This week was meant to be filled with book launch celebration (and so it shall be too because as you will see here, we need to keep talking about children with cancer), and yet, in an ultimate and awful picture into the heartbreak of pediatric cancer and the broken messiness of life, I come to you with news that defies words.
Chase’s friend Lucas is out of curative options.
Here are some words from his parents…
“With a very heavy heart and tears in our eyes, we must write this post. This morning Mama and Papa Bear, along with his oncology team, sat down to discuss the situation. After a long discussion, it has been decided that there are no further curative options. In simplest terms, there is nothing more we can do to fight this.
We have started palliative chemo to attempt to slow the growth of the tumor. The tumor is wrapped around the pulmonary artery and is pressing on Lucas’ heart.
Right now Lucas is still playing with Legos and video games and yelling at everyone. His breathing is labored and he is swollen.
A palliative/ hospice team will be meeting us at our home tomorrow after we get discharged to work on the next steps.”
Lucas was diagnosed with a rare form of leukemia only about two months after Chase was diagnosed and the boys were often admitted at the same time and would play together in the playroom or race up and down the halls. After year upon year of grueling treatment (leukemia treatments last 2-3 years at best for littles!), Lucas finished only to be readmitted with a tumor in his lungs last July. After months in the PICU, he has barely been home before this, now…another tumor…and on his heart. An endless fight.
Oh my heart…and I hope yours too. For this should not be. Dear ones, please pray for this sweet family. For Lucas’ parents, Anthony and Rina, for Lucas’ older brother, Franco – please pray.
If you’d like a very practical way to minister to this family, Lucas’ birthday is May 7th and his parents have encouraged friends and supporters to send cards. You can show love in this way by mailing cards to: Lucas Bear Heroes, 40 E. Chicago Ave., #162, Chicago, IL. 60611
Chase and Lucas in the oncology ward playroom, Spring 2013
There may be other words, but not today. Today, I stand in silence with this…
“On my way to ER. Stopped at cross street for her ambulance…”
The sound of my father’s heart breaking through the text was almost palpable.
Back in the middle of the day, before my mom’s heart started beating like it wanted to come out of her chest, I glanced at the clock on the dust-marked dashboard of the van and saw I was late…again.
Chase had been able to go back to school a few days after the eye surgery. However, there could be no recess, no gym, and I had to come to the school and do his eye drops every day as the duration of the week required medicine to be administered every four hours.
As I headed into the left turn and the familiar road across town to his school, I felt the grumble rising in my heart. I’d had to stop what I was doing and negotiate a stubborn four-year-old into the van at his lunch time just to go cajole the bald, six-year-old patient into letting me do eye drops…again.
And then I started thinking about how most days, the hardest part of having a child like Chase post-treatment isn’t the threat of relapse. It’s the day-to-day giving of my time in extraordinary amounts. That would make a good blog post… I thought; Ten Things I Wish You Understood About Life With A Special Child…yes. It’d be trending-ly epic.
I know the dislike of sacrifice sounds a little crazy because as parents, as lovers of Jesus, and as human beings, we are constantly called to lay ourselves out for those around us in extraordinary and unusual ways, but wow, I fight it when it comes to Chase at times and I know it often boils down to secret, shameful, comparison. I look at other families around me and what they’re doing with their four kids or their six-year-olds and I suddenly chafe at my life and my “normal”.
I continued to fight and struggle through the day, mentally laying an inordinate amount of blame on the mid-day eye drops that had seriously taken less than 30 minutes of my time. But of course, I didn’t feel like being serious or literal. I felt like being sorry for myself and how hard things are when life gets interrupted by the constant call of the unusual.
Somehow, the day passed. After hearing about school, administering snacks, shepherding homework, completing another round of eye drops, and having a video conference for the book trailer, I called Bob to tell him my day had gone off the rails and dinner would be super late (again). And just as we were about to head out the door and pick up dollar tacos with friends, the text came from my dad.
The doctors use the words “atrial fibrillation” and then hyphenate it to “A-Fib” and it sounds like a medical drama show, but it really just means that the heart is at war with the body and nobody is quite sure why it starts, but my mom, she lay white as a sheet with her heart rate up at 200, feeling like something wanted to burst out of her chest and finally, when her arms and legs went numb, the ambulance came. In our vapor-short lives, things can change just as fast as a call to emergency response.
