss nothing in a matter of 5 hyper-stressed minutes is beyond me), kiss the other kids good-bye, and headed down to Minneapolis.
Thank the Lord for friends and family who dropped everything to care for the kids over the next couple of days. We’ve not had a request denied us, no matter how inconvenient it’s been.
At the ER Alice went through a battery of little tests. Look at the light, follow my finger, push my hands, walk, jump, stand on one leg, etc. Shelly and I answered a zillion questions. They said her eyes weren’t technically crossed, and in a moment where no medical people were in our room, we said to each other that one of the Doctors had eyes that sort of matched hers. Probably this was nothing.
Little Alice, naturally shy, slowly warmed up to every one of the doctors and residents who came in and ran the same little tests with her. She must have followed fingers and looked at lights and touched this or that a thousand times. But at the end of a few hours, it sounded like they were sending us home.
But before they let us go, the ER Doctor made one more call to a neurologist, and when he returned from that call, his tone had changed. Now we were staying the night. She was going to get an MRI.
So they moved us “upstairs,” got us settled in, and over the course of that Friday night it felt like a million more “follow my finger, what’s your bear’s name, look at my nose, push on my hands,” and blood pressure readings.
Shelly had about had it when Alice didn’t finally get enough space to fall asleep until about midnight, only to be woke up again (which is no small feat for a sleeping Alice, as those who know her can testify!) to look at the light, squeeze fingers, etc.
The MRI happened about noon. Alice, exhausted, fell asleep long before they sedated her so she wouldn’t wiggle while in the machine. That was a long hour and a half, sitting in a waiting room, trying to eat, holding Violet, knowing nothing, while I mused aloud to Shelly that we might be just wasting everyone’s time and money. She assured me we were not, which was helpful but hardly comforting.
As we sat there, a voice that was trying to be calm but was clearly panicked came over the intercom: “Code 21, unit 1, code 21.” Was that Alice? What’s going on? I googled code 21, and actually got a sheet from the University hospital. Code 21 is a potentially explosive situation, apparently something like a volatile patient about to go ballistic. Well that wasn’t Alice. But it showed us how raw our nerves were.
Then the MRI was done, and we went back to sit with Alice as she woke up, very slowly, in her Alice way. Back to the room to wait.
After an hour or two, a young man walked into our room and introduced himself as a neurological resident. He asked us a few questions, said something about “showing us the pictures,” talked to Alice for a little bit, and then walked over to the computer. As he was taking us over to the other side of the room, he said, “They don’t call in a neurologist to deliver good news.” He said they’d found a tumor at the top of her brain stem. As he pulled up the scan of her head, I was looking at a little black dot wondering if that was it. He pointed to a massive white section, right in the middle of her brain. “This is the tumor. This white thing isn’t supposed to be here. This is not good. It’s basically inaccessible, we can’t get to it.”
Gulp. That thing was (and is still, at this point), gigantic. He talked us through the concept of lakes of fluid in the brain, and how the lakes drain down rivers, and this tumor is starting to make the rivers smaller. Then he explained how a child’s brain is so “plastic” and developing so rapidly, it learns to develop around the tumor, and function with it in there. But at some point, the brain can’t handle it anymore, and that’s when you start to notice some of the symptoms. These things usually show up by the time a child is Alice’s age.
He wasn’t hopeless, but he wasn’t hopeful. So far, I guess we can say the same for pretty much all the doctors we’ve talked with. The hospital’s brain tumor specialist came to see us on Sunday morning, which to me was a testament of the gravity of the situation, since I don’t think he typically works Sunday, and he talked to us a little bit about sending us home for a few days while they assembled a team to do a biopsy because, as he said, “I want to see this thing under my microscope,” ran some of the same little tests – follow my finger, look here, squeeze this, push that – and said to the team that followed him, (rather cryptically, to us) “I’ve seen what I needed to see,” and was gone. But we liked him, he’s the only one thus far to use the term “determine the path to recovery,” which still rang a little hollow but we hope he knows what he’s talking about.
An hour after he left, the hospital’s chief neurological surgeon came to see us, and said, “You won’t be needing us, as this is inoperable.” I asked “What’s the procedure for doing a biopsy?” I wanted to know how they get a needle in the middle of her brain to get the tissue. “Oh, we don’t do biopsies on this kind of tumor. This is a gliomic tumor. We only do that if we don’t know what it is, and we know what this one is.”
