Tag: Bob

5:31

Five hours and thirty-one minutes.

For five hours and thirty-one minutes he pounded the pavement, putting his feet to his purpose. And for all those hours and all those miles, past crowds, houses, and fields in the November sun, he ran holding a sign in the air – “Chase Away Cancer”.

And he told me tonight, though he kept his headphones in his ears, he never needed them as he talked to the people around him. People who came alongside him to talk about his sign because they were survivors, neighbors, family, friends – each one a person whose life had been touched by cancer. They saw him identifying with it in his sign and they identified with him as they all ran together.

And this morning, as he geared up and prepared to walk out the door, Chase and his fuzzy head stumbled down the stairs before the sun was up, urging him to run fast, not slow down, and “Run like me, Dad”. And then Chase covered his fuzzy head against the frost and cold and stepped out along the route to cheer the runners on, holding a sign alongside his crazy, cheering grandfather, proclaiming that “sweat is liquid awesome”.

Five hours and thirty-one minutes later, Bob crossed the finish line for Chase and fighters and parents and friends everywhere. And he wasn’t alone. You put your hearts into this race with him, and today, nearly $5,000 dollars went to St. Baldrick’s in their tireless efforts to chase cancer far, far, away.

THANK YOU.

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Chase’s Story [VIDEO]

Have you ever seen this video of Chase?

If not, I highly recommend it.  And even if so, feel free to watch it again…  We have been so blessed to partner with the St. Baldrick’s Foundation this year and are continually thankful for the platform they give us to share Chase’s story with so many.

-MbM-

[Our deepest gratitude to the incomparable Matthew Lackey for his mad, crazy video skills.  Also, a huge thank you to both Jane Hoppen and Kristen Thies for all they did to put together the finished product and the time spent filming it.]

Catching Up On Perspective

As I break my non-blogging streak and think about the last several weeks, I find myself reflecting on perspective.  I will get to that in a minute…

On March 25, Chase had his ear surgery.  We don’t yet know how successful it was (he will have a follow-up hearing test at the end of May), but as we sat in post-op, he turned to me and said “Mom! I can hear!”  I cried.  His expressing this was all the more amazing because we had prepared him for putting tubes in his ears, but we didn’t set him up for any results.

That moment in post-op
That moment in post-op

PoisonWe finished four days of chemo on Thursday of that same week and just as we were so close to discharge that we could practically taste it (if hospital discharge orders were something you could eat), Chase spiked a fever and we had to stay for several more hours until the staff could better understand the cause of the fever.  Such are the hazards of having a central line.  We were finally discharged late that evening.  Chemo

Because we had spent those extra hours getting blood cultures and antibiotics started, when Chase spiked another fever around 3:00AM on Friday morning, it resulted in a simple phone conversation with the (incredibly gracious) oncologist on-call and not a summons to the emergency room.

That Saturday (the day before Easter), Chase again spiked a fever and by this time, his Thursday cultures needed to be redone and so we were sent to a local emergency room for blood work and more antibiotics.  A small part of me wondered why he never seems to get fevers in the middle of the morning.

Chase was mercifully discharged from the local ER around 12:30AM and we all got some sleep and were fever-free enough to go to church together on Easter Sunday morning.  One word: glorious…and refreshing…and encouraging (Okay, more than one word…because it really was that precious).

Happy Easter
Happy Easter

As we drove home from church, I glanced at my phone’s call log and saw the (way too) familiar area code…I had just missed a call from the hospital.  “There was a bacteria found in the culture from last night.  It’s in both lines and it’s growing fast.  I’m not saying you have to drop everything in this moment, but we need you to get Chase here sooner than later…and make sure to pack…you’ll be here overnight.”  …and just that quickly, the holiday was over.  We’d managed to stay out of a hospital for a whole twelve hours.  As we pulled out of our driveway minutes later -still in our Easter finery with our hastily packed bags- and we waved goodbye, I felt a weight descend…it shouldn’t be like this.

