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Walking

On By HschichieIn blog8 Comments

I write to you today with a head full of introspection and gratitude. Bear with me as I pontificate a bit. 🙂

It’s always a funny thing, driving onto the Anschutz Medical Campus.

For our family, this place holds a lot of history.

This is where Samantha received so much of her care. It’s where brilliant doctors tried to understand a little girl’s complicated mitochondrial disease and where we learned words and acronyms we never wanted to know.

Years later, this is where Ryan came for answers and care as mitochondrial disease began taking more and more from him.

And now, it’s where Cynde is fighting cancer.

So yeah…driving onto this campus hits a little differently for me.

Anschutz is a busy hub of people who are really sick. Behind almost every window is a family waiting, hoping for good news, sitting beside someone they love or trying to figure out what comes next.

But that’s only part of the story.

It’s also a busy hub of researchers searching for answers to some of the most complex diseases — cancer, mitochondrial disease, ALS, epilepsy and so many others.

It’s a place where thousands of doctors, nurses, researchers, therapists, techs and caregivers come to work every day and say, essentially, Let’s see what we can do.

There is something incredibly hopeful about that.

Maybe that’s why I always feel a tad nostalgic, weepy, hopeful and proud when I drive onto Anschutz.

Our family has experienced some of its hardest days here.

But we’ve also experienced extraordinary care here. We’ve watched people fight like hell for the people we love. We’ve benefited from science, research, medicine and people who have devoted their lives to making someone else’s impossible situation a little more possible.

Yesterday, they did that for Cynde.

Cynde did not have a great night last night.

She had some nausea, it took a while to get her settled into her bed, and someone checked on her about every 15 minutes.

BUT…

It was so much better than having a terrible night because she was in terrible pain. Or because her vitals were out of whack. Or because, because, because.

A very complex surgery went well.

Today looks good.

And I am grateful.

This morning, they laid out a plan for her to do some walking.

I thought, Well, that seems pretty aggressive considering you pillaged her belly yesterday.

But who am I to judge?

Here is Cynde, walking the hallways less than 24 hours post-pillaging.

And Pops and I got to complete the puzzle.

And today I am so stinkin’ grateful.

Grateful for an amazing surgical team.

Grateful that Cynde decided, from the very beginning, to face this head-on. That she decided she could do hard things.

Rest with a good blankey post walk!

Grateful that Pops has a little spark back in his eyes.

I will not lie to you. This has been hard.

I am grateful for good friends, a good therapist and a good hubs who held me as I kind of lost it — as I said out loud that this was way too much for my family. Way too much for me. As I looked to the universe and pleaded for just a pause in the trauma.

Maybe that’s part of gratitude, too.

It doesn’t mean pretending the hard things aren’t hard. It doesn’t mean we aren’t tired or scared or sometimes really, really angry about what life has handed us.

Maybe it just means recognizing the moments when the weight gets a little lighter.

Cynde still has a hill to climb. This is the beginning of a new chapter, not the end of the story. Her body needs to heal. We still have more rounds of chemo ahead, and then we will reassess.

But today?

Today feels like we can breathe a little.

Kiss the Phews on their stinky heads.

Walk the dog.

Laugh a little louder.

Finish a puzzle.

And revel in the seemingly ordinary miracle of walking the hospital hallways less than 24 hours after a very complex belly pillaging.

Today, I am so stinkin’ grateful.

Thank you, dear Tribe, for continuing to walk with us. ❤️

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Update – everything went great today –

On By HschichieIn blog10 Comments

So to let you know, Heather is busy fixing dinner for the phews and the rest of us so she asked me, Popsi/Rick to do the update for Cynde. So, this will not be as great as Heather’s writing, and we wanted to get the word out.

Well, it has been a long day for all of us. We got to the hospital at 5:00 am to go through all of the presurgical issues and they wheeled her off to surgery around 8:15. We did hear much from the surgical team except periodic texts indicating they were doing the procedure. Heather and Bart showed up along with Cynde’s friends. Heather brought a jigsaw puzzle, so we passed the time away with the puzzle. It was good therapy for all of us.

