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.

Sunday, July 24, 2011

Prayer

People continue to ask us what we need.  I think most of all we need your prayers.  Tonight Christa and I were able to gather with our Spiritual Formation Sunday School class from Third Reformed to share the events of the past month.  It was a good time to get together with people we have shared a lot with over the past year and offer a number of concerns in prayer. 

At the same time we were meeting, a group organized by some of our close friends was meeting at Bethlehem Covenant Church in Minneapolis (my home church during my youth) to pray for Chloe. 

We've always been very self-sufficient and uncomfortable asking for help.  Beginning with that first phone call from Chloe's pediatrician back on July 7th it was clear that we could not do this on our own.  We've asked for prayer and have received things that we didn't even know we needed, but they've come just as we've needed them.

The act of receiving is difficult.  It is so much easier to give.  Yet the gifts that we have been receiving have allowed us to focus on the things that matter.  We aren't worrying about meals or finances.  Instead we can be present to our kids and give them all we can offer at that moment.  The gifts remind us that we are surrounded by a community of faith that walks along with us during this most difficult of journeys. We continue to be humbled and grateful to folks who are going above and beyond, in ways that we never expected, like Chloe's Crew

What can we offer but a humble thank you!  Thank you for anticipating our needs before we recognized them ourselves.

Many of you have asked for specific things that you can pray for...
  • strength and energy for this journey
  • that Chloe's body continues to respond well to radiation and chemotherapy treatments and that side effects are minimal
  • acceptance of the schedule we can't control
  • one-on-one time with each of the kids, the right words to offer, the right questions to ask
  • our marriage, as right now I feel like we're managers of a crazy life rather than partners in a wonderful life
  • hope, focus and energy for some dear friends who are also battling cancer
  • peace, direction and answers for a special pair of recent seminary graduates who await both a call to ministry and the birth of their first child

Saturday, July 23, 2011

gracias

chloe's treatment on friday was much better.
since we didn't have to go to clinic after radiation,
she was able to enjoy a cinnamon roll at the wealthy street bakery.

she was tired in the afternoon and spiked a fever.
we are not sure if it was from the heat,
but she improved after going upstairs in our air-conditioned bedroom.

it was a rough night,
she was restless and kip and i were anxious.
a fever of 101.1 means a trip to the ER.

today was much better,
she wasn't quite herself, but her temperature was normal.

we even got to go swimming at a dear friend's pool.
she swam with us and we just enjoyed playing together.
chloe followed that up with a huge nap and a good dinner.

we continue to be amazed by the outpouring of love from so many,
we have received cards, gifts, treats, meals, financial support, e-mails and prayers.
we are speechless,
humbled,
we don't know what to do.
other than to say thank you.

we know that there are so many out there
with greater needs than ours.
we receive your grace
and learn from your example.

we now know what it is to receive
and long for the opportunity to give
to others who have need.

it reminds me of a quote from a book i read
when kip and i visited mexico.

“And slowly I learned. I learned what I must have forgotten somewhere in my busy, well-planned, and very “useful” life. I learned that everything that is, is freely given by the God of love. All is grace. Light and water, shelter and food, work and free time, children, parents, and grandparents, birth and death – it is all given to us. Why? So that we can say gracias, thanks: thanks to God, thanks to each other, thanks to all and everyone.”

- Henri Nouwen, Gracias

Thursday, July 21, 2011

Rough start

Upon returning home after seven hours in GR, I stood in the kitchen and was so relieved to be home that the tears just started to flow.

Everyone in the family was dreading this day.  Last night we all started acting out in our own ways--impatience, bickering, frustration, etc.  In the moment I can recognize why we are acting the way we are, but I don't have the reserves to be patient with it.  That in itself is frustrating.

Without going into too many details that don't need to be shared in this public space, we had a rough experience with Chloe's first radiation treatment this morning.  Put simply, Christa, Chloe and I were all very anxious going in to the morning and we felt very little was done to make us as parents of a young child reassured that things would be okay.  When Chloe was sedated and in treatment, we spoke to a nurse and (politely) exploded with our frustrations.  After speaking with a manager by phone this afternoon, we have been assured that our concerns will have been taken care of in time for Chloe's next treatment tomorrow morning.  Yet the act of having to vocalize our concerns zapped what little energy we had to begin with.

After Chloe woke up from her short "sleep" for her radiation treatment, we were brought over to the clinic at DeVos.  It was nice to be in familiar surroundings again, even if the routines and people in the clinic were new to us.  Evidently word had traveled fast that we had some issues in the morning as Chloe's assigned nurse in clinic told us that we would have time to talk about our concerns and make sure that our needs were being met.

The afternoon in clinic went well.  Chloe had her blood drawn to check her "counts" (which still look great at this point), we talked about how she is feeling (great) and any side effects (practically none), and then she had her second chemo treatment which in the form of a "push" from a syringe into her port that takes about a minute.  We also had a chance to talk with the hospital social worker for a while and air our concerns and discuss a few questions that had arisen over the last week.  Basically, there was a lot of waiting.  We tried to keep Chloe busy -- eating the box lunch the hospital provides for the kids in clinic, playing games on the iPad, coloring, etc., but she was very ready to head home by the time we were allowed to go.

