Questions about healing...

It was early January 2020 when we left our first day at the hospital and drove down Michigan avenue, turning left instead of right to go straight to our church.  It had already been a long day, full of cancer diagnosis discussions and a treatment calendar which now dictated our life.  But at the recommendation of my counselor, we interrupted our church's elder meeting.  I had a burning in my spirit to fight for my boy.  I walked into that room as a dozen pairs of compassionate eyes turned toward us, confident that this moment was going to be an integral part of Isaac's healing journey.

There were a couple of men in that room who had been on their own cancer journey.  One, battling lymphoma, a diagnosis similar to Isaac's.  He dropped to his knees and put a hand on Isaac's shoulder, "We have something in common," he says. 

And after a few moments of sharing our journey, the elders gathered around our family, laid hands on Isaac, and we begged God for life healed and whole for our boy.  Jesus' ministry and the first church is filled with stories of people being healed, and I imagined the cancerous cells in his body melting, healthy blood filling his veins. I half hoped that we would be surprised at the results of his tests the following week.  I hoped that we would be able to declare him healed in Jesus name without any need for chemo.

In the moment, I  believed this was a key moment in his healing. At the same time it felt like just a drop in a bucket of hope. Would this work? Would God heal him? And now, a year and a half later, how much can I trust that Isaac will stay in remission?

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Last month I sat with a decade-long friend and we reflected on our respective cancer-journeys as our youngest ran circles around the playground.  She began to tell me about a prayer meeting she was at for a family who lost their mother at her school. 

"I realized that I have never asked God for complete healing.  Why haven't I asked him for complete healing?"  she said.

The religious circles we ran with in our childhood didn't speak much of healings or miracles.  As if those things occurred in the scriptures and stayed there.  Laying hands on someone or anointing them with oil and praying for healing was far too charismatic an idea for a seeker-sensitive church.  Yes, God was with you.  Yes, he will never leave you.  Yes, he will comfort you.  And yes, I think he could heal you, but we're not totally sure how that works out in the days of modern medicine.  Do we even give God a chance?

But nonetheless, when Isaac was diagnosed, we brought the oil, the laying-of-hands, the prayer, all in the name of healing our boy, because I had an intense intuition that this part really mattered.  In those early days of diagnosis God was so near, I felt his presence penetrate my thoughts and my emotions.  As if the Spirit in me was turning them into his own groaning prayers to advocate on my behalf.  My thoughts, a continuous conversation with God, begging Him to first, not make me walk this road, and then when it was clear where the road was leading, please let it be the road to healing.

Yet, I never believed that healing Isaac meant that he didn't meed medicine.  I prayed over every dose of chemo, repeating the prayer that the chemo scorch the cancer and spare the child.  Even in scriptures, Jesus used the things around him to bring healing and miracles.  Clay over eyes and skin to bring healing.  He used the fish and loaves he had to multiply, not starting with nothing. God has always used the things of the earth, the things at our own disposal, to bring health to his people.  In fact, if you read the gospels and the book of Acts, miracles of healing are one of the cornerstone ways that Jesus begins his ministry and reveals the true heart of the Father to people who need hope. I fully believe that our physical body's healing matters to God, and that he has given us tools around us to lead us there.

As I sat with my friend on the bench near the monkey bars, I lamented how I felt so sure of God's healing power and nearness early on in our cancer journey, but now, nearly two years later, I often wonder, will this stick?  It's like the question of, do I have to pray for salvation again every time I sin? I feel the doubt in my body and I'm drawn back to begging God to not leave us, even though he has already promised that he won't. It's when the emotional connections fade. When the dramatics of diagnosis season end, and we feel forgotten.  "How much can I trust that the laying hands and oil worked? Like, did it stick? Can we move on now?" I ask my friend.

Of course she doesn't have the answers, "You have no clue what this journey would have been like if you hadn't invited God into it." And so we sit in the balance of trusting what we know, and still having a million questions about what a life healed and whole really means and really looks like while we're on earth.  Why does God heal some people's physical body's and not others? Why are some roads so damn hard and some more straightforward? What should I expect when I pray for healing? And what does it mean when it doesn't seem to work? 

