It was 4am on Saturday. Exactly 3 days after the morning our lives were forever changed.
The overhead light in our fish-bowl PICU room was dim, but Luke was wide awake. (Can’t say I blame him after they stuck a needle in his arm for “routine lab work.” Not to mention, he had been in bed since Wednesday so what does the clock really mean at this point?)
Oh, sorry. Let me back up and start from the beginning. It was a typical Wednesday morning. I was standing in the bathroom frantically trying to get ready for the day. The girls were in the kitchen packing lunches for co-op and Nathan was still sleeping. On last account, my youngest son, Luke, was playing with his iPad in my bed. He had always been the first up and today had been no exception.
I don’t know when he got out of my bed or what he was doing when the screaming started. His little feet came barreling down the hall and he was clutching his head like a football. His cries were hysterical as if he had busted his head open and blood was spilling everywhere. I tried to get him to tell me what happened (imagining some sort of sibling squabble and honestly feeling annoyed). But he couldn’t get the words out.
He left the bathroom screaming and running around the house. The clock was ticking. The girls needed to leave in 10 minutes. I had an appointment that I needed to be presentable for and there was a little boy screaming in a way that pricked concern, but came with no explanation.
My heart raced from the stress and my mind was desperately trying to work everything out. Is this a big deal? Should I try to finish getting ready? Why on earth is he screaming like that? Should I still take the girls to co-op? Should I just go to the ER?
A panicked scream from my oldest daughter interrupted my thoughts. “Mom, he’s throwing up everywhere.”
It was one of those moments that probably would have meant nothing to the average mom, but my personal experience knew better. Instantly my mind went to our dear friend Joseph. At age 9, Joseph was taken to the hospital with severe headaches and the outcome was everyone’s worst nightmare: a tumor (you can read his whole story here).
As a family friend, I recall fuzzy details of those early days: the surgeries, chemo/radiation, visiting him in the hospital, even stocking the family’s fridge with healthy foods when they returned home. I would have never told you that my most prominent memory was the headaches. Well, not until that Wednesday morning.
We went immediately to the pediatrician. By that point, Luke was not looking so good. The headache seemed to have subsided some, but the vomiting did not. His vitals were ok, but he was very lethargic and had already had one seizure.
The doctor called EMS and the whirlwind of medical intervention began. Within an hour, we had already had a CAT scan, MRI, and been admitted to the PICU. The neurosurgeon was confident that the ugly mass on his labs was a brain tumor.
The next morning we had another test to double-check location and diagnosis. Then the surgery was scheduled for 8am the next day. The 3.5 hour surgery would have been an eternity if it hadn’t been for family, friends, and distracting conversation.
For brain surgery, it couldn’t have gone better. There was no excess bleeding. No damage. And most, if not all, of the tumor was removed. As I sat there just 24 hours post-op in a recliner sort of “bed” contraption staring at a huge scar and a little boy who just wanted to play with LEGOs (even if it was 4am), I tried to hold my emotions together. He tried to put together simple LEGOs, but failed. So he moved to his iPad and eventually settled to watching TV. He could manage about 10-15 minutes awake before suddenly falling asleep.
As I watched him, the reality of it all had finally sunk in. Nothing would ever be the same again. Emotions invaded places I had forgotten existed. As our child-life specialist reminded me, knowledge isn’t always a good thing and I knew too much.
I had walked alongside two good friends who had heard that big ugly “c” word. I knew about the week long hospital stays for every fever, the traumatic oncology procedures, and the life-long side effects of radiation/chemo. I had watched one friend deal with the trauma of the loss of vital functions her daughter would never regain as a result of radiation. And had watched the other bury her son after four long years of fighting.
Yeah, I knew too much. The reality of the situation wasn’t lost on me. Although we didn’t yet know what pathology would reveal, I knew the statistics. I knew the likelihood of a long and ugly fight no matter how favorable the outcome.
I opened my journal and began to write a list of things I was thankful for. It seems strange now even writing that I did such a thing given the circumstances, but I had been here before and I knew how to stay focused.
You see, our family is no stranger to hard things. We know storms and trials in an intimate way. We’ve walked abandonment, betrayal, divorce, 7-week hospital stays, multiple surgeries, and 2 miscarriages.
