Friday, December 23, 2011

prayers please

quick update:

chloe went into the clinic (12/23) at DeVos
for a quick (?) count check.
her white blood cell count and ANC
are quite low.
we can still go to church
and gather with family
but we need to practice
very good hand-washing skills
and stay away from germs.

we ask that you
cover her with your prayers.
specifically that she stays well
and begins to fight back.

we'll return to DeVos
next week Wednesday
for more counts.
her last chemo appointment
is on january 4.

on a positive note,
the whole family went into GR today.
while chloe and i waited at the clinic,
martha, henri and kip explored downtown
and even ice-skated a little.
we met my parents
for dinner.
we tried to make it a fun outing,
and it was just that.

Christmas Blessings


two worlds

as i mentioned in an earlier post,
tuesday morning found us at DeVos,
bright and early,
checking in for a set of routine scans.

often when we go to the front desk
to get our parking ticket validated
and get our ID badges,
there is a line of
other parents and visitors
checking in as well.

on that day there was an amish couple,
waiting with their baby.
maybe it is because they stood out
in their traditional amish clothing,
the woman wearing a bonnet,
the man with a long beard,
seeing them stuck me
and i can't get that image out of my head.

on one level, it brought
strong memories back.
as they were given a room number,
i remembered that fateful day,
july 7,
as kip, chloe and i waited.

we had so little information.
all we had were ultrasound results
and the knowledge that we would meet with a
pediatric oncologist,
scary words to us at that time.

it was a shock to be given a room,
to have chloe admitted.
it meant so much more than
meeting with a doctor.
we were in for something big,
something that would change our very lives.
we were setting foot into an unknown world.

seeing this couple with their baby
struck me on another level.
how much more significant was their entrance
into this unknown world?
the receptionist asked for a driver's license,
a photo ID,
this was not part of their world.
they were about to climb aboard an elevator.
their baby was likely to be hooked up to machines.
computers, bright lights, all sorts of medical technology.

when we checked in that day in july,
we had our cell phones, laptop and ipad.
we had instant means of communication.
we had instant messages of prayer and support.
we had a virtual community surrounding us instantly.

what was it like for this couple?
it is likely that they were far from home,
far from their community,
far from the simple comforts of their lives.
confronting a culture so very different from their own.

i know that different groups of amish have different rules,
it may not have been as great of a shock as i imagine.
i know that the simplicity of their lives allows their faith to flourish.
i take comfort knowing that they can find peace.

and yet,
i still cannot get them out of my mind.
please join me in saying a prayer for them,
wherever they are at this moment,
whatever journey they will follow.
thank you, as always, for your constant prayer.

Thursday, December 22, 2011

the week before christmas

4 calling birds,
3 french hens,
2 turtle doves
and a partridge in a pear tree.

4 dr. visits,
3 antibiotics,
2 canine meds
and a cancelled cabin get-away

it has been quite a week
for the holland-andersons,
and it was all in a span of 2 days!

it started on sunday night
tobi, our dog, woke us up,
coughing loudly.
he was coughing and sick
all through the night.
kip and i took turns,
knowing that one of us
would be driving chloe to DeVos
for her routine appointment
the next morning.

martha also awoke in the night.
she had a fever and just
felt yucky.

the next morning,
chloe awoke with a fever.
i watched the numbers
on the thermometer climb too quickly.
her temperature was over 101.
the hospital agreed that she could
keep her appointment
and they would take stock of the situation.

kip was on for taking chloe in.
the drive was not the most pleasant,
chloe's tummy would not cooperate.
at the clinic, they isolated her,
checked counts and took some cultures.
they started her on an IV antibiotic
and gave her some anti-nausea medicine.
chloe crashed on kip's lap.

on the home front,
martha continued to
battle a fever
and i was headed off to the vet.
tobi was fine, he, too,
had some IV fluids and an antibiotic.

fortunately for henri,
he was staying at my parents' house
oblivious of the chaos at home,
enjoying some cousin time.

after lots of waiting time,
it was decided that chloe could go home.
her counts were good enough
that the doctors felt confident
in letting her go.

kip and i regrouped at home,
exhausted,
worried,
watching our girls and dog.

and then the phone rang.
an oncologist from DeVos
had gone over chloe's charts
and realized that she should have another antibiotic,
a full spectrum antibiotic
that would protect her just in case.
there is no way of knowing
if she had a bacterial infection,
cultures take 18-24 hours to come back.

the oncologist asked us to go to Holland Hospital.
we were sent to the ED where they would
access her port and administer the medicine.

we packed it up and hung out
in the ER until 9:30 pm.

and that was only monday!

on tuesday we had to get out the door by 7:30 am
to get chloe back to DeVos for some scans,
a routine chest x-ray and ultrasound.
kip and i decided to go together,
driving alone with a sick kid is tricky at best.
even though chloe wasn't at 100%,
the drive was much better.

we came home wiped out.
we decided that we just didn't have it in us
to pack everyone up and head off to a cabin.
we also wanted to be home
in case chloe's fever spiked again.

it was a harrowing few days
but believe it or not
our wednesday was quite uneventful.
we took martha to the doctor
to make sure she was on the mend,
chloe had her spunk back,
henri played with a friend,
we cooked dinner.

it felt peaceful, relaxing.
i guess we didn't have to get away
find a little peace.

christmas vacation lies ahead of us,
open, inviting.
there will certainly be another trip
to DeVos (Friday, to be exact),
but it feels okay,
it feels like we'll have a moment
to take in the season,
the childlike wonder and excitement,
the welcoming of a baby,
a baby who came to save us all.