Yet, through all of this tough stuff we are still feeling so much love and support surrounding us.  We returned home to find our driveway and sidewalks decorated with messages of encouragement and love, the back porch containing packages of muffins, sweet bread, brownies, and a hand knit hat, and our mailbox filled with gift certificates for massages, a check to take the family out, and bunch of cards from near and far.  Plus, our dads had worked together to install a keyless entry on our garage so the kids can get in and out as needed.  And a meal to nourish body and soul was delivered by some dear friends. 

Thank you doesn't seem to be enough, but still I'll say it, thank you!

Learning How to Float

In the past, I have journaled quite a bit.  Nothing profound, just thoughts, feelings, prayers, occasionally to-do lists, working through decisions and the like.  There have been times when I just couldn't find the words, so I'd borrow them from someone else.

A few years ago, while browsing my favorite independent bookstore, The Cottage Book Shop, in Glen Arbor, I came across The Book of Awakening.  I'm guessing the idea of being present is what drew me to it.  It contains a short reading for each day of the year, and I've picked it up from time to time but it hadn't become a favorite.  Yet, it caught my eye the other day as I remembered that a lot of what it contains is a result of the author's journey through cancer.

His words spoke to me last night, so today I'll borrow his words as I can't seem to find my own...
Learning How to Float
When we stop struggling, we float.
When first learning how to swim, I didn't trust the deep.  No matter how many assuring voices I heard from shore, I strained and flapped to keep my chin above the surface.  It exhausted me, and only when exhausted did I relax enough to immerse myself to the point that I could feel the cradle of the deep keep me afloat.
I've come to understand that this is the struggle we all replay between doubt and faith.  When thrust into any situation over our head, our reflex is to fight with all our might the terrible feeling that we are sinking.  Yet the more we resist, the more we feel our own weight and wear ourselves out.
At times like this, I remember learning to float.  Mysteriously, it required letting almost all of me rest below the surface before the deep would hold me up.  It seems to me, almost forty years later, that the practice of finding our faith is very much like that--we need to rest enough of ourselves below the surface of things until we find ourselves upheld.
This is very hard to do.  But the essence of trust is believing you will be held up if you let go.  And though we can practice relaxing our fear and meeting the deep, there is no real way to prepare for letting go other than to just let go.
Once immersed, once below the surface, it is not by chance that things slow down, go clear, feel weightless.  Perhaps faith is nothing more than taking the risk to rest below the surface.
That we can't stay there only affirms that we must choose the deep again and again in order to live fully. That we must move through the sense of sinking before being upheld is what trusting [God] is all about.
Today my prayer is that I can let go and not fight the circumstances, the feelings, the schedule I do not wish to have and trust that God will hold me up.

heaviness

two nights ago
i crawled in bed next to chloe.

she asked,
"where am i going tomorrow?"

chloe started asking this question in the fall when i went back to work
and she started daycare and preschool.
she hasn't asked since summer began.

i explained that we just had a normal day at home,
but on thursday we would return to grand rapids for more medicine.

she asked,
"is that the medicine that will make my hair fall out?"
"i don't want my hair to fall out."
"i don't want people to laugh at me."

tough stuff for a 4 year old.
tough stuff for the parents and siblings of a 4 year old.

on tuesday we met with our dear friend and
fabulous photographer

she shot some photos of us
and at the beach by the lighthouse.

i got my first peek at them this morning.
they are beautiful.

and yet,
i see in each of our eyes
the heaviness
of what this all means.

Wednesday, July 20, 2011

Bountiful

we continue to be amazed and astounded by the community that surrounds us.
word has it that our meals through august were filled in one day.

one day.

and i just have to share the menus:

monday: pasta with vegetables, homemade pereddies quality foccacia, quinoa beet salad

tuesday: roasted chicken, green and yellow beans, whole-grain herb bread, fruit salad, corn salad (she even delivered the fruit and vegetables in sand pails, served with the shovels - a big hit with the kids!)

we couldn't eat this well at a restaurant.

we know that good food can't stop sickness, but it sure makes us feel good.
thank you for fortifying us for the long haul.

the blitz of treatments and trips to grand rapids begins on thursday.
radiation and chemo on thursday.
radiation on friday.
radiation monday through thursday.
chemo on thursday.

even though it involves car time, we are thankful that it is outpatient.

after the blitz, we hope the trips will just be weekly for chemo.

prayer requests:

pray that chloe will respond well to the treatments.
pray that she will understand what is happening.
pray that martha and henri will feel cared for and loved during the blitz, specifically that we can find one-on-one time for each of them.
pray that kip and i can remain calm amidst the unknown.
pray for decision making.

here is one of our many decisions:
it is HOT here in the midwest.
we don't have central air and for the most part, we have handled it.
looking at what lies ahead, we think air conditioning would allow chloe to be comfortable and the rest of us to remain calm and patient.
three guys came in to quote a price,
when they looked at the furnace, each paused and said,
"were you thinking about a new furnace?"
there is not enough space to retro fit an air conditioner and
the furnace is 23 years old.

pray that we make a wise decision.
one that is best for the long haul.
one that is best for the environment.
one that matches our priorities.

Tuesday, July 19, 2011

Finding humor in side effects

We began yesterday morning getting ready for a trip to GR for "staging" for radiation treatments. Martha and Henri were heading off to the house of some family friends for a day of fun and swimming in a backyard pool.  Chloe was quite upset that she couldn't go and swim as well.  After I left to drop M and H off, Christa found Chloe sitting on a swing crying.  As Christa described it, she was crying adult tears, not kid tears, as it wasn't a loud crying.  She wanted to go swim and to have fun, but knew she couldn't.  Sometimes one wonders how much a four year old understands, but I'm beginning to think that Chloe understands more than we know...

