Author Archives: Bob

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:

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


Rockin’ With the Sox

Chase’s next chemo treatment has been delayed due to a staph infection (which he’s being treated for at home, and he feels fine), so his blood counts are GREAT, and he feels really good, so this break is allowing us to do some cool things, like GO TO A SOX GAME!

A few months back, someone called the White Sox and suggested that they might help our family out in some way, and the White Sox were SO generous to give us a suite in this last Saturday’s game against the Cleveland Indians.

Chase was so excited to go…

2013-06 Chase Sox

We had some church friends that were visiting from Delaware, so they were able to join us, too, as well as some other old (and new) friends who were at the game, too:

2013-06 Sox game_friends

Our family had a great time (and the kids got a cool hat and shirt, too)… thank you, White Sox!

2013-06 Family at the game


A Very Special Day

Today we received news… news that we have on some level been anticipating since this all began.

The MRI scan was completed and the cancer cells in every area–the tumor site, the brain as a whole, and the spine–all appear to be clear.

We are cautiously joyful.  Joy-filled because we never expected to hear this news, yet cautious because this is a viscious cancer that doesn’t give in easily.

Despite what looks like a cancer-free body, Chase is only 16 weeks into his 54-week chemo protocol, so while we revel in this moment, we do not rest for long.

I’m wrestling as I write and erase, and write and erase again.  I don’t think I’ve ever written such exciting and positive news in such a tentative way.

This day is funny and strange, because happy news doesn’t erase Chase’s pain and suffering, even as it potentially extends his life.  There will still be fevers and transfusions and frequent hospital stays.

Many things ahead will be subject to constant change, but there are some things that will be as they have always been: God’s incredible grace to us, our complete need for Him to rescue us, and the never-ending necessity of living in a moment-by-moment existence.

As Bob and I prayerfully thanked God over Chase’s hospital bed in that first breath of knowledge, we were released from the cancer burden to exult.  And now, we turn towards what is yet to come, acknowledging that it is all–the good and the difficult–a precious gift.

Today was a very special day.

Moment by moment.

Our soul waits for The Lord; he is our help and our shield.  For our heart is glad in him, because we trust in his holy name.  Let your steadfast love, O Lord, be upon us, even as we hope in you.  Psalm 33:20-22

Pounding on the Door

Last week, I had lunch with a former professor of mine at Moody Bible Institute, and as we ate lunch, he would introduce me to people that came by our table.

One of the people that he introduced me to was a sweet woman from Ghana named Alice.

When Alice heard about our family’s struggle with cancer, she said, “I will keep you in my prayers.  We know the great Kingdom Healer!”

Then she said something that has stuck with me since then, as a great word picture of prayer:

“We’ll just keep pounding on His door!”

Everyone has been so gracious to keep our family in your prayers.  Please keep pounding on His door for us.

The Other Shoe

What do you do when the thing you most feared is suddenly your reality?

Today we got the results of the pathology report, and it doesn’t look good.  Chase has an atypical teratoid/rhabdoid tumor (AT/RT), which is a very rare kind of cancer (rare = about 30 new cases per year).  Did we really think that Chase was anything other than rare?

The neurosurgeon noticed, on Chase’s original MRI scan, that there was some light-colored shading on his spinal column, which has now been interpreted as the tumor spreading.

It seems like the most likely course of action will be a 51-54 week regiment of chemotherapy and radiation, during which time he will have a treatment every 3 or so weeks in the hospital.

This is hard news to try to process.  Am I ready to watch my child go through this?  Do I trust that God is sovereign, even over an aggressive malignant tumor?  The words (and melody) of a song by Mark Altrogge has been going through my mind today:

Whatever my God ordains is right
In His love I am abiding
I will be still in all He does
And follow where He is guiding
He is my God, though dark my road
He holds me that I shall not fall
And so to Him I leave it all.

Here’s a clip of the song with this verse:

What this looks like, only God knows, but what we do know is that God IS sovereign, and while the tumor is a tragic physical manifestation of the fallenness of mankind, the child is a beautiful manifestation of the image of God, and in this child we have joy.

A Wonderful Provision…

A hospital is not exactly the best place for non-patients to get sleep.  We found that Ellie and I were having a hard time getting enough sleep, with Chase being up multiple times every night (and especially worrying that he’ll start scratching his incision in his sleep).

One of the nurses in the PICU told us about the Ronald McDonald House, which has been such a blessing to both of us over the last few days.  I don’t know how many times I’ve seen the donation slots at McDonald’s over the years, and never thought about what they do.

Ronald McDonald Houses are all over the country near major hospitals.  People that bring their children to a hospital for medical treatment often need a place to stay.  It’s their “home away from home.”

The Ronald McDonald House near Lurie Children’s Hospital

I was amazed when I walked into the Ronald McDonald House near Lurie Childrens.  It is an amazing place.  When the new Children’s Hospital opened up, Ronald McDonald also moved to a new location.  They have 60 rooms where families can stay, and it feels like a 5-star hotel.  They encourage families to mingle with each other by not having TVs in each room, but they have a common room on each floor where people can be together.  There’s also a kitchen where a family can make their own meals together, and a commercial kitchen where volunteer groups come in to prepare meals for the families that are there.


The kitchen at Ronald McDonald House


David and the staff and volunteers at RMH have been so loving and caring for us over the last few days.  It has been such a blessing.  I’ve slept multiple times over there (sometimes just to nap for a few hours), and when I can pry Ellie away from Chase’s room, I’ve sent her there as well.

I know that now that I’ve been the recipient of this wonderful organization, I won’t be able to pass by the little donation slots at McDonald’s without remembering what I’ve been given.

Preparing for a Long Haul…

“He who dwells in the shelter of the Most High
Will abide in the shadow of the Almighty.
I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.” — Psalm 91:1-2

Chase went into his surgery this morning at about 7:45, and the surgery went quickly and well.  The surgeon, Dr. Alden, was able to remove all of the tumor that we’d seen on the MRI last night.

However, the initial results of the pathology that was sent in during his surgery showed that the tumor is malignant, which means that it’s an aggressive tumor which gets bigger quicker than a benign tumor, and may spread more quickly.  Also, Dr. Alden saw several smaller (“spore-like”) tumors in the sub-arachnoid space of the brain. 

The sub-arachnoid space of the brain.

Since the pathology report showed that the tumor is malignant, the doctors are also now more concerned about some gray coloring that they’d seen on the MRI on Chase’s spine.  They think that the tumor may have spread down into his spinal column.

So, where do we go from here?  That’s the big question that’s been on Ellie and my mind.

Well, the next step is the full pathology report.  The full report will tell the doctors exactly what kind of tumor it is (there are a bunch of types of malignant tumors), which will tell them how aggressive the tumor is, and what kind of treatment is needed.

What is for certain is that Chase will need to do some kind of chemotherapy for the next four or so months, and then he will probably need to do radiation therapy.  This may continue for some time, depending on the type of cancer it is.

This is going to be a long process for Chase.  We appreciate all of the prayers for us and for Chase, and all of the phone calls, texts, Facebook messages, and tweets that people have been showering on us.  We are so grateful for all of our family and friends that have been so encouraging to us in every way.

Chase after his surgery, with his awesome scar.