If there is anything I’ve learned from the hard things it’s that God is always ONLY good and He can always ALWAYS be trusted. I’ve learned that we will always look back on the journey and remember how gracious and merciful God has been to us… if we are willing to. So that morning, I penned the words of Isaiah 63:7 into my journal from memory.
I will recount the steadfast love of the Lord according to all He has granted us… that He has granted according to His compassion, according to the abundance of His steadfast love.
Underneath the verse I began to recount…
I’m thankful that I knew how serious the symptoms were and was able to quickly respond before the tumor grew into a more dangerous size or urgency.
I’m thankful that the tumor was in a part of his brain that seems to have had minimal negative impacts upon removal, as this is often one of the trickiest parts of a brain tumor.
I’m thankful that God put into place someone who was willing and able to care for the other children with little interruption to what they thought was normal life AND that she will be here for our childcare needs as we go forward.
I’m thankful that God trusts me enough with something this hard and I am anxiously awaiting how He will use it in my life and in the lives of everyone involved.
Is it cancer?
The biggest question we face now is about that big “c” word. Or so we all thought anyway. As it turns out, cancer isn’t really the topic of discussion when it comes to brain tumors. It’s more like a real estate conversation. Location. Location. Location. After that, we are most worried about what’s inside the “house” otherwise known as the cell type (and its aggression level).
Today we had our first of many appointments with the pediatric neuro-oncologist. It wasn’t the best of news, but it also wasn’t the worst. He has an astrocytoma brain tumor, often referred to as JPA for short. Typically these tumors are low-grade because they grow slowly. Unfortunately that is not the case with Luke. Although we don’t yet know to what extent, we know his is faster growing and that’s of some concern. The tumor was sent off to the Mayo Clinic for further study. We are certain chemo will be needed, but to what extent is presently unknown.
I left today’s appointment with a million things to add to my journal.
I’m thankful to have a pediatric neuro-oncologist in our town (most people don’t). Moreover, what a blessing to have one who trained at the top school for neuro-oncology and is well-respected in her field.
I’m thankful to be talking about chemo and length of chemo treatments instead of discussing life-expectancy.
I’m thankful to be able to cuddle with him tonight without wires, tubes, or 4am blood draws.
I’m thankful for friends who are willing to take time to come to important appointments with me, friends who provided meals, treats, and encouragement. And for friends who have helped with my business (read-livelihood) to help keep things afloat in this process.
I’m thankful to have volunteers and child-life specialists to help Luke feel more at ease during appointments and procedures.
Trust me, I’m well aware that you can read a list like that and think I’m crazy. 7 years ago, I would have agreed with you. Back then I knew God was the answer to our problems and I knew how to pray to get help when the first hard things came flooding into our lives with the destruction and force of a tornado. But real faith was something I hadn’t even scratched the surface of.
Throughout these years, God has shown us His faithfulness even in the littlest of things. He’s held my hand through all the hardest parts. By day, He commanded His steadfast love over us and by night His song was with us (Psalm 42:8).
What are we going to do now?
So I end this post with a challenge for you. Today, even when it’s hard, recount the blessings God has been so faithful to bestow upon you. One at a time, day by day, even the little things will bring great joy to your heart… because God is always ONLY good and we can trust that. Harder days are coming for us that include things none of us really can predict and I imagine that to be true for most of you out there reading this, too. But God is unchanging even in the darkest of unknowns. He is faithful 100% of the time and without fail.
There’s nothing to fear. Nothing to worry about. Nothing to cry or throw tantrums about (although feeling emotional is totally ok). Our unchanging, merciful, gracious, forever-loving, and never-forsaking God has already got this (and every other trial) figured out. Our only job is to walk the path carefully laid out before us with our eyes fixed on Him and our hearts full of the kind of trust that carries us from faith to faith.
Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen. (Ephesians 3:20 ESV)
**If you’d like to receive more frequent updates on Luke’s progress, read prayer requests and be encouraged by our journey, you may join this Facebook group. I will update there more frequently than posting here on the blog. Your support is a blessing to us. Thank you!