Seven Pairs of Hospital Socks

He woke before 6:00 -gunning for the day in general and the race tonight- prepared for occupational therapy at 9:00. He picked his own shirt (“I fight cancer – what’s your super power?“), packed his own backpack (trains, cars, and 7 pairs of hospital socks – because you never know when you might need them), and absolutely insisted that Mickey Mouse not only accompany him to therapy, but that he should most definitely be buckled into the front seat.
And why not?
It’s Chase. 

~MbM~

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Running for Gus…

One of the things that our family loves to do is promote the work of Chase’s hospital, Lurie Children’s Hospital of Chicago.  The treatment that Chase had there saved his life, and the doctors, nurses and staff of the hospital are the top in the world.

Because of this, we try to help the hospital in any way that we can.  This year, that includes dusting off my running shoes, training for several weeks using the aptly-named “Couch to 5K” app, and running in the Run for Gus, an annual fun run along the shore of Lake Michigan in Chicago.

The run was started by the family of Gus Evangelides, who lost his battle with brain cancer in 1995, just three months shy of his second birthday.  Today, his family, and dozens of other families from Lurie, run to help raise money to fund brain cancer research at the hospital.  Over the years that the Run for Gus has been going on, it’s raised millions of dollars to fund brain cancer research at Lurie.

This run has been a tremendous opportunity for our family to give back a little to Lurie Children’s.  Brain cancer is one of the leading causes of cancer deaths among children, and fatal for almost half of the kids diagnosed, but there is painfully little research being funded to help stop it.

With some exciting new developments in cancer research on the horizon (see here and here), Lurie researchers could be just a short time away from making significant discoveries toward finding life-saving treatments for kids like Chase.

I hope that some of you might be able to join us in the run on July 24 (even to cheer us on), or help me raise money for the hospital by donating toward my run.  You can do either by visiting my personal page at the Run for Gus website: http://foundation.luriechildrens.org/goto/ewoldt2014

I hope you’ll join me in supporting this worthy organization!

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Of Legos, Princesses, and Apple Juice…

[For those who read these posts for the sole purpose of Chase updates, please know that the following has nothing to do with cancer and everything to do with our normal (normal?) life.   The following really did occur in it's entirety and prompted me to think about motherhood being humbling and hilarious in equal measure.]

5:59AM

“Mom!  Mooooooooom!!”  

Why, oh why, is my title never just a one-syllable name?  The shout interrupts the early morning quiet and my mental monologue once again:   “Mom!  He’s sitting on my face!  Can you tell him to get off my face?!”  

“Who needs an alarm clock anyway?”, I wonder.

Make the husband’s breakfast; take the bald one off his brother’s face; make my breakfast; take the bald one off his brother’s face again and put him back in his own bed; make the kids’ breakfast; remind two of the three boys that it isn’t necessary to have every single toy out before 6:30am…and that they don’t have to dump the toys out of the boxes over their heads either.  I silently hope the bald one misses his gigantic resection scar while taking a Duplo shower and go back to the kitchen for the two minutes of uninterrupted time it’ll take to hear my name again.  One more trip back across the house to disentangle the bald boy from his scheme to scale the 6-foot book shelf, and then breakfast is ready.

The voice in my head has begged me many times to keep all my children drinking out of covered cups until they’re at least 18, but I ignore it as I pour apple juice into little open glasses.  This will bring maturity, I think.  This will bring a spill, I think.  I can feel it in my bones.

Surprisingly, the spill doesn’t occur when the oldest boy tries to pick up his juice by picking up the placemat beneath it; his placemat with the faces of all the U.S. presidents on it…  I’m so glad we’ve taken conscious steps to improve his memory and cognitive functions, I think to myself as I scream his name and dive across the table to save the juice.

We ask God to bless our day and keep us all alive.

The youngest two boys are at table wars again.  When they play together, they love each other dearly, but when they’re forced to stare each other in the face over food and good table manners, it’s high noon.  Always high noon.  The bald one nods a single nod and the baby shakes a single shake, and the mimed “yes” and “no” continue at such a pace and with such ferocious passion, that in the time it’s taken me to serve their plates, both boys are standing in their chairs nose-to-nose, screaming at the top of their lungs.  “Fine!  I never gonna play with you again…ever!!”   In a voice filled with calm and motherly reason, I gently inquire into the nature of the disagreement.

I’m told: “He said ‘uh-uh’ to me!”   …and I silently wonder if I should alert the United Nations to a new human injustice.  “No more saying ‘uh-uh’ to each other.” (oh, the things I say now that I’m a mom…)  “Please focus on your breakfast.  We need to leave the house soon to take Chase for his hearing test.”

