Tag: joy

Dear Sister-Mama

Dear Sister-Mama,

Welcome to the trenches.

I know I’ve said a lot of this before, but today, it needs to be said again: Each despairing, awful pit looks slightly different, but we’re all down here, in here together.

Your emotional and physical survival of everything from the next breath to the next decade will be almost as trial-and-error-ridden as your sweet baby’s treatment journey – just know that right now and know it’s okay too. It’s normal. Well, more “normal” really. Life circumstances just tried to cut you into tiny pieces with words alone – words like “cancer” – and continuing to breathe in these days is a victory not to be discounted.

Self-care when your baby’s in the ICU seems wrong and even selfish, but it’s not, I assure you. No matter how your inner voice wants to condemn you for anything short of laying yourself out next to them in the same pain they’re experiencing, please, please remember that your darling child’s care is only as strong as you are. You are the advocate and the voice, and 99 times out of 100, the responsibility of medications, schedules, feedings, sterilizations, etc, will fall to you. I’ve found it’s much easier to deal with it when I can see straight.

So, with that in mind…

Rest when you can. Trust me, there’s a reason sleep deprivation is used as an alternative questioning tactic in military protocol. When Chase was in treatment, I would have confessed to anything and actually had to stop driving because I was seeing wavy lines and shadows in the corners of my vision. Having a pediatric cancer patient is not unlike having a brand new baby in this way – please try and sleep when they sleep. You’ll need it.

Walk out of the hospital. For real. Even just down to the sidewalk in front of the building and then back. It sounds like the tiniest thing, but if you don’t make a conscious effort to incorporate the outside world in even minuscule ways, it will shrink and then go away entirely – leaving you with nothing but the cancer – which isn’t mentally healthy. And, let’s face it: who among us wants to give this awful terrorist of a disease that kind of credence in our lives? [hint: not me]

Seek a community. Church, friends, family, other cancer patients. Get involved on some level. Don’t let cancer take up all your mental and emotional energy. It doesn’t deserve that much from you. See also: my previous point on world-shrinkage.

See your dentist. Yes, I said it and meant it too. There’s a reason I don’t like to smile with my lips open. When you spend days being shuffled from room to room for appointments and rushing to emergency rooms, you’re just trying to remember to breathe, and maybe if you have an extra second; eat. There’s very little time for thoughts of flossing. So, from me to you: treatment will take it out of you on so many levels, but if at all possible, remember you have a dentist.

Have a mental safety net. Whether you see a counselor, talk to your spouse, or sit down with a dear friend, have someone there to keep you from feeling like you’re going crazy. Cancer is truly a war of it’s own kind. Your body responses will become conditioned to incredible long-term, high-stress scenarios and evidence points to this type of emotional and physical toll not being healthy for the brain. Some universities and medical institutions are even starting to pick up study links between traumatic pediatric care-giving situations and high rates of post traumatic stress – the same thing soldiers who’ve been to war face. This area is no joke, dear sister-mamas. Don’t be afraid to get help. You’re not going crazy. Your life is crazy. And no matter what you’re feeling, YOU ARE NOT ALONE.

There are so many other things I secretly want to throw out for you: go out with friends, have friends come to you, eat chocolate, read a book, cry, laugh, write, take a long walk… But the last thing you need right now is one more person telling you something you need to remember – yet one more alteration you’ll be making to your life. Psh… Chances are good you’ve already experienced enough alterations to last for three life times.

Whether you’re arms will one day be empty or atypically full, life is desperately short. No matter the kind of cancer story you’re called to, it will undoubtedly be a life-long marathon, not a sprint. So, stay the course, dear sister-mama. You are not alone.

All my love from the trenches,

Ellie

Napping in the oncology ward

To Prove What We Already Know

Early in the dawn, we will make the well-worn journey again.

Try to sleep…

Don’t eat anything…

Try not to feel sick…it’s going to be okay…

Here’s the favorite blanket…

Four rounds of 10,000 Reasons...

Answer the needle fears over and over again… 

Answer the most heart-breaking question of all, because it somehow always overflows on a hospital day: what if I get the cancer again?

Chase uses his “name stamp” (used for signing books) to stamp Dr. Lulla’s hand

How do you explain that hours-long, intense testing has nothing to do with cancer? …yet has everything to do with cancer? It all feels the same when you’re a little kid. The same rituals, pains and fears; never mind that there may or may not be atypical cells attacking. It all feels cancerous and scary when you’re seven.