Per Heather’s update, we talked to the surgeon/oncologist around 1:00 and the operative word for the day was optimal. She felt very good about the surgery, and it accomplished what she had hoped for. The next step was the Hyperthermic intraperitoneal chemotherapy, HIPEC. This was designed to destroy hidden cancer cells. This process lasted two hours, so we had additional time to work on the puzzle!

I received a call from the doctor around 3:30 that they were done with procedures and were taking her to the post op unit and Heather and I got to see her around 5:00. Cynde was wide awake and fairly talkative. At this time the surgical team had left so Heather and I gave her the summary and of course the optimal word was used. Cynde is much relieved this is over and was resting comfortably. She is waiting for her room on the surgical floor, and her pain is being managed. She is happy the surgery is over.

I decided to go home (Cynde insisted actually) to get a good night’s sleep and be ready for rounds tomorrow morning at 7:00 am with her doctor and team.

The only downside of the day was we didn’t finish the puzzle – not really a downside and we left it one the table for someone else to finish!

We’ll find out more tomorrow and will provide an update. Thanks for all of the well wished, prayers, words, support, etc.

Love

Rick

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Mid-Day Update:

On By HschichieIn blog2 Comments

Hello Dear Tribe:

We are six hours into this process, and things are looking good.

The surgeon came out and talked to us while the team was bathing Cynde’s abdomen in a nice, warm chemo wash. We have about two more hours to go before she is in recovery, but so far, so good.

Here is what we know…

Her cancer was pretty aggressive and had set up shop throughout her belly. The oncology team removed her ovaries, uterus, omentum, appendix and part of her large intestine. They also spent about an hour carefully looking for small tumors and zapping them with what I am calling their anti-tumor gun.

There are still a few tiny pockets of cancer cells that need to be evicted. We are hopeful the chemo wash today, along with her ongoing chemotherapy, will take care of those remaining areas.

How are we feeling?

Mostly, we are anxiously waiting for the surgery to be over and for Cynde to be safely resting in recovery.

But we also feel incredibly grateful that these first six hours have gone about as well as they could have. There were no unexpected surprises, and when we asked the surgeon how she felt about the outcome so far, she used one very important word:

“Optimal.”

Here’s to optimal.

We will take optimal ALL DAY LONG.

I will update everyone as soon as she is out of surgery and in recovery.

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The Waiting Game

On By HschichieIn blog3 Comments

Hi All:

This might be one of 3,627 updates by the time we get through today. 🙂

It is 9:10 in Denver. Cynde’s procedure started at about 8:20…and so we wait.

Hospitals are funny things when it comes to waiting.

We wait to go home.
We wait for answers.
We wait for the next step in the journey.
We wait for someone to walk through a door and tell us what comes next.

Cynde has done everything she could to get herself to this day. She made it through three rounds of chemo, TPN, countless appointments, scans, blood draws and more than a few bumps along the way. Today, her job is to sleep while an incredible surgical team does its work.

Our job is to wait. And love her.

Pops is doing okay. The nurse will be texting him updates from the operating room, and we will post as soon as we hear anything.

Thanks for waiting with us, dear Tribe. There is something incredibly comforting about knowing we aren’t sitting in this waiting room alone.

AND…if you want to text Pops, I’m sure he would love reading your good thoughts, prayers, inappropriate jokes, distractions and words of support. He probably won’t text back today, but I promise he’ll love hearing from you.

Here we go. ❤️

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Find Your Grail

On By HschichieIn blogLeave a comment

This is a big week for our family — and for you, dear Tribe, those of you who have embarked on this journey with us.

As we get closer to Thursday, and Cynde’s surgery, I promise not to leave you in the dark. I will consistently post updates here. I will let you know what I know.

And right now, I don’t know a lot.

Except for what I feel.

And that is that we are on high alert, waiting for Thursday.

Until then, there is life to be lived and moments to be had.

The family went to Spamalot yesterday. And when I say “the family,” there were about 20 of us in the audience trying to “look on the bright side of life,” searching for a shrubbery and keeping an eye out for murderous rabbits.

