sunrise

There is no easy way to say it.  The CT scan didn’t bring good news.  The large tumor in in Andy’s left lung has continued to grow.  Because he had progression while on the medication he no longer qualifies for the trial that we have been doing here in Miami.  We’ll meet with the doctor again this Friday to get final details and to see what advice she has for going forward. 

What to do with this news?  How are we?  I’m not sure at all.  Fumbling, angry, heartbroken.  But not without hope.  And this is where you come in.  For some reason it’s hardest for us when it feels like people are feeling sorry for us or giving up.  Please don’t. We aren’t.  We aren’t feeling sorry for ourselves or giving up. 

This morning we woke the kids up at 6:30 am and drove to the beach to watch the sunrise.  It was fresh and wild and every color of hope you could imagine.  Then we went out for coffee and pastries just like everything was wonderful.  Because in that moment it was.

kickapoo love

Yesterday while I was in the living room working, the kids called out that a package had arrived in the mail.  It was long and slender with a return address of “The Goofballs at the Kickapoo Valley Reserve”.  We were intrigued.  When we opened it up we found a photo poster depicting the images above.  There were some tears.  Here’s the story as I know it.

On a January afternoon a couple of weeks ago, a bunch of our Kickapoo friends trekked out to one of our favorite places on earth to show our family some Kickapoo Love.  They all wore red, they stomped hearts in the snow, they held up letters of love and they even found a guy with a drone to capture it all.  I’m sure there was plenty of laughter and fun.  Can’t you feel it?  We sure can!

Even when the world seems dark and scary there are people out there holding up the light for you.  Giving you strength and confidence to carry on.  We feel the love from that little valley flowing like the river right here to the city of Miami.  Filling us up, carrying us along.  We miss you all and can’t wait to come home.

Cheers.

with photo credit to Jackie Yocum and Garick Olerud

crazy critters of the sea

 Blue Button Jellyfish

 Nudibranch “Sea Slug”

Burr Pufferfish

 Kite Boarders

 Sea Sponge

 Sail By the Wind Jellyfish

 Portuguese Man O War

friends

The doctor’s decided to give Andy a week off the trial medications to see if his kidney function numbers would come back down.  After about two days off, he was feeling much better (and his numbers were coming down) and our friends arrived!  It was good timing, Andy had energy and a dose of home, laughter, and friendship was just what we needed to lift our spirits.

We spent some time at the beach and we drove down to the Everglades and saw lots of great birds, fish, alligators and American Crocodiles (!).  The kids built forts and wove palm frond mats and set up a “store” on the sidewalk and sold their goods.  The adults made loads of great meals, talked and laughed, took walks around the neighborhood (to scavenge cool wood and plants from roadside compost piles) and filled up on the spirit of sweet friendship.

Yesterday Andy and I went back to the clinic to see what the doctor’s had decided about his case going forward.  After lots of back and forth with the drug sponsor it was decided he can stay on the study and that we could reduce (slightly) the drug that seems to be causing his kidney some issues.  So treatment started again yesterday, it won’t be until next week that he adds the second (potentially problematic drug).  This week we hope we’ll just see some stomach upset and fatigue.  It’s not great, but it’s treatment and we’ll take it!

Having friends from home made this life in Miami seem even more surreal.  Our two families are out of place in this big city, but we made the most of it and gave the neighbors plenty to talk about too.  Now they are on their way to the Keys and we are filled up with love from home and ready to face another week.  Safe travels back to the Kickapoo sweet friends!

adventures in miami

We made it to Miami!  We are settling into our house and neighborhood nicely but feeling overwhelmed by the traffic and city just a few blocks away.  (I didn’t photograph any of that!)

It’s very green.  We haven’t tired of walking around the neighborhood admiring all the crazy tropical plants, and stucco and tile houses.  Elsa loves all the lizards.  The air is warm, but smells like city.  Sometimes it seems kinda quiet, most of the time it doesn’t.  Certainly we are in environmental and cultural shock.  Country fish floundering in a big cosmopolitan city.  Luckily Andy and I can call on all our various pre-kid travel adventures and at least act like we know what we are doing.

One of the first things we did was take the kids to the urban “farm” we found when Andy and I visited a couple weeks ago.  It’s just a neighborhood over, in Little Haiti, and it’s funky as all get out.