And then there’s the sound of the glass tipping and juice hitting the floor and chairs.  “Uh, sorry, Mom. I wasn’t messing, I promise. It just fell over by itself. Really.”  I knew it.  My bones are rarely wrong when it comes to sticky apple juice.

The juice is over halfway cleaned when the oldest slumps down the steps clothed in high drama and an outlandish getup that involves every piece of jewelry she’s ever owned.  She informs me that she’ll be answering to a different name today.

I bite back the urge to tell her that I’ll be doing the same thing and instead, remind her that we’ll be going out in public in under 45 minutes and today might be a better day to wear shorts and a t-shirt.  …and to please, for the love of sanity, come and eat her breakfast quickly.

And then there’s the sound of more liquid hitting the floor.  A panicked survey of the table tells me it isn’t more juice, but the baby, with wide eyes and half a turkey sausage stuffed in his mouth, grins and calmly announces: “I pee, Ma.

Dear Lord, please forgive my hateful thoughts towards Huggies and their “overnight absorbency” claims, I think to myself as I clean the floor again.

On the bright side, pee-boy and the juice-spiller were sitting on the same side of the table; so that side of the floor is unreasonably clean for, you know…well, until lunch time.

“Yes, you may be excused from the table.”  “Yes, go get ready, please.”  The instructions fly on autopilot from my mouth as I clean up the table and wipe the other side of the floor, then deal with another princess outfit crisis; remind the bald one not to tackle people; catch the naked baby streaking through the house and clothe him; tell the bald one not to chew on things; remind the princess that brushing her hair is a necessary part of life and that yes, I am truly sorry that her brother jumped out and scared her in the bathroom; instruct the bald one not to spit at people; remind the baby not to say ‘uh-uh‘ to the bald one any more, ever…and then realize I haven’t seen or heard the juice-spiller in at least 5 minutes.   The mental alarm goes off…always fear the silence.

I find him playing Legos on the toilet lid and after pointing out the throbbing vein in my forehead and my quickly graying hair, calmly and lovingly remind him to stay focused.  (At this point in his five years on earth, he truly believes “stay focused” is part of his legal name – as in “Aidan Russell Grey Stay Focused!“)  Has he done a bathroom check yet this morning?  He shakes his head as he dances around the room.  I promptly remind him that reaching the point of dancing is several minutes past appropriate bladder holding boundaries and encourage him to deal with this immediately.

I hear the lid being opened and then the unmistakeable sound of the toilet being missed.  With less than 60 seconds before we need to be in the car and out the drive, I see a small stream arch across the bathroom floor, up the side of the waste basket, and land inside the trash receptacle.  My mental monologue is somewhat impressed as I have a feeling that he couldn’t have hit the wastebasket if he’d tried, but my mental monologue also doesn’t have to get everyone 40 minutes away in 38 minutes.  

Impromptu bathroom deep clean behind me, finally settled in the car with as many as possible behind five-point harnesses, I breathe a sigh of relief and pick up the pieces.

And the sign over the highway tells the traffic times and reminds all who pass that driving fatigued is unsafe…

And I think to myself how noble motherhood can be some days.

-MbM-

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Run For Gus

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Thursday, July 24th will mark the second year our family has had the pleasure of participating in Young Associates Board’s “Run For Gus” – a fundraising 5k run/1 mile walk – proceeds from which go directly to our very own Lurie Children’s Pediatric Brain Tumor Program.

This year, we were asked to share why we run (or walk):

Because he is my brother.  I held Chase when he was born, I played with him every day and early one July morning, I was the one who found him having a seizure.  Darcy, age 8

Because he was born when I was only 1 and I don’t remember a time when Chase wasn’t the brother by my side and now I know words like “cancer” and “brain tumor”.  Because I helped hold the bucket while he vomited after chemo and held his hand at his side when they took blood.  Aidan, age 5

Because I was 8 months old when my mom left me with my grandma and went to live days and nights at the hospital by Chase’s side to help him fight and I learned to walk while bringing him toys as he lay on the bed too weak to walk for himself.  Karsten, age 2

Because he is my son and I’ve carried him into operating rooms and had to leave him.  Bob, Chase’s dad

Because I gave birth to him and two years later sat in a room where they told us there was only a small percentage of survival.  Ellie, Chase’s mom

Because I fought.  And I survived.  Chase, ATRT survivor, age 4

Because Chase is where he is today thanks to the efforts of the Pediatric Brain Tumor Program at Lurie Children’s.