Monday, December 12, 2011

back to chloe

the last few posts
haven't really been
about chloe.

the last few posts
have been
a way
for kip and i
to process
the impact of
all of this
in our own souls.

now, it's back
to chloe.
it has been
3 weeks
since chloe's
last treatment.

this past week was
a great week
for her.
her energy and spunk
were evident.

chloe played more,
enjoyed preschool
and daycare,
had a playdate,
and went to see martha
in the wizard of oz.

she danced to music,
used her imagination,
cuddled her guinea pigs,
baked brownies,
played in the snow
and just seemed to
feel better.

it amazes me how
chloe feels totally comfortable
wearing hats
and going hatless.
at this point,
hair loss
seems more of a worry
to the parents and siblings
than it does to the patient.

the mind of a four year old
also astounds me.
she takes life at face value.
she doesn't ask why.
she doesn't compare herself
to other 4 year olds
or her siblings.
cancer and chemo
are her reality.
when she feels well
she bounces,
when she doesn't
feel well
she snuggles in
without complaint.

today chloe will
return to DeVos
for her next treatment.
we anticipate
a little bump in the road
in terms of her energy
and high spirits.
we hope that this week's
chemo cocktail
is not as harsh as the last,
that she can bounce back faster.
we hope that she'll get
the rest and attention
that she needs
amidst this busy
last week of school.

before the next treatment
we look forward to
anticipating the
hope and joy of Christ's birth
through church activities,
celebrations with family,
and a little get-away
to a cabin in the woods.

Thursday, November 24, 2011

A Shrinking Circle

A couple of months ago, I posted a piece to my personal blog in which I explained how I've experienced growing and expanding circles of people since Chloe's diagnosis.

I'm feeling like it's time to shrink my circle again, but also feel like we need to share with you, our much larger circle, what's going on.  Last week I came to the difficult decision that I need to take a short leave of absence from my teaching position.

Christa and I have sort of struggled with how much of our personal journeys to put in this place that has become, more or less, "Chloe's Care Pages."  We've made a lot of our family journey quite public, but now that we're struggling with some things personally, we're questioning how much to put out here.  Yet, in the end, the health of each of us individually contributes to the health of our family collectively.

For the past couple of months, probably since Chloe was inpatient at DeVos the first weekend in October, Christa and I have been running with a deficit - sleep, energy, patience, and the like.  Since Christa works half time she doesn't have the opportunity to take a family medical leave, so I knew if one of us was going to take extended time off from work it was going to be me.  Many different people from different parts of my life have encouraged me to take the time off, but my standard refrain has been "I just need to make it through parent-teacher conferences, then it will be okay." 

About two weeks ago I woke up with a tightening in my chest and a slight cough. I thought I was getting a cold as it continued through the week until I ended up with a minor panic attack while driving to work on Friday morning.  That confirmed what I had been thinking in the back of my mind, too much stress.  The thought of rescheduling my 26 parent-teacher conferences that were held last Monday and Tuesday was too much, so I just pushed through.  The tightening in my chest disappeared for the weekend, but returned about an hour before conferences began last Monday.

Tuesday morning I realized that I had almost made it through conferences, my goal for the past months, but that it wasn't going to be enough.  When I finally admitted to myself that I can't keep this up, the tears began to flow and wouldn't stop.  I held it together through the evening of talking with my students' parents and found some time to talk with my principal after my last conference.  As I expected, she was very understanding and encouraged me to take the time.

I'm finding there is a great deal of guilt that goes along with needing to say that I just can't do this -- keep up with family+cancer and work together.  Yet, in the end, I know that this is what I need to do.  I need to be able to feel that I can spend time with one of the kids when they request it, instead of putting their requests off while looking for available time, which doesn't come.  I need to know that I can give Christa and our relationship the time she/it needs right now as this seems to be "mile 20 of the marathon" and we've hit the wall.

A couple of decades ago, my great aunt Ebba (from whom Chloe gets her middle name) said to me:
"Where would we be without prayer?"
On that note, please pray for...
  • Chloe, that she continues to heal from the effects of the chemotherapy that she received last week.  This dose hit her pretty hard and she's been tired and hasn't wanted to eat.  Pray also for her to mentally be able to keep this up for a couple more months.  The trips to GR have lost their appeal to her and she and I will be there by 8:30 AM again tomorrow morning...
  • Henri as he continues to heal from his mono and seems to be needing a lot more of our attention than usual. 
  • Martha as she deals with feelings of jealousy and has told us "I wish I had cancer so that I could..." more than once in the last few weeks (and patience for us so we can just listen and not get upset when she says that).  
  • Christa as she works to deal with feelings that have been locked away over the past five months and comes to grips with the fact that we have two more months of this marathon.
  • Me as I shift gears and "work" to support our family in a myriad of ways.  Specifically, I need to slow my brain down (hopefully that will allow me to sleep, which I haven't been doing), focus on one thing at a time, and get out for a run more than once a week in an effort to reduce the abundance of stress that I've been carrying the past few months. 