But tomorrow morning isn’t about what’s happening. It’s about what’s not happening. Chase’s body doesn’t want to grow on it’s own anymore, so for the first time in a long time, he’ll be admitted to the day hospital and they’ll attach needles to inject medicine and more needles to take blood. And then they’ll do both over and over by the hour until they have enough to prove that cancer damages. Because the sad truth is that there’s no funding if it can’t be proved on paper, submitted, filed, bottom-lined, than our reality is just that: ours alone.*

Talking to new friends about hope

There is no self-pity in that truth, I promise. There’s shock and sadness; a deep desire to be known, but not pity. Not now, not today. Because I believe above all things that this tomorrow and all the days have a purpose we do not yet know and cannot yet appreciate fully. This test day tomorrow is just more gazing into the mirror and beholding an unclear, somewhat painful reflection.

We will breathe through the pain of damage and the desire for wholeness, but the heartache is so very real, and right now, Chase’s fear sits on the surface of, well, everything. He has struggled all week, including throwing off constraints where and when he can (like refusing to get on the school bus) — anything and everything to try and find control when he has so very little.

A dad and his boy

Will you pray for Chase tomorrow? We’d so appreciate it.

Seeking the light and momentary perspective...moment by moment.

“This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” Joshua 1:9, NLT

[All pictures are courtesy of Jan Terry and Lurie Children’s from a wonderful event earlier this week]

 

*All my love to the brave souls fighting their insurance companies for the treatments they need.

Where Missions And Cancer Meet

“This was one of the first times I made a conscious decision, in the midst of a very difficult situation, to say yes immediately to God’s ways and trust his promise to keep me under his wings.” ~ Connie Patty, on unexpected, frightening hospital days spent awaiting the birth of her first child, July, 1990

Dear Ones,

Today, I want to encourage you with a book: No Less Than Yes.

It is Connie’s firsthand account of her calling to missions in Eastern Europe and her life there with her husband, Dave and their three children. The entire piece is woven together with breath-taking, amazing stories, as only Connie can. Warning: carve out some time, because you’ll not be able to stop turning pages.

But why share a missionary’s story (as lovely as it is) for encouragement on a cancer-dominated blog?

  • This story is unique because unlike many missionary stories (recorded posthumously), this is LIVE! It’s happening right NOW! The book is a spectacular glimpse into a living, working, miraculous God even in the mess of our current age.
  • The heart of this story is one of learning love for and obedience to God in hard things – accepting that He is good no matter what occurs. Um, sound familiar, my cancer friends?
  • And finally, you’ll be able to relate as Connie has had her share of health trials – both as an individual and as mother. Her open heart throughout the book will bless you. She unfailing chronicles not only the hospital journeys (yes, there are more than one), but also the struggles. She doesn’t shy away from being truthful when it hurts to trust God.

As you read her words, you will be encouraged to persevere in the journey God has for you. So, I’d urge you to pick up a copy of this book today.

Moment by moment,

Ellie

You can find No Less Than Yes on Amazon HERE.

For more on Dave and Connie’s work in Eastern Europe, visit the Josiah Venture website HERE.

The Horizon

Survivor: /noun/ a person remaining alive after an event in which others have died

Yes and amen. It’s true. Chase is and has always been a survivor in one capacity or another, and now it’s official: research data and his medical teams officially call him a survivor too. But this is not the end of a story. It’s more like another stop on a long and winding journey – the very word Chase’s Dr. Lulla uses to describe what’s still ahead of us.

I used to say that the treatments might kill him, but the cancer surely would and I haven’t used that sentence in a long time. However, at this point, there is a bit of a sinking realization that those words still hold true. Here’s why and here’s where Chase is today – as shown through a list of all the lab-coated friends he has and the standard appointments he will keep all year, every year. THIS is survival*: 

  • He has an eye team to monitor the radiation-induced cataracts, vision loss, and overall sight deterioration.
  • He has a social worker, neuropsychologist and behavior specialty team to help deal with brain damage-induced emotional issues.
  • He just garnered a urologist to monitor his development in conjunction with his endocrine system.
  • He has a yearly ECHO to monitor the chambers and strength of his heart.
  • He has quarterly hearing tests to monitor deterioration of high and low frequencies both.
  • He has an otolaryngologist (hearing/ENT) to monitor his ears and the losses therein.
  • He has a neurology team to monitor potential seizure activity and medication doses as well as emergency plans for his school staff, bus drivers, etc.
  • He has a neurosurgery team who continue to monitor his progress post-resection and advise on when to biopsy or remove the current growths.
  • He has an endocrine team monitoring his body and how it no longer wants to grow on it’s own (there is a lot coming up with this team, so stay tuned).
  • And despite the move to STAR clinic, he will still have a fully loaded neuro-oncology team who specialize in quality of life, recurrence, and secondary concerns.
  • He is followed and helped in school by extra aids, speech, occupational, and even physical therapists.
  • And then there are always the labs monitoring everything from his growth hormone abilities to his white blood cell counts.
  • Not to mention the near every doctor examinations of skin breakdown, scar damage, teeth, eyes, belly, neurological reflexes, and speech patterns.

