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.

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”.

-

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.

The after...

*reposted from the original facebook post

The after. A diagnosis. B-cell lymphoblastic lymphoma.

Isaac is tucked into my bed right now after this whirlwind of a day. There are still many questions and I think I am largely running on adrenaline and faith. Somehow, I am still raising a hallelujah in the middle of this storm. Right now, this diagnosis brings a calm where there once felt chaotic unknown. And it lays a path in front of us that lifts the fog a tiny bit.

The results of two of the tests that they ran on the initial biopsy showed b-cell lymphoma. The oncologist told us we basically had a 0% chance of it being anything else. Clear results? Thank you Lord. She is also hopeful that, because his labs have looked so good and he has zero other symptoms, that it likely isn’t heavy in his bone marrow. As she told me what they found, she repeated over and over and over, “this is a very treatable cancer.” She said based on what they find, we expect over a 90% cure rate. Cure. As in never coming back. Let it be, Lord. This is the most common form of childhood cancer and there is so much research that has paved the way for the path ahead of us. For that, I am thankful.

The future looks like a PET scan tomorrow. We are claiming health on the rest of his body. Praying that his heart and internal organs will remain untouched. A stage 1 diagnosis is what we want.

On Tuesday, Isaac will go into surgery. It will be a lot all at once. A spinal tap, a bone marrow test, a biopsy to remove one lymph node for further testing, and a port installed for chemotherapy. This information will help us know how far the cancer has progressed.

Out of all of this, I’m struggling with chemotherapy. I never imagined such a poison coursing through my child’s body. Let what evil intended for harm, do good, though. The Lord can use it. I’ve always been very naturally minded and am passionate about nutritional healing. I intend to do as much research as I can to support Isaac on this journey. I already have a list of alkaline anti-cancer smoothies that we will be trying. Our whole family will have to be in on this change though. Because we’re in it together.

It is clear to me that the Lord has gone before us. I met with my counselor this morning… an appointment that was set weeks ago. My counselor is a former nurse who used to work at DeVos Children’s hospital. She has been a wealth of information and support. She, herself, also had lymphoma a couple of years ago. Her family knows cancer better than any family should. I’ve had this thought numerous times, but she said to me today, “Isn’t it interesting how the Lord brought you to me before any of this began?”. I cried. The Lord was already here, and he’s already in the future. I agreed with her. I’m so so thankful… while at the same time aching, wishing I didn’t need any of this.

As we were ending our appointments, the elders at our church were having a prayer meeting. We went to church and they laid hands on us and prayed healing over Isaac. We have been a part of our church for the past 10 years, and in so many ways they are family. This weekend we are still going on a house church retreat with people we’ve done life with on a weekly basis for years, some for a decade. We’re not alone.

Everyone is asking how Isaac is. I think he’s digesting the information as much as a 7-year-old can. He keeps asking which part is going to hurt the most. I think he’s sad and nervous. He probably wonders why mom is crying so much (although that’s not all that abnormal, let’s be honest.) But gosh, his sweet spirit of bravery makes me love him that much more. He tells me he talks to God as he falls asleep at night and I pray that this continues to be his comfort.

We have a long road ahead. Treatment is years long. But there is so much hope for this story. Thank you for your prayers. The waiting has ended and now the battle begins.

Suspicious.

*repost from original facebook posts

The doctor called during lunch. Not expecting any results yet, I answered expecting him to just ask how he did. But quickly, I learned that we do have results and they are not favorable. Suspicious is the word they used. I also quickly learned that when it comes to making appointments with pediatric oncologists, they just call and tell you when to be there. And life suddenly has to revolve and fit around the people who we’re entrusting to make our child well.

Isaac’s biopsy returned suspicious - his white blood cells don’t look right, and they want to do a full excision biopsy to get a better idea what they’re dealing with. To nail down a diagnosis. I asked my doctor if it could be anything but cancer at this point, and he said probably not. He can think of one instance where they got to this point and were surprised that it wasn’t. So while we don’t have a diagnosis, it feels like we do. Tomorrow he goes to a pediatric surgeon and a pediatric oncologist for more follow-up.

We told Isaac what was going on. He’s sad about more appointments, surgery. But this kid is the sweetest you’ll ever know. He smiles when he’s sad or nervous or unsure. We asked him if he knew what cancer was and explained in kid-terms that it’s possible his cells aren’t regenerating the way they’re supposed to, and while he doesn’t feel sick, it’s good to catch this before he does. We warned him that the road to get healthy cells is long and can be hard. But we’re there to the ends of the earth for him. We then called in the brothers and got them up to date. It’s so hard when life looks so very normal to be on the cusp of something very much not. Hard for a 7-year-old to understand.