These are the questions that haunt us during our days numbered on earth, but at the end of the day, I don't believe we should be afraid to ask them, wrestle with them, dig deep into them and be honest about our questions.  I have peace with the fact that I may never have all of the answers. One thing we do know is that our earthly bodies won't last forever. Each and every one of us will say goodbye to this world someday. At the same time, God is for us, for our healing, and for our complete wholeness in Him now. He draws us near to him and wants to be invited into our most painful moments.  He tells us that he will create a new heaven and new earth that is free of pain and suffering. This trust that this world isn't all there is, there is an eternity without pain and suffering, is the only thing that makes the next step possible some days.

A friend once told me that we are in a dark room peeking out the window and God is the expanse of the sky.  We only have a sliver of the vision of what God is up to. And many days that means trusting that the God who put the stars in the sky will keep it all in motion, even when I cannot see.

On waiting for hope...

We recently started our holiday puzzle. I’m not sure whether my accompanying emotions suggested I was triggered or grateful. It was nearly a year ago that I obsessively put a puzzle together in that very spot after hearing our primary care doctor first utter the word “cancer”. We sat in silence, trying to pull the pieces together while we waited to hear if his blood work demanded that we urgently head to the ER. If I could just focus on the next piece, breathing deep, eyes shifting between box cover and table, then I could give myself something to do besides spin and break. Anything asking for more of myself would have been too much. Now, the puzzle is of Star Wars rather than the explorer scene I selected last year. As we sit, Isaac and I quietly reminisce about the appointments in-between the piecing last year. I remember these days as the worst of my life. Part of me wants to never do a puzzle again. Sitting in that same spot again, something guttural in me wants to burst. I’m just below the surface. But once again I breathe, sorting pieces, saying that cancer isn’t going to take this from us. Even this feels like another battle won.

I have been texting with two different friends today, each about their respective cancer diagnoses. I got a text from another friend whose parents have covid, dancing around the question of going to the hospital. Nothing about this year is normal. This is not the year to feel guilty about our tainted gratitude. Many of us are breathing through the pain, just getting through the next day, questioning if what was once joyful will ever feel normal again. We find ourselves waiting for our own glimmer of hope. We wait in anticipation, in this broken world, for a sign that we will be okay.

Especially now, we long to know that the broken things will be made whole again. But I’m starting to think that the lesson of this season isn’t about avoiding everything painful and broken, but walking with both gratitude and grief hand in hand. Knowing God turns everything upside down. When I ache in grief, I am somehow that much more grateful for who he is. In the moments where I have felt most broken, most desperate, he sees. He knows. He cares. He’s never given me cliches to stuff my grief, make it less intrusive. He makes room for it, welcoming it into the weaving of my story of need and hope. The thread makes it beautiful as it shapes who I am and who I am becoming. The lie of comfort as the goal becomes less and less appealing, I’m learning that pain means I’m beautifully human.

My deepest breaking began during advent, with the pairing of a world breaking down with the hope that this isn’t all there is. In my darkest days, I longed for eternity, for a new heaven and new earth where sickness and sadness and cancer and racism and division were all untrue. We still live in that tension, of a babe already born, died, and risen - and a world not yet made new. This is our glimmer of hope; we will not be left in our pain forever.

While we were still waiting...

It was the day before Christmas when we went for the ultrasound.  The whole drive there, I reassured Isaac in the back seat, “Remember? You’ve had an ultrasound before. They’re just taking a look at your lymph node and then it will be over. It was fine last time we looked.”

My husband would be quick to recall, despite my reassurances, I did not feel so calm about that ultrasound appointment. Ever since that day when he looked to the left to reveal that mass in his neck, I had some sort of radar blaring all sirens.  Something wasn’t right.  Cancer or not, something isn’t right with my baby.

We celebrated Christmas, all the while trying to push the whole idea out of my head.  With every tilt of his head, I would steal a glance at his neck, begging for the lump to look smaller, or perhaps, just disappear altogether.  My longings never became truth and the day of celebrating was a dense fog for me. However, I watched as our kids delighted in the festivities and whispered a prayer of thanks for the way a child can be so intensely present in each moment, without worriment and rumination taunting them.

