Beautifully Interwoven

“You’re welcome to play in here until the nurse comes to get you.” The woman from the front desk wore a big smile and her eyes were understanding as we stood overwhelmed on that first day.

Radiation. The decisions had been irrevocably made. Chase needed further intervention to survive, and so we stood in this place and prayed against all odds and all side effects that it would work and work well. Oh, but my heart still hurt. Because some decisions still hurt even when you know they’re right just because they’re so crazy big.

It’s a good thing God knows all the things that I do not.

The play room was a small rectangular space with a fancy plastic kitchen set on one wall, a crafting center and school area against another, several shelves filled with toys, books, and games, and on the last wall was an entertainment center with a TV and several gaming systems – all of which Chase wanted to play and none of which he knew how.

But my interest was immediately drawn higher to the top of the center, where several poster boards and papers were propped. They were mostly thank you cards covered in children’s handwriting and colorful pictures, each one expressing heart-wrenching messages of thanks for life-saving treatments. But there was one piece in particular that held my attention. 

It was a large, bright poster display with row after row of pictures. In each one was a beautiful little boy with dark eyes and a magnetic smile. In most of the pictures, he was accompanied by an equally beautiful woman whose perfect smile and weary eyes spoke volumes of cancer motherhood. I knew that look. In other pictures, there were people who appeared to be family members and sometimes even medical staff. The one constant other than the small boy in the center of each, was what they were doing. For, in every single picture, they held up hands and fingers (however many it took on the given day) in a gesture of marking time: day 1, day 10, day 22, etc… On that one bright board, they had wonderfully documented and counted each day of his treatment in the center. 

And then as my white and weary Chase busied himself with trucks on the plush carpet at my feet, I studied the progression of the days and treatments – from the beginning with hopeful smiles and lots of hair to the end with joy, weariness, and what looked like lots of burns and bald.

And with the pictures was one strong thought that crossed my mind: “If this is as bad as it gets – we can do it too.”

So I held the image of the beautiful boy and his mama in my heart and every day as we went back for another treatment, and Chase grew increasingly weak, I’d quietly look to the corresponding day on the poster board and then look at Chase and remind myself that we could keep going because they’d survived too.

I now know that the boy’s name is Isaac and his life changed with a headache when Chase was only a one-year-old playing in the backyard. Isaac would finish his road through radiation a little over a year before Chase ever started. And as Chase’s 2015 ambassador year came to a close, we learned that Isaac would number among the new five who stood for 2016. 

The label on Chase’s chart reads Atypical Teratoid Rhabdoid Tumor, and Isaac’s reads Medulloblastoma, and they have yet to meet face-to-face, but most days, I just marvel at how their lives have intertwined and mirrored and how Isaac’s story has encouraged us so much.

And isn’t this why we share our stories – even the hard ones? So that someone, somewhere, can remind their own heart “If they did this, then so can I.” As we share our experiences with each other and seek to encourage each other, we pass a baton. I have run and now it’s your turn. I cannot run with you, but I will stand and cheer you on because I know the course you’re taking. 

Yes! ThisI know I say it all the time, but I don’t think we can ever hear it enough: There is beauty and wonder in our broken, interwoven lives and even cancer can be used for far greater, far better purposes as we run.

Moment by moment.

April and Isaac in the play room - Day #23 [photo credit: April Adamo Schippers]
April and Isaac in the play room – Day #23
[photo credit: April Adamo Schippers]

Tomorrow, Brave Isaac will shave his head for kids with cancer. For more on this great event, click here.

Isaac and his mom, April have taken their own experience and turned it into a great gift for others! Today, you can visit Camp Out From Cancer – their organization that provides care packages to kids with cancer (Including a tent! Our family was thrilled!)

And as always, for more on Isaac, the other 2016 ambassadors and the amazing work done by St. Baldrick’s, click here.

Take Off The Bag

I first wrote these words on March 3, 2013 in the height of treatment and I marvel at some of the ways the awful cancer shows the goodness of God. His way are not ours…

A reminder for your day: whatever burdens you is not too big or great for The One who loves you.


 

Sixteen of Chase’s every twenty-four hours are spent attached to an IV bag. This bag, its carrying case and the pump weigh about as much as he does (when the bag is full) and he must drag it behind him everywhere he goes. In addition to the weight, the cord has a short range, so he can only walk about two feet before it pulls and strains; reminding him to pick up the burdensome piece again. The moment it beeps (a notification that the cycle is complete) is the happiest moment of his day and as soon as he’s detached, he immediately starts running and jumping…two things he really can’t do without causing harm when the bag is on.