Over the weekend, we had been lulled into a false sense that nothing was really wrong.  The thought of returning to this life-of-dealing-with-cancer was rather overwhelming to both Christa and I.  This feeling was made worse shortly after arriving at the cancer center when we had to sign our second consent form of the day (it feels like we have signed a ton of these).  The nurse had brought us into a sterile-looking area with a hospital bed and chairs.  She then began rattling off a list of awful sounding side effects that would be possible with radiation treatments.  Christa and I made eye contact a few times while she was reading.  In my head I actually asked myself the question, which is worse, the cancer or these side effects?  We did not make the nurse's morning when we said that we needed to talk to Chloe's radiation doctor before signing the consent as she could not continue getting anything ready until she had our signature.  The doctor came down to see us quite quickly and reassured us that with the low dose of radiation that Chloe would be getting the side effects would be quite minor.  In the meantime, the pediatric sedation team had arrived, along with a research doctor from DeVos, and a few nurses as well.  I think the crowd was beginning to freak Chloe out a bit.

One thing I don't think I've written about is Chloe's port.  As a part of her surgery, Chloe had an implantable port placed under her skin, below her right collarbone.  It is connected directly to into an artery leading to her heart so that she can receive medications and chemo treatments easily.  With this type of port, Chloe can go swimming or take a bath once 24 hours have passed since the last "access."  Before leaving our house yesterday we put some numbing cream and a patch of Press-N-Seal over it.  When it came time for the sedation team to access it in order to give her the sedation meds we had Chloe look to the side for a minute (thank you interactive storybooks on my school iPad!) and they poked right into it.  Chloe didn't flinch!  I asked her if she felt anything, she said no.  This is such a blessing as in the hospital she had to have three IVs placed before her surgery and these were not pleasant experiences.

Once her port had been accessed again, they took Chloe (and Christa) for a ride on the hospital bed down the hall to the room where the staging would take place.  The gave her the "sleeping medicine" and she was out within ten seconds.  Before surgery Chloe was still awake when we left her and we were upset with her crying.  I would take seeing her cry over seeing her under the effects of sedation.  I'm not going to be able to get that picture out of my mind for some time. 

Christa and I headed out to the waiting room.  We had each brought a number of things to work on as we were originally told that it would be a long wait.  However, we both sat there, feeling anxious and a little fearful, not knowing what to do.  I remembered that I had a new voicemail, but there was no service in the building so I headed out to the main lobby to make sure that it wasn't a message concerning Martha or Henri.  A few seconds into listening to the message, an old friend from Minnesota called.  We hadn't spoken since this all began, so the call was rather emotional, yet it was exactly what I needed right then.  God was with us.  By the time I got back in, Chloe was already out of the treatment room and was ready to wake up.

It took us a while to get her to wake up from her meds induced sleep, but she woke up with a huge smile on her face.  She was surprised to see that her t-shirt was back on, the needle was out of her port, and she had a new Hello Kitty bandaid in its place.  We had been prepped that balance and coordination would be an issue for a while and as she sat up, she realized how funny it was to feel the effects of the medication.  She would lean way back and someone would grab her as she would say "wwhhooaaaa" with a huge grin.  Her speech was slurred as well as she told the sedation doctor "thanks for the ride" with the same effect as someone who has had a few too many.  The effects lasted the next 15-30 minutes and brought a lot of needed humor and laughs to the three of us after our stressful morning.

We wrapped up the morning with a trip to the Wealthy Street bakery for lunch (thanks, poker guys!) and then on to the Jersey Junction where we met Christa's mom for an impromptu ice cream treat.  The morning had started off with so much anxiety and fear and was totally and completely redeemed in the end.  Another faith lesson in our journey...

Monday, July 18, 2011

Surrender

A thunderstorm rolled in off the lake during the past hour.  As is their custom at the first sound of thunder, Henri and Chloe joined us in bed.  Yet, since it's too hot for all four of us in our bed, I got the boot.  I'll use the opportunity to try to put some of my thoughts into words...

Yesterday morning I went for a long bike ride.  It was a good chance to try to wrap my head around the coming week.  Not to plan it, mind you.  That's been done for us.  Chloe's doctors don't ask us when it will be convenient for us to come back to Grand Rapids for treatments, they tell us when to show up.  They printed a two week schedule when Chloe was discharged from the hospital that included both a medication checklist and a schedule of appointments.

We'll be back in GR today, this time at the Lemmen-Holton Cancer Pavilion, in order for Chloe to get set up for her radiation treatments.  She'll be sedated while they create a mold for her body to fit into and then create shields that will protect the areas around where her left kidney had been.  It's our understanding that she'll probably begin radiation treatments on Thursday, and these will probably continue each day for six consecutive days, but these haven't been scheduled yet.

We have to surrender our schedule...

For those who know me professionally, you know that I'm very passionate about education.  One of the things I've put a lot of time into over the past year is a technology initiative in my school district that will put iPads in the hands of each teacher and student in grades 3-12 over the next year and a half.  As a committee, we're finally getting to the exciting time of rolling out iPads to staff in the coming weeks.  Yet, I had to send a difficult email to the committee saying that I have to pull back for the time being as we don't know what the coming weeks and months are going to look like.  I believe it was the right decision to make, but to say that I'm bummed to not be a part of it is an understatement.