Sunday, November 20, 2011

not quite there

after a 3-week break,
chloe had
another round of chemo
on monday.

i was hoping to get a picture of
what is left.

we believed that
monday's treatment
was the
second-to-the-last
treatment.

then what?
how does this all
get wrapped up?

many comment on how exciting it must be,
a great christmas present.
i feel uncomfortable
contradicting that sentiment,
as if i am somehow
wallowing in my own hard times.
but it does not feel like a gift,
it makes me cry every time i think about it.

i am trying to find words to explain it.
those words are fleeting,
mostly just feelings that i grasp for a moment.


this has been our life
for the last 6 months
(as someone pointed out,
one-eighth of chloe's very existence).


while i certainly do not want it to continue,
it is a bit scary,
thinking of what we will do
when it is over.

how will we define our new schedule?
what will i do on my days off?
what did i used to do for fun?
do i remember how to cook?

but even more daunting,
who will watch over my kid?
who will make all the decisions
and make sure she is really okay?

i know that
it is not up to me.
i know that
God is greater than
all of this.
i need to trust
and believe.


yet it is still
a major shift
to consider
moving out of
the protective circle
the very tight structure
created for us by
the doctors and nurses.

i got the answer to my question,
2 more treatments left.
the end that we thought
would come at christmas
is closer to february.

what a disappointment,
and what ambivalence.
i struggle with the end
yet i do want it to come.

for unknown reasons,
this has been
the hardest time
for kip and for me.

we are tired,
weary and stressed.
we see how
the illness and the treatment
affect chloe
every day.

chloe has lost most of her hair now.
she is experiencing neuropathy
(the nerves in her extremities
are slowed by the chemo).
she walks a bit more slowly,
her steps are heavier
and she trips more.

with 3 weeks
between treatments,
we see her start to
get some energy back.
it feels cruel
to allow another
round of chemo.

monday's particular cocktail
was hard on chloe.
she felt sick and very tired.
on wednesday 
she napped for 3 hours
and asked to go to bed
after being up for a short time.

we know february
will come.
we are thankful that
the side effects
are temporary.
we're just not quite there.

Thursday, November 10, 2011

The Reality

It's been a few weeks since we've posted here about Chloe's health. Partly it's been due to a lack of time, partly a lack of words.  Most of our updates have come in the form of short updates on Facebook (CHA & KHA, in case we're not "friends" :>) ).

Basically, we've been doing a good job of distracting ourselves from the reality. Since we last posted:
  • Chloe got a pair of guinea pigs, Pokey & Pumpernickel
  • Henri was star of the week and had fun sharing his interests 
  • Martha has been rehearsing for last weekend's Come On Over! Live Show as well as a role as a munchkin in Holland High School's Wizard of Oz production.
  • We participated in Sibs Night at the Clinic where Martha & Henri had a chance to see what Chloe does when she goes to clinic
  • Everyone enjoyed trick or treating
Christa and I do a good job of showing up to work or church and putting on a good face, talking about these distractions, but the reality is that we're exhausted: physically, emotionally, and spiritually.

Although Chloe's chemo appointments have moved to every three weeks, we've continued to find ourselves in Grand Rapids to check counts or other tests each week.  While Christa's work schedule finds her teaching two or three days a week, we're still finding it quite a challenge to fit these appointments into our family's schedule.

Plus our family has been plagued with multiple trips to the ER, Prime Care, or family pediatrician since Chloe's weekend stay at DeVos the first weekend in October.  Following doctor's orders, our family has been getting flu shots for the first time.  My shot landed me in the ER with an allergic reaction one Friday night.  Henri was diagnosed with mono on the 30th of October.  Martha went in to the doctor earlier in the week after two days of a fever (mono and strep tests were negative, thankfully!).  We were on the phone tonight with the on-call oncologist as Chloe has complained of a headache, stomach ache, and has been running a low fever today.  They aren't concerned as the fever is low, but it is one more thing for us to try to figure out.  Not to mention that Christa has had parent-teacher conferences three days this week and I'm feeling pretty stressed trying to get ready for mine in a week and a half.  I have so much on my plate that I can't even figure out what is a priority and what can be put off.

As Christa has said, "when do we get to say ENOUGH!"

Despite all of this craziness, we continue to be blessed with support from near and far: meals, house cleaning, cards, emails.  I think my parents have helped out with the kids every day during the past week as Henri has missed seven days out of the past two weeks and Chloe has been home from preschool or daycare many of those days due to a cold.  Christa's mom came over during the week to pick up the house to get it ready for cleaning. 

So, that's our reality.  Thanks for reading.

Sunday, November 06, 2011

COO! and Jars of Clay

I remember back fifteen years ago... Christa and I were living in our first apartment on Rockwell Avenue in Chicago.  My brother, Jed, had taken the train over from North Park to join us for dinner and brought along a CD by a band he had recently discovered, Jars of Clay.  That music on that CD quickly became some of my favorite.  Yesterday, Martha had the members of the band autograph that same CD after the Come On Over! Live Show.  Isn't it amazing how life works!

Martha did a great job in her role in the show and we all had a great time enjoying the COO! live show and getting to hear a few songs by Jars of Clay.  It was quite the exciting morning for all of us!

Jars of Clay, Joel, and the H-As

Martha especially had a great time rocking out with Jars of Clay on her triangle...

Saturday, October 22, 2011

Come On Over!

[We interrupt our usual topic of conversation to bring you this news about another member of our family who is pursuing her passion for acting.]

Last spring, Martha had the opportunity to audition for a role in the locally-produced show, Come On Over!  She got the part and was able to spend the better part of a week (and missed school!) filming shorts for the show called "Ceci Wonders" playing the part of Ceci and Josh's daughter, Martha.  Two of the six DVDs, Groovy! and Blast Off! are hot of the presses, with the others to follow in the coming months.  It's my understanding that there is at least one short containing Martha in each of the DVDs, as I believe she shot a total of ten (the events of the summer have messed with my memory capabilities).