However, there was a day last week when the IV pump notified it’s completion, and instead of the jubilant “My baggy’s done!!” that I usually hear, there was silence. I went to him and said “Chase, your bag is done! Do you want me to take it off for you?” He sighed and said “Not right now, Mom. I’m playing…maybe later.” He had become so engrossed in his play that he was no longer energized to remove that awful shackle of a bag.

And I suddenly saw myself in this encounter…

How often I struggle with fear and sin that -with God’s help- I could lay aside! I could find peace, find rest, and be free of whatever burden holds me. He comes to me, much as I came to Chase and says “It is finished, this can be removed…will you let me do that for you?” …yet in my foolishness, I am content to play while my worry and fear is attached to my very life vein because I am too preoccupied to see that He stands there -more able than I will ever be- ready to remove it.

“…let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.” Hebrews 12:1b-2

Take off the bag. It is finished.

Moment by moment.

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Do You Want To Talk About It?

We sat curled up on the bed – just her and me – the only two girls in this whole house full of boys.

“Do you want to talk about it?”

Darcy’s nearly ten-year-old voice was calm as she described almost dispassionately what it was like to discover her two-year-old brother having a seizure when she was only six. And then, her tone changed and suddenly, like a full-fledged adult, a hand came up to her face as her eyes welled up. “I’m so sorry…I don’t know what happened. Sometimes I can’t talk about this without crying…”

Oh, how I know that feeling! Even when Chase is in the next room – living, breathing, and probably getting into trouble, the flashbacks can still take my breath away in an ordinary conversation. 

Darcy and I ended up talking for a long time and crying some too, and it lead to these words… Because sometimes I forget how hard this is for her, Aidan, and Karsten.

Aidan, Chase, and Darcy [photo credit: Jan Terry]
Aidan, Chase, and Darcy
[photo credit: Jan Terry]

For the “cancer” siblings: especially the littles…

Set the tone for understanding — To a child, sickness (of any kind) is contagious. I didn’t know this until we talked, but that early Tuesday morning when Chase was taken to the ER and Darcy and Aidan cowered in the shadows of their room, Darcy kept watch over two places. She told me she’d go to the window and check to see if the paramedics had taken us out yet, and then she’d go back and check on Aidan to see if he was seizing too. She stood in the dark of the room and thought it could be all of them…all of us. It would be some time before she and Aidan fully understood that cancer could not be caught from or given to another person. 

Presence can mean peace — They say nothing is worse than whatever you imagine and I think it may be true. We couldn’t always bring siblings to the hospital because Chase was in isolation so frequently, and our gut was to keep the very worst of diagnosis and treatment from them on some level, yet, Darcy told me that the times she felt most at peace were when she could either come to the hospital and see Chase personally, or when we’d FaceTime from our room in the oncology floor to Grammie’s house. She could see the IV cords and watch him vomit, but she could also see that he was alive and that was what brought her the most joy – just seeing he lived. 

Set the paradigm — This one is kind of interesting to process because Bob and I actually didn’t have the luxury of telling our kids Chase had cancer. We were completely separated from them for a full week and their grandparents had to tell them before they found out from a third-party as loving friends surrounded them in those first days.  But that being acknowledged, we’ve found (through trial and a lot of error) that explanations whenever possible can be very helpful. Whether it’s why Chase was getting gifts and special attention or why mom and dad seem so distracted, tired, or weepy, sometimes an age-appropriate conversation provided better understanding than pretending it wasn’t happening, brushing questions aside, or simply evening out special gifts among siblings. Our family motto has become: “There’s nothing we can’t talk about”. Hard, but good. 

Help direct emotion — Chase’s siblings cannot live through all that they’ve seen and not be significantly changed. Whether it’s memories of me laying on a gurney clutching their motionless brother to my chest or listening to kids making fun of a post-treatment Chase behind his back, there is a lot of fear, hurt and anger.  A lot. We spend a significant amount of time talking through how those feelings of fear or angry protection are a completely normal human reaction to what they’ve experienced, but it’s what they do with those feelings that will define them. We pray often that these things would make them and not break them, and that they would be strengthened in compassion and prepared to defend the weak because of what they’ve lived. And then we try and find ways to apply it to the every day.

Be prepared for deep feelings — This one surprised me and still does. Somehow, I expect that a lot of what we’ve gone through went over their heads. Not so – at all. They may not understand the word “terminal”, but they can sense it. There have been times that Darcy wanted to sit and talk and then others, like when she’s at school, where she hasn’t wanted to talk about Chase’s story at all, but she’s very aware of it and who she is in it. She explained that the kids don’t understand and the teachers all want to hug her and while she appreciates the love, both of those things make her feel very vulnerable. She doesn’t want to cry at school, but sometimes she needs to come home and just have a good cry over it.