On the twenty-sixth, we had plans to drive up north to visit Jordan’s side of the family to celebrate.  We piled the family and the dog into the Odyssey and had just pulled onto the highway when I got a call from the pediatrician. Something about the ultrasound is abnormal. They want to do a biopsy. Expect a call to schedule that. *click*  Abnormal.  Abnormal isn’t good.  Against my better judgment and the advice of every friend and counselor I’ve ever had, I spent the car ride flipping between Isaac’s ultrasound report and google. Words like multi-lobular and conglomerate were used to describe the lymph node, and nearly everything I read associated that with malignancy.  To be fair, I also know Dr.Google can associate headaches or a bad knee with cancer if you go digging enough. But this piece of information wrecked me, and I had to get through the next few days with family somehow holding it together.  I had enough information to feel wrecked, and not yet enough to know what was going on.  To this day, that weekend remains one of the most intensely difficult of this whole experience. The fear, the waiting, was eating me alive.

Panic attacks swallowed me whole that first night at my in-laws. One right after the other, my chest was so tight I physically ached.  I took the advice of my counselor and got out of bed.  Staying in bed while not sleeping rarely actually leads to more sleep, surprisingly enough.  I scoured the book case for something familiar and easy to get my mind off of my sick boy.  As I settled down to read, I ended up setting the book on the table beside me and just sobbing.  Alone, in the quiet dark, I finally had a moment to have it out with God. I sobbed like a child who wails until the last of their breath exits their lungs, and a mother has to gently remind them that they need to breathe. Between gasps, I wailed. Why? Please don’t make us walk this road. I don’t want to walk this road. Please don’t make us.

The next day, I sent a text to my dearest friends that said this.

I don’t remember if I was dreaming or praying, but last night I was experiencing putting all my fears and even Isaac in Jesus hands. And I had this sense of his asking me, “will you also let me hold your heart?”  Like this burning anxiety in the center of my chest is a heart so broken that I feel like I literally can’t hold onto it anymore.  And Jesus was asking me if he could hold it for me so I don’t have to try and function with a broken heart.  This morning, the tears are still here, but that burning crawl-out-of-my-skin anxiety is not.

Perhaps that is when I realized that God was not actually going to take this cup from us.  He was, however, going to walk it with us.  He was holding us, weeping with us, assuring us that he sees, loves, and counts our tears.  He was writing this story, and I could either trust that he is good and that he sees every part of it front and back, or I could try to manage all of my pain and fears on my own.  What I learned, was why God says, blessed are the poor in spirit, blessed are those who mourn, blessed are those who are at the end of their rope, those who feel they’ve lost what is most dear to them. Only then will you experience his embrace. And sometimes, we’re still sobbing in that embrace. 

Normal.

The breeze is more chilled these days. The turn of the seasons bringing with it decades of memories. Fall has always been my favorite season. Perhaps first because I love snuggling up beside a campfire in a sweatshirt. Second, because my October birthday always was something to look forward to. Last year in October, I remember we almost didn’t celebrate. The entire family had just had a week of nasty colds with a lingering wet cough that left us exhausted. But we had the offer of family pictures from my brother-in-law. In the end, we were grumpy, but we hiked a quarter mile into the woods in our sweaters, threw the leaves into the air and smiled for the camera. Months later, when I looked at those photos, I would see something that I didn’t notice on that day. A photo of Isaac looking to the left, a lump sticking out of the right side of his neck.

Grief and guilt and sadness intertwine and I’m not always sure which I’m feeling. I noticed that lump on Isaac’s neck weeks later. He had always had reactive lymph nodes, so I made a mental note, a slight thought of “wow that’s a big one” and carried on with life. It didn’t go away after a couple of weeks and I texted images to my nurse practitioner friends who affirmed my “wait and see” approach. It wouldn’t be until nearly another month later, on December 17, that we would be sitting around the table eating dinner and he would turn his head to the left again to reveal a massive mass on his neck that had popped up overnight. I left the dinner table to call and make an appointment with our primary care doctor the following day, and that ball began rolling and it still hasn’t stopped.

I don’t know if Isaac had cancer this time last year. Sometimes I wish I knew, but mostly I long for the naivety that last fall brought. In January, we met his oncologist for the first time and she beckoned us to believe that this is a very treatable cancer. Her kind eyes made me want to believe, but I quickly learned that once cancer becomes a regular part of your vocabulary, treatable is not synonymous with easy. She told me that for much of treatment, we will be able to go about life as normal. Picture soccer games, vacations, a hair-covered-head back-to-school.  However, for so many reasons, normal is something we left behind around December 17 of last year when we first noticed that mass on Isaac’s neck. We will never pick up that normal life again.

That is the first thing I have learned to grieve. Normal.

