Of Bears And Heroes Again

In the Fall of 2012, Chase wandered the halls of the oncology ward while I diligently followed, pushing his IV pole with loving care (and not a little trepidation). As we paced, we crossed paths with a father pushing his young son in a stroller (IV also in place) and as families often do, we stopped to talk.

The boy in the stroller was a little younger than Chase, but they stared at each other earnestly. And I do believe it was the first time Chase really saw another little boy who looked like him with the hairless head and the white skin and the tubes protruding from his body. A curious knitting together.

The dad and I exchanged stories cautiously for no one ever wants to pry into the pain, yet there’s almost always the desire to know you’re not alone in this decimation of the life you’d envisioned.

As we spoke, I came to know that their diagnosis was fresher…and I felt like an old pro. We’d been devastated since July. They’d only just started.

And the crazy thing was… statistically speaking in that Fall of 2012, Chase was supposed to die – his cancer defied his chemo, his body routinely on the verge of giving in. Chase was supposed to die…and Lucas, well, Lucas was supposed to live.

That day, I watched the shock and pain spring into the father’s face as the dawning realizing hit that we both had death sentences, but one of us seemed more likely to suffer that fate. And that look on his face in the Fall of 2012, the shock and horror and beyond was not unlike the look in his eyes when Bob and I hugged him close while we stood beside Lucas’ tiny coffin – not four years later. We’d barely celebrated remission. Nobody saw the huge lung growths coming.

There is simply no accounting.  There are no good words for what it was like to see such a small coffin and the hands that pushed toys around the playroom next to my son – stilled forever in eternal sleep.

And his parents and brother still breath.

There are no words.

But I write this out today to honor Lucas and for the sake of his parents and brother too. Sometimes, there is absolutely nothing good to be said to those asked to walk this horror, but we can remember. We can sit with them in their pain – inasmuch as we can ever understand that which we’ll never understand.

So, take the story of Lucas (how I wish you could have met him and known a little of his amazing life), hug your loved ones close, and reach out to those around you who are grieving…who must still draw breath when a part of their heart stops.

“Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval,
somewhere very near,
just round the corner.
All is well.
Nothing is hurt; nothing is lost.
One brief moment and all will be as it was before.
How we shall laugh at the trouble of parting when we meet again.” Henry Scott-Holland

Looking forward to The Day...
Moment by moment.
Chase and Lucas in the oncology ward playroom, Spring 2013

Of Bears And Heroes

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
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…

Moment by moment.

 

Waiting For The Ship

I can tell you many things, but there is one thing I absolutely cannot even begin to describe.

There is a road I’ve thought I might see from a distance just a few times, but it is one I’ve never yet been asked to walk. However, one of the dear “cancer mama sisters of my heart”, Christina – she was asked to walk this road as her darling Noah went from her arms into Jesus’ on September 27, 2015 at 5:46PM. Just over six months ago now, and if you were to ask her, she might be able to tell you the days and maybe even the hours that have passed too. For Noah was just three when he stopped suffering and his family started anew.

Throughout this time, I have so admired Christina’s strength and faith and so when she opened up her hurting heart just recently, I asked her permission to share her gorgeous, raw words with you. Take a minute and hold her up in prayer as you hold up her honest, heartbroken words, and please, oh, please, let them change you as we live and move among the grieving.

Time sucks.

I am struggling with the fact that as it passes I am moving farther from the time I last held my son. Last held his hand, kissed his cheek, felt him breathe, fed him, heard his voice, and the list goes on. I know with each day that passes I am technically getting closer to the time we are reunited. But being in this middle is hard.
It kind of feels like I am swimming away from an island where life wasn’t perfect but was good, towards a ship that I cannot see but know will be coming to rescue me. The island is moving farther away as I keep swimming forward, but I don’t know when I’ll reach the ship. And in the mean time I’m struggling just to keep my head above water. I know how to swim. And I know I’ll be rescued. But this period of time in the middle is so hard.

[stock photo credit: Pexels]
[stock photo credit: Pexels]

I’ve been given little rafts along the way, breaks in the pain, but eventually have to keep swimming. I’m trying to see the blessings God is providing. And there are many. Some days I see them more clearly. And other days it gets clouded.
As life moves forward I have moments of feeling so alone.
Around here it’s not commonplace to have a child die. We don’t see it happen on a regular basis in our neighborhoods, schools, groups of friends… I know it is in many other parts of the world. But our friends, family, coworkers, and classmates get to look forward to celebrating their kids/friends/siblings next birthday. Or look forward to summer with bike rides, pool passes, vacations. We do too, but with one member of our family missing. It’s raw, and devastatingly hard. Winter has been a way to hide from a lot of what I’m scared to face. The sandbox that’s not being played in, Noahs truck sitting in the garage, his bike that he never really got the chance to ride, other little brothers running around outside with their big sisters.


Tonight has been a lot of hard. Really since we came to the year of diagnosis it’s been hard. A lot of emotion and grief overflows. Life is moving forward and I feel like I’m ready for another raft to be thrown. In the beginning there are many, and now I feel like they’re farther apart. Mostly because I’m getting better at swimming. But when I tire it comes out of nowhere and I struggle.

Noah feels farther away, I don’t see a ship, and tonight I’m tired of trying to see the positive in everything. So I’m going to allow myself to feel, to be a little angry, and pray for some relief.

Moment by moment.

[stock photo credit: Pexels]
[stock photo credit: Pexels]