In the ER on Easter
In the ER on Easter

Chase cleared his infection (the origin of which was never completely known) and we were discharged within a couple days as he had no more fevers.  In fact, he was the only one in our family who stayed healthy as all the other kids went down with a high fever virus that lasted for several days.

During the same period, Chase’s counts dropped from the chemo and we were back in the day hospital for transfusions.  Chase was in isolation, but did have the privilege of meeting Chicago Blackhawks captain, Jonathan Toews.  Chase tried to offer him a basketball.  To Toews’ credit, the professional hockey player was very gracious.  That same day, the son of a dear friend was in surgery at the hospital.  Putting aside a long story for another blog full of interventions and orchestrations; if we hadn’t been there for transfusions, we would have missed a great moment to serve and encourage our friends.

Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]
Meeting Jonathan Toews. Note the basketball in hand. 🙂 [photo courtesy of the Chicago Blackhawks Facebook page]
Transfusions complete, we waited for days…just waiting for Chase to get hit with the virus that all the other kids had.  Then, we got a call from his nurse saying that they were all surprised to find out that he’d recovered from the chemo much sooner than expected and he didn’t need any more transfusions.  Translated: we could stay home and rest.  The worst of the cycle was over.

We rested all week and then returned this past Tuesday for the big, under-anesthesia, check-the-whole-brain-and-spine MRI.  After three months, was the cancer still staying at bay?  Would there be a recurrence seen in the pictures?  No.  We have yet to discuss the scans in detail (we will see the pictures on Monday in clinic), but the bottom line was this: things look good.  Chase’s attending neuro-oncologist said that this is what is hoped for and desired.  Another clear scan.

…and to this day, Chase still hasn’t gotten sick.  The doctors believe that the antibiotic he was on for his line infection protected him from all the germs in our house.

So, if we hadn’t had the fever before we left the hospital, we wouldn’t have been able to stay home on Friday, and if we hadn’t gone in on Saturday night, we wouldn’t have been able to be in church on Sunday morning, and if Chase hadn’t had the line infection (which caused us to miss part of our Easter holiday) at all, he would never have been protected from the flu and pneumonia in the house.  …and if he hadn’t needed transfusions, we never would have been  there for our friends and been able to connect with some really cool Blackhawk fans.  Some correlations are more obvious than others and for some things (like the scan) there is little correlation at all; just joy.  But for the rest: perspective.  This season continually reveals to me that what seems sad and wrong often leads to visible grace and beauty.

As I look back on these weeks, how will I choose to remember them?

“All around

hope is springing up from this old ground

Out of chaos life is being found in You.

You make beautiful things.”  -Gungor

Moment by moment.

An Average Clinic Day

Today, I’m really excited to share with you what our average clinic day looks like!  (yes, it’s picture sharing day here on EFAMILY…)

When we first get to the hospital, we report to the Hematology/Oncology floor for check-in and vitals.

Chase taking his chances with the germs while waiting in the Hem/Onc play area

After this, Chase goes to a clinic room where they draw the labs and he meets with his Oncology team for a dialogue session and a chemo “push” (a short chemo that can be given in a matter of minutes as opposed to his infusions which are given IV over hours/days).  I have no pictures from our time in the clinic room this week, but I can tell you that despite six adults (four of whom were medical staff and two of whom were supposedly responsible parents) in direct intervention capacity, Chase did try and climb off the clinic table by himself and did fall backwards…you know…directly on his back…the area where he was about to get his spinal tap.  [picture me with my head in my hands at this point]  He was 100% fine.  I think he just wanted to give his Onc team a small taste of “Life with Chase”.  [head in my hands again]

From clinic, we procede to surgery for his spinal tap.  They classify the tap as a surgical procedure because he has to be sedated.  Apparently, a 2 1/2 year old boy can’t always lay perfectly still with a large needle in his back for a long time…who knew? [sarcasm implicit]

In pre-op, taking his own temperature

In preparation for his procedure, Chase is given a small sedation to make seperating from us easier (as we can’t go back with him).  This week, as the drug hit his system, he just wanted to “beep” my nose until they wheeled him out.  “Mellow Chase” is fun.  A sedated procedure is what we call his “Nap With the Doctor“, and as he’s wheeled out for his “Nap“, we always tell him that we love him and we’ll see him when he wakes up.  He often tells me to take a nap too (which usually makes me laugh and cry).