Some days it’s hard to be in groups of friends making plans to carry on with their life, traveling, mothering runny noses, planning birthday parties. I feel the line drawn dividing the before and the after. They are living in my before. In my before, I would have been planning and laughing along with them, but instead every bruise brings anxiety and every fever has us on edge. It is not their fault. But it feels like our journey of childhood cancer is a big elephant in every room that nobody can see but me.

I think part of the reason why I have been so hesitate to narrate this journey is because I desire to wait for the happy ending. For the hard to be redeemed and for the questions to be answered. But that simply isn’t life. Especially not right now. So, at the risk of being a downer, I’m going to do my best to simply be real. Because grief strikes when you least expect it, and there are many days when I find myself sad about things that I never realized mattered in the first place.

There is only one “but" to this that brings light. BUT God. BUT God’s people. BUT Jehovah Rapha. I found myself in Psalm 56 weeks ago, where it says “you have kept count of my tossing; put my tears in your bottle. Are they not in your book?” Through all of this, God has shown me that he sees. He hasn’t forgotten. He sees my tears and he is telling this story. From the beginning, I’ve had to look at our story with the end in mind… that God has wonderful plans for us and for our boy and that through this fire he will refine us, his people. But the fire burns. I feel my insides screaming and some days I want to crawl out of my own skin to take the place of my boy. I would if I could. I wish I could speed ahead years to when I am certain that we’re okay. I want the story without the journey. I want the fruit without the flames. But refining and healing takes work and it takes time.  So we continue to take one day at a time.

Awareness month.

September is childhood cancer awareness month. An awareness month most people don’t know exists unless you’re somehow forced into awareness. Cancer touches you and suddenly this “c” word is a normal part of your vocabulary and it becomes the lens through which you see life. I never in a million years imagined this would be my life, my boy, my motherhood.

I have longed to share our story. But in the thick of it, words were not found. I had to simply sit in the murky grief, taking one step at a time as I cared for my boy. As I saw September creeping on the calendar, I knew I wanted to share more. There have been many moments where words didn’t suffice. In the moment, the response to “how are you?” felt so complicated and nuanced that answering even as genuinely as I could, barely scratched the surface.

So I’ve decided to write during the month of September. Awareness month. I desire to process and explain what the past 8 months have been like for us, as much as I can. I share because I want friends to know - to be in the loop on our story and not be afraid of it. To ask, to pray, to sit with it if you wish.

Early on in diagnosis, I felt the Lord impress on me that whatever is given to me is for the good of the body. This story and the lessons we’ve learned are not for us to hold closely and never share. The goodness of God is and will continue to be written all over our story, and it is meant to be shared.

So, during the month, I will write about diagnosis, about childhood leukemia, about anxiety and God. About fear, about hope, about chemo and cancer in a pandemic. For some reason, it feels a bit scary, nerve-wracking to first of all, put words to all of this and second of all, to challenge myself to share it with others. But it also feels like obedience. It feels like healing. It feels like remembering that God has had us all along. I don’t know what’s going to come out, but I hope that through this, you feel welcomed into our story.

It's leukemia.

*reposted from the original facebook posts

It’s been a hard day. We learned that Isaac has more cancer cells in his bone marrow than we expected. This changes his diagnosis from lymphoma to leukemia. He has B-ALL leukemia to be exact. This is the most common cancer diagnosis in children. It doesn’t change a lot in terms of treatment or prognosis. It does mean more tests for him though. I think his lymph nodes flared up just in time to tell us something was wrong. In terms of bone marrow, it seems we caught this fairly early still. His labs still look great, so this was kind of a surprise.

It’s hard to see your kid go through all of this. And I don’t even know the half of it yet. But it’s not hard to be here by his side for it all. He’s still the same amazing boy he always was. Loving him through this is the easiest part and it’s my joy. I’d do anything if it meant seeing him conquer this thing and get better. I have no doubt he will.

He got his first chemo this afternoon. It kind of choked me up, though it was quite uneventful. A one-minute push drug and done. We haven’t seen any ill side effects yet, but it is still early. But we’re praying he’d be spared of those. Torch the cancer, spare the child.

We also got the good news that there was no leukemia found in his spinal fluid! Yay!! It would have been a different level of treatment had it been there, so we’re thankful he remains low risk. His labs are still awesome. Sometimes all this seems like a dream because he seems so healthy.... minus the massive lymph node in his neck. I have to keep reminding myself that while this treatment is awful, it is also saving his life. I’m so thankful for all the testing done and that we live in a time where there is a 98% remission statistic. We anticipate his cure. The road there will be long and already, this has changed us deeply. But God has met us. He will continue to.

