Tag Archives: chemo

An Average Clinic Day

Today, I’m really excited to share with you what our average clinic day looks like!  (yes, it’s picture sharing day here on EFAMILY…)

When we first get to the hospital, we report to the Hematology/Oncology floor for check-in and vitals.

Chase taking his chances with the germs while waiting in the Hem/Onc play area

After this, Chase goes to a clinic room where they draw the labs and he meets with his Oncology team for a dialogue session and a chemo “push” (a short chemo that can be given in a matter of minutes as opposed to his infusions which are given IV over hours/days).  I have no pictures from our time in the clinic room this week, but I can tell you that despite six adults (four of whom were medical staff and two of whom were supposedly responsible parents) in direct intervention capacity, Chase did try and climb off the clinic table by himself and did fall backwards…you know…directly on his back…the area where he was about to get his spinal tap.  [picture me with my head in my hands at this point]  He was 100% fine.  I think he just wanted to give his Onc team a small taste of “Life with Chase”.  [head in my hands again]

From clinic, we procede to surgery for his spinal tap.  They classify the tap as a surgical procedure because he has to be sedated.  Apparently, a 2 1/2 year old boy can’t always lay perfectly still with a large needle in his back for a long time…who knew? [sarcasm implicit]

In pre-op, taking his own temperature

In preparation for his procedure, Chase is given a small sedation to make seperating from us easier (as we can’t go back with him).  This week, as the drug hit his system, he just wanted to “beep” my nose until they wheeled him out.  “Mellow Chase” is fun.  A sedated procedure is what we call his “Nap With the Doctor“, and as he’s wheeled out for his “Nap“, we always tell him that we love him and we’ll see him when he wakes up.  He often tells me to take a nap too (which usually makes me laugh and cry).

Bob on a conference call in the surgical waiting room

When Chase is in his procedure, we go to the waiting room, which reminds me to highlight the above picture.  My incredible husband has worked diligently with his company to allow him to work from the hospital so that he can always be present with us.  This can be hilariously confusing to medical staff meeting with us for the first time — I had an oncologist turn to me during a conference this week and say “But, we didn’t record the session. What session are you talking about?”  One of those moments when I needed to explain that my husband was speaking to someone in Tempe, Arizona and not to the doctor.  Communication hilarity aside, Bob’s professional sacrifice for us is amazing and I wanted to highlight that here.  What a guy.

After Chase’s procedure, he’s taken to post-op and recovery to be monitored for a while.  During his “Nap With the Doctor“, he usually receives chemo in his spine and has maintenance things done -like changing his dressings- that are much easier to do when your patient isn’t going ninja on you. (a hypothetical scenario, of course…)

Chase, attached to all his monitors, sleeping off his anesthesia in recovery (with Bob -still on a conference call- in the background)

Chase -about 30 minutes later- in a different stage of post-op recovery (different room; same hard-working Dad)

FYI:  That chair Bob is sitting in (in this last picture) is really comfortable and Bob always beats me to it.  He beats me to it so regularly that the one week he didn’t come back to post-op recovery with me, Chase woke up and lectured me about not sitting in “Daddy’s chair”.  [thinking about hanging my head in my hands again]

After Chase is recovered enough to be cleared (awake, talking, swallowing, etc), we are discharged!  …and if we’re really lucky, it’s before rush hour traffic!

And then, all that is left is the ride home …

Chase and his vomit bucket resting after a long clinic day

And that’s an average clinic day for us…

Moment by moment.

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

 

 **A note: In all of these pictures, there is a prominent bruise on Chase’s forehead.  Don’t worry, that’s not from falling off the exam table.  That is what happens when Chase’s platelets are low.  He bumps or even taps against something and his body -in it’s compromised state- cannot bruise or clot properly.  For the record, his head looks much better after his second platelet transfusion on Friday.**

Three Days And Back

We’re home again!!  …after our shortest hospital stay yet!!  (only three days!)

Thank you for praying!  Chase had a successful central line surgery on Thursday and his Friday and Saturday chemo passed without any excitement (adverse reactions, weird vitals, etc, just the usual “excitement” involved in AT/RT chemo…)

A couple updates on the specifics for which I’d asked prayer:

  • So far, the central line is holding and has not infected!
  • The cancer is still in his spinal fluid, but that we entrust (as always) to the One who made him.

Our next scheduled chemo clinic is Thursday and we have high hopes that Chase’s white blood count will still be high enough that we won’t be admitted at that time.

I will leave you with a small picture of my Saturday hospital experience… Chase, with his track pants and light-up Spiderman shoes, sans shirt, chest wrapped in an ace bandage, stomp-running down a hospital hallway (while trailing a large IV pole) pointing at medical staff and growling “No smiling in the hospital!” …

Never a dull part of our moment by moment … :)

Chase rockin’ his new central line!

Chemo Duck

Tonight I realized that it was probably time to introduce “Chemo Duck” to EFAMILY.
Yes, I said “Chemo Duck”…

The “Chemo Duck” is a stuffed duck whose name is “Duck” (a little like Chase’s panda bear named “Panda Bear”), and he’s Chase’s new friend.

