Go Monkey! Finishing scans tomorrow.

Esther did great today. She has her last scan tomorrow at 9am, and we will meet with the doctor at 1pm. 

I know many, many have been praying and waiting for an update. Thank you.  This is a huge gift! 

We had fun watching the ball machine for about an hour while waiting for her CT scan. She was ADORABLE cheering for the monkey, who swats balls into a hole. "Go Monkey!"  "You can do it!"  "Keep trying!"

"This is what the grasshopper does."

What do you think?  Any resemblance? 

One Year Scans, Be Still My Soul

Esther completed treatment for Stage IV, High Risk Neuroblastoma one year ago.  She has been cancer free for one year.  This is a gift, a gift I am wrestling to receive without a "but".

While treatment for cancer isn't the kind of normal any of us would choose, but for the season, treatment was stabilizing.  It set the rules, set the pace, gave us boundaries.  Life was a caged, complicated simple.  For the last year we've floundered a bit trying to figure out new boundaries, a new pace, new rules in this strange reality where things like scans for cancer are a part of every day, no big deal, life.

Here comes a "but".  But it's not a normal part of life.  I wrongly feel an unspoken expectation, maybe assumption, that things like Esther's scans for cancer shouldn't be a big deal anymore.  In an effort to cope, I am nonchalant.  However, inside I'm screaming...tomorrow we are checking to see if one year later my daughter is still cancer free.

When Esther was first diagnosed our wonderful social worker shared a bit of wisdom.  She told us that young children are excellent at coping.  If they feel bad, they rest.  If they feel good, they play.  They don't worry about the next day or even the next hour.

I have been worrying about the next day.  If I own the angst in my stomach it leads to a flood of fear.  Broken and changed relationships, distance from others because germs will rule our lives, medicine, night after night away from my husband, living out of a suitcase, bloody noses, ports, stares, wondering, not getting to be the wife I want to me, being a distracted mother to my other children, losing my daughter.  When Esther was in the hospital and I was home, I would often set the table for 5 children and remember one wasn't there.  I had to put the 5th plate away because one wasn't there.  I worry about setting a table for 4 children.

So instead of actually owning or talking about the flooding emotions, I pretend it's all just an average day.  No big deal.  I'm not honest, and that's not good.  I don't want to be a burden.  I don't want to still...still...be needy.  I wonder if people are tired of hearing about it.  I haven't been taking it to the throne where mercy and help is found because I feel like I shouldn't still have this need.  I don't think this is what the Lord would have for His children.  He would have us climb up and tell Him more.

I have been reminded, comforted by a hymn over the last several days.  The Lord is on MY side.  I can leave it all to MY God.  He will remain.  He will undertake.  He will care for me, take care of me.  This hymn has been the reminder I've needed.  The surge of anxiety is still there, but the Lord is on my side.  Bear patiently...patiently.  It's okay, it's not all over.  I can sigh relieved.  Patiently.  He will undertake this mess of a woman.

Here's the lyrics and a video so you can listen.

Be Still My Soul, Page CXVI

Be still, my soul, the Lord is on your side. 
Bear patiently the cross of grief or pain;
Leave to your God to order and provide;
In every change, He will remain. 

Be still, my soul: your God will undertake 
To guide the future, as in ages past.
Your hope, your mind, your will let nothing shake;
All now mysterious shall be bright

Be still, my soul: the hour is hastening on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's joys restored.

Be still my soul
And praise him

Esther will have scans tomorrow, Thursday, and Friday.  The last three sets of scans have only been a CT scan, but I've requested a more detailed, MIBG scan for this round.  Not because there is anything glaring or necessarily worrisome, but there wasn't any blinding sign of cancer when she was first diagnosed.  I just want to be sure, to ease my fears of leg pains, a slow healing bruise, a cough she's had since November.

Thank you for praying for clean scans.

One more thing...September is Childhood Cancer Awareness month.  After my recent Ice Bucket post, I want to focus on a couple areas.  I hope you heard my heart and my cry for us all to move beyond an awareness and really seek to meet others in that sacred space of empathy.  So, for this September I want to educate and encourage us all to take one step to meet another from a place of empathy.

For today there are two challenges.

• I've created two pictures you could print and hang in your office, on your door or your mailbox.  Thank you to those of you who have shown social media love by sharing a picture or even changing your profile pic.  Thank you.  You can download and print one of these in a pdf format here.  

• Write a thank you note to a pediatric oncology nurses or doctors.  Please imagine the lives of men and women who daily care for sweet, precious children who might die.  Imagine the care it takes for them to be gentle, to calm and comfort scared mommies and daddies, to see 1 in 5 of those children die.  Thank them for being brave and kind.  Tell them they are making a difference.  Share that you know it must be hard, but they are doing a good job.  Here's the address for the Children's Hospital in Colorado, but if there is a facility near you, look up the address.  

Children's Hospital Colorado

Center for Cancer and Blood Disorders

13123 East 16th Avenue

Aurora, CO 80045

Thank you for praying for Esther and for entering into empathy with others.  It's a wonderful, wonderful gift.  