And suddenly the eye drops and dollar tacos and all of it disappeared and our kids ended up at another friend’s house so Bob and I could both go to the ER.
We were given the directions to the room, and as I turned the corner onto the A unit, my own heart nearly exploded out of my chest as I stood in front of the room I had not seen since I irrevocably followed the Lurie transport team out the door with my Chase on Tuesday, July 31st, 2012. The first cancer day.
Feeling physically faint as I had to pass the memory, we entered the sliding glass doors to my mom’s ER bay where my dad, his eyes filled with worry and love, was light-heartedly explaining to the humorless nurse how “You see, when I come into the room, Leslie’s heart goes all aflutter…haha…ha…” My whole life, this has been how he chooses hope and I love him for it.
By the end of the evening, the medicines had done their job, the color was back in her cheeks, and they talked about her “normal sinus rhythms” and used the neon green lines on the monitor as an example of her ability to go sleep in her own bed that night. And she hugged me very close and said “I’m so very glad you came.”
I carried those words and the joy-feelings of fellowship and prayer around her ER bed with me into the next day of crazy and eye drops and general life and it made me think: My mother’s heart is at war with her body and my life is still getting interrupted by little bodies on the regular, and I may yet write that post about living with special children, but I felt fulfilled despite the piles of undone things standing out in every corner of the house. And it was in this week of eye drops and hospital visits and dollar tacos that never came to be, I realized (again) that what I want for my life and what I need for my life are almost never the same things.
I want stability and normal and quiet days where my average moments could litter a home and garden magazine with their poetic beauty. God knows I need eye drops, special children, ER trips, and facing my hardest memories to keep me real and draw me closer to Him. Sometimes, you just have to walk through the door that’s been opened for you…
I originally wrote this piece a couple of years ago for my amazing friend Sheila as part of her Chicago Now Blog, Mary Tyler Mom.
Sheila is a cancer mom herself and every year, she fills the entire month of September (childhood cancer awareness month) with our stories. It’s a season that is not for the faint of heart, but then again, this is a life that is not for the faint of heart.
I know there are so many of you wonderful parents who identify with one or another of these things that have long made for extraordinary living. God bless.
I so look forward to knowing the purpose in the suffering.
In the meantime… Moment by moment.
I’m a cancer mom.
There are fourteen months of “there’s less than 20% chance”-beating treatment, over one hundred inpatient days, as many outpatient days, ER runs, ever so many blood and platelet transfusions, nine chemo therapy drugs, multiple surgeries, and endless procedures and tests saying that I’m a cancer mom.
But what does that mean to me? Just this…
It means being wakened in the night by nightmares and then realizing it really did happen…I really did hear “There’s a large mass” pronounced over the ER bed of my 2-year old and there’s been no waking up ever since.
It means absorbing the sad looks and conciliatory touches to the shoulder and wanting to shout that we aren’t at a funeral yet.
It means “normal” defines any trip made to the hospital with myself behind the wheel instead of five-point harness-strapped into the back of a speeding sirens-and-lights ambulance while assuring him it’s going to be okay.
It means handing out candy at the door and seeing the looks on the costumed faces as they take in the too white, scarred, bald child at my side and ask their parents what he’s supposed to be while the embarrassed adults avert their eyes and move quickly away.
It means “fixing dinner” is preparing an 18-hour IV bag of nutrition and hydration and then attaching it to a tube in his chest.
It means watching a chemo being carried into the room…a chemo so light sensitive that it must be protected in a dark bag…and then they hang it and pump it into my baby.
It means being the grown up and saying; “You need to take your medicine even though it’s yucky.” to a red, tear-stained face when I want to sit down and cry right along with him.
It means listening to him whisper “I’m so brave” over and over as the medicine lulls him into a stupor and I hand him off to sets of surgical masks and scrubbed arms, knowing he’s going into the operating room and I can’t go with him.
It means that while other kids his age are learning to ride a two-wheel bike, I take joy in his remembering a words or learning to jump with both feet at the same time because in his world, that’s a really, really big deal.