We have to surrender our plans...

For those who have been reading through these posts, you've read that tears have become a regular occurrence.  Yet, they often seem to come at the most inconvenient of times.  There have been several times that I've been alone -- while running, riding, or just sitting after getting the kids to bed -- when I've thought maybe if I get the tears out of the way now, I won't have to worry about them later.  If only it were that simple. 

It's so hard to wake up each day and not know what my emotional state will be like.  Some days I can take it all in stride, and others it is such a struggle.  On Friday night I posted that I wished everyone at the grocery store would have known about Chloe and her cancer.  But on Saturday morning when I made a trip to the coffee shop for beans, I worried the whole way there: 1) would I see someone I know? 2) who would it be? 3) what would they say? 4) how would I respond?  Suddenly, I wanted to be completely anonymous.

We have to surrender our emotions...

However, isn't this what we're asked to do as people of faith?  To give up our schedules and plans, even our emotional states, and trust that God has a bigger plan for our lives.  The week before all of this began with Chloe, I had pulled my worn copy of A Testament of Devotion off the shelf.  This is most likely my six or seventh re-read since my mom gave me the book back in 1999.  That I pulled it off the shelf was God speaking to me as prior to starting it again I had been working on three different professional books.  None of those books would have helped to prepare me for the test of faith that this has brought. In A Testament of Devotion, Thomas Kelly writes:
Meister Eckhart wrote: "There are plenty to follow our Lord half-way, but not the other half. They will give up possessions, friends, and honors, but it touches them too closely to disown themselves."  It is just this astonishing life which is willing to follow Him the other half, sincerely to disown itself, this life which intends complete obedience, without any reservations, that I would propose to you in all humility, in all boldness, in all seriousness.  I mean this literally, utterly, completely, and I mean it for you and for me--commit your lives in unreserved obedience to Him. [emphasis his]
But he never said it would be easy...
________________________________

A few prayer requests:
  • Christa and I are feeling pretty anxious about the treatments and appointments of the week.  Please pray for peace.
  • Please pray that I can learn to accept that we as a family of five will all respond to this differently on different days.  Some of us seem to need to have space, some need constant company.  Some of us barely say a word, while some talk without ceasing. 
  • Pray that Chloe's body continues to respond favorably to the treatments and that she can emotionally work through the idea of losing her hair (which still seems to be a big deal to her).
________________________________

On a side note, thanks to all of you who have respected our request for a little space this weekend.  We feel like we're open to a few visitors this week, but please call first.  Thanks.

Sunday, July 17, 2011

Meals

TakeThemAMeal.com

Hello!

I've created a meal schedule for the Holland-Anderson family.  If you would like to help out by providing a meal for them please go to http://www.takethemameal.com  

You will need to log in under:

Recipient Last Name: Holland-Anderson
Password: 2438


This site makes it easy for us to help them out with meals.  I think all the info you will need is on the site.  Please be sure to pass this along to others as I only have a few e-mail addresses.

Thank you for helping.  They will really appreciate it!!   Let me know if you have any questions or trouble logging in.

Thanks!

Lisa Rettler
rettler [at] att.net

disconnect

the weekend has been very relaxed.
almost normal.

except that i have ignored the daily chores to just be with the kids.
chloe and i played games,
henri and i made some super secret spy items,
martha and i saw harry potter and the deathly hallows.

i walk through our house and it all looks the same, normal.

yet,
there is a disconnect,
it all looks the same, yet nothing feels the same.

i feel as if i am suspended.
thoughts of appointments creep up.

i wonder
how chloe's body will respond to treatment.
how we will hold ourselves together.
if martha and henri will sense our fear.
if we can continue to be present in each moment.

yet,
there are so many bright spots.

we have received many beautiful heartfelt cards and e-mails.
thank you for joining us on this journey.

yesterday, after our regular mail arrived, a mail truck pulled up.
i went to the door, a mail carrier introduced himself and explained that his regular route is downtown. someone had handed him a handmade card (in a handmade envelope). since he didn't want it to go through the machine, he hand cancelled it and personally delivered it (may we all do our jobs with such respect and care).

another time i passed by the front door and something caught my eye. two people had stopped by, one dropped off some (much needed) homemade bread and another dropped off a beautifully written card with some gift cards inside. i was so touched, as i have been touched my the many notes and tokens of love that have not been mentioned here.

and yet,
there is a disconnect.
a disconnect between the anxiety in the pit of my stomach
and the way my heart is filled with the love and encouragement of so many.
a disconnect between chloe's vibrancy
and the cancer hidden inside her that we aim to fight.

Friday, July 15, 2011

a reason for everything

i cannot reconcile the idea that God gives us challenges in order to tell us something,
yet i do believe that God can take a horrible thing
and from it bring beauty.

i am experiencing that tonight.

i would never choose to experience this.
i do not believe that God gave chloe cancer to teach us something.
yet...