    Chase gets his yearly ECHO with his tech friend, Anthony

This being written and said…don’t let the laundry list get you down! Chase is a survivor and a thriver and some of the greatest minds and hearts of the human race and been forged in unrelentingly unique and pain-filled circumstances. And in fact, he’s one of the few among his cancer friends who doesn’t already have hearing aids, doesn’t need a walking aid or splinting assistance, and doesn’t require specialized therapies necessitating nearly weekly hospital appointments. Compared to many of his cancer friends, this is the shortest list and the easiest end of the proverbial stick. 

Why publicize the laundry of survival? I guess the heart of this is to entreat you to hug a survivor – many of whom continue in a purgatory of treatments and treatment decisions. It’s to urge you to support research. It’s to turn words into the awareness that for many, the complicated cancer journey never really ends until the life ends. (And then starts a totally different, complicated journey)

Into the MRI…

Deep in my heart, this list is why I hate the MRI wait. It’s not so much the wait for the news of one scan (though, I do wait with baited breath all the same), it’s the wait for The Day (talked about in the book of Revelation) that gets to me. Even when the scan results are stable, Chase’s body is still broken. I’ve asked myself a million and one times why I still chafe when stability is exactly what we hope for, and I think this is why: our souls were not made for this brokenness. Even when it’s the best human outcome in all the crazy-awful, our souls cry out for the end of the hard journey; the days with no pain and no tears, the days where it will no longer take a village…scratch that…a giant urban city to care for my Chase boy.

But it isn’t that time yet. So we gather the pieces of our brokenness around us on the journey, clutch our list of specialty teams like the good friends and badges of honor that they are, pray for wisdom to pursue God’s glory in Chase’s quality of life, and cling to the hope that there is great beauty in this atypical life. For this is truly how we survive.

Moment by moment.

*Bob and I have been aware of every single one of these damages and side effects from the very beginning of this journey as we prayerfully made decisions and made our peace. There is no blame in these words or desire to shift our responsibility – just plain truth: the current conditions of pediatric brain cancer care are such that it is a life-long diagnosis whether the cancer recurs or not. The implication of ‘survival’ is that the patient lives three to five years from the date of discovery.

Chase with nurse Jessica in recovery (complete with red popsicle stains)

Yes And Amen

This coming Monday morning, we will stand outside the MRI machine and wait on our unconscious, brave boy once again.

There is no such thing as an unimportant scan for kids like Chase, but this one really is important and different from the others in a new way because, if, (yes, Lord, please…)… yes, if Chase’s results are stable, this month will hold his last round of appointments with his current neuro-oncology team. If he’s stable, he’ll be moved to a different clinic at Lurie with different doctors and staff, better and more equipped to deal in the living with cancer instead of the dying with cancer. Does one “move on” from cancer? Ha. But one can certainly get to another level in the game.

Having this bittersweet moment in sight feels like a tempting of fate. And the changes come and go with the days, weeks, and months, but the whisper is always there, stronger in the weeks preceding a scan – especially a big one: “It might come back. This might be it…” That moment I’ve tried a million times to imagine and prepare my heart around — even when I know I can’t. And the pre-MRI days hold a desperate struggle, but it’s hard to pinpoint the source of the black mood wrestling.

Is it fear?

Is it a renewed in-your-face realization that we are disgustingly powerless in this life?

Is it anger at staring down my own weaknesses and learned lessons over again?

The answer is probably yes, yes, and more yes.

But you know what else is, are, and ever will be yes? …yes and amen?

THE PROMISES OF GOD.

Don’t be afraid, for I am with you.
    Don’t be discouraged, for I am your God.
I will strengthen you and help you.
    I will hold you up with my victorious right hand. Isaiah 41:10

And yes, the worst may prove true on the scan, but there is someTHING…someONE who proves MORE TRUE.

Every word of God proves true.
    He is a shield to all who come to him for protection. Proverbs 30:5

Bring it on.

Moment by moment.

Chase with his favorite hospital security officer, John

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