Ryan loved Monty Python and the Holy Grail.

As his disease progressed, Ryan’s speech could be pretty bad at times. He had a “talker” that helped him communicate phrases and needs. When he went into hospice, he asked the speech therapist to program it with phrases specific to palliative care.

His favorite was a button quoting The Holy Grail and “I’m not dead yet!”

He also had a button that said, “Ask my sister,” meaning me.

The button had a picture of a nun.

As in sister.

And if you know me…well, that sister/nun button was amazing.

It’s been six months since we lost Ryan. My lovely SIL decided we should celebrate and remember Ryski by going to Spamalot.

I think the timing was perfect.

The musical is completely silly, but tucked among the killer rabbits, Knights Who Say “Ni!” and general absurdity is a message that resonates:

Find your grail.

Last week, I sat in my therapist’s office and told her that nothing in my life feels solid or predictable right now.

She asked me what my anchor was.

I thought for a second.

“Walking the dog and swimming.”

“Do that,” she said. “And make it non-negotiable. Find a way to walk or swim every day. Make that your anchor.”

I’ve thought about that a lot.

Is swimming and walking the dog an anchor or a grail? Do I anchor or do I search?

Or maybe an anchor keeps you grounded while you search for whatever comes next.

Or maybe you start with small things that keep you tethered while everything around you feels uncertain.

Walk the dog.

Get in the pool.

Put one foot in front of the other.

Just make sure you don’t float away.

Or maybe I am thinking way too much about Spamalot.

But as we move into a big week, all of us are searching for that next step.

We celebrated Cynde’s birthday yesterday.

Before she blew out her candle, she looked around at all of us with resolve and said:

“You all know what I’m wishing for this year.”

We do.

And perhaps that is our grail right now…..a successful Thursday.

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Next Steps

On By HschichieIn blog1 Comment

Happy Friday, dear Tribe!

Please forgive another quick update, but I wanted to put everyone’s minds at ease so you can go enjoy the weekend. ❤️

We got good news today.

The surgical consult went well, and Cynde’s team is happy and optimistic about how she has responded to this first round of chemo. Most importantly, they feel good about moving forward with surgery.

Surgery is scheduled for Aug. 27 at 7:30 a.m. at Anschutz Medical Center in Aurora. It is expected to take six to seven hours, depending on what the surgical team finds. The current plan includes a full hysterectomy, with the possibility of removing additional intestinal tissue if necessary.

After surgery, Cynde will spend some time in a higher level of care — somewhere between a traditional hospital room and the ICU — so they can keep a close eye on her. Her total hospital stay is expected to be about four to seven days.

Recovery will take some time. She won’t be able to drive for at least a couple of weeks, depending on how she is healing and whether she is still taking pain medication. We are also hopeful that surgery will allow her to begin transitioning back to a regular diet.

In September, she’ll begin three more rounds of chemo.

If that sounds like a lot, it is.

But here is the part we are holding onto: Her team is very optimistic. This is the path they hoped she would be able to take, and they believe this is the best treatment plan moving forward.

So tonight, we are grateful. Grateful the chemo did its job. Grateful there is a plan. Grateful for an incredible medical team. And incredibly grateful for all of you who continue to surround Cynde and Pops with so much love.

One step at a time.

And remember…

We can do hard things.

Much love ❤️

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Waiting for Answers

On By HschichieIn blogLeave a comment

Good morning, Lovely Tribe —

This post will be a little short.

The last round of this first series of chemo went well. Cynde is feeling a little weak, but she is in great spirits and continues her mantra: “I can do hard things.”

She had a CT scan on Wednesday to see how the cancer has responded to chemo and help determine what comes next. She and Pops meet with the oncologist today (Friday), and I’ll update this page as soon as we know more.

For now, she has both a surgery date and another chemo appointment on the calendar. Which direction they go will depend on what the scan shows and what her oncologist recommends today.

All is good. Pops is fed. And we continue to live by the saying, “No news is good news.”

So, for now, we wait.