It means there’s a kit in my purse that has gloves, alcohol swabs, clamps, and everything I need for a child with a central line and I carry it everywhere he goes….just in case.
It’s being up and out at 2:30AM, not for a party, but for an ER run in which I find myself praying that the fever goes down and the blood pressure goes up and that we can just be admitted to the regular oncology floor and not the ICU.
It’s learning to walk, and even at times run next to a child attached to tubes because playing makes them feel better.
It’s accepting the part of the living child forever lost to the moment his brain was open on an OR table and loving the living child he is today.
It’s feeling like I can’t breathe until I get answers and then they have none and I somehow go on breathing.
It’s allowing the child I swore to protect to go through intense seasons of pain, heartache and potentially life-long damage in order to try and save him.
It’s sitting by a hospital bed; a hundred percent powerless to fix anything and praying for the day the chemo stops hurting his skin enough that he’ll be comforted by a mother’s touch once again.
It’s holding him close next to the Christmas tree and answering “Mommy, will you hold me close so the death won’t get me?” without completely losing it.
It’s hearing that after almost two years of clear scans, there’s something growing and nobody knows what it is and the best thing to do is to wait and check again in six weeks and I find myself agreeing over the sound of my heart ripping open.
It’s knowing we’re out of options to cure his diagnosis and still getting up in the morning.
It’s coming to peace with the understanding that what I do may never change an outcome or what’s ahead for my darling son…and then finding the strength and purpose to make the most of every second of every day anyway.
Chase and his puppy, “Biscuit” in pre-op. “X” marks the eye designated for surgery.
This past Friday, after a nearly two year break, Chase headed back into the operating room. He’s been under anesthesia with MRIs on the regular, but since they last opened up his chest and removed his port, there’s been nothing and no one cutting into him.
He’s two years older now. Gone are the days when “it’ll just be a quick nap with the doctor” completely cut the fearful look and quiet whimpers, and this was something for which I was not prepared.
During chemo, I thought there couldn’t possibly be anything worse than little ones getting cancer treatments. Our baby, our two-year-old, chubby little should have been running around at a park instead of getting chemotherapies and surgeries; and that felt like the absolute worst.. But I was not prepared for the reaction to the word “surgery” spoken over a fully cognizant, old-enough-to-understand six-year-old. He now understands that what happens “like magic” when he sleeps actually cuts into his body to give, take or change something. For better and greater good, yes, but there’s still dealing with the concept that while he sleeps, things unfold in and around his body; things far beyond his control. With age comes the burden of knowledge.
On the one hand, I am deeply thankful to see Chase mature because there are and will always be questions about how much he understands, in what dimension he understands them, and how he will possibly remember them.
But on the other hand, it means Bob and I now speak to him like an adult about these things, knowing that words of comfort might encourage and strengthen, but will not always allay the fear.
How do you tell a six-year-old that the only way out is through? It seems perfectly appropriate when applied to cleaning up the basement, and so very broken and wrong in a pre-op room.
And the night before the surgery, I sat on the edge of his bed as he whimpered “I’m scared” and “I don’t want to do this” over a few times as if repeating it would get him out of it. And then we whisper-sang “10,000 Reasons” like we did in the older treatment days and he was finally able to sleep.
Chase and I talked about it now that it’s all over and done and he said that the surgery wasn’t really that scary, but the truth came out in his very next sentence: “But mom, for four days, I was scared.” – The four days before nearly ate him alive, and he nearly took the rest of the family with him. (reference: ninja-star-holding the door jamb while refusing to get on the bus)
This time was good for me because with all Chase’s complications and high-maintenance needs, daily life feels pretty demanding 24/7, but it wasn’t until I sat next to him hearing the words “And on that day when my strength is failing, the end draws near and my time has come…” falling from his lopsided mouth that I realized life actually has been easier than it was once upon a time. I’d forgotten what it looked like in the shadow -of treatment, of procedures, of another something looming.
I mean, there are shadows now, but they’re further out, like knowing a storm is coming, not like running to the shelter when it’s nearly on top of you. Surgery in the morning is like running to the shelter. It’s on top of you and it’s inevitable. All you can do is duck and cover, praying to survive. And our “muscles” are so out of practice with the run because we haven’t done it in two years.