Bob on a conference call in the surgical waiting room

When Chase is in his procedure, we go to the waiting room, which reminds me to highlight the above picture.  My incredible husband has worked diligently with his company to allow him to work from the hospital so that he can always be present with us.  This can be hilariously confusing to medical staff meeting with us for the first time — I had an oncologist turn to me during a conference this week and say “But, we didn’t record the session. What session are you talking about?”  One of those moments when I needed to explain that my husband was speaking to someone in Tempe, Arizona and not to the doctor.  Communication hilarity aside, Bob’s professional sacrifice for us is amazing and I wanted to highlight that here.  What a guy.

After Chase’s procedure, he’s taken to post-op and recovery to be monitored for a while.  During his “Nap With the Doctor“, he usually receives chemo in his spine and has maintenance things done -like changing his dressings- that are much easier to do when your patient isn’t going ninja on you. (a hypothetical scenario, of course…)

Chase, attached to all his monitors, sleeping off his anesthesia in recovery (with Bob -still on a conference call- in the background)
Chase -about 30 minutes later- in a different stage of post-op recovery (different room; same hard-working Dad)

FYI:  That chair Bob is sitting in (in this last picture) is really comfortable and Bob always beats me to it.  He beats me to it so regularly that the one week he didn’t come back to post-op recovery with me, Chase woke up and lectured me about not sitting in “Daddy’s chair”.  [thinking about hanging my head in my hands again]

After Chase is recovered enough to be cleared (awake, talking, swallowing, etc), we are discharged!  …and if we’re really lucky, it’s before rush hour traffic!

And then, all that is left is the ride home …

Chase and his vomit bucket resting after a long clinic day

And that’s an average clinic day for us…

Moment by moment.

The heart of man plans his way, but the Lord establishes his steps.  Proverbs 16:9

 

 **A note: In all of these pictures, there is a prominent bruise on Chase’s forehead.  Don’t worry, that’s not from falling off the exam table.  That is what happens when Chase’s platelets are low.  He bumps or even taps against something and his body -in it’s compromised state- cannot bruise or clot properly.  For the record, his head looks much better after his second platelet transfusion on Friday.**

A Place for Karsten

Lake Geneva, December, 2009

I looked up from my book; “Bob, this says that it’s dedicated to his son, Karsten.  Isn’t that a cool name?  Hey, if we ever have another child and it’s a boy, could we talk about that name?” 

Bob looked at me, and then 2 week old Chase sleeping next to me; an incredulous look on his face …“Sure … uh-huh … uh, we haven’t slept in like, a year and a half … and you’re talking about another?!”

“I know, I know … I’m just saying … it’s a cool name.”

Inspiration and creativity carried my train of thought a step further …

“Hey, Bob …”

[a deep sigh from across the room]

“What?”

“You know what?  We should use your grandfathers’ names too … Karsten Robert Charles … doesn’t that sound amazing?”

“Sure, Love … whatever you say.”

 

I am not a good pregnant person.  I like to be in control and being pregnant means being totally out of control for me.  After being pregnant twice in two years, it had only gotten worse.  After Chase, I fearfully and desperately wanted to be done.   But still, I couldn’t shake our Lake Geneva “conversation” from my mind.  I loved the name “Karsten”, and though I tried, I couldn’t get the idea of another little boy in our family by that name out of my head.  I just couldn’t figure out where to put those feelings or how to deal with them.  We had always talked about four children, but knew that any addition after Chase would be several years away.  … yet, I couldn’t shake it … this place in my heart for a Karsten. 

Lord, what are you preparing me for?

Saturday, February 5, 2011

Out on some errands with Bob and the kids, we decided after a week of wondering that we couldn’t wait any longer and so I ran into the nearest drugstore, and then the Starbuck’s next to it.  Who takes a pregnancy test in a Starbuck’s?  Someday; I thought, I’ll think back on this moment and laugh. 