Because Chase is our brother and our son.  We run.

For more information on fundraising and Run for Gus, visit Bob’s page here.

Independence Day

Two years ago this day, marked the first day (in my memory) that we noticed something wasn’t “right” with Chase.  Little did we know that he’d be diagnosed in about three weeks. 

One year ago this day, we stood in the shade of a parade line, cradling our 27-pound 3 year old, keeping his IV tubes out from under foot and praying that we wouldn’t have to rush him back to the hospital that night.

This year, he sat with friends at the front of the parade line, a happy, chubby-cheeked boy; he cheered and clapped for those on the fire trucks and ambulances (people he knows and loves) and because he’s Chase and he’s 4 and shameless, he removed his baseball hat to show off his “baseball scar” in an attempt to get extra candy for his siblings and friends. :)

Celebrating life and liberty today.  Happy 4th of July to you and yours!!

Moment by moment…

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It’s The Little BIG Things…

He climbed onto his brother’s bike, said he could do it without help, and rode away down the sidewalk.  Chase -once watched anxiously to see if he’d ever walk and talk after major brain surgery- rode a big kid bike today!

The determination of this child never ceases to amaze me.

Moment by moment.

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Tall As The Trees

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Monday morning~

On our way to Chase’s 18-month post-radiation appointment.  18 whole months since he last whispered “I’m so brave…” and we wondered if this treatment would work and if the cancer would ever clear from his spine. 

As we drove, he stared out the car window into the cloudy morning and said: “Mom, one day, I’ll be as tall and strong as the trees.

We had a precious morning with these people who were only meant to oversee his care, but became dear friends instead.  Rejoicing in the life given…

…moment by moment.

Small Mercies

It’s so beautiful how the small mercies are everywhere.

Chase had an incredibly early surgery time which allowed us to avoid traffic (as much as you ever can avoid traffic in Chicago…on a Friday…during construction season…)

Only the most important part of the day: picking the pre-op movie

Only the most important part of the day: picking the pre-op movie

The anesthesiologist on duty today has worked with Chase multiple times and knows his preferences well.  In fact, this doctor was the same doctor who administered anesthesia on Chase’s final day of radiation (December 12, 2012) and he still remembered Chase and the party at the radiation center.  This doctor always carries a mini iPad with him to distract children going into the OR which meant Chase was so busy playing “Fruit Niinja” that he barely noticed us as we parted.  (This is what we want, right?)

In pre-op with our anesthesiologist and the mini iPad

In pre-op with our anesthesiologist and the mini iPad

The surgeon assigned to Chase was actually one of the few at Lurie who hasn’t placed a central line for Chase.  Okay, maybe that’s a slight exaggeration, but when the doctor walked into the room and said “I see that several of my colleagues have worked with Chase…”, suffice to say Chase’s central line history preceded him.  He told us that there can be complications to removing a port – like the tube being stuck in the muscle – but today, there were none.

Heading into surgery with the doctors

Heading into surgery with the doctors

Chase’s oxygen saturation levels dropped slightly after surgery, but he remained stable (with a little help from the oxygen mask) and awoke well.

Getting a little fresh air in post-op

Getting a little fresh air in post-op

The peripheral IV (which has always been placed in his thin-skinned, often bruised arms) was placed in his foot – making it that much easier to remove and giving his arms a break.

Clean it and stitch it and mark it with...steri strips?

Clean it and stitch it and mark it with…steri strips?

And when he sat up to leave in recovery, he placed a hand across his chest -as if to both protect and feel the change-, looked at Bob and me, and said: “I’m free!”

At last.

Goodbye, dear port.  We’ll miss you, but not really…

The port itself [photo credit: Dr. Anthony Chin]

The port itself [photo credit: Dr. Anthony Chin]

Moment by moment.

Leaving the hospital

Leaving the hospital

Of Hickmans, PICCs, and Ports…A Farewell

Chase's second Hickman - Fall 2012

Chase’s second Hickman – Fall 2012

“The general protocol is that after six months of clear scans, we remove the port.  …even for the ATRT kids.  And as I look at Chase, I don’t see any reason to make an exception.”

We took a moment to absorb the words our attending doctor was speaking.  Even with the concern of relapse and all that comes with an ATRT diagnosis, the port could and should be removed.