COO! is the product of the imagination and talent of our friend, neighbor, and follow Third Church member, Joel Schoon-Tanis.  Please join us in supporting COO! by buying a DVD or two (or four or six!) and downloading a few songs from iTunes.  COO! is geared towards 3-8 year olds, but all ages would love it!

Here's one of the "Ceci Wonders" shorts containing Martha called "Good Enough."



How cool was that!  Obviously we're super-proud of her and the work that she is doing!  (We're super-proud of Joel and rest of the cast and crew, too!)  You can see more videos (be sure to check out God is Green) at the Come On Over! Facebook page.

Come On Over! Live Show

If you happen to live in West Michigan, you're not going to want to miss the COO! Live Show with musical guest Jars of Clay on November 5th @ 10am.  Martha will be on stage with the cast in some small capacity and will even be jammin' with the band on I Love My Triangle playing, yes, the triangle.  We hope to see you there!

Monday, October 10, 2011

first set of scans

waiting for the ultrasound
big day at DeVos.
chloe had her
first set of scans.
chest x-ray,
ultrasound.

i held my breath,
what could they be
looking for?

when they took out
her kidney,
supposedly they got
everything.


even though
the situation
is not ideal,
a cake to share at the clinic
it certainly has not been
the toughest road
in terms of cancer.

so, i was waiting for
the other shoe
to drop.

everything
came back
clear.

we are on track.
we are looking toward
the little patient
the finish line.

chloe goes in
to check her counts
next week.
her next
chemo appointment
is on halloween.

we're hoping to
be done
by christmas.

then we're
going to have
one big party.

Sunday, October 09, 2011

tipping point

early in september
i visited my new favorite bakery
the person who worked there
was so nice and friendly.

"what are you going to do today?"
he asked, casually..
i explained that our daughter was
at DeVos getting treatments
for cancer.
his face fell,
"i will certainly
say a prayer for her."

"thank you,
it really isn't as awful as
one would imagine.
it is actually
going to be okay."
i said as i left the bakery.

i walked back towards
the hospital,
buoyed by
cheerful interactions,
a newfound bakery
and anticipation
of the yummy treats
in my bag.

i reflected that life is
fragile, yet beautiful.
i gave thanks
to God
for allowing me
to be a part of it all.

it is funny how
perspective can change.
this past week
someone asked how it was going.

"it's hard."
i said.

we all have our
tipping points.
whether we are
experiencing something
life shattering
or just a hard day,
we never really know
what will push us
past the tipping point.

it could be anything,
a few sleepless nights,
deadlines at work,
a weird interaction,
bad news...

i think for me,
the hospital stay
was a tipping point.
it moved me from
"it's really okay."
to
"it's really hard."

from prior experience
i know that
life will get better.
it always does.

but i have a choice
of what to do
until it does
get better.

i can look
at chloe
and see
the dark circles under her eyes,
the wisps of hair on her head,
the crabbiness that comes
with fighting against this illness.

i can look
at chloe
and see
cancer.

or,
i can look
at chloe
and see
a resilient spirit,
a little fighter,
a survivor.

i can look
at chloe
and see
a gift
from God.

Monday, October 03, 2011

The 3 Minute Update

Chloe and Christa arrived home about noon.

Martha has a minor sinus infection. Now on antibiotics. Also got a flu shot, something that we'll all be getting, but never have before...

Chloe is loving being home and disconnected from her IV. She has been playing hard since getting home (and is still going strong as I write this "reading" books in her bed).

Christa and I would love to have a little of her energy. We're exhausted. Christa is on track to have a nervous breakdown by Wednesday. Maybe sooner...

And it's only Monday...

Sunday, October 02, 2011

The scoop

As the weekend winds down, this is where we're at:

Chloe is still at DeVos. They want to keep her there until her counts go up and they have time to culture blood samples taken from her port and arm to determine if there is any major infection that needs to be dealt with. On the whole, she is in good spirits and isn't really acting sick. In fact, she truly has begun to see this a sleepover and wants to spend a few more days. She has received an antibiotic through her port every six hours for the first 24 hours. This afternoon she had a shot of a medication that will hopefully bring her counts up. Hopefully she'll be able to come home tomorrow, but only time will tell. Christa is staying there with her tonight.

I'm at home with Martha and Henri. Martha has a cold or allergies (???) and is feeling pretty lousy so she had to wear a mask when she stopped by the hospital to visit Chloe this afternoon. I requested a sub for tomorrow so that I can get Martha to the doctor to get her checked out and see if there is anything we can do so that we don't have to quarantine her when Chloe gets to come home.

A few prayer requests:
- Healing for Chloe and Martha
- Strength and peace for all of us
- A good night's sleep for Christa and I. I think we both forgot how intermittent sleep is in the hospital with nurses and techs coming into to check vitals regularly and little alarms going off when Chloe would roll over and pull off the monitors.
- Keeping this all in perspective. It really could be so much worse.
- The ability for me to let go and say "not in this season of life" as there are things I want to do, but can't find time/energy to do them, and Christa has to remind me "you have a daughter with cancer, that's enough to take care of right now."

Thanks, everyone, for your continued prayers and presence in our family's life. Good night.

