Monthly Archives: June 2013

UPDATE

We got the news this morning that yesterday’s blood cultures were negative!  (in this scenario, “negative” is good and “positive” is bad)  This is an early indication that all the antibiotics are working and for now, Chase can keep his port.

So, in this moment, we are home!

Chase still has 21 days of an IV antibiotic…which needs to be given every 8 hours…around the clock… (picture me frantically searching for a nurse call button at 2:00AM)… But, this we can do because we’re HOME.

Tomorrow, we will hear from his doctors whether he is healthy enough to start chemo again on Thursday.  Which is why we will take it…

Moment by moment.

Our hospital visitors...because sometimes you need a lot of family support to lay in bed and watch Tangled :)

Our hospital visitors…because sometimes you need a lot of family support to lay in bed and watch Tangled :)

Passing Through

One of Chase’s favorite things to do is to dance around the hospital room while listening to music.  Even with his IV pole, chords, and tubes following him, it doesn’t matter, he loves music.

Yesterday, he had to take an antibiotic that gives him something called “red man’s syndrome” (he turns red and itchy) and Benadryl makes him better…and sleepy.  So, after having Benadryl every 6 hours all day, it was 9:00pm and we were having a “dance party” in the middle of the Hematology/Oncology floor.

Sometimes, in moments like that, the cancer-ness of it all strikes me fresh.  …I’m dancing…in a hospital room…with a radius of 2 feet because any further and a child’s arterial line is pulled…and he has the line because he has cancer…deadly, deadly cancer.

Then the words of the song we were listening to crept through my thoughts… (Chase was listening to “O Holy Night“)

And in His name all oppression shall cease…

As silly as it sounds, it brought tears to my eyes.  Even though the verse refers to human oppression; as I held Chase is one hand and his IV tubes in the other, I thought of the oppressive nature of Chase’s cancer.  More than just Chase’s cancer…of all cancer and all sickness and pain and all that is wrong and oppressive in this world.

As of this moment, the cancer has not stopped.  For us, it has not ceased.  In fact, quite the opposite… It is an intense, all-consuming thing with what seems like endless complications.

So what then?  If, in this painful, broken life, the oppression never seems to end, there must be something other than the removal of the circumstance that brings peace!

There is.  Of this, I am sure.  We are not alone in our pain.

When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.  For I am the Lord your God, the Holy One of Israel, your Savior…

In this moment, we await a single lab…one single test tomorrow morning which will inform the decision to send us home or keep us here for what will most likely be another central line surgery.  When I dwell on the implication, after months of treatment and too many surgeries, it feels like the water, river, fire and flame rolled into one.

But

We will pass through because an all-knowing, loving God has promised to be with us.

Moment by moment.

 

Of Lines, Fevers, and Gut Instinct

As a parent, you know when something is wrong with your child.   It’s a gut instinct. It’s often inexplicable. You just know.  Which is precisely why the ER doctor’s words brought little peace: “Chase’s counts are really good, so we will be able to give him a broad spectrum antibiotic and then you should be on your way.”
Within an hour of that conversation, the prescribed antibiotic touched off the real reason for the fevers and Chase’s temperature rose alarmingly (105.8) while his blood pressure dropped. In this moment, the parental gut had been correct and we went from preparing for discharge to preparing for many more hours in the ER and even the possibility of needing to move him to the ICU.
After almost eight hours on the emergency floor, Chase stabilized in such a way that everyone involved felt comfortable sending him to the Hem/Onc floor (his second home) and bypassing the ICU.  Thankful.

Nine Hours Later…
This morning, the doctor came in to inform us that the blood taken in the ER shows early signs of an infection. At this moment, they are still in the process of testing the bacteria and gathering information, but if this is the case; it will be Chase’s second line infection in as many months. There will be a best case scenario of a couple weeks of antibiotics and a worse case scenario in which the line itself is the issue and may need to be pulled (read: more surgeries and peripheral IVs).  And with all of this comes a certain amount of parental self-doubt… What are we doing wrong? How are we mis-caring for the line in such a way that he lays in a bed, shivering and whimpering while his body fights itself?
Ultimately, in this moment, there are no answers as to what the next day or week holds. We will continue as we started…
With grace upon grace… Moment by moment.

(picture: finally leaving the ER; moving from the transport into his room…all the cords)

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31 Days: Cancer By Numbers

My darling mother, who often serves as my “right hand man“, was gone for a whole month recently.  By the way, when I say “who often“, I mean “who constantly“.  It took many, many people to stand in the gap as she was gone and as I was trying (very inadequately) to thank all the gap-standers and stretcher-bearers I found myself flipping back through my calendar and the mountain of discharge papers to put together a list of the 31 days.  A thumbnail sketch of our bigger picture.  I’m posting it because the numbers are real and yet another glimpse of our cancer life.

In the last 31 days…

18 days were spent in the hospital.

There were 2 surgeries/surgical procedures.

There were 4 IVs placed and lost.

There were 10 days of chemo infusions.

There were 3 separate trips to the ER.

There were 7 blood and platelet transfusions.

There were 14 lab appointments, dressing changes, or other doctors’ appointments.

…in addition to multiple oral and IV medication given round the clock, the necessary medical care for a child with a central line/IV nutrition, finishing the year of home schooling, taking care of the house, and daily life with four little kids.

The crazy part of this is that I started counting on May 13th, so this list doesn’t even reflect all of Chase’s central line issues before that date or the multiple transfusions/days in the hospital/labs, etc that have happened since.

This isn’t meant to draw attention to our busy schedule, or indicate that we’re above average in any way – as I mentioned at the beginning: I had amazing amounts of help and cancer or not, everybody’s busy.  I just wanted to share these numbers because they’re real and they’re intense…and in a very small way, they explain why I haven’t blogged as much recently, why we have dark circles under our eyes, and why Chase cries more now when we’re at the hospital.

Throughout the 31 days, I have continued to be greatly comforted by Deuteronomy 33:27:

The eternal God is your dwelling place, and underneath are the everlasting arms.

Those arms are strong enough to carry the cancer numbers when we can’t.

Moment by moment.

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