Tag: cancer

Choose To Live

I first had the honor of meeting Stephanie Goodall over the phone. I remember it well…she was sitting quietly in a hospital room on the 17th floor, I was at home washing the dishes. She was isolated from her other children and I was constantly getting mine to be quiet to I could talk on the phone. We had been connected by a director at St. Baldrick’s

Cancer mama sisters (L-R) Sarah, Ellie, Stephanie

when she realized that Stephanie’s son, Jonah and my Chase shared not only a hospital, but some of the same doctors as well. “You’ll like her, Ellie. She reminds me of you. She’s got four kids, faith, and writes a blog too.” Little did I know that I’d not only like Stephanie, but be encouraged by her and be even slightly in awe of her love for life and commitment to joy in the unthinkable. We were finally able to meet in person this past Saturday night at the Hearts For Hope Gala – what a joy it was to hug this dear sister in real life!

It was at this gala that Stephanie spoke: she opened up her heart and shared Jonah’s story – incredibly, beautifully formed. Jonah goes in for an MRI on Tuesday, May 23 around 1:00 CST and I’m thrilled to be sharing Stephanie’s text from the gala with you – not only so you can be encouraged, but so that you too can join in prayer for darling Jonah and the Goodall family. As you read these words, they’ll be on their way to the hospital.

“Whatever may pass and whatever lies before me… ”

Meet Stephanie and Jonah:

“When Christina originally asked me to share our story [at the gala], I was excited to share a story filled with hope, optimism, overcoming odds and lessons learned.  I was going to share a story that wrapped up nicely with a ribbon – that may have made you feel a little sad or uncomfortable at points but would have ended happy and hopeful.  Pediatric cancer isn’t like that though – and based on recent MRI results, our ribbon has frayed.  But before I get to the today in of our story let me go back to the beginning.

Our story probably begins in the Spring of 2014.  Jonah was a happy, healthy, energetic, bright 3 1/2 year old who was wildly popular in preschool.  He had both an older brother and sister as well as a baby sister.  That spring regular waves of nausea and vomiting started to interrupt Jonah’s exuberant play with growing frequency.  A visit to the GI doctor indicated everything was fine so Jonah was placed on a course of antacid and everything cleared up.  Jonah continued to live his life at full speed, with a bump in August 2014 when he was diagnosed with an anaphylactic allergy to flaxseed.

Super Bowl 49 is a game that will live in infamy in our family – not because the Patriots beat the Seahawks with the swirl of “Deflategate” in the background, but because Jonah had another flaxseed exposure that landed him in the ER.  After the Super Bowl event, Jonah’s nausea and vomiting returned and so we were back to GI.  This time the antacid didn’t help and in May 2015, Jonah was diagnosed with eosinophilic esophagitis (EOE), which is an allergenic condition of the esophagus that effect 1 out of every 2,000 people.  One of the best treatments for EOE is diet modification which we immediately implemented.  Unfortunately, Jonah seemed to be getting worse instead of better.  He was eating less and less, vomiting more and more.  Our bright, rambunctious, big living little boy was fading before our eyes.

By July, our pediatrician was growing concerned as well.  Jonah had become extremely lethargic and had lost almost ten pounds since the spring.  He then had a episode of double vision followed by an episode of “word salad” (using proper words in incoherent order) and we were sent to the local hospital for an urgent MRI.  What started out as a normal Wednesday, forever changed the lives of our whole family.  A tumor, the size of a plum, was discovered in the cerebellum of Jonah’s brain.  That evening we were transported to Lurie Children’s.

The following day, it was confirmed that Jonah had medulloblastoma, which had metastasized through his brain and spine.  Although medulloblastoma is the most common malignant pediatric brain cancer, only 400-500 cases are diagnosed a year. The days that followed were a blur – surgery to remove the tumor, a life threatening hematoma, 2 weeks intubated in the PICU, another hematoma, surgery to place a shunt and central line.  Jonah also suffered a sever case of posterior fossa syndrome as a result of the surgery, which only occurs 20-25% of the time.  Basically, Jonah’s body forgot how to listen to his brain – it was almost like he was in a coma, but he wasn’t – he couldn’t breathe for himself, eat, move, smile or talk.  As much as we longed to allow Jonah to recover from the posterior fossa syndrome, his cancer was too far spread and he didn’t have that luxury.

Pediatric cancer treatment decisions are a nightmare.  As a parent, you have to decide between terrible and horrible.  There isn’t a third, more pleasant option.  We choose terrible, and Jonah received 5 rounds of high dose chemotherapy often referred to as “the kitchen sink” on the oncology floor.  We then moved onto a 6th round of chemo that made the first 5 seem like child’s play, followed by a stem cell transplant.