They rent rooms in the airb&b treehouses.  They grow veggies and eggs and honey.  They rescue animals (the potbelly pigs were the most fascinating) and they have volleyball games and vegan potlucks a couple times a month.  We’ll definitely do some hanging out there.

Yesterday after school and music practice and some work for me, we ventured out to an urban state park, just a few miles from our house.  Weird to have acres of wilderness in the city, surrounded by highrise skyline.  But we revel in nature where we find it and there was plenty to admire.  Thousands of tiny hermit crabs, a lightening whelk, jellyfish and even stingrays in the lagoon (the girls weren’t so excited about the purple flag beach warning that means “stinging marine animals”). 

This morning we walked to the farmer’s market, a few blocks down along Biscayne Avenue with non-stop traffic whizzing by.  But we found organic veggies, and homemade kombucha amd tempeh, fresh squeezed tropical fruit juices, crusty fresh bakery breads and even free range organic eggs (for $7/dozen!).  There is so much to discover and we try to take it in in small bites, retreating back to our little house and fenced backyard to chase lizards and put out food for the feral cats, so that the world doesn’t feel so strange and new.

I think it feels like a vacation with a lot of uncertainty and fear and worry mixed in.  I know we are so lucky to be here.  To have the resources to “move” to Miami to get the best care we can find.  We work hard to count those blessings.  When the girls are in tears missing home, missing friends, missing pets and bickering with each other because they are just uncomfortable inside themselves, I remember this is hard.  Hard for all of us.  And I remember that there are some things we can control and some things that we can’t.  And it will always be like that.  And I continue to pray that this path is making us strong and resilient and full of compassion.  And I remember, with so much gratitude, all of you who send love and support our way.

badlands, eclipse and the black hills

Bison in camp!

Fossils in the creek bed

Bison bones!

Camping with friends in sage brush country

Arms full of sage

Devils Tower

Spearfish Canyon

Crazy Horse Monument

Crazy Horse museum

Iris trying her arms and legs at hoop dancing

Beautiful way to see the hills

Jewel Cave

Last night buffalo viewing

What an amazing trip!  After Andy got the green light to wait another couple months to scan again (i.e. No Treatment!), we made quick plans to see the eclipse in its totality.  This brought us to southwestern SD, and eastern WY to meet friends for a couple of days.  The eclipse was spectacular, and my few photos (I was determined not to stay behind my camera for long) don’t even begin to do it justice, so I won’t post them here.  I was mesmerized by the shadows and light, the dusk falling in every corner, the way my body felt in two+ minutes of sun shadow.  Andy couldn’t take his eyes off the corona and was able to see Bailey’s beads (whatever they are) and stars and planets and all matter of mysterious things.  The kids were just giddy and not as aware as we were about this being a BIG deal.  It was so worth the drive!

Then we parted ways with our friends and spent the rest of the week exploring the Black Hills and Bad Lands.  Several hikes, great campfire food, dry warm breezes through the tent and freezing cold mornings.  No showers for 8 days, meeting interesting people, spending 2 hours in the belly of the earth, watching the wrangler girls run the show at Rockin R ranch and knowing our girls were inspired.  Skipping the crowds at Mt. Rushmore and spending an afternoon instead at the Crazy Horse Monument, watching native dancers and artists, and understanding, a little, the story of what happened out there.  Diving into the 50 degree cold of a mountain stream at 9am, eating ice cream more than you should, watching falcons, golden eagles, and coyotes up close.  Finding fossils and beautiful stones and letting mama hunt for just one more golden agate. Filling the car with armloads of sage, skinning knees on many boulder climbs, reading by headlamp light, listening to the story of Sitting Bull and (unrelated to the Black Hills) Roll of Thunder Hear My Cry as the miles sped by. 

So sweet to find the beauty in these moments together.

august

We spent the weekend with friends in the Yellow River State Forest.  Just across the border in Iowa and clearly still part of the Driftless, we enjoyed hiking, playing in the river, napping in the shade, cooking meals together, playing 4-square (new for our girls), laughing around the campfire, and ninja moves with sparklers at night.

Summer is flying by.  The garden is pumping out cucumbers and zucchini.  I’m harvesting elderberry for the freezer and soon the tomatoes will be on.  It’s all so normal, and I couldn’t be happier.

wild ice

Sunday was a perfect day for skating.  25 degrees and sunny, with the wild ice looking like a Zamboni had been there overnight.  We could skate along the rock outcroppings for a good half mile, maybe longer.  We had friends visiting for the weekend and the kids couldn’t get enough ice time despite bruised knees and elbows. Their cheeks glowed from all the exercise and beauty.  Me, I watched in awe as Andy skated circles around everyone.  His body still remembering the years and years of hockey moves.  Here he is feeling strong, lungs pumping fresh air, legs and arms swinging as he races across the ice.  The kids stop to watch and yell, “come back Papa and skate with me”.