That was news to me. I told her the previous doctor said he wanted to do one. “Oh, I see. We haven’t talked and I thought I’d get here before him. Well, a biopsy will give us some specifics that may allow you to enroll in clinical trials and experimental treatments.” Hardly comforting terms.
I avoid googling medical things, but just because I wanted to try to get some idea of a prognosis and the doctors had (and thus far have) carefully avoided giving us one (which I don’t blame them for, as their information is still incomplete as I write), I checked out gliomic brain stem tumors. There are apparently two kinds, one is mean and nasty, and the other one is more docile and treatable. They only biopsy the docile kind. So I figure the neurosurgeon is convinced this is one of the mean ones.
One of the resident neurologists came back in our room a few hours later to talk with us again, and said that the brain tumor doctor had seen something just different enough in Alice’s tumor that he wanted to get another look at it. I think that’s hopeful. I asked her, “This feels hopeless, should we be hopeful?” She said, “I’d stick with hopeful. And enjoy her for…” and then she kind of rescued that train of thought somehow, but I’ll never remember how she did it.
My wife asked Pastor Ivan Fiske to come pray with us, and so on Sunday afternoon he did. Pastor Bob came from Lewis Lake an hour later, knelt by the bed, and wept. God bless those dear men. Shelly and I cry, a lot. But we are enjoying Alice. We are amazed by the outpouring of affection and love from all corners of our little world. It’s funny – we know God is sovereign, and if a sparrow doesn’t fall without Him knowing about it, Alice doesn’t have a tumor without Him knowing about it. But just when it seems like we should be angry with Him for not stopping it, or wonder why, of all people, it should be our Alice, we remember that He is our only real hope. So we look to the God who superintends tumors and say, “Oh God, help us trust your wisdom and grace.” I’ve often said the past few days, “Jesus loves the little children, but He loves them in strange ways.” That’s how I feel. But if I don’t understand the strange ways, I do understand He loves Alice, and He loves us.
Thursday is biopsy day. We still won’t have a prognosis for a couple of days while the pathologists do their thing. They are assembling the best they’ve got (and they’ve all been absolutely wonderful, and if I sound like I’m complaining, I’m not. There’s just not a lot of “glad game” left in me right now), which is a comfort and a concern. I wish Alice had the kind of problem the janitors could fix, rather than needing the best of the best, or the “A Team” as the resident neurologist called them.
So dear friends and family, that’s where we are and how we got there. I’ll keep you posted. In the meantime if you wish to serve us, please do these two things:
Pray. Pray for Alice. She is oblivious to what’s going on, but “what’s going on” marches on nonetheless. We beg God all the time to let us keep our little girl. Please ask Him that for us too. But we pray that God’s will be done, and we cling to this promise: “I consider that the sufferings of this present time are not worthy to be compared to the glory that is to be revealed to us.” The future, barring an unusual Providential intervention, seems bleak. But who knows, God is God, and does as He pleases. May He please to be merciful to Alice, and to us, that we not have sorrow upon sorrow.
Pray for our other five children. These are perilous days for their souls. I’d far rather lose Alice for a few short years than lose one of my children for eternity because they turned their back on God, feeling that He’s turned His back on them. God save all my kids – now, but especially forever.
Cry. God is in this, and we are absolutely stunned at the tears shed in God’s presence for our little Alice. The tears of the men of God in particular are jewels adorning Alice’s life. If tears are stored in God’s bottle, it would seem he has a barrel full for those shed for Alice, and they are indeed precious. As one of the elders of our church stood in our driveway with tears streaming down his face, I thanked God to be surrounded by godly men with soft hearts. We know in this age of information there’s a zillion different cures for cancer, and the time will come for you to share those with us. But for now, we just need to cry and seek God’s face with you, and the time for those conversations will come later.
Comfort: We love hearing from our friends and family, and if you like, leave a note here on this page. We need you. We hope you understand that we can’t physically or emotionally respond to everyone, but your kind words and deeds are not unnoticed, indeed, they minister much grace and peace to our hearts. We thank you so much.
There is much more to say, and I’m sure I could have said what I did say in a better, more gracious way. But thank you for entering this trial with us. To the dear folks at Quamba who haven’t fully let us go yet, and the beloved saints at Lewis Lake who have embraced us as one of their own already, to our family and our friends, and to those of you we’ve never met but God has called you to our side to bear this burden with us, we are so grateful.
God help us.
joe and shelly, natalie, joe, emily, kylie, alice, and violet.