Tag Archives: hospital

Good

In pre-op with Mrs. Schneider

In pre-op with Mrs. Schneider

The doctor turned his head back to the computer screen on the desk and read out the official words from the final radiology report: “The MRI shows no evidence of new or progressive tumor.”

Let it sink in…  Good news.  The very best we could have hoped for!  These little growths, these that have so threatened for months now, these have showed themselves to almost surely be treatment effects.  What a strange cancer world we live in that where success is measured in not dying today and side effects can provoke a sigh of relief.  Oh, but what relief

In pre-op preparing for the scan: when the medicine works, it works quickly...one minute, up and playing, the next like this...

In pre-op preparing for the scan: when the medicine works, it works quickly…one minute, up and playing, the next like this…

And Chase?  He’s so funny… his hardest part was done yesterday when he woke up in post-op.  The needle was removed and he could eat and that was it.  And today, when we told him the news, he put his hands in his pockets, shrugged, and said “Oh. Good.” …as if he’d known all along.  This boy, he takes it as it comes.  And so will we.  Oh, and tonight, it comes good and great with no fresh cancer news, answered prayer, and an MRI that can wait for three whole months instead of six weeks.

Good news…  The very best we could have hoped for…

Moment by moment.

“This is the Lord‘s doing; it is marvelous in our eyes.  This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:23-24

Chase with Nurse Jo in post-op after his scan

Chase with Nurse Jo in post-op after his scan

Giving Thanks

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Last year and this year too, we take a moment to reflect…

This Wednesday in 2012, Chase was deep into radiation in addition to his chemo therapy and was staying in the hospital. He was weak and his counts were very low, but he was stable and so, late in the afternoon of this Wednesday, I held his weak and white body by the window and stared out at the lake, shielding his face – his eyelids covered in scabs from where daily anesthesia tape had ripped the tender skin – and prayed that they would let us go home for Thanksgiving.  And then Dr. Goldman entered the room (as only he can enter a room) and told us to go.  And we went.

Two years later, we are thankful for so many things and our darling Chase is still with us to celebrate.

Giving thanks… Moment by moment.

“My heart is filled with thankfulness
To Him who walks beside;
Who floods my weaknesses with strength
And causes fears to fly;
Whose ev’ry promise is enough
For ev’ry step I take,
Sustaining me with arms of love
And crowning me with grace.” [Getty, Townend]

Two More

Chase’s counts are finally recovering from his last round of chemo!  Yesterday evening, we received word from the hospital that he has been cleared to come in on Monday.  His levels aren’t exactly where they should be, but are very close.  It is our hope that his Monday labs will reveal he’s fully recovered and that he can be admitted for the week.  We don’t hope this because we love chemo, but because Chase only has two chemo cycles left!  …and then he’s done!!

We would so appreciate your prayers as these last rounds are, in many ways, the most difficult.  The protocol doesn’t change, but his body is exhausted and each round seems to take it’s toll quicker and more painfully than the last.

Moment by moment.

My darling Chase

My darling Chase

 