Fingers crossed for a positive report today. ❤️

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Sometimes You Need an Ugly Cry

On By HschichieIn blog1 Comment

Sometimes you need a good cry.

Not a tear or two that you quickly wipe away, but the kind that steals your breath. The down-and-out, ugly cry.

I’m a big advocate of the ugly cry.

Because life doesn’t stop. Laundry still needs to be done. Meals still need to be made. Bills still need to be paid. The dog still needs to be walked.

Meanwhile, grief waits patiently.

It has a funny way of showing up when you least expect it.

Lately, I’ve been walking my brother’s service dog. I love that dog and all of his opinionated little ways. He’s the slowest walker on the planet, stopping at every mailbox, light pole, stubby tree and random rock to investigate which dog came before him. Every stop requires careful consideration and, naturally, a signature mark of his own.

It can make for a very slow walk.

So I listen to music.

And sometimes, I cry.

Spotify has an uncanny ability to notice the one song that hits you right in the heart, then fill your playlist with ten more just like it.

Lately, that song has been Pink Skies by Zach Bryan.

There’s one line that undoes me every single time:

“If you could see ’em now, you’d be so proud.”

Most days it brings a tear or two.

The last few days…

It’s brought the ugly cry.

Because those words make me think of Ryan.

Last weekend, two of the Phews attended Camp Erin, a weekend camp for children and teens who have experienced the death of someone they love.

I’ll be honest—I have struggled with grief groups over the years. I wanted this weekend to be different for them. I wanted them to feel seen, understood and maybe even find a little joy in the middle of something so hard.

In true Phew fashion, they did exactly that.

They connected with their counselors. They played a lot of basketball. They drummed until their arms were tired. They laughed. They made friends. They were even interviewed by Jeremy Hubbard from FOX31. Bereavement camp hosts more than 50 Colorado kids to help them cope with grief

Watching the clips and hearing about their weekend filled my heart in a way I wasn’t expecting.

Because they are growing up.

They’re becoming remarkable young men.

Kind.

Funny.

Thoughtful.

Resilient.

If you could see them now…

You’d be so proud.

Nice job, brother.

You can find out more at: Shimmering Wings – Shimmering Wings Camp Erin-Denver

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Forward

On By HschichieIn blog4 Comments

Franklin D. Roosevelt once said, “There are many ways of moving forward, but only one way of standing still.”

Forward looks different these days.

Sometimes it’s healing. Sometimes it’s better lab results. Sometimes it’s walking the dog or having lunch with friends.

Forward isn’t always dramatic. Sometimes it’s simply finding a little more normal in the middle of the storm.

On Monday, Cynde will complete her third and final round in this first set of chemotherapy. The second treatment went really well, and we are incredibly grateful for anti-nausea medications and TPN, which continues to give her stomach the chance to rest and heal.

The nutrition pump is giving us good news, too. Her infusion time has been reduced from 18 hours a day to just 12, and her team adjusted the formula to provide a little more protein and calories.

The pump still has a personality of its own. It can be a bit persnickety, demanding attention with the occasional beep that always seems to happen at the least convenient time. But we are so thankful for what it makes possible. Without TPN, this journey would look very different.

Forward.

After this round of chemo, Cynde will have another CT scan so her medical team can see how well the treatments have worked. From there, they’ll begin planning surgery, with the extent of the procedure depending on what the scan reveals.

At her last oncology appointment, the doctors shared that her blood work looks really good and the chemotherapy is doing exactly what they hoped it would.

Nice work, Chemo.

Life, thankfully, continues alongside doctor’s appointments and infusion pumps.

Both Pops and Cynde have been reconnecting with friends. The photo above was taken during a lunch outing where Cynde was able to enjoy real food—a milestone that felt worth celebrating. She has also embraced a new hairdo thanks to a good wig and a great stylist.

Forward also meant taking Ryan’s service dog, Coulie, out for a walk. As soon as Coulie saw the walker, something clicked. He slipped right back into service dog mode, as if no time had passed at all.

Dogs remember.

The rest of us are moving forward, too.