Saturday, October 01, 2011

inconvenient yet not alarming

chloe has been
a little
under the weather
this week.

nothing frightening,
just a runny nose,
maybe a bit of a cough.
nights have been restless.

this morning she woke up
coughing and hot.
again, nothing alarming.

kip took her temp,
it was 101.5 degrees.
routine, yet not for
someone with a port.

just as a precaution,
to be sure that infection
does not enter
the central line,
we have been instructed
to call DeVos
when she has a fever
over 101.1.

we followed instructions
and were sent to
DeVos Peds ER.

inconvenient, but
since we were prepared,
not alarming.

martha and henri
were disappointed.
chloe was not happy.

we met my parents at the hospital
they will treat
martha and henri
to a day at artprize

at the ER
they took some blood
did a chest xray
and let chloe teach them
her favorite game.

they decided that the ratio
between her white blood cells
and absolute neutrophil count
was not where they wanted.

chloe was admitted.
she is receiving some
heavy duty antibiotics
and watching tv.

we do not feel anxious
we know that this is
pretty routine
for a cancer patient.

we have enjoyed
a great lunch from the
and some other treats
from my new favorite bakery,

our dog, tobi,
is being picked up
by our friends lisa and mia.

the view from our window
of the fall colors
is beautiful.

i'd like to be
out there,
i'd like to be
doing something
productive,
maybe even
something fun.

but for now
i'll snuggle up
next to chloe,
and take solace in the fact that
this visit is so very different
from the last time
chloe was admitted.

inconvenient,
yet not alarming.

Wednesday, September 28, 2011

a prayer for chloe

one of our dear friends from college,
a prayer.

becky and our friends from minneapolis
have supported us
from afar
in a weekly prayer group
in little hellos
and daily prayers.

please check out becky's poem
yet another celebration
of the Body of Christ
which surrounds
and enfolds us
in this journey.

Tuesday, September 27, 2011

tangible reminder


He drew me up from a desolate pit,
out of the miry bog,
and set my feet upon a rock,
making my steps secure. Psalm 40:2

some neighbors and church friends
made some rocks for people
to take as a tangible reminder
to pray for chloe.

feel free to stop by our back porch,
take a rock,
and whenever the rock catches
your eye,
take a moment
to lift up chloe
in your heart
and in prayer.

Monday, September 26, 2011

Preschool Days

Chloe has 2 weeks at First Presbyterian Preschool under her belt. Today she had to go into the clinic at DeVos Children's Hospital, so she had to miss a day of preschool. Fortunately, thanks to a program called Monkey in My Chair , whose mission is to help pediatric cancer patients stay connected to their classmates, Chloe has a child-sized monkey who sits in a chair at preschool when Chloe is out due to a cancer related absence. Chloe has her own little monkey who goes with her to the hospital.


Before school started, Chloe and I took the monkey to school.




Here is the monkey with Chloe's teacher, Miss Megan. The monkey also sat at the snack table.


In addition to the monkey, another way for the Chloe's classmates to connect with her is through hats. Kendra, a fellow preschool mom, came up with the idea for all of the children to make hats. She found the hats and fabric paint and came in one morning to assist with the project. The hats are so cute. Now Chloe won't be the only one in her class with a hat.
We are so thankful for our friends and teachers at preschool!

Sunday, September 18, 2011

back to school

life is intense right now
two kids going back to school
two teachers going back to school
one kid going back to preschool.

and then there is cancer.

cancer means
weekly trips to grand rapids
vigilance
daily medications
worry.

with the return to school
it also means
entrusting chloe to someone else,
foisting the vigilance and worry
on other people.

i am thankful for our parents
for miss megan, chloe's teacher.
it is not easy to be the decision maker.
is she okay?
how is her energy level?
should i take her temperature?
where is her hat?
did she use sanitizer?

i am happy to be back at school part-time.
i have a great teaching partner
supportive colleagues
an amazing class.
it is a challenge that makes my brain work hard.

i know that it is good,
yet sometimes i struggle.
between the worry and vigilance,
the trips to grand rapids,
the papers to grade,
lessons to plan,
the astounding amount
of student information
to organize and record,
loving and attending to
my own children,

there really isn't much time left
to attend to myself
or my relationship with kip.

there is little enough time
amidst the worry and vigilance
to communicate the most essential details.

when and how do we
communicate our feelings,
our love for each other?

we just forge ahead.
we try hard to take a moment
to create a moment
to share our successes,
our failures,
our tears
and anger.

and pray for god's guidance to push us through.

Tuesday, September 13, 2011

Chloe's Day at the Clinic - The Movie

Many people have asked us what it is like for Chloe to go to the clinic at the DeVos Children's Hospital to get her chemotherapy treatments.  We've talked about putting together a movie for a while, but now have finally done it.

Here's a 4 minutes and 45 seconds glimpse into our eight hour day yesterday.

Saturday, August 27, 2011

for that i am thankful

[Christa wrote this post back on 8/27. I was supposed to add a few photos and then post it for her. Where has the time gone? - k]

the last time i posted
it truly was a tough day.

since the blood transfusion
chloe's spirit has steadily lifted.
for that i am thankful.

i have wanted to update the blog
several times
yet, couldn't find the time.
we were having too much fun
for that i am thankful.

it seems like a perfect metaphor
of our relationship with God.
on the tough days
we spend time in prayer,
trying to draw near to God.

yet when life is going well,
we sometimes forget
to draw near to God.
fortunately our God
is always near,
no matter how distant we are.
for that i am thankful.

the thursday after chloe's blood transfusion
we were invited to a friend's
3 year old birthday party.
i was nervous.
would it be okay for her to be around
a big group of people?
since it was in the evening,
would she have the energy
to enjoy the festivities?