God is giving us so much through this.

after a harried week in the hospital, i found time to just be with some dear friends.
we talked about everything.
suddenly i felt moved to tears,
not because i am so sad,
but because i am so grateful.

i am so grateful for these dear friends who will do
ANYTHING
for me.

empty my trash
coordinate meals
be my substitute teacher
bring me coffee
facilitate my "foodie" practices
buy hand sanitizer
send me prayers
do my laundry
respect my need for space
listen...

the list goes on.

a few weeks ago, i felt astounded by the fact that
i have led a charmed life.
i truly had not had to face difficulty.

i can still say that i lead a charmed life.

i am not grateful to see my child suffer.
i wish i could erase this all.

yet through it all i see love and grace
and i can give thanks.

A luminary for Chloe


Leisa & Kelli, colleagues from Innocademy (which shares space inside my school) lit a luminary in honor of Chloe tonight at an American Cancer Society Relay for Life event.

A normal day

After a week in the hospital, it was wonderful to have a normal day.  Everyone slept in, Christa and I each got out for a run, and we all just enjoyed getting going slowly this morning.  Henri and I had planned on making a trip to Meijer (our local grocery/everything store) and when she heard we were going, Chloe wanted to join us.  While there was no medical reason why she couldn't come along, it still felt a little risky to take her out of the house.  In the end, I knew that the sooner we returned to normal life, the better.  So, Chloe came along and did great.  She did get tired about half way through the trip and asked to ride, rather than walk (something she never does).

After lunch, Chloe took a long nap which allowed me to make a handful of phone calls regarding insurance and other items that have come up over the past week.  Christa was able to get out for a haircut and a few errands.  Later on in the afternoon, I was able to join a friend for a beer and tonight Christa is out with some friends.  We're living a normal life.

If it wasn't for the fact that Chloe was up around 3:00am and threw up a little (a side effect of the chemo) and my added stress while making breakfast for the kids while also trying to figure out which meds Chloe needed, you wouldn't guess that we have a kid with cancer.

While chatting with my friend Brett this afternoon, he asked me if I ever felt like I wanted others around me to know that Chloe has cancer, to know that our world as a family had just been turned upside down.  To be honest, I totally do.  While walking though Meijer I kept thinking about the people shopping around us, wondering what they would think if I told them that Chloe had cancer.  At the hospital this past week, we were required to wear IDs that identified us as parents.  I'll admit that my ID became such a part of me that I wore it outside the hospital as well.  While picking up lunch at Marie Cartib's yesterday, the cashier stared at it for a while as if he were trying to figure out why I would need to be identified as a parent.  I wanted to say, "My daughter is at the DeVos Children's Hospital.  She has cancer."  But I didn't say it.

After the crazy and intense week we've had, today was such a blessing.  I know they won't all be like this.  It sounds like the side effects of the chemo will sort of cycle and we'll have good weeks and bad weeks.  I've always worked to live in the present moment (with marginal success).  Now it seems it is going to be even more important to do that, to take each day as it comes and enjoy it as much as we can.

Thursday, July 14, 2011

The new reality

Today was a rather challenging day.  I think we were all ready to be home. 

Chloe began her first round of chemotherapy this morning and had to be hooked back up to her IV.  Unlike her first few days with an IV when she laid in bed all day except to go to the bathroom, today she pretty much refused to be in her bed.  I can't blame her.  So instead she spent the day pushing her IV "tree" around, like this:

video

We tried to keep her busy while we began the packing process.  The rooms at the hospital are huge and we brought in a lot of stuff over the week.  Yet, she was her typical self and just bounced from one thing to the next.  Christa and I met with the discharge nurse for close to an hour to get our instructions about medications, our appointments for next week, and all of the things we need to watch for to avoid infection.  In the hospital there are hand sanitizer dispensers everywhere and the rule is "wash in, wash out."  You wash as you enter a room and wash as you leave.  We're going to have to have similar rules around our house for the coming months while she's on chemo.

We were all so excited when we finally got the okay to head home about 5:00.  Chloe slept the entire way home and for another half hour in the driveway.  Settling back into our routine was more than challenging.  Chloe didn't want to eat dinner and everything was stressful (for me at least).  We finally decided to just get Chloe to bed.  When I went up to tuck her in, I asked her if there was anything or anyone she wanted to pray for.  She started crying and talked about one of her friends who didn't visit her in the hospital (we didn't know she wanted her to come) and then moved in to the fear of being bald again.  We prayed and then she asked for one story.  The book on the top of the pile was a chapter book, the second was a D.W. book (which I wasn't up for reading), so I grabbed the third, a picture book, without looking at the title.

The book I grabbed was On the Night You Were Born.  The first page begins, "On the night you were born; the moon smiled with such wonder; that the stars peeked in to see you; and the night wind whispered; 'Life will never be the same.'"

As you can imagine, by the time I had finished reading that much the tears were flowing and I fought to read the rest of the book in a semi-clear voice.  I kissed her good night and went into our room to try to regain composure before heading down to the rest of the family.  How long will this go on?  When will the emotions be not so near the surface?

Heading home!

Our bags are packed and we're waiting for someone to walk us out.

We'll post more later tonight.

We're going to need a few days to figure out how to be a family of five plus dog (who Chloe really misses), please no visitors for a few days. Thanks!

a few photos


Chloe shows her oncologist her expanding princess washcloth.


An outing to the sound garden downstairs.


That's a girl who's hoping to go home today.

Wednesday, July 13, 2011

Hopeful

Christa felt a little clarification or more explanation of our feelings from last night may be necessary. We were discouraged about the news of stage 3 from two stand points. One, with the fact that the tumor had come out intact without spillage, we felt that it was going to be stage 2 (probably not stage 1 considering the size). We had an expectation. Second, we wanted to avoid radiation treatments if possible.