Changing the dressing on a Hickman - Winter 2013

Changing the dressing on a Hickman – Winter 2013

This small piece of foreign material currently embedded in Chase’s chest has somehow come to both symbolize and encapsulate the last two years.  It was the first thing in and will be the last thing out.  We’ve had it placed, and replaced…and re-replaced again…and again.  We’ve fought to keep it, repair it, and protect it.  We became trained and comfortable in the procedures to sterilize it and triage when there was a problem.  It was a picture of the need for chemo, yes, but it also provided life-lines of blood, platelets, fluids, medicines, and even nourishment when he could not eat.

What happens when the pressure cap falls off a central line...

What happens when the pressure cap falls off a central line…

His access has at times been on both sides of his chest and in both arms as well.  It’s been a double lumen Broviac Hickman, a PICC, and a port.   It has inexplicably infected multiple times, been infiltrated by a deadly chemo, cracked and broken and once, even slipped out as he turned in his sleep.

A cracked line...

A cracked line…

Chase’s first and shortest Broviac was placed on August 16, 2012 when he was only 2 years old.  He doesn’t remember a time in his life when he didn’t have either tubes coming out of his body or an access point for the tubes embedded under his skin.  In it’s own way, it’s become part of his body and his identity, so when he was told that it was to be removed, he became very angry and questioned whether the doctors were going to remove his skin and bones as well – so much is this small device a part of him.

In pre-op for another port surgery with Nurse Jen

In pre-op for another port surgery with Nurse Jen

This constant access to his body was in some ways the craziest complication of his treatment months, yet a complete blessing too.  But now it’s time for the last remnant of the chemo chapter that can be removed to be separated from his body.  No more flushing it and locking it to keep it clean.  No more crash kit with clamps, swabs, and gloves in a bag that goes everywhere Chase does.  No more ER fever guidelines.  When he goes in for MRIs or labs, he’ll require a peripheral IV…just like a “normal” child.  A scary and wonderful thought.

What it looks like when the port needle slips and the fluid infuses into the skin around the chest...

What it looks like when the port needle slips and the fluid infuses into the skin around the chest…

He has equally fought it and protected it, and tomorrow, Friday, June 13, he’ll go into an operating one more time and they’ll open his chest and cut it out of the muscles into which it has been so carefully sewn.

We so appreciate your prayer as Chase undergoes this surgery and as we close this chapter.  An oddly bittersweet… moment by moment.

“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9  [Chase's favorite verse to say -often again and again- before he goes into surgery]

A moment of rest after a port removal and a PICC placement - lines all over his body

A moment of rest after a port removal and a PICC placement – lines all over his body

To Channel The Fight…Again

Spring EEG prep

Spring EEG prep

April 11, 2014

We sat in the room for almost two hours and dialogued on how the brain works.  Chase fell asleep in my arms as Bob and I sat with the epilepsy specialist, discussing the EEG results and asking our questions.  The human brain is an amazing place; full of energy and a fragile balance that the slightest thing can disrupt at any time.  Marvelous and scary.

Despite Chase’s anti-seizure medication having some issues, after two hours of discourse and answered questions, we were counseled to stay the course.  We were told that Chase’s brain was still too close to it’s trauma and needed to be protected from itself.  Because Chase’s behavior was stable, we were to stay the course, increase his vitamins and call in three weeks to follow up.

[We were also re-briefed and updated on monitoring for any sort of seizure and the actions we should take if we ever observe anything.  This included a seizure crash kit of sorts that travels with Chase at all times...just in case.]


May 2, 2014

Three weeks came and went and even with the extra vitamins, the aggression issue didn’t seem to improve at all, so, despite the continued need for neuro protection, the specialists conferred and decided to try reducing the anti-seizure medication.  It’s only the tiniest bit (literally only a half of a milligram on one of the two daily doses), but over the last four weeks, we’ve seen a little improvement!

We’ve had some really encouraging, productive conversations with his teams of doctors and are feeling heard on this issue, however, there’s still much left to understand.  Nobody knows for certain if what we’re seeing are the effects of medication, or radiation, or tumor, or being forced into an adult life at age two.  The one thing we know is that whether we’re in a hospital room with specialists or in our home, with our family, working through a difficult moment; pursuing answers will be a marathon; not a sprint, and only time will prove…

We would so appreciate your continued prayer for wisdom and discernment as we continue to approach who Chase is and how to best care for him in all his facets of this special life.

Moment by moment.

Hear me, O God, when I cry; listen to my prayer. You are the One I will call when pushed to the edge, when my heart is faint. Shoulder me to the rock above me. For You are my protection, an impenetrable fortress from my enemies. Let me live in Your sanctuary forever; let me find safety in the shadow of Your wings.  Psalm 61:1-4 (The Voice)

Taking a moment...

Taking a moment…