Looking For Still Waters

Monday
With a long but encouraging clinic day behind us, I gently lifted Chase onto his hospital bed. We had just finished several rounds through the halls on the tricycle and he was finally ready to rest. After chasing him with a rolling IV poll and protecting/pleading for caution with his central line, I was also ready to rest. As I lifted him, his face contorted in pain and he let out a warning scream -I’d seen it a hundred times at home- the line was pulled tight and the IV tubing stretched from the pole to his chest. I quickly gave it slack and laid him down. He’s an active boy – this happens all the time.
Then he contorted and grabbed his chest, still screaming and crying – this did not happen all the time. With an all too familiar feeling of dread, I raised his shirt to see dampness around his central line dressing. Not again, please, not again.
The doctors and nurses confirmed what we feared. The line had been partially pulled from his chest when the IV tubing caught on the pole. With his new central line -a port- this wasn’t the same problem it would have been, say, two weeks ago – just remove the damaged needle and put in another one. The main features of the access are protected under the skin. It would have been so easy but for the chemo. There was chemo infusing when the needle moved and a particularly vicious one at that. Known for harming tissue and muscle; there was a small but very real chance that instead of going into the vein, the damaged needle had spewed this poison into the muscle around it.
For several hours, there was an intense spiral: immediately discontinue use of the port….apply ice…had we heard about the antidote?…IVs needed in his hands to keep him hydrated…surgery for a temporary line in the morning…and on it went. The door to our room was a constant portal to more poking, prodding, and bad news. Please God, no more
In the early afternoon of Tuesday, for the second time in about 24 hours, Chase was taken into surgery to place a temporary line. Moments before he went into the operating room, I received a text saying that a friend of our dear friend would be the nurse on duty in the room. I can hardly explain the encouragement it is to send your child into that cold, dark, unconscious place with a familiar face and friend at their side. A blessed moment in the chaos.
Despite the completed access surgery, there will still be more unfolding consequences of that malfunctioned needle. His hands are bruised and scarred from all the IVs, both failed and successful. He shows signs of the broken trust that comes from hours of people touching and hurting as they’re trying to save your life – anytime someone enters the room and greets him, he screams “No!”. The port must be left alone for at least a week -maybe two- to guard against the chemo damage, and when he leaves here, with his temporary line (in his upper arm…again), we will have to vigilantly continue to watch for the signs of that wretched drug doing its harm.
The irony of these last two days is that when you’re first given your child’s diagnosis, you expect that horrifying knowledge to be the all-encompassing stress and grief. In this moment, I can assure you that -at least in our case- it’s the little things, the daily, the back-and-forth, the multiple procedures. Those are the things that kick you when you’re already down.
But…
In this moment, he’s laying on the bed sleeping peacefully. …snoring, actually. His punctured, bandaged and tubed arm propped on pillows. His mouth relaxed from its pained expression.
Peace.

“He leads me beside still waters. He restores my soul.” Psalm 23:2b

Moment by moment.

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That Time We Went To The Hospital…

These last two weeks have seemed a little like a single long day that wouldn’t quit!  As parents of a child with cancer, we have been carefully prepared to be ready at a moments’ notice to pack and run…and pack and run again, but this has been extraordinary even for us.  When I think through “moment by moment“, I never expect each new moment to be totally different from the last, but that’s exactly what this two-week day seemed to hold.

It all started as we commuted to the hospital for five straight days of all-day chemo infusions [insert comments and mutterings about traffic here] .  We were mercifully able to be home on Saturday, but on Sunday, our best layed plans for “normal” and “rest” were blown to smithereens as soon as I heard the words “Come quick! Chase is bleeding!” and realized that one lumen on his central line had torn.  …so, back to the hospital we went.

A lumen repair kit...aka: needle salvation

A lumen repair kit…aka: needle salvation

Sidenote: we often tell hospital staff “It’s Chase.”…as in “Yes, we know this rarely ever happens, but….it’s Chase.”

Back to the story… in true “It’s Chase” form, Chase’s line tear was in an area for which they had no repair parts, so after hours in the ER and the vascular access team weaving what can only be described as a sterile burrito (comprised of alcohol wipes, gauze and tegaderms) around the line -to protect from the errant bacteria-, we were discharged.  Until Tuesday.  When we went back in for blood and platelet transfusions and the line repair.  We left that same night and managed to stay out until…Wednesday night.  A whole 24 hours.  At which point, Chase hit his chemo nadir (when the chemo is at it’s strongest point), spiked a fever, and after sitting in the ER until 2:30AM, were re-admitted to the hospital.

We were hoping to go home fever-free sometime on Thursday when the newly repaired central line malfunctioned (see: more blood everywhere) and so we didn’t leave until Friday night.  I should also note that we’ve become very close with the vascular access team.  On Friday night, the stability of the line was still somewhat in question, but with nobody finding anything decisively wrong, Thursday’s blood experience was chalked up to a freakish incident of nature and we were discharged with the niggling thought that the line would only ever show it’s cards once we left the hospital…and got home…and tried to rest.  …which did indeed turn out to be the case.

The malfunctioning repair

The malfunctioning repair

On Saturday night, about an hour into Chase’s infusion, I realized his IV fluids were running down the front of his shirt, so after a brief moment of parental freak-out, I calmly put my eyeballs back into their sockets and we went back to the hospital.  Triage in the emergency room lasted so long that by the time the doctors came to look at the line, they declared everything dry and in need of testing.  After an hour or more of testing, it turned out that the line was leaking, so around our favorite admitting hour (2:30am, for those of you just joining us), we were again given a room with the promise of surgery consults in the morning.