The diagnosis of a Wilms' tumor is still good news compared to what it could have been. As our friend Shannon said the other day, it's like asking if you were going to get hit by a car, would you rather be hit by an Hummer or a Prius? The prognosis for kids with a Wilms' tumor is quite good. We're still hopeful that Chloe will live a long, normal life.

We spent at least an hour and a half this afternoon talking to Chloe's oncologist about treatment. The jist of it: she'll begin chemotherapy tomorrow morning and will continue once a week for the next ten weeks, with treatments spreading out and ending after twenty-four weeks. She'll most likely have six radiation treatments over six consecutive days, the first probably beginning a week from tomorrow.

I'm sure there are going to be many difficult things about the coming months, but for me one of the hardest may be seeing Chloe lose her hair during as a result of treatments. Everywhere I take her people comment on her hair: this morning at the gift shop, last week at the bike shop, every time we're at Meijer. This morning when the gift shop employee commented "she has such beautiful hair" I almost replied, "yeah, it's too bad she's going to lose all of it.". Thankfully, I held my tongue.

During our meeting we had discussed waiting until next week to talk to Chloe about the hair loss. However, while the oncologist was talking with her about beginning chemotherapy tomorrow and why we were doing it (in four year old language), we decided to tell her about it then. She wasn't making eye-contact and was playing with toys so we thought it was going in one ear and out the other. Yet, at dinner an hour later she told Christa that she didn't want to lose her hair because she was afraid of looking like a boy. A short while later as we took a walk she told me that she didn't want to lose her hair because she was afraid to look weird. We all thought that she wouldn't be concerned about it, now we know differently.

When we got back up to Chloe's room, her night nurse was asking if she needed Tylenol. Chloe said she did as her port was sore (pretty amazing for a four year old to say that). Her nurse said that her port used to hurt when she had Hodgkin's lymphoma four years ago when she was 20. She ended up telling Chloe that she had lost her hair and pulled out her iPhone and showed Chloe photos from her hair-shaving party when around a dozen of her friends joined her in shaving their heads. We think it really helped Chloe to talk to someone who had gone through it and had all of their hair grow back. As Christa said afterwards, that was certainly God at work.

It looks like there's a good chance that we'll be heading home sometime tomorrow. Pray for us as we figure out what our life will look like at home. It's pretty overwhelming to think about all that we'll be needing to keep track of.

We continue to be floored by the love and support that surrounds us. Yet in all honesty, it is feeling a little overwhelming to manage. As we figure out what our needs are there will be some folks who will be point people for various items. So many of you are writing these amazing messages, sharing prayers, support, stories. We so value each and every one of them, but we're getting so many that we simply can't respond to them, even those we want to. Thanks for all of the words that are blessing our crazy days.

Tuesday, July 12, 2011

Not exactly what we wanted to hear

After lots of waiting, we finally got the full pathology report back after 5:00 this afternoon. The cancer had spread out of the two tumors to her lymph nodes. This was quite discouraging news as it means Chloe's cancer is stage 3 and will require radiation in addition to chemotherapy. We'll be meeting with the oncologist for over an hour tomorrow afternoon to discuss treatment options and try to grasp what this means.

Please pray that we find the ears to hear and the ability to understand what they are telling us. There is so much terminology that we've never had to use and the few short conversations we had with the oncologist this afternoon were truly mind-boggling.

Please also pray for Christa. She had a really rough afternoon waiting for the report and the disappointing news was too much to take. She's at home tonight with Martha and Henri, hopefully getting a good night's sleep. I'm at the hospital sitting next to a sleeping Chloe.

While Christa's afternoon was miserable, Chloe has been having a great afternoon and evening. They unhooked her from her IV and let us go downstairs to the library, to play in the garden, and a quick browse in the gift shop. When we got back upstairs, they decided that she didn't have to be hooked up again tonight. I haven't been able to keep up with her. There were therapy dogs visiting the floor so she was out in the hallway petting them and then found there were kids playing in the playroom which happens to be next door to her room. We were in and out of her room and all over, quite a treat after being hooked up to the IV "tree" for the past few days.

As I look down at Chloe nestled up next to me, with her characteristic head of curly golden locks, it's hard to fathom what lies ahead. In so many ways, just the process of arriving here and the surgery has seemed like the journey of a lifetime. Yet the journey has just barely begun. The road ahead will be long and difficult, but we know we're not alone. We are surrounded by such a huge group of family and friends that will be right along side us. This blog had 982 page views yesterday alone -- that's a lot of folks checking in and praying along side us. Thanks for walking this road with us.

Blessings & requests

I (Kip) have come home the past two nights to give Martha and Henri the chance to sleep in their own beds and feel a sense of normalcy.  I even brought Tobi, our pug, home from my parents' house last night where he's been experiencing spa-like life and enjoying air conditioned living since we went into the hospital just so that it would feel a bit more normal.

My sister-in-law, Tracey, has been spending her days and nights at the hospital allowing Christa and I chances to escape for a quick meal or a walk or me to come home the past two nights.  Tracey has been amazing supportive and helpful, spending her days in the quiet room down the hallway (working on her dissertation for her Ph. D.) and checking in from time to time to see how she can be helpful.