He was given to Chase by the hospital as a “role play” toy. He (the duck, not Chase) comes complete with a central access port that can be flushed so that Chase can do to “Duck” what we do to Chase. Although, come to think of it, Chase currently comes with an access port too…

He is a fuzzy yellow number (again, the duck, not Chase) with striped pajamas and a scarf to cover his head… a nod to the common chemo symptom of hair loss. At what point ducks ever had hair to lose is currently still a mystery to me…

Picture my sitting on the floor next to Chase, sterile and gloved, trying to perilously clean and “flush” (inject) medicines into small plastic tubes surgically inserted into his arm… all while he sits perfectly still and neither of us do anything to break the sterility of the environment (you know, like, dropping things on the floor). Did I use the word “sterile” a lot? That was intentional.

Enter “Duck”: who is regularly instructed to “sit still” and “be quiet” because “Jesus loves him” (Sometimes I really wish I knew what was going on in Chase’s head).

Presently, Chasey and his “Duck” are sleeping… all sterilized, flushed, and ready for another day.

Here’s hoping all the people and water fowl get plenty of sleep tonight.

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Six Week Joy

Chase’s cancer treatment calls for a sixth week evaluation.

It’s hard to wrap my head around having had six straight weeks of chemo already.
We spoke with the research fellow on Chase’s team yesterday and the preliminary look at his 6 week MRI showed no new cancer growth (a very real concern with an aggressive, malignant cancer) and the existing areas of cancer to be slightly decreased.

JOY.

We won’t know the full impact of these findings until after they are reviewed (probably next week) by all the relevant specialties (oncology, radiology, neurology, etc), but we are so encouraged even by what we have already heard… The chemo is working.

JOY.

I often close my thoughts with this, as it never ceases to be less true to us:

We don’t know what lies ahead, but we continue as we have…

MOMENT BY MOMENT.

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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.

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

Day Five

Today is day five of Chase’s first treatment. Every time they’ve hung another bag or started a new infusion, I find myself tensely thinking “Wait for it, this is the one that is going to make him code…”. (sidenote: a chemo treatment room is a great incubator for illogical fear)

Each day has brought new information and and sometimes overwhelming experiences…

Reality: this chemo is so powerful that we can’t even change his diapers without wearing gloves.

Reality: my son has a surgically-placed double hose into his chest (which will remain with him for the duration of his chemo) that I need to learn how to clean and care for.

Reality: he hasn’t eaten almost anything in over 48 hours and is on a constant IV for his nutrition.

Reality: one of the chemos is making his jaw hurt to the point where he cries out anytime he opens his mouth…even in his sleep.

I want to keep writing “reality” and listing all the other things that are bothering me or that make our life sound very extreme and dramatic, but just now, I need a reality check, and since you happen to be reading this, you are coming along with me.

Reality: my son is in the final day of his first round of six chemos and he hasn’t coded over any of them, in fact, his nausea is mostly managed by a couple anti-nausea meds and the nursing staff said he is doing incredibly well given his difficult protocol.

Reality: we live close to one of the top treatment hospitals in the nation in an age when they know what AT/RT is and can treat it (even as little as five years ago, this cancer was still fairly unknown)

Reality: “God is always doing a thousand things when he does anything. And we see but a fraction.” John Piper

Moment by moment…

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Truth, Grace, Perspective, and Chemo

I don’t want to write tonight, but there is much to share.
Yesterday, we had a full schedule of appointments at the hospital – Chase was cleared post-op by his neurosurgeon and was cleared pre-chemo by the oncology team.  Oh, and in the middle of all the scheduled visits we had a series of UNscheduled visits when his father and I (please, keep in mind that we are parents of four, and in this moment, we only had ONE to watch) ignored that one wiggle that sent him backwards off his cafeteria chair and onto the floor…on his baseball head.  Oh my.  He’s completely fine.  Someday, Bob and I will recover too.

Coloring to pass the time in pre-op

After all our meetings yesterday, we got to go home for a few hours and then came back very early this morning for Chase’s second trip into the OR in 2 weeks – this time for a central line, spinal tap, and first spinal injection of chemo.

Daddy prepping to assist the medical staff until Chase stopped kicking them :)

As I write this, we are back in one of our lovely lake view rooms on the oncology floor.  For this first chemo visit, he stays for several days, incredibly vigilant monitoring, and lots and lots of chemo drugs.

Our new life

Oh, the drugs!  In some ways, this is harder to handle than his surgery.  I hate the thought of what these life-saving drugs are going to do to him.  Each infusion makes this more real…or at the very least, keep us from ever forgetting where we are and why.  I find myself pondering again and again the strange and sober mercy that allows such suffering in the now for the benefit of long term.  (always pondering it…never questioning it)
Today has really been a good day and Chase is doing incredibly well given the circumstances.  So why didn’t I want to write?  Because today is a struggle for me.  Not a high-level freak out… Just a low level wishing things were other than what they are.  I feel very weak in the “bigness” of this disease and it’s implications.

With Chase immediately post-op as he was coming out of the anesthesia

In this moment, I know that I need to be reminded of Truth.

“Have you not known? Have you not heard?  The Lord is the everlasting God, the Creator of the ends of the earth.  He does not faint or grow weary; his understanding is unsearchable.  He gives power to the faint, and to him who has no might he increases strength.   Even youths shall faint and be weary, and young men shall fall exhausted;  but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”  Isaiah 40:28-31 (ESV)

Though I am weary, God is not.  Though I am weak, God is not.  Though I am very intimidated by my son’s chemo protocol, God is not.  Though I have no idea what our future holds … GOD KNOWS.  In fact, He more than knows…He has perfectly crafted and designed these events in a symphony of praise and glory beyond our wildest and most beautiful imaginings.
Moment by moment perspective.
Moment by moment grace.

Sleeping peacefully at the end of a long day (Isaiah 26:13)