A Tumor. A Piano. Princesses. And Waiting.

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At this point, I can’t remember how many times we’ve been to Mayo Clinic since Seth’s initial diagnosis of choroidal melanoma (eye cancer) 11 1/2 months ago. Let’s just say we’ve been to Mayo a lot in 2015, so much so it’s almost like a second home. During our most recent visit in August, we received the good news that the tumor in Seth’s eye had shrunk 12% from its original measurements in January 2014.

Monday, we woke well before the crack of dawn to get ready for another trip to Mayo. Seth had a long day of appointments ahead, eight to be exact.

We found before and after school childcare for our two oldest, but didn’t have care for our youngest, Maisie, so we decided to bring her with us this time. It’s not ideal to bring a near four year old to Mayo for a day of appointments, but if there’s one thing I learned when she accompanied us for 3-4 days of appointments last January, it’s that a preschooler is sure to be a blessing to patients, caregivers and doctors alike. So we brought her.

The first of Seth’s eight appointments was blood work, so we headed straight there. The line was CRAZY long, the longest we’ve seen at Mayo by a landslide. We had to wait a good 20 minutes in line before Seth checked in. Apparently, Christmas and blood work go hand in hand.

The waiting room was loaded with patients. Crazy full.

Lots of waiting going on in the waiting room. No surprises there, I guess.

Maisie broke out some Peppermint Muddy Buddy’s Chex Mix along with the new Disney Clip Princesses she received at her birthday party last weekend, and played until her heart was content. She managed to entertain a few folks behind her, too.

Why not break out the princesses? Why not?

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Seth was called in for blood work. At that point, we were already 25 minutes late for his 9:00 a.m. CT scan, but we didn’t bother with asking or calling ahead to let them know we were still coming. Mayo time typically runs late, but everything works itself out by the end of the day.

We waited until Seth was called in for his CT scan, then Maisie and I headed to subway level to hang by the piano in hopes of some music. (If you’ve read ANY of my Mayo posts, you know I’m in LOVE with this piano.)

No pianist had arrived, but we still had hope.

We got great seats, chairs two and three down from the piano bench. Charlie got one of the best two seats in the house, right next to the bench. Then there was the lady on the other side. Charlie and the other lady, they were regulars here. Much more regular than us. Charlie’s been battling cancer all over his body for two years straight. He’s lived in a local hotel since May. He’d clearly become friends with the woman on the other side of the bench. I never learned her story, but she’s been at Mayo quite a while, too. She leaves her camper here, in fact. At $60 for 2 months in spring and summer, it’s way cheaper than a hotel.

I got to know Charlie.

Maisie got to know Charlie.

“I like to be up here,” said Charlie.

I like to be down here.

Perhaps Charlie and I were a bit kindred.

“You think Jane’s coming soon?” said Charlie.

“Yep, that’s what we’re hoping for, I replied without a second’s delay.

Jane’s the lead pianist here at Mayo Clinic. I’ve written about her before. I’ve seen her perform here more than once. There’s something special about that woman, and since Seth gave us permission to wander during his long CT appointment, I wanted every second to catch a chance at seeing Jane again.

Before long, Jane arrived. Ahhh, yes. Jane and her beautiful, delightful, one-of-a-kind, patient and caregiver ministering, piano-playing gift.

“How Great Thou Art” was first. Jane on piano. Then a male singer arrived and they performed it all over again for an even larger crowd.

“That was incredible. Totally worth being here for that,” proclaimed Charlie. I agreed. Totally agreed.

A bunch of Christmas tunes.

Happy Birthday and The Itsy Bitsy Spider for Maisie.

Marine Hymn for a veteran on the other side.

Over the Rainbow with an impromptu solo from the elderly woman on second floor.

Wow. Just wow.

And then there was Jane, always Jane and her wandering eyes. Scanning patients, caregivers, doctors and passers by to intuit their mood, the tunes that would best lift their spirits and meet their needs today…now.

I watched Jane watch them. I watched them. Then I watched Jane watch them again. What can I learn from this great, wise woman? This is the most amazing gift I’ve had the pleasure to witness again and again and again. To minister to a “revolving audience” so profoundly? Wow. Just wow. This is a gift worth cultivating. I get this, admire this, and could totally nurture this kind of art.

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After a long while of listening, Seth texted he was done and appeared at subway level. I invited him to sit, listen. We had more than two hours before his afternoon of six appointments.

Maisie made friends with Stephen, another Mayo pianist who sat on my other side. Pretty princesses broke the ice between Stephen and Maisie. By the time daddy arrived, Maisie had made herself comfortable on the ground and invited daddy to join in play.