we all had a blast.
eating ice cream sundaes,
catching up with friends,
playing with a new puppy...
we were having so much fun
all of a sudden i realized that
i hadn't even seen chloe
for a few minutes.
it was like normal.
for that i am thankful.

an excerpt of a conversation at the party
between chloe and our friend scott:

scott smiled at chloe and said,
"chloe, i like your hat."
chloe had chosen her hat very carefully before the party.
a gift from a colleague of kip's,
a hand-knit white hat
with multiple ribbons and flowers
to take on and off.
she wore it with lavender ribbons
and crocheted lavender flowers,
quite a fashion statement.
chloe smiled and whipped off her hat.
"my hair is falling out," she said.
scott's eyes did not widen,
he did not freeze,
he merely smiled back at chloe,
lifted his hands and said,
"that happens, doesn't it?"
for that i am thankful.

the following sunday after church
after a long week
we headed to our friend's beach.
the waves were wild.
we played in the sand
with chloe
and took turns
riding in the waves
with martha and henri.
the waves were
big and powerful
we jumped and hollered
with wild abandon.
it felt like the powerful waves
could wash away
any sadness, anger, grief.
for that i am thankful.

this week we visited a friend's farm.
we played with goats
chased chickens
groomed and rode horses.
we all fell in love with the animals.
we didn't want to leave.
for that i am thankful.

summer is winding down
routines are changing.
i see people we haven't seen all summer.
they ask,
"how was your summer?"
i don't really know how to answer.
chloe's cancer changed our summer.
we missed vacations.
our days have been anxious.

and yet,
we have been surrounded by
love,
prayers,
gifts,
meals,
offers of help
that are too numerous to mention.
for that i am thankful.

Wednesday, August 24, 2011

A quick update

Just a quick update...  Nothing earth-shattering, no strong emotions (for me, at the present moment)...

The first day of school is approaching.  Christa has been in technology trainings for the past three days.  I've been in my classroom a fair bit.  That adds an extra layer to our already layered life.

Chloe has been doing better with her meds.  I have become the medicine giver and she and I have developed routines around the meds: choose the prize that she'll open when she finishes the meds, take three deep breaths before a squirt of meds, the meds in 1 mL increments followed by a large drink of water.  Some times the three breaths have to be repeated two or three times (or more)...  There is still crying at times, sometimes covering her mouth, but no screaming (thankfully).  Thanks to all of those who have contributed to her med prize stash--it helps.  We also have a wall of butterflies covering our kitchen wall and she adds one with each completed medicine.

We were in the clinic again on Monday.  Chloe's ANC was too low so she couldn't get her next dose of chemo.  We consider it a blessing as it gives her body an extra week to rest.  Adding a week to treatment doesn't seem like a big deal.  Plus we haven't mapped out exactly when treatment should end.  I think that's for the best as then we won't be disappointed if treatment goes longer than planned.

Christa's been composing a post in her head for the past few days, so I'll close and let her fill in some of the other details when she has a chance.

[Christa commented that the photo makes Chloe look like she has a lot of hair.  In actuality, I'd guess she's lost about three-quarters of it.  I'm glad she made the decision to not shave it during those days when it was falling out in large chunks.  When she's wearing a hat or scarf most people can't tell and she never mentions the fact that she may lose it all anymore...]

Tuesday, August 16, 2011

a tough day

i am struggling to post today.
i want to communicate to everyone that
everything will be okay.
we do have good days,
maybe we just don't write about them.

yet,
if i don't share today,
i will not allow the flood of
prayers and support
that have been so freely given.

yesterday was awful.
early in the morning
i ran to the store to purchase
more medicine prizes
(a suggestion from the oncology nurses).

i came home with minutes to spare
before heading into devos.
kip was sitting with chloe in his lap.
both were in quite a state.
they had spent that last half hour
battling over medicine.

little chloe needs some control in her life.
just about the only control available
is the ability to take or refuse
her daily meds.

we are trying to give her more control,
choosing what she wants to eat,
what to wear,
what to play...

yet, it is to no avail.
she cries,
screams,
thrashes,
gags
and sometimes throws up her medicine.

it is stressful.
it is awful.
it is no fun.

and that was all before 9am on a monday.

we headed into GR
having forgotten to put on the numbing cream
that makes port access (a poke)
go more smoothly.

we went to the infusion space.
designed to be a nice place for kids,
but totally overwhelming.

each patient gets a little space in a big room.
the space comes with 2 chairs,
a tv
and medical paraphernalia.

if you can imagine
the noise,
the claustrophobia,
the overstimulation.

we listened to the sounds of
several tvs,
parents talking with social workers,
nurses talking,
cell phones ringing.

if that wasn't enough already,
we had to give chloe tylenol.
her temperature was a bit high.
blood transfusions can cause a fever.
a high enough fever would mean
going inpatient.

we battled kicking and screaming
(i know, those who know chloe cannot picture it),
and a whole host of
undesirable behaviors.

with an audience.

we had to do it again later
to give her another daily medication.

the kind nurses and play therapist
assured us that it is normal,
that it would get better.
it was all i could do not to
burst into tears.

after 7 hours in the clinic
we headed home.

we did return to a wonderful dinner.
a good friend dropped it off the night before
and our neighbor had it warming in the oven for us.

there was a package from minnesota waiting.
wonderful, creative, entertaining activities
for all three kids.
they just sat together
in a pile of wrapping paper
and colored and created.
giving kip and i a minute
to just breathe.

i still cried all through dinner.
i explained to martha and henri
that there was no bad news,
nothing had happened.
it was just a tough day
and i needed to release
all those feelings.

i wish i could say that
meds this morning
went without a hitch.
but that wasn't the case.

please pray for chloe,
that she can relax and
take the meds
that will keep her healthy.
that she gets the
needed boost
from the transfusion.

please pray for kip and i
that we can stay strong,
be kind
and patient.

please pray for martha and henri
that they get the attention they need,
that they feel loved and supported.

today is a new day.
the kids are playing with our neighbors
and the world's best babysitter.
kip is getting away with his brother.
i am getting some time to myself.
dinner is being delivered.

there are always bright spots.
sometimes we just have to look for them.