In stereotypical fashion, we saw Jonah’s beautiful bright blonde hair fall out, we saw him continuously nauseous and throwing up so regularly that it stopped phasing any of us.  We saw mouth sores that required a morphine drip to dull the pain, skin rashes that caused him to peel from head to toe, sepsis from neutropenia and other random infections.  We saw him so miserable, it was hard to find the light in his eyes.

Because of the posterior fossa syndrome, when Jonah wasn’t at Lurie, he was at RIC (now the Shirley Ryan Ability Lab – a rehabilitation facility offering a variety of inpatient and outpatient therapy).  Jonah had to relearn how to eat, smile, laugh, talk, squeeze a finger, sit, stand and walk.  His hand dominance changed as his right side no longer possessed the strength it needed.  A boy who had learned to ride a 20” 2-wheel bike at 4 was relearning how to ride with adaptive tricycles.

Jonah’s treatment didn’t end there though.  He went on to have radiation as well.  Radiation isn’t great for a developing brain, so much so that doctors rarely recommend it for children under the age of 3.  In the window of 4-8, things are gray.  Radiation destroys developing brains and most brain development occurs before the age of 8.  Jonah was 5.  Radiation is however currently the most effective treatment for medulloblastoma and so we moved forward.  Although our team couldn’t tell us the specifics, they guaranteed us that radiation will cost Jonah IQ points.

Jonah finally finished treatment May 2016.  He spent 275 consecutive days in the hospital, endured 6 surgeries, received close to 100 blood & platelet transfusions and faced many other hardships.  The blessing is, the spirit of the boy we knew returned once he was done with treatment.  He’s again silly, loving, kind, inquisitive and warm.  He is also different – he is more timid, less confident, more scared.  Cancer has changed him on the inside as well as the outside.

This past year out of treatment has been an amazing time for our family.  Sure, it’s been weighed down by 6 hours a week of OT, PT & ST for Jonah.  Sure there have been some academic struggles in school we’re having to work through.  Sure Jonah’s had 2 additional surgeries to address lingering complications of resection.  Sure Jonah wears hearing aides and walks with a walker.  All of those things are true, but our lives have been infused with gratitude for the gift of together.  Our family is again all under one roof doing normal life, traveling and making memories, filled with thankfulness.

This grateful, hope-infused gift of life was how I had originally planned to end our story.  Unfortunately, that wouldn’t be the whole story.  At Jonah’s last surveillance MRI in April, there was a new spot on spine that the medical team cannot explain.  It is not certain that this spot is recurrence or not, but suspicion is high.  If this spot is recurrent disease, there is no cure.  The median life expectancy for children, like Jonah, with metastatic medulloblastoma with recurrence is 1 year.

This is why research matters.  Research matters not only to Jonah, but to his siblings who love him so, who have walked this impossible journey and may still face the loss of their brother.  It matters to his preschool friends from before and from now, who love his bright spirit and are being formed by their relationships with him.  It matters to the 13 children diagnosed with brain cancer today, and the 13 children that will be diagnosed tomorrow.

The reason events like this [fundraising gala] matter is because only 4% of the US federal funding is dedicated to all pediatric cancer research combined, which is less stand alone cancers like prostate and breast cancer .  Most pediatric cancer research is funded through private organizations, and events like this help fund those organizations.

I know that there are many heart wrenching causes that you can help support and the mere fact that you are here means you likely are aware of the devastation pediatric cancer can cause.  I ask you to help not only in funding research through your donations, but also in raising awareness so that others beyond this room can be moved to help support research.  Pediatric cancer is something you can’t wait to care about until it impacts you, because then it’s too late.  The research of today will help the children of tomorrow much more than it will help the children living with cancer today.

Jonah will be having a follow up MRI on Tuesday, to hopefully give us more insight into what this spot it.  It is our deepest desire that the spot has miraculously resolved and we will be able to proclaim the power of prayer.  We also have to be prepared that the results will mark the beginning of our good-bye.  Either way, our family is going to choose to live.  We are going to lean in, love, celebrate, find joy and be together.  I encourage you to do the same.”

The Goodall Family: Anna, Julia, Stephanie, Noah, Jonah, and Simon (May 2017)

**Please join us today in praying for Jonah and the Goodall family.**

Moment by moment.

“Yet I am confident I will see the Lord’s goodness while I am here in the land of the living. Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.” Psalm 27:13-14 (NLT)

For more from Stephanie, please visit her blog: The Goodall Life

Of Yogurt, Milk, And Needles

This picture pretty much sums it all up: yogurt, butter, milk… And a light-sensitive, temperature-dependent medication to be injected with needles – on which we have yet to be trained.

This is something I’ve been wondering about: how do parents put needles into their children’s tender skin? Will it be easier or worse than the precision of a central line? I don’t know if I have the strength for this, and I’ve done an awful lot.

The story contained in the picture of the fridge is so normal. …and yet it’s so NOT normal.

But, this is Chase’s story.

The growth hormone is here.

The nurse comes early next week to train us.

Jesus is our hope.

Moment by moment.

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

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.

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