We are bone tired. I’m not sure I’ve ever been so tired and I’ve had 3 babies and an adoption halfway across the world. The emotional exhaustion of all of this is unmatched. So. I’m going to bed. I know I said I’d do a care page. Soon.

“Cancer” has become a part of our regular vocabulary. And when that happens, everything normal stops and suddenly everything spins on a dime to focus on this one thing. It’s impossible not to have whiplash.

Every food, every commitment, every outing... now through the lens of cancer.

I’m thankful that our lifestyle thus far will make some things easier. Isaac is already homeschooled, so while he’ll miss coop, we have already been on break for over a month. I have made similar dietary changes to deal with leaky gut and inflammation to the ones I’ll be having Isaac make. Healing with food and detox and essential oils is familiar ground to me. I’ve found some resources to help me learn how to pair this with chemo. Both to help him heal and support his body during this rigorous protocol.

Chemo started and was very uneventful. We haven’t really seen any side effects of it, but I know as chemo builds up in his body, that will change. We do feel like side effects from the steroids have begun. The massive appetite and toddler-esque mood swings from our usually super chill boy. Jordan and I just catch each other’s eye as if to say, “there it is.” But having a two-year-old and three boys, rolling with the punches with cranky behavior isn’t as hard as it once was. Plus, he’s cute when he’s mad.

It seems weird to be devastated and thankful all at the same time. But I simply am. Most people will never experience the outpouring of love from their community that we have. Cards and gifts and messages. We are being held up when our own arms feel too weary. We’re so loved. Isaac told me tonight that he talks to God every night and asks him to heal what’s not right in his body. He then said his heart is going to burst it’s so full of love. Followed by the statement that he sometimes wants to eat Naomi she’s so cute. Yes and amen.

Isaac.

The name “Isaac” is a way-making name. Biblically, a pregnancy where there was biology and doubt in the way. A ram provided in the wake of surrender. It’s a name that, when things look grim, God shows that he’s more powerful than science. That he loves his people AND their children. And today, it’s showing me that God knew this story on the day my boy was born and we named him, “Isaac”.

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In his bath tonight, Isaac asked, "Did God give me cancer?"

"Hmmm." I said, "What do you think?"

"No," he said, "I think God is who is keeping my heart beating."

I can't think of a more important truth.

When the breaking comes.

*reposted from the original facebook post

Breaking down seems to come in waves. In hospital bathrooms. PET scan rooms. Early morning hours when I wake up and remember the road before us. Sometimes I’m not sure that the fog lifting is helpful at all. I have a lot of fear surrounding the path of chemo. But I can surrender and breathe... or worry and go down that hole of chaos in my mind. I waffle between both.

But God has gone before us so far, and he won’t leave us. He is so so kind, my friends.

Yesterday, my oncologist called to give us the PET scan results. I missed the call somehow, and in returning the call a kind woman answers the phone to reconnect me to our oncologist. She asks me my name, and then proceeds to tell me that she is Kris. A woman who messaged me days ago because she’s spent 25 years working in peds oncology and she goes to my church and heard of our journey. I started crying. She encouraged me, saying, if you get a cancer diagnosis, this is the one you want. The kids and the parents do the best. It’s so treatable.

If I hadn’t missed that call, I would not have gotten that encouragement that I so desperately needed. My mind has easily slipped into the hole of “what if” with chemo and having a sick, immunosuppressed kid. The Lord is so kind.

The other good report, Isaac’s PET scan came back great. It seems the cancer is localized to the lymph nodes in his neck and there is no sign of it anywhere else in his body. We prayed for this and God answered. She still has to test his bone marrow, and spinal fluid. But at this point she’s considering him a stage 2 diagnosis. I am still thankful for that.

Tuesday will be a big day. I’m not looking forward to all of that surgery for him, and a port being installed. Every step forward makes the nightmare feel more like reality. But we’re going to do everything we can to make this boy healthy.

I think from this point forward I’ll make a care page to update on Isaac, so people who want to follow can. I’ll also probably write on my dusty old blog. It’s therapeutic for me and I’ve been impressed upon since the first signs of this that this is a story I’m going to want to write down. I believe we’ll see miracles and the goodness of God.