Next Monday we go to Mayo to talk with the Sarcoma team there about the latest scan results.  The tumors in his lungs are still growing, though not as aggressively as they could be.  The scan didn’t detect cancer in any other organs.  We’ll take it.  Funny how good news can become so relative.  

We aren’t sure where this path will lead next.  For now we revel in the beauty of miles of ice and the sound of children’s laughter bouncing down the valley.

remembering Molly

Last weekend found us back in the north.  First a night in Duluth where we enjoyed dinner out, holiday lights, swimming at the hotel and knitting in bed.  We tried to spend a little bit of time next to our beloved big lake the next morning, but that north wind was frigid, and we didn’t last long!  So it was on to:

This is the place where Andy and I met almost 18 years ago.  It is the place that has inspired so many paths in our lives.  It is a place of sweet memories and long friendships.  It is the place where our friend Dale (the director of Deep Portage) still lives and works.  This trip was to visit him, to finally show the girls this place that means so much to us.  And it was also a trip to honor our friend Molly, Dale’s amazing partner (both in life and work), and our mentor in so many ways, who passed away this fall.  

The girls LOVED Deep Portage.  They were in awe of its size, its beauty, the joy of running loose in a gigantic lodge that we had all to ourselves for the weekend. They enjoyed the hike to the outlook tower, the tour of DP’s wood heating system (it heats over 50,000 square feet–and hot water for all the showers and such–with wood!), they couldn’t get enough of Dale’s dog Lily, and enjoyed staying up and playing card games with Dale at night.  They loved the interpretive center and the climbing wall that was so graciously staffed for us.  They didn’t want to leave.

It was good to be in Dale’s presence, to feel his sadness and strength.  In ways it was also hard to be in a place that is so full of Molly.  Everywhere I looked there were memories of Molly.  For two autumns in a row I was part of the staff that gathered round her for training, to soak up her positive example, to find motivation in her enthusiasm.  How it was she, all those years ago, who insisted Andy and I take on some projects as a twosome (with her perceptiveness that the two of us had a life to lead together).  It was she that inspired the work we do today as we learned by her side the joy and art of engaging kids and adults in nature.  It was she who we looked up to as a caring, clever, lively, well-read, articulate, creative, and masterful naturalist. She was our friend, and our role model.  

It was good to talk to the girls about Molly, about all the things we so admire about her.  It was good to see and feel that Molly lives on.  She lives on in our lives as we continue to teach kids in nature, she lives on in our daughters who are growing to be strong and articulate and clever like her.  She lives on in the staff at Deep Portage who continue to honor her legacy with Molly’s 12 Rules to Live By and The Book of Molly. She lives on in her partner Dale who carries her light forward.  She lives on in the whisper of Aspen, the lap of the lake on the shore, and the sprinkling of stars in the northern sky.

  We are so honored to know and love her.

change

So I haven’t been writing because I don’t even know what to say.  Somehow I want to let you know that sometimes it’s awful but we are ok.  I’m not sure how to do that here, I wish we could all sit down and have a cup of tea together so you could just see.

Andy’s last scan showed more tumors. 

A month ago a dear friend took her own life.

Two of my longtime coworkers move on.

The election season makes us sad and crazy.

And with all that I’m thinking again about change.  About how things are always changing, how try as we might to hold on to what feels comfortable, life and all that comes with it, is impermanent. 

Yet here we still stand learning that moments pass through us and nothing stays the same.  Grief comes and it goes, laughter erupts in the midst of it, the girls snuggle together in the morning and fight with each other in the afternoon.  And somehow as I watch these moments pass along I can feel some ease just in knowing that this too will change.

The frost turns the morning glory vines brown and the milkweed pods burst open.

Our meals now consist of soups and squash and frost nipped kale.

Elsa’s front two teeth are finally loose.

Iris’ legs and arms stretch long and Andy can’t recognize her clothes from mine in the laundry anymore.

Moments march into the next before our eyes.  Holding on does no good.  Comfort comes in being there for each one.