So yeah, it was hard, and pssshhh… all this irony and metaphor over an eye surgery?
You bet.
They wheeled my baby out on a gurney and I had to stand at a set of doors and walk no further as the scrub and gown-clad staff reassured me that they’d take him from here and he’d be fine. I had to look at his face while he wouldn’t look at mine because he was drugged and afraid and not even the strongest “mellow” could take away the separation (though he would not remember it afterwards) and sometimes it’s easier if you don’t look. And then they’d take him into a room, tape his head to a table, paralyze his unconscious eyes to keep them from rolling into the back of his head and jeopardizing the surgery, and then they’d intubate him and proceed to cut into his eye and patch and repair him for the next hour.
And now I carry a little card in my bag, right next to my insurance card and drivers’ license, and it tells the make and model of the false lenses that sit in my six-year-old eye socket.
And all because of the treatment we chose to save his life.
I write this as I’m weeping-breaking-bone-tired. The last 48 hours have been spent trying to amuse a highly active and light sensitive child (whose anesthesia included a steroid dose, and who cannot get wet, wrestle, get dirty, play sports or play outside) by day and stay near his restless body by night to make sure he doesn’t claw at the patch, tape, or tender skin around the eye and skull tape wounds in his sleep.
I know all the right things to think. I know this was just a surgery, and in a few weeks, the pleading/negotiating/wresting-to-the-floor eye drop sessions every few hours will be done. I know I need sleep and I know I need to sustain my soul with God’s word. And I know that until I do these things, everything is going to seem worse and more un-doable than it really is.
But in this moment, this late Sunday night writing time, I’m just laying it all out. How Chase felt, how I felt, what it was like to be back near an operating room – all of it.
Maybe my raw feelings will encourage you because you’ll know you aren’t alone, or maybe it’ll simply bless you because you can quite honestly say “Wow, I’m nowhere near the hot mess that she is!” – And hey, that works too.
Bottom line: We’re hurt, we never really get used to surgeries no matter the age, we’re broken, and this too shall pass because even in this moment when I’ve come to the end of myself (for the 40 millionth time), I know I shall wake to yet another dose of strength and hope for this crazy life because He isn’t at the end of Himself.
Moment by moment.
“God is our refuge and strength, always ready to help in times of trouble.”
Psalm 46:1
Even though the light hurts like crazy, we went for a short walk in the beautiful Sunday weather.
This week, I had the honor to guest write for Way-FM. They asked me if I’d be willing to write about the seasons in life that come with no answers, and fully acknowledging the irony of answering the unanswerable, I undertook to wrestle through this. And I’m so glad I did! God is faithful and good.
I hope my wrestling blesses you as it did me. I’ve included the first few sentences here to get you started and then click on over to Way-FM and discover where I ended up with my answers.
-MbM-
“There are no words in any language that adequately express the emotion felt when hearing the phrase: “There’s a large mass”, no way to express the feelings that wash over the heart and mind when these words are spoken over the body of a two-year-old boy.
But, I know I’m not the only one who has heard words like this and Chase isn’t the only one to carry cancer like this.
How many times have I heard other stories?
Have you heard them too?
The friend whose breast cancer was gone for thirty years and then relapsed…
The small child who had every advantage that modern medicine could offer and still stopped breathing…
The parents and family and friends with empty arms and an un-fillable void in their lives…
Cancer is a bully – a vicious beast robbing us of our health, resources, relationships, and perhaps most frequently: answers. Nurses look puzzled, doctors shrug, and all people – from every possible religious and cultural background – weep, pray, and go through various rituals to beg for answers that will bring peace and change, and most especially, healing. As if somehow, understanding the unfolding horror will make it suddenly more bearable…”
![[Photo credit: Pexels]](https://i0.wp.com/www.chaseawaycancer.com/wp-content/uploads/2016/04/red-school-blur-factory-1024x682.jpg?resize=760%2C506)
“There are no words in any language that adequately express the emotion felt when hearing the phrase: “There’s a large mass”, no way to express the feelings that wash over the heart and mind when these words are spoken over the body of a two-year-old boy.