While being at home has been quite rejuvenating for the kids (Henri dropped his backpack just inside the back gate each night upon arriving home and headed for the swings.  I think his therapy is found in swinging right now.), it has been quite challenging for me.  Christa has been saying over and over the past few days how she feels like we're in a little bubble in the hospital--safe, protected, cared for, without the demands of maintaining a home.  Being home, I find myself surrounded by all of the makings of a life well lived--laundry in various stages, paperwork, kids' items here and there.

When I've arrived home each night it's been interesting to see how quickly I shift from "being" mode to "doing" mode.  At the hospital yesterday afternoon, I laid next to Chloe as we watched a movie and she napped.  In an effort not to wake her I stayed there for at least two hours, maybe three, without any inner rumblings to jump up and do something.  Being at home the past two nights, I've stayed up late and gotten up early just to get one more thing done. We have lots of people willing to help but knowing what to tell them to do is still challenging.

I'd appreciate prayer to help me to let go of getting things done and allow myself just to take care of family and myself.  The latter is tricky, I always ignore my own needs (like sleep the past two nights) and then that usually impacts those around me pretty quickly. 

Yet, amidst the stress of returning home for brief visits, there are so many blessings as I see and feel the love of friends in little words and deeds.  Upon returning home on Sunday our trash was already on the curb and Adriann was in our kitchen gathering laundry.  Yesterday as I rushed off to the hospital expecting news (hurry up and wait), I left a sink full of suds and dirty dishes.  They were in the drying rack when I got home last night.  I had also left the windows open hoping the house would cool off a little and thought it would be fine as I watched the first set of storm clouds blow north of us, not knowing there was larger storm coming in off the lake.  Ellen saved the day by mopping up the mess and washing Chloe's bedding that got soaked.

Over the past few days, the moments of tears have not been those times when discussing diagnoses and treatments.  They have been those times when reading well-wishes from friends and realizing how much we are surrounded by God's love. Yesterday morning while driving back to the hospital by myself, I tried listening to NPR.  It was just noise, I couldn't follow it.  So I turned on a CD.  I had been listening to At the Table by Ordinary Time, a gift from some friends.  The first song that came on was actually the last on the CD, a benediction, call May God Keep You.  As I listened to the words, the tears started flowing and wouldn't stop.  I'll close with those words as a blessing to us all...

May God Keep You (Psalm 150)

May God keep you on your road; Send blessings upon your head; May Jesus share your heavy load; And bring you peace and rest; May his face shine down upon you; May you feel His grace; May He never remove His steadfast love from you.

Let everything that has breath; Praise His holy name; Praise Him for His mighty deeds; Praise Him all that He creates; Praise Him in His sanctuary; Praise Him all the earth; Praise Him throughout all the ages for His faithfulness.

from At The Table, released 01 December 2009 Words and Music: Peter La Grand

[If you're reading an email version of this, you can listen to the song through the embedded player below on the blog.]

Monday, July 11, 2011

partial diagnosis

I know many of you have been thinking, praying, wondering.
Thank you for that.
It has actually been a respite not to know - we had the whole weekend to focus on helping Chloe recover from surgery.

She has made HUGE gains. In addition to walking to the nurse's office for a treat last night, Chloe was able to "unhook" from her IV pole and go downstairs to get ice cream. She has been writing on the windows and doors with window markers. She seems back to her old self - it even feels hard to keep up with her.

The bandage from her incision was removed today. It is cute to watch her, she keeps pulling up her shirt to look at the incision and then she looks at the port - she is getting to know a whole new her.

Our oncologist let us know late this afternoon that the pathologist is still studying the tumor. They have confirmed that it is a Wilm's tumor. This is the best news we could expect. This form of cancer has a very high cure rate. In the doctor's words, "it is the best cancer to get." Hopefully tomorrow we'll learn more about the treatment.

We continue to be overwhelmed and amazed by the care and love of friends. Gift cards, treats for Martha and Henri, people checking our house, food, handmade cards, prayers and more prayers. We are so thankful for all of you. Again, we feel the presence of God in all of this. Last night I almost forgot about what we are dealing with - my heart was full to bursting with all of the love from friends, family, even people we don't know. Thanks to all of you!

Sunday, July 10, 2011

little victories and random thoughts



there have been many little victories,
smiles, a giggle, beginnings of boredom and... food.
chloe got to have a little chocolate milk, PB&J and chocolate cake. we got to see a little chloe sparkle with each bite.

after her food settles, devos will provide us with a little wagon equipped with a battery powered IV pole so we can get outside for a few minutes. the nurse even found a cute pair of sunglasses for the ride.

we all slept much better last night. kip and i took turns with chloe and martha and henri were able to sleep in their own beds. uncle jed was there to stay with them. for the first time, i was able to sleep without too much awake time. those awake times are sometimes the hardest, but welcome all the same.

in those moments i can process. i find myself thinking about our new vocabulary: port, chemotherapy, oncologist...
the most difficult word is cancer.
for you harry potter readers, it is sort of like naming voldemort.
it is much easier to say "the c word"
sort of like the wizards said "he who must not be named."

we don't have an official diagnosis so it is possibly premature to even say the word. i feel, however, that we need to practice saying it, hear the syllables with our ears and learn to make it part of a new reality. what a blessing if it does not become our reality, but nothing is certain for this moment.


we feel so blessed by our wide net of support.
the wall is full of beautifully colored cards made by chloe's friends.
every time i pass the computer, there is a new e-mail or facebook notification.
offerings of love, encouragement, help, food, childcare.
this is what gets us through the difficult moments.
this is where we sense the presence of God.
thank you for that, otherwise i might focus my prayers on asking why.
instead i give thanks or read your prayers and feel as if i am in a loving embrace.
i want to respond to all of you, to express my gratitude.
instead i am taking those moments to hold chloe's hand, offer words of encouragement and celebrate the little victories.