A few minutes later, I was back with Bob.  Not wanting to share with the children yet, he looked at me, and I nodded back:  Positive.

Winter 2011

I lay in bed too sick and weak to move.  My fever was high; too high for someone with a nine week old fetus.  I no longer wondered why they make a vaccine for influenza.  Then the bleeding started.  Was I really just coming to accept another pregnancy only to have it end?

Lord, help me walk whatever road you have for me …

In the Office, Two Weeks Later …

The doctor looked up from the ultrasound machine, a smile on his face; “There’s a nice, strong heartbeat.”  My baby was alive.

October, 2011

Being weak is humbling.  I don’t like being humble almost as much (if not more) than I don’t like being pregnant.  Yes, I’d made it through the year to a full-term pregnancy, but I was weak.  Always tired, anemic and unable to lift anything of significance due to a bad back, I chafed … I want to be strong, Lord, and instead, I have to depend on others to do my work for me or deal with it not being done at all!   The only way out is through.

Lord, teach me and  prepare me …

Sunday, October 9th, 2011

It’s been almost 48 hrs already.  So tired, I’d gone to the hospital to be checked on Saturday afternoon when my contractions were 5-7 minutes apart, and then everything stalled so I was sent home.  …and then again, after waiting several hours through Saturday night and into Sunday morning, labor stalled and again, I was sent home.  I don’t think I’d slept since sometime on Friday, and more than my bodily exhaustion, I was emotionally exhausted.  I was weary from the condescension of the nurses … the “Is this your first baby?” question … the continual and even painful contractions … the thought of something being wrong for all of this going so long and not progressing … and the thought that actual labor (the hard part!) was still ahead. 

That afternoon, I called a friend and as she prayed for me over the phone, I sobbed.  Lord, prepare me for whatever you have for me … I’m so tired, Lord.

I sat on my bed with my copy of “Calm My Anxious Heart”.  If ever I needed reminders of comfort and peace, it was now.  Reading hungrily, the Lord helped me to focus and re-impressed lessons and verses on my heart …in particular, this passage:

I know of no greater simplifier for all of life.  Whatever happens is assigned.  Does the intellect balk at that?  Can we say that there are things that happen to us that do not belong in our lovingly assigned “portion” (“This belongs to it, that does not”)?  Are some things, then, out of the control of the Almighty?  Every assignment is measured and controlled for my eternal good.  As I accept the given portion other options are canceled.  Decisions become much easier, directions clearer, and hence my heart becomes inexpressibly quieter.  A quiet heart is content with what God gives.”

[Elizabeth Elliot on Psalm 16:5]

 

9:00 PM:  “Bob, I think I want to go again.  I don’t know what I’ll do if they discharge me again, but I need to go.  Hey, if they discharge me, can you just deliver the baby at home?  I can’t handle it anymore.”  We laughed at the thought of him delivering the baby.  It felt good. 

Later: The nurse removed her gloves, “Oh Honey, you’re at a 5 or 6 …let’s get you into a room.  You’re going to have this baby tonight.”  Such relief.

Sometime after 10:00 PM:  …waiting on the anesthesiologist, we prayed.  Lord, prepare our hearts for whatever lies ahead.

11:30 PM:  It’s funny how hours feel like minutes at times.  The doctor was there and speaking to me: “Let’s get set up here and in just a few minutes, you won’t be pregnant anymore.”

Peace.  I feel such peace.  You fully supply all my needs.  You restore my weary soul again and again and lead me in your righteousness and peace.  You are my shepherd.  I shall not want.  I will dwell in your house all the days of my life.

12:04 AM, Monday, October 10th:  My arms reached for the warm and moist towel holding the bluish infant.  “Here he is!  He’s beautiful!”  Voices were talking around me.  The nurses arms reached out and began massaging and drying arms and legs as his mouth opened; letting out a first, strong wail.  The breath of life began to spread and he was turning pink as I heard myself repeating “It’s okay, darling, it’s okay.  Mama’s here.” 

Our Portion.  Our Karsten. 

Lord, prepare us for whatever lies ahead …

 

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