The Phews are making the most of what’s left of summer, although it’s hard to believe school starts in just a couple of weeks. Nothing says “moving forward” quite like watching a passel of teenage boys wrestle in the pool, consume second and third breakfasts, or argue over the best NFL team. Looking back at where this summer began and where we are today is almost mind-blowing.

We know there is still surgery ahead. There are still unknowns.

But today, we celebrate forward.

Because forward doesn’t always mean you’ve reached the finish line.

Sometimes it simply means you’re still moving.

And right now, that’s more than enough.

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To Courage:

On By HschichieIn blog1 Comment

This weekend we finished our 17th year riding in the Courage Classic. For those just tuning in to our journey, the Courage Classic is a two-day bike ride benefiting Children’s Hospital Colorado. We started riding when Samantha was 3 years old, and Children’s Hospital Colorado became our second home. The doctors there never stopped fighting for her. They later cared for Ryan, and today they continue to care for families living with mitochondrial disease. Every mile we ride is our way of saying thank you. The team grew into a consistent top-ten fundraiser and to date, we have donated over $1.5MM to the mitochondrial clinic through this ride.

The ride is not for the faint of heart! The first day is 80 miles through the Colorado Rockies and climbing three passes. It’s a beautiful, emotional ride that I did not train for this year…..at all.

In fact, I decided to sign up three weeks ago. On Friday, I dusted off my bike, removed the Courage Classic tags from last year, and headed up to Copper Mountain for the ride. I had no expectations and made the comment that we were kind of ‘limping’ through this year’s ride.

If I’m honest, our whole family has been limping through this year.

I was greeted in Copper by dear friends who surprised me for the weekend. As I was navigating through the parking garage, there they were, in full force, in full support, in full surprise. Me? Shocked and Grateful…..good friends are the best.

Saturday was a charged day. It was Samantha’s birthday; the climb was up Vail Pass. Did I mention that I hadn’t trained? Suddenly my lack of expectations turned into anxiety over whether I could still ride a bike.

And I started off. I listened to the U2, Joshua Tree playlist as I climbed, one of Ryan’s favorites. Despite the fires in the area, the morning was clear, the mountains enveloping, and the wildflowers were beautiful, and I was reminded once again how lucky I am for this time on this earth.

I thought of Ryan and his love of this area, Copper, Vail, Vail Pass, the Gore Mountain Range. I thought of Samantha and who she would have been at 20 years old. And I thought of Cynde, fighting her fight. I reminded my legs to stop complaining. My lungs to settle down and just breathe. There are harder climbs in life than Vail Pass.  

I kept riding, down Vail Pass, into Vail and onto Minturn. Mom and Jim met me back in Vail for a much needed, much appreciated SAG wagon back to Copper.

Later that afternoon, Dad, Cynde and Hubs joined us in Copper. We sat together in the sunshine talking about exactly the kinds of things families never imagine they’ll discuss over a post-ride beer: cancer, the death of a son, Samantha’s birthday, what she might have been like at 20, and Jim’s knee replacement.

I looked at these amazing people I call family, who joined me for the Courage Classic, and the resounding word I came up with for this group is appropriately…….

Courage.

For all that we have done.

It takes courage to shave your head.

It takes courage to bury a child.

It takes courage to get up the next day and face the world.

And to face the world with a sense of positivity, clean underwear, and teeth that are brushed.

It takes courage to be present. To laugh. To be vulnerable. To embrace others. To ask for help.

My friends joined us and remarked that this was a group that had divorced, forgave, embraced each other, and were now sitting around laughing and drinking Aperol Spritzes.

I remarked that the Aperol Spritz is the most welcoming of summertime cocktails and, of course, everyone should be friendly when an Aperol Spritz is in your hand.

But really it is more than that.

That at the end of the day, it was about Jack, it was about Samantha, it was about Ryan, and somewhere among all of this tragedy, it is about hope and Cynde and this terrible diagnosis.

And that is what we do. And it does take courage. And yes, this weekend was better, so much better than I ever thought it could be. We even got a great shout out from the Children’s Hospital Foundation:

Thank you, dear tribe.