Tag Archives: tumor

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.