They played.

We listened to Jane.

Daddy grew weary of princesses just in time for a little patient with sparkly, red shoes to approach and show interest. Her mama prompted her with the words to say, the actions to take. The red-shoed girl wasn’t sure about these princesses, but she knew one thing. They were worth a stop to play.

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A woman arrived to sing. Stephen joined for a duet. Jane played on.

Before long, it was time for the little girl to go.

An elderly couple was our cue to go. They needed seats. We needed lunch.

Cafeteria food sufficed before a walk to the other side of Mayo for more waiting.

A concert! Who knew? We were looking for quiet, but instead found a crowd, cameras and Christmas carols.

We listened. And Maisie made fast friends with “grandma and grandpa” to my left. Wouldn’t you know, those princesses came in mighty handy. “Grandma” invited Maisie closer, wishing to see Cinderella, Rapunzel and Ariel. I do have to admit, however, that when “grandma and grandpa” left, the man down the way wasn’t so interested in princess play.

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Finally, back up to 7th floor for an afternoon of six, back-to-back appointments.

We decided there was no use for me to join Seth for appointments since we had Maisie, so he went in and we continued to wait in the main waiting room.

The receptionist noticed us waiting and brought Maisie a Santa coloring page, stickers and crayons. Maisie colored her page and the receptionist hung it high on the wall behind check in.

Seth returned. There was a LOT more waiting for his next appointment. He was called in at 2:50 for his 1:50 appointment.

Maisie broke out the princesses. She lined them on the ground, made castles out of leftover sticker backs, had them hop over pop bottles and jump on sticker-back lily pads, then lined them on chairs and tables. Those princesses did just about everything. Rest assured, they entertained more than just Maisie. A patient’s wife, an elderly couple and an amputee all smiled and enjoyed the afternoon entertainment.

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We waited and waited and waited some more.

Maisie played and played princesses until her heart was content.

YouTube videos presented an opportunity for a blanket break.

3:26. I’d lost my sense of purpose, but Maisie still claimed hers. She was back up, bringing smiles and joy to the receptionist, patients and caregivers.

3:46. Still waiting. The receptionist left. Maisie was hot and bored. We changed her into short sleeve. “Where’s dad?” she asked.

3:48. Received a text from Seth. He was done with eye photography and waiting for ultrasound examinations. The waiting room had cleared notably at this point.

4:13. Still waiting. In 3-year-old boredom, we’d moved to the other side of the waiting room for a change of pace. Standing now.

4:20. Still waiting. I caught Maisie jumping off a waiting room chair, so we’re wandering the halls now.

4:30. Still waiting. Camped in the hallway. No word from Seth since 3:48.

4:33. Text from Seth. He was back in the small waiting area and invited us to join him since it was quiet back there. We decided to take a chance at me and Maisie joining him for his last and most important appointment with “Dr. G.”

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4:43. Finally in “Dr. G’s” exam room.

This was the first time we’d ever brought a child into a visit with Dr. G. We weren’t sure how it’d go, but it went swimmingly well.

Dr. G arrived. He got straight to business. “You’re doing very well,” he exclaimed. “The CT scan is clear, the tumor is shrinking.” He gave Seth a hug and joked “So what are you doing here?!”

Dr. G met Maisie and noticed her bag of Princesses promptly. To my surprise, he even gave Princess Ariel a whirl, picking her up, gliding her on the floor, and bringing her outside the exam room to show a colleague in the hallway.

He returned in a flash, gave Maisie her princess, and got back to work. (As the mom, I was delighted and relieved to know our daughter wasn’t a burden in this typically very serious examination room.)

Dr. G took a second look through the eye photography, and a first look through the ultrasounds.

Tumor was initially measured at 4.8 mm in January 2015.

Down to 4.1 – 4.3 mm in August 2015.

Tumor measuring 3.8 – 4.0 mm today, December 14, 2015.

A 20% REDUCTION in tumor size since initial diagnosis nearly 11 months ago.

Dr. G was pleased. The tumor continues to shrink. He’ll see us again in EIGHT months. EIGHT MONTHS. Wow. If that’s not a sign of good news, I don’t know what is.

Thanks, y’all, for following our journey through my husband’s eye cancer. I won’t be writing with updates again until our next appointment in August 2016.

So long, farewell. May health and peace be with you in 2016.

pinksig

 

 

  1. Tom Baunsgard says:

    Great News and a really nice post Amy! Blessings Abound! This good news is a wonderful Christmas Gift!

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