Thursday, August 11, 2011

We can get away... Yet, we can't...

Chloe's oncologist gave us the okay to come up to Christa's parents' cabin for the week to get away.  It has been an opportunity to be away from the phone calls (well, landline), responsibilities (to some extent), and the general busy-ness of the comings and goings of life at home.  It has also given us a chance to spend some good family time together -- a trip to the beach, kickball in the backyard, s'mores by the campfire.

Yet, we can't get away from the cancer.

We arrived up here on Sunday evening and by Monday morning Chloe was showing signs of having a cold.  While we have the knowledge that Chloe is on an antibiotic and will remain on it for the duration of chemotherapy, her first illness since the diagnosis proved to be anxiety producing.  Lots of questions developed -- when do we call the clinic to let them know Chloe is sick?  Will they still be able to do chemotherapy if she has a cold?  This was supposed to be an escape...

On Tuesday Christa and I were able to go out for lunch in Ludington while Christa's mom hung out with the kids.  It was wonderful to have time to talk about life outside of the details of appointments as treatments are only once a week now.  However, within three hours of leaving the cabin we got a call that Chloe had a fever of 100.6.  We spent the 40 minute return trip planning what we would do should we have to take Chloe to the ER.  Thankfully, her fever had gone down on its own by the time we returned home.

Yesterday Chloe, Christa and I left the cabin at 9:30 am for the two hour trip into Grand Rapids for Chloe's weekly chemotherapy appointment.  The anticipation of these appointments has begun to wear on Chloe.  She was quite quiet, complained of a stomach ache most of the way to GR, wouldn't snack or drink, and was quite "clingy"before the appointment.  Once we got settled in the clinic, she became more talkative with the doctors, nurses, and the social worker who came in to see us.  After the appointment, you could tell she felt that the burden had been lifted.   She was ready to eat, run, and be herself...  Unfortunately we still had the two hour return trip and finally arrived at the cabin at 5:30 after the repeated refrain of "when will we get there?" had really begun to wear on Christa and I.

The difficult news from her appointment yesterday was that her hemoglobin levels are quite low and she'll need a blood transfusion on Monday when she returns for her next chemotherapy treatment.  The oncologist who was assigned to clinic told us the news like it was an everyday thing.  Will terms like cancer, chemotherapy, blood transfusion ever become "everyday" for us?

Sometimes this is all still a little difficult to believe.  Last night as we played a family game of Ticket to Ride, I looked over at Chloe sitting on Christa's lap.  The words "blood transfusion" echoed in my head, maybe still trying to find a place to root, to make meaning.  Can I truly understand what is going on inside that little body?  Maybe it's one of those mysteries of life that I'm not supposed to understand.  Maybe it is another one of those instances where I just need to trust and find grace...

__________________

A quick prayer request...  Chloe has two medications that she needs to take each week, one each morning and the other twice a day Monday-Wednesday.  These have become a point of intense stress and anxiety for all parties involved, to the point where taking 1.5 mL this morning led to her throwing up her breakfast.  TMI, I know, but it gives you an idea of what we're dealing with...

Friday, August 05, 2011

good things

kip and i seem to post
in the midst of the struggles.

we reflect more in the struggles
trying to find peace,
calm,
reassurance.

we reach out
in the knowledge
that prayers will follow.

it makes me wonder if our community
is missing out on the
good things.

this journey and especially this week
have been difficult.
but there have been
some good things.

chloe's prognosis is
very good.
we will most likely
worry just as much about her
learning to drive someday.
chloe's weight is stable.
she is not yet experiencing the
expected side effects of the chemo.
radiation is done.
4 chemo treatments are out of the way.
6 more weekly treatments and then
the treatments are every other week
for 14 more weeks.
i just opened the bill from redmon heating and cooling
paid in FULL.
chloe gets to go to preschool in the fall.
we have been spoiled with
excellent meals,
special treats,
gifts in the mail and on our doorstep
and constant prayer.
our employers, principals and colleagues
have been incredibly supportive.
my teaching partner has offered
to be my substitute
when needed.
we have open invitations to swim
in several pools and a quiet beach.
we get to go on a
much needed vacation
to my parents' cabin.
we've had more intentional
family time.

today henri and i were up early.
instead of getting distracted by chores,
we biked to the coffee shop
and enjoyed good coffee (a steam engine for henri) and a bagel.
we biked to windows on the waterfront.
we enjoyed sailing down hills,
cooled by the early morning breeze.

i have learned
to savor those moments,
the good things
in the midst of cancer.