Saturday, July 09, 2011

A restful Saturday

Today has a much calmer rhythm to it than the past few.  Chloe is recovering slowly, napping often, not wanting to move much, taking a few ice chips and a few sips of apple juice.  Christa and I took turns sleeping last night, so after about three hours of sleep we each find ourselves dozing in the chair next to Chloe's bed while she naps.

There is lots of time to sit, but neither of us seem to feel like reading or doing much of anything other than hanging on to Chloe's hand.  Our families will join us here this afternoon and head off to Martha's performance which is only a few blocks from here, while Chloe and I hang out here.

It sounds like the weekend will be pretty quiet like this.  We won't have results back from the tests on the tumor until Monday.  All of the doctors continue to be pleased with both the results of surgery and how she is doing.

Martha is wrapping up her theater camp this morning and Henri is visiting the Meijer Gardens with Christa's parents.  The social worker reminded us how important it is for them to be getting lots of attention too, so I'm sure any notes or cards for them would be greatly appreciated.

Thanks again for the prayers and all of the communication.  It is wonderful to find a new note each time we have a moment to check.

[As many of the folks that have been writing probably haven't seen Chloe recently (or ever), I pulled up this photo our friend Lara took for our family Christmas card.]

Friday, July 08, 2011

Grateful

The past thirty-six hours have been full of so much shock, fear, grief, adrenaline, and questions. It's difficult to put into words exactly what I've been thinking and feeling. But tonight, as I sit on the end of a sleeping Chloe's bed, looking out on the lit skyline of Grand Rapids, I feel grateful. Grateful for:

- Dr. Worpel, who found the mass, questioned it, and followed up on it. We've been told over and over the past two days how amazing it is that this mass was found during a well-child exam.
- The doctors, surgeons, nurses, and other specialists who have taken us in and made us feel that no matter what turns up during the next test or procedure that they have it figured out.
- our families that have been by our sides
- the mass coming out in one solid piece and the surgery being so successful
- the fact that my brother was able to get away from work for a few days and flew in this evening
- our professions as teachers and that we have nothing else to worry about right now other than nursing Chloe back to health and taking care of our family
- Our insurance company who told me this morning that my only concern is Chloe and that they will take care of everything
- our decision to buy travel insurance so our previously-scheduled 15th anniversary trip to NYC (set for next week) was refunded in full this morning
- the flood of communication from friends and family letting us know that we are not alone in this
- trust in a loving, gracious God

Support Martha @ GRCT on Saturday

Many of you have asked how you can support us. Right now your messages and prayers are lifting us up more than you know. But here's one additional thing...

Martha has been attending a theater camp all week at the Grand Rapids Civic Theatre. She has been staying with Christa's parents at night (in GR) so was already feeling a bit homesick before all of this began with Chloe. Tomorrow (Saturday), the budding actors and actresses who have been attending the camp will be putting on a free performance at the Grand Rapids Civic Theatre. Martha is feeling quite upset that our entire family won't be able to attend. If you happen to have a hour to spare, I'm sure she'd be thrilled if you came to see the show.

Details:
Saturday, July 9th
3:00pm
Grand Rapids Civic Theatre
30 Division Avenue North
Grand Rapids, MI 49503-3192
(616) 222-6650

out of surgery

We just met with the surgeon. Chloe is in recovery. The tumor has been removed. They will do some tests and make a plan for treatment. We should know more information by Monday. We are so anxious to see her. Thank you for your prayers, FB posts, comments, encouragement, cards and love. We feel so surrounded by your love and support.

Chloe is in surgery

Thanks, everyone, for all of the prayers, emails, comments, etc. We are certainly feeling loved and supported from near and far.

Chloe went into surgery close to 3:00pm to have her left kidney removed. The surgery will last between 4-7 hours. We probably won't know the exact make-up of the mass until Monday or so. That information will determine the next steps.

Both sets of grandparents are here with us, along with Christa's brother and his wife. My brother is flying in later in the evening. We also had the chance to chat with Mary Ann & Derek as they are here with their son Oliver which helped to get a perspective from other parents going through the same thing.

Please keep praying!

Thursday, July 07, 2011

Please pray for Chloe

After Chloe's well-child check on Tuesday, her pediatrician requested an ultrasound to check her "swollen abdomen."

Chloe had that ultrasound at 8am this morning and around 11, her pediatrician called to say that the ultrasound had confirmed that there was a mass near Chloe's left kidney. She continued to say that she had already spoken to an oncologist at DeVos Children's Hospital in Grand Rapids and that they would be expecting Chloe within the coming hours to admit her and we should plan to stay a week, maybe two. I had to ask her to repeat what she had told me as I couldn't believe what I was hearing.

What we know right now, a CT scan has shown that there is a mass in her left kidney, about the size of an adult fist. She will have further tests in the morning and then surgery either tomorrow or Saturday to remove the mass. The next steps will be determined after that.

Please pray for Chloe, her doctors, us, and Martha and Henri. We'll write more when we know more.