Look for seasons of rest — Having a sibling with special cancer or neurological needs is as full-time for them as it is for us as parents. Whether it’s making a concession over parental attention, curtailed family activities, partaking in extra “cancer activities”, or interacting with a neurologically, emotionally, sometimes physically demanding playmate 24/7, I sometimes don’t even realize (in my own exhaustion) how tiring living with a cancer sibling is for my other kids. But Darcy could explain it to me; sharing how sometimes she can’t handle Chase anymore, but other times, she misses him and is slowly learning to listen to him when he demands her attention because he says things like “I’m a survivor, Dars!” (his pet name for her). And like adults, the siblings can have a layer of guilt over annoyance during a stressed family dynamic – especially when it’s towards a family member with a terminal illness. The guilt alone is exhausting.

There’s just no wrapping these things up. They’re messy and the dynamics continue to unfold as the kids change and grow and Chase lives on in his complications and joy. Some days are beautiful and could be used as parenting seminar illustrations and others feel like a complete wreck in which we need a bomb shelter rather than a house, but spending time with Darcy on this subject reminded me once again how good it is to just sit, talk, and pray together. We are not alone.

Moment by moment.

“Teach us to realize the brevity of life, so that we may grow in wisdom.” Psalm 90:12

The princess and the super hero
The princess and the super hero

Of Life, Lists, And Too Many Appointments

This past week, we finally finished up all of Chase’s follow up appointments from his January MRI.  I never get tired of seeing him interact with his doctors. This time, he brought his St. Baldrick’s cape (a gift from the staff for his ambassador year) and his new Spider-Man mask. He ran through the halls saying “Zoom! Pow!” until he tired of people talking to him, and then, stripping off his costume, he lurked in the clinic doorway and made silly faces at any doctors or nurses he saw in the hallway.  He also tried very hard to tell one of the doctors the new “knock-knock” joke he’d just learned from his kindergarten teacher (“Orange you glad I didn’t say ‘banana’?) and it was something of a fruit basket upset that was pure awesome and complete Chase. Life is never dull, that’s for sure.

Despite the good results of his January MRI, there are several continuing issues. After two years of stability, Chase’s hearing loss has gotten worse. Also, his growth has almost completely fallen off the charts – introducing conversations about the potential need for growth hormones. This is something for which Chase is potentially an excellent candidate, but something that also holds a very real threat of secondary cancers. (deep breath and lots of prayer…)

Before the end of July, Chase needs to do the following:

  • Have two separate surgeries on both of his eyes to remove treatment-induced cataracts that will leave him with the eyes of a 45-year-old (even after the surgery)
  • Have an echo to check his heart for chemo damage
  • Have a bone scan to check the age of his bones (a prerequisite for the growth hormone discussion)
  • Have a consult with his ENT to determine if he needs surgery to remove his ear tubes (they’ve been in for two years now and are showing signs of wear in his ears)
  • Possibly have an ear surgery
  • Have another audiology test to determine if he needs some type of hearing assistance 
  • Have blood work done for at least two of his doctors
  • Have a full brain/spine MRI
  • Meet with his neuro-oncology team
  • Meet with his neurosurgeon
  • Meet with his endocrinologist

And all of this is in addition to the behavior therapy consultations he needs, the IEP meetings, and the weekly speech, occupational, and physical therapy needs.

What a laundry list. I spent nearly three hours on the phone one morning just setting up appointments and coordinating with hospital staff and dates.  Currently, my calendar makes me want to go hide somewhere.

The danger in making a list public is that someone always has a longer and more complicated inventory of things to accomplish. Maybe it’s you. Maybe you’re looking at my “Chase list” and thinking: “Wow, she has no idea…” – and you’d probably be right, but I made this list up and wrote about it for two reasons…well, three, really.  

  1. Pray for us. The decisions ahead regarding growth hormone are not to be taken lightly and feel like some of the most weighty things we’ve talked about since the decision to radiate Chase’s brain.
  2. God is faithful. I need to remember this when I look at all the next few months will hold. He’s seen us through this far and He’s not about to stop now.
  3. Hug a cancer survivor.  Today, please.  This is what “survival” looks like. It’s a weird medical purgatory where you’re not really in treatment, but you’re definitely not out of needing help either.  So hug them close and tell them they’re amazing because the battle wounds are real and never quite go away.

Tying it in: Chase’s appointment list reminds me of my life. Too much, too complicated, too crazy… How do I reconcile all the broken? How do I best understand what God wants for me? …for our family? This is the moment by moment nature of it all. I need to lean in; seek Him. Thankfully, He isn’t done with me yet. …with any of us yet. The list is in His hands; life is in His hands.