Without a doubt, the worst part of the loss of a central line is the need for peripheral IVs (the kind they stick in your hand or arm).  For Chase, that usually means three to five people holding him down and the collapse of at least one vein from his terrifying struggle to escape the needle.  If you were questioning why we’d put up with a central line and all it’s drama in the first place, don’t miss this… The reason we put up with and even love the central line is because it saves Chase from needles.  Medical staff can draw blood and administer any medication or chemo through this line – without ever touching his body.

Proudly displaying his IV - "You should see the other guy!"

Proudly displaying his IV – “You should see the other guys!”

It took four people and two tries, but they finally got an IV in Chase’s hand.  And that concludes the events that led to Chase going into surgery on Sunday afternoon and getting a new central line.

Which summarily ended our two-week long day.

You can’t make this stuff up.

Moment by ever-changing moment.

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

Sleeping peacefully in pre-op moments before he was taken back to the OR

Sleeping peacefully in pre-op moments before he was taken back to the OR

Day Two

Radiation day #2 started at the radiation building, and then due to a fever, moved to the outpatient oncology office, and then to the local ER, and then to an inpatient room, and then discharged from the local hospital to the special transport team, and finally, taken “sirens and lights” to Chase’s hospital.

Waiting in the oncology office after radiation

My apologies for the run-on sentence.  It was a run-on day.  Because of the fever, radiation is currently suspended.

Posing with some members of his spectacular transport team …headed for “his hospital”

Stay tuned for Day #3…

Moment by moment.

Being Ready To Go

Since I last wrote about Chase (a veritable age ago), he has been discharged from his sick visit, readmitted for his inpatient chemo, and re-discharged post-chemo again.

Chase in the midst of his first admission for a fever, with his NG tube in his nose.

 The five days in between our hospital stays were packed and precious with family times, in which we saw the truth of doctors words – “Just wait until you get him home.” Chase became a different child in those five days! His color improved, he started talking and interacting more, and even ate food! (Note: this is a big victory for an AT/RT patient as their protocol is so intense that many children stop eating altogether. Chase still needs IV nutrition on a daily basis, but just getting him to the table is a big deal.) The doctors also said that most parents mark the time by this – “When your child starts doing really well, that means it’s time for more chemo.” Check. Time for the big bags, long infusions, and constant monitoring that goes with his inpatient chemo stays.

Chase swinging on the swing with Daddy during one of the few days at home from “his hospital.”

It’s amazing and a little sick how quickly we adjusted to this “normal”. In fact, we are already forming a routine. This is a blessing, but I truly never thought there would be a day when medical staff hourly monitoring my child’s vitals around the clock would be expected. (Have I mentioned recently how incredible the medical staff is? I should. They are.)

At this moment, we are on the other side … Heading for the “nadir,” the low point. (Real talk: I had go look up “nadir” when I first heard it. In a word, it’s the opposite of “zenith”…ie: when Chase is going to feel absolutely awful). His color is not as good, he’s more tired and irritable, and he regularly complains that his “tummy hurts”. We can tell that his counts are dropping: he’s already clocked in with a couple low grade fevers and we know its only a matter of days before the fevers truly set in and we will be inpatient again.

Chase’s chemo day was switched to Mondays and so we will go back tomorrow for what should be an outpatient clinic day. …but we’ll pack our bags anyway, just in case.

Chase during his inpatient chemo this last week.

Becoming accustomed to living a life that could be dropped, switched, and hospitalized at any moment is a challenge. It’s hard not to be consumed with watching Chase for changes and stalking him with a thermometer in hand (it’s a funny picture, but I’m often tempted…), yet it’s just another facet of the “moment by moment” mindset we keep ever in front of us.

And so we continue on … Making memories, finding joy, and being ever ready to go.

A Good Moment

Early this morning, Chase had a fever that broke on it’s own!

This is a huge blessing as he has been struggling with higher fevers broken only with medicine since Saturday.

Also, his lab work came back showing improvement to the level that he won’t need any blood products transfused today.

And here’s the best part… Last night, he reached across the bed, patted my arm, and smiled. He’s been so sad and pained for so long this week that I’d forgotten how much I’ve missed his good moods until that smile broke through.

Rejoice with us! This is a good moment.

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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

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.