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.