The first summer in two years

The previous two summers were distracted by cancer and the treatment that went along.  We had to nearly always say "no" to the adventures brought by warm air. We worked hard to catch up and finish our school year last spring in anticipation of a summer of yeses.  Here are a few glimpses of our first summer in two years.

Lost Teeth

Played baseball

Turned Eight

Stayed cool

Went to Glenwood Springs

Celebrated...SURPRISE Dad!!!

Played with dollies, mostly Sofia the First

Took the MAX bus to City Park for the 4th

Ate broccoli

Got pneumonia...then Zinnia...then Esther....

50 miles for each clothespin...4,020 miles of clothespins

Saw an outdoor concert.  Took Selfies.

Danced.

Swam in the Umpqua River

Slack Line

Ate Pizza...and lots of other goodies

Went to Battery Kinzie, a WWI and WWII bunker

Saw a light house

Put our feet in the Pacific Ocean

Admired Esther's Curls

Went to Mariner's Game

Took a ferry

To a beautiful island with giant leaves, gorgeous views, and gross slugs.

Were flower girls and a handsome young usher

Saw far away friends

Grew some vegetables

Donated hair

 

Began a new school year

The summer days have wound down and we are once again busy with school.  We are thankful for a cancer free summer without the "no's" it's treatment brings.

Is the Ice Bucket just a Sandwich?

Disclaimer...I wrote two bad words.  Also, this is not a criticism on the support of ALS or any other disease.  Just some food for thought.  

We are all seeing floods of friends, children, celebrities, politicians all dumping ice on their heads to create awareness and funding for ALS.  It is neat to see the ALS community highlighted and supported.  It is an awful disease, and I hope it does help.  I don't know the pain of this disease, but I can imagine, and I am certain the suffering is overwhelming.

At the beginning of the summer we went through a marriage skills class.  In the class we were shown this video.  It is only two minutes, but SO good. You must watch it for the rest of the post to be meaningful.

So, is the ice bucket just a sandwich?  In the wise words of Gabriella Miller, a 10 year old who died of brain cancer, awareness is bullshit.  Without any helpful action, all the talk is a bunch of bullshit.

I confess, my heart aches just a little every time I see someone dumping a bucket of water on their heads.  There are videos of dumps gone wrong.  We laugh.  We giggle.  I think of my friend who is bedridden by a condition developed during pregnancy causing extreme nausea and vomiting and all the WANTED babies who are aborted because the mother can not endure the torture.  I think of two friends whose daughters have brain abnormalities, and their daily lives are full of complete care of their girls.  I think of children ruthlessly beheaded.  I think of couples mourning the months and years ticking by, heartbreak every 28 days.  I think of a little boy with spina bifida.  I think of Esther.  I think of people whose bodies are wasting away due to ALS.  Oh, it hurts.  I want ice buckets for all of these people.

We are fickle.  I am fickle.  We forget so quickly.  But the ALS community, the cancer community, the Hyperemesis Gravidarum community, the neurological defect communities, it's not a fad.  They are often barely surviving, quietly enduring their assignment, wading a confusing and still frightening journey in the aftermath.  It's not all over.

The thing about empathy is it's so hard because we have to willingly choose to hurt.  Friends, it's not a giggle after a dump of water, and I really do hope that each of you who have chosen to dump ice on your heads are giving the donation to back it up.

We have had many faithful supporters and prayer warriors for our family.  We are incredibly grateful.  When Esther was first diagnosed there were outpouring waves of love and support.  As time ticked on, the tide receded.  There are small laps of refreshing water from time to time.  We've moved away from the water's edge a bit, but the sunburns and sand blisters are still there.  We look around knowing that we had been surrounded by people who cared, but also feeling so alone.  The wave was gone.  No more ice buckets.

Not every need can be embraced, and I understand that.  At the same time, I'd like to offer a some ways to meet others down in that deep, dark hole.

1. You don't have to be the hero.  A quick email or text to let someone know you're praying for them or thinking about them is a healing salve.

2. Ask if they'd like to talk, let them know it's not a burden.  You don't need to have the answers, just a listening ear.

3. Physical needs are many.  We are actually pretty good at meeting those, keep that up.  Don't forget that many would choose a emotional care over a meal.

4. Share that you're aching with them.

5. Encourage them to keep going and offer to hold their hand.

September is childhood cancer awareness month.  I stocked up on gold ribbon after Christmas to tie around mail boxes and front yard trees.  We'd love to send you some and hope you'd choose a charity supporting childhood cancer to donate, write a note to your member of congress, or do something nice for for patients or caregivers in a hospital near you.  I'd be happy to give recommendations.  My sister, Robin, is donating all of her earnings for the next two months to St. Baldrick's and Brent's Place.  Read about it on her business facebook page.

Most of all, move beyond an impersonal bucket of ice water.  Crawl down that sacred hole and thank your hurting friend for sharing their heart with you.