All week I’ve felt like I’m in the middle of a before and after. The waiting is torturous. Before what? Cancer? Or a cancer scare? I’m feeling more like we have an answer.

But again - God hasn’t left us alone.

Jordan was supposed to be in Dallas Monday-Tuesday. His trip suddenly got switched to Tuesday, so he was able to go to the biopsy with us. Then, today, his flight kept getting delayed. Because of that delay, he was home when I got the call of the results. I was so anxious that I would be alone getting these phone calls. And now, because of the delay, he was able to cancel his trip and go with us the appointments tomorrow. I know all of this is the Lord. Not a doubt in my mind.

I feel like the Lord has given me the song “Raise a Hallelujah” all year as an anthem. It has spontaneously played in the car twice for me just this week when I didn’t select anything. The Lord. Two friends have randomly sent the song to me. The Lord. This song is filled with the spirit and was written for a boy who was brushing death as a claim to healing. And the boy was healed. I am believing that this is the Lord helping me speak life over this situation. I believe that the Lord is bringing this song to me as hope for healing.

I’m so sad. No parent wants to see this sort of message with their child’s name and picture attached to it. You don’t think of your kids life including hardships like this. But I also keep thinking of the idea of suffering producing faith. And it is my prayer that this journey will be a testimony for Isaac (and us) to bring hope to the world. I’m allowed to be sad and mad and devastated and angry and confused and all those things. I’m also allowed to have extravagant hope. It is all of it.

The before...

*repost from original facebook posts

This ask puts a pit in my stomach, but we don’t get to choose the hard in our lives. My sweet Isaac Lee needs prayer. Over the course of the last couple of months, Isaac developed a very large lymph node in his neck that grew quickly. We took him to the doctor a few times, and an ultrasound scan came up abnormal. Tomorrow morning at 8am, he is undergoing a biopsy to check for malignancy. His primary care doctor told us very frankly that he is 50/50 on the lymph node having cancer in it.

I hate it. And it is scary. But I will also say, God has made his presence so very clear. He is a great physician and the author of my (and Isaacs) life. He has shown me over and over that he loves me and he wants me. And I know he wants the same for Isaac. I also know he is a miracle-working God. So we’re praying for benign results and complete healing. But we’re also trusting his goodness and his plan no matter the results. I’m preaching to myself, because my mind doesn’t always want to believe that he loves Isaac more than I do, but he does. Right now - the biggest battle is in my mind. Second by second, choosing not to give in to the pit of “what if’s” and live in surrender. I believe that the same God who has raised people from the dead is the one who works in my life right now. I’m expectant for healing.

I was texting with a friend late into the night last night as I couldn’t sleep, trying to explain the tension of hope and fear I was feeling. She wrote, “Your body is doing exactly what it is supposed to. You cannot reason with your mind or have a body that’s wired for survival contain your love for Isaac. So the love is trying to explode out your body. In fact your love would go to the end of the earth for him to save him. And if your earthly body kept you from doing that, you’d wage war against your body to escape it… so now, when fear grips, say ‘thank you body for telling me just how far and deep and wide my love for my boy is, now thought please go take a seat over there while I breathe my next breath.’”

And so I did - I took notice of the whole jumbled mess of emotions I feel and labeled it love. I recognized that I would absolutely crawl out of my skin to save Isaac if that’s what it would take. I would take his place a million times over. And suddenly it hit me.

That is exactly what God the Father did for us. He saw us hurting… a future separated from him. And he literally crawled out of his heavenly skin to take our place. He suffered. He died. And now, because I’m made in his image, that same passion I feel for my kids first started with his passion for me. For you.

That whole mess of emotions. It’s all wrapped up in love. It’s messy, but it’s love. If there is anything 2019 taught me it is to believe that God loves me and wants me just as I am. He just keeps taking me deeper.

We expect to hear on Isaac’s results on Thursday or Friday. I’m emotionally depleted. The kids have watched far too many screens, because I feel like I’m holding my breath and right under the surface. But I know God can handle my big feelings. He made me this way. And I think he is this way. So I’m going to believe that when the feelings are bigger than I think I can handle, it is God joining me in the overwhelming love I have for my kids. And I’m going to try to let him carry some of the load. And breathe.