Tag: cancer

What To Expect When You’re Expecting the Unexpected

Chillin’ through infusions and transfusions…

Our trip to the hospital this weekend was unscheduled, but it wasn’t completely unexpected.

Up until now–as we’ve made our decisions about Chase’s treatment plan/location–we haven’t said too much about AT/RT, but if you read “The Other Shoe” and googled that specific cancer, you probably already have an idea about what this looks like.

The truth is that AT/RT is very aggressive and doesn’t have a great prognosis (I won’t share the exact percentage here because Chase is either 100% with us, or he isn’t and that’s all that really matters). Regardless of statistics, Chase is a fighter, and the cancer’s aggressive nature requires an aggressive response.

Treatment of AT/RT is a little like a Looney Tunes-style destruction of cancer cells: they’re going to punch it, and then kick it off a cliff, and then half-way down the cliff, catch it and put it in a cannon and shoot it to the moon… then let it fall to earth to explode in a fiery ball of death in the side of a mountain (I’m picturing Wile E. Coyote in my head right now).

What this looks like in real life is: getting to know the hospital REALLY well. Chase’s treatment protocol is front-loaded to try and force a remission and so for almost the entire first half of the year-long period, he is scheduled to receive chemo every week (yes, every week).

Because of this, he is going to be in a pretty continual state of low immunity, which means he’s prone to every infection and will get fevers very easily.  Because of this, he will probably have a lot of unscheduled hospital visits (like this weekend) for antibiotics, transfusions, and extra monitoring.  Chase’s oncology team had been verbally preparing us for this from the first day. It doesn’t save us from seeing him in obvious pain in a hospital bed with a fever of 104, but it definitely helps prepare us to expect it.

Does it sound crazy? Yes, probably, but our son’s life is the answer to that question, so how could we ever NOT pursue this treatment.

I do not know how this year will end or what the long term effects will be on our family.

Here’s what I do know… We are going to get through it (let’s all say it together) …

Moment by moment through GRACE

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

Another Average Week

I meant to write all week and the time completely escaped me.

Here is a brief (“brief”? A bit of levity there…) update from our week.

Monday: Chase went back into surgery to have his infected central line removed and a PICC line placed (in his arm).

Some things never change. Chase, before his central line removal, explores the cupboard.

Tuesday: We finally got to go home!!  …in time to meet Grandpa and Grandma’s flight.  (Early bedtime? Say what?)

Wednesday:  Bob and I checked Aidan into outpatient surgery at our local hospital – to have his tonsils and adenoids removed.  Surgery was successful.

Having to show up for surgery at 6:00 A.M…. Well, we may recover some day.  Aidan was a pro and he was genuinely excited about all the little things like monitoring vitals, the beds and the ID bracelets because he was getting to be just like Chase.  Watching them compare their hospital ID bracelets was both heart-breaking and a little hilarious.

Big brother joins the surgery club…

Thursday: Thursday is our scheduled chemo day. Anytime you think of us on a Thursday, we’d so appreciate your prayers.  This day meant rising early to get back to “Chase’s Hospital” (he really does call it his hospital) for his labs, chemo, and another lumbar puncture (injecting chemo into his spine).  This day was INCREDIBLY encouraging to us because Chase had been able to come home for a day (something never to be taken for granted on this chemo protocol), his counts had dropped – but not as low as they’d expected (so he could come back home instead of being admitted), and despite eating almost nothing, his body was doing well on the IV nutrition and he hadn’t lost any weight since his discharge on Tuesday!

Chase, Thursday, post-op recovery

Friday: The first day in SO many days that we didn’t have to be in either a hospital or a doctor’s office.  Ahhh…  We ended the day with a small celebration…cuddling up on the couch in our pajamas and watching the “Apple Dumpling Gang.”  Silly and perfect and all together for a moment.

Saturday: Chase had a rough night and a slight fever in the morning.  The fever got higher as the morning passed and we brought him back to the hospital early in the afternoon. (fevers in a chemo patient are really important as they are usually indicative of a system issue that the body can’t fight due to it’s lack of white blood cells).

Sunday morning: I’m writing this blog post from an inpatient room in “Chase’s hospital.”  Chase will be here until he completes a course of antibiotics, the fever is under control, and his blood counts start going back up.

Even though it’s hard to be back in the hospital, we have so much to be thrilled about this week… two kids through two surgical procedures in two hospitals with no complications, Chase doing far better than expected, for longer than expected after his chemo clinic, and getting a special family evening to relax in the middle of the chaos.

Moment by moment…

Cancer and Laundry

Have IV, will travel…

Two weeks ago now, my third child was diagnosed with a very rare, very aggressive malignant cancer.

Do you know what I spent this morning doing? The same thing I have spent so many mornings doing since he came into this world…tracking Chase, keeping him out of disastrous trouble, and praying silently for control over my impatient frustration that is almost always right under the surface with my high maintenance (but adorable and precious) child.

Real talk.

Teams of doctors literally surround us with prognoses and numbers and yet it’s scarily like every other day…only he has a central line and IV fluids and we are in a hospital, not our home.

How shockingly fast our circumstances become mundane. There is nothing mundane about this situation, and yet, already, I feel my mind and emotions coming around to it in a sort of attempt to deal with our new reality.

Playing with Grandma Judy (the mask is because we left the oncology floor of the hospital)

I guess what I’m trying to get at is this…my moment by moment grace today is in asking the Lord to keep the swift and fleeting nature of our lives in front of me. …never in an overwhelming sense, but rather in the sense that every second is meaningful, precious, and an opportunity to point ourselves and our children to the cross.

Because it is all too easy to consider a terminal illness on one day and be thinking about the laundry on the next. Trust me. I know.

“Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.” Hebrews 12:1-2 (ESV)

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.

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.

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