Thursday, August 04, 2011

a new rhythm

our posts are fewer
and further in between.

the rhythm of life has changed,
slowed down.

it has surprised both
kip and i
that we are
struggling the most
this week.

little irritations,
irrational fears,
unexpected tears
burst forth
at the most inopportune moments.

as a wise friend pointed out,
there is nothing to do.
no action to take.

life is back to normal,
but not really.
we make sure chloe takes her medications.
we try to ignore the piles of blond hair,
little tumbleweeds of hair,
collecting on the floor,
the stairs,
sticking to my skin.

i realized that
in the adrenaline rush of
the hospital stay,
daily trips into grand rapids,
we left the praying
to everyone else.

we have felt so surrounded by
prayers and love.
now it is time for us to
come to God.
to listen,
to ask,
to wait,
to rest.

Sunday, July 31, 2011

Big stuff

Well, it's been an emotional week here in Holland, Michigan.

Unfortunately that statement isn't as comforting as Garrison's weekly opening to the News from Lake Woebegon. Mary's passing last Monday added a new layer to the complexity that our family is processing, experiencing, grasping to understand...

While washing the lunch dishes today, Martha noticed a number of Chloe's hairs in the breakfast booth and expressed her fear about it. I asked what she was afraid of, to which she replied "Chloe not being the same person without hair." I started talking about us being spiritual beings living in human bodies, that Chloe is still the same person even if she has one less kidney or is missing her trademark blonde curls. Without thinking, I found myself continuing by drawing a parallel to the kids seeing Mary's body at the visitation on Friday and how while Mary's body is still here on Earth, her spirit is with God. Martha said she understood, but I wonder... Maybe I should have just listened and not tried to explain...

Chloe is wrestling with trying to understand it all as well. As Christa mentioned last Thursday, Chloe wanted to ask her oncologist about Mary and how her cancer was different. On Friday Chloe wanted to know when Miss Mary was coming back. This weekend she moved from asking questions about losing her hair to telling everyone she sees "I'm going to lose my hair, but I have a ponytail hat!" Today, while biking home from downtown as we rode past church she asked, "where do people go when they die?" followed by, "where is heaven?" and "what does it look like?"

Our kids are dealing with some pretty big stuff.

Chloe finished up her six radiation treatments last Thursday so we don't have to return to the clinic at DeVos until Thursday of this week. She has seven more weekly chemo treatments and then the treatments will begin to space out a bit continuing for about another 14 weeks after that.

She continues to respond pretty well to her chemo treatments. She still seems to wear out more quickly, but she was found running through the basement hallways of church this morning and she rode on the tag-a-long behind my bike for a trip downtown.

Thursday, July 28, 2011

roller coaster

our friend steve deyoung used a roller coaster as a metaphor for cancer.
it describes the range of emotions perfectly.

it is so confusing, there are all these top-of-the-hill moments,
where you are at the top of the biggest hill,
surveying all that is beautiful around you.

so many heartfelt prayers,
offers of help,
tangible tokens of love and concern,
chloe's crew.
it all just keeps rolling in
day by day,
sometimes hour by hour.
chloe's great response to the treatments,
the beginning of a "routine."

you can't stay at the top of the hill forever
if you want to finish the ride
you have to go down.

yesterday i saw several long, golden hairs on the back of chloe's shirt.
i felt like i was whooshing down the hill.

today we had our last day of radiation.
they made it like a big party.
they showered chloe with presents.
while waiting for chloe,
i received the great news about chloe's crew
surpassing their goal in 5 days.
back up the hill

chloe's oncologist talked very directly with her about hair loss.
she answered chloe's questions about mary.
she shared some positive test results.
up and down, up and down.

in the car chloe wanted to call my sister-in-law, tracey.
she wanted to tell her that she was free.
free of the tube that has been in her port all week.
free to swim this week.
then she told tracey,
"eventually my hair is going to fall out,
but i get a pony tail hat!"
sometimes i can't tell anymore if i am
climbing up
or plummeting down.

thanks for coming along with me for the ride.

Wednesday, July 27, 2011

Remembering Mary

A short clip of Chloe and Mary that Steve posted earlier in the spring...

Monday, July 25, 2011

Joy & Sorrow

Our day began early and busy as we prepared the house for the heating/cooling guys that would be arriving early to install our new furnace and air conditioner.  We also had to be out the door by 7:45 to get Chloe to her next radiation treatment.  The morning in GR went really well.  Folks there have heard our concerns and are doing a great job with Chloe.  Her port had to be accessed again this morning and will remain accessed (with a "tubey") until Thursday afternoon.  No swimming until the weekend.  :>(

When we returned home the furnace and air conditioning work was well underway and finished up by mid-afternoon.  Last Thursday as we arranged for installation by phone (while waiting during Chloe's appt), they had told us that payment would be due in full when work was completed.  As Christa asked the guys about payment, she was told "Don't worry about that right now, it's being taken care of.  You have quite a unique situation and need to focus on taking care of your daughter."  Thank you, Chloe's Crew!  Amazing, humbling, but we're so grateful to be so well cared for....

Yet, the joy of having air conditioning was overshadowed by the news that our friend Mary had passed away this afternoon.  To us, Mary was a friend, "Aunt Mary" to the kids, a fellow attendee of the Spiritual Formation Sunday school class, and a passionate educator with whom we "talked shop."  We first learned of Mary's cancer diagnosis while staying at the hospital following Chloe's surgery.  At the time, we thought Mary and Chloe would be able to journey through chemotherapy treatments, and possibly hair loss, together.  God had other plans.  As Christa posted on Mary's FB wall tonight,

thank you, mary, for touching our lives. martha prayed tonight that you are celebrating in heaven. let the party begin.