And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6 

Moment by moment…

{Below: some pictures from our clinic day at the hospital}

Calmly, the super hero makes his way through the metropolis...
Calmly, the super hero makes his way through the metropolis…
Chase taking a "selfie" with his Nurse Wendy, our family's brain tumor coordinator and a part of our heart.
Chase taking a “selfie” with his Nurse Wendy, our family’s brain tumor coordinator and a part of our heart.
Chase and his friend, Matthew, meet up and play "got your nose" in the Crowne Sky Garden after their appointments.
Chase and his friend, Matthew, meet up and play “got your nose” in the Crowne Sky Garden after their appointments.

Of Eye Patches And Glimpses of God

The year I turned eight was the year my mom was pregnant with my last little sister.  I was old enough to understand and be excited and each new and frosty December morning, I would run to my bedroom window to see if Miss Becky’s car was in the driveway.  If her car was there, it meant my parents had gone to the hospital and my new baby sister had arrived.  

Miss Becky went to church with us. I remember that her husband -Mr. Tim- was very, very tall to us, that one time, we went over to her apartment to help her get a cake in the shape of lamb for a baby shower, and that she had a huge smile and an infectious laugh.  She also loved to talk about Jesus.  But not how most people I knew talked about Jesus.  She talked about him as if he was a precious friend, someone she really knew and loved and interacted with – much the same way I would talk about the friends I played with after school.  

It was around the same time that I first have memories of her that Miss Becky got sick.  She had something I had never heard of before, but I knew it must have been serious because I could see great concern on the faces of the adults when they spoke about it. They said my Miss Becky had something called cancer.

I remember that her hair looked different for a while but nobody ever told me that it was a wig. Kids don’t always get told those kind of things. And of course, I had no knowledge of things like procedures or chemotherapies, but almost every night, during our family times, we’d pray for Miss Becky to be healed from this strange thing called cancer. 

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Me with my precious “Miss Becky”

Our precious Miss Becky won her battle with what I now know was breast cancer while I was still very young. The years passed and she had children of her own and our families ended up at different churches. It would be years before I’d see her again.  

When Chase was diagnosed with cancer, Becky was on the front lines of those who prayed for us and encouraged us.  Cancer can make things very personal and re-knit friendships just in the shared experience.  She knew what it was like for my Chasey to have the chemo taste in his mouth, the chemo-induced neuropathy that made his hands and feet tingle like they were asleep, and the hard, long days in the hospital.  She knew and she prayed for us.

When Chase finished treatment, we saw each other at a party and I watched her watch Chase as he ran up and down the length of the gymnasium. Her, with the beautiful, big smile and marvel of his energy and life. And we talked about how she’d been free herself for twenty-six years.

We saw each other again last summer at the ball park and we picked up right where we’d left off.  She always encouraged Chase in such a beautiful way, making a big deal about his battle even though she’d fought her own. And her smile was as big as ever and her love for Jesus was as real as ever.

Chase, Becky, Darcy and Karsten at the ball park
Chase, Becky, Darcy and Karsten at the ball park

But not so very long ago, after twenty-eight full years, there were tests, and confirmation, and then a quiet picture of a beloved and dog-eared page of her bible –

“…that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.” 2 Corinthians 1:9-11

Next to these words were written two dates – “11/87” and “10/15”.  The implication was clear: the reprieve was over and Becky’s cancer was back.  

Even as I write, she is in the middle of this second fight, but as it has unfolded and she’s let us have a glimpse into this second journey with her, it’s been an amazing honor to witness. She’s honest about the tears and weakness, but she’s also honest about her joys and her love for Jesus is clear throughout her words.  After I posted a picture of Chase going to his hospital dressed as pirate last week, she sent me this picture in return…

Becky with her oncologist
Becky with her oncologist

Inspired by Chase’s fun, she’d found a fun way to show her courage and strength as well.  And this beautiful woman clearly rocks a head scarf like none other. 

All these seemingly flailing string ends, pieces of lives and stories so senselessly hit with diseases like cancer; I believe they’re being braided and woven into a tapestry we just can’t see or understand yet and it includes tiny bits like pirate costumes.  

Because sometimes, it takes an eye patch to get just a hinted glimpse of the goodness of God in weaving our lives together – even in the pain.

Becky’s twice-proved courage, Chase’s strength, and God’s grace . . . moment by moment.

“That which tears open our souls, those holes that splatter our sight, may actually become the thin, open places to see through the mess of this place to the heart-aching beauty beyond. To Him. To the God whom we endlessly crave.” Ann Voskamp

 

** For more on Becky’s life and faith, visit: https://byfaithbecky.wordpress.com/ **