A glimpse of Adri’s battle against SMA

The other day, I was talking to my friend Joanne from Colorado.

We worked together when I first moved to Denver in 1998, and we remain friends.

She asked me to describe our home and our neighborhood here in Peru so she could have a sense of our life now.

She told me that she pictured us living in an adobe house with lots of open space.

I then began to explain the chaos that is Lima; 8-10 million people crammed into about 1,000 square miles (about 40 miles north to south and 25 miles east to west).

After I tried describing our home and neighborhood,  Joanne suggested I post more pictures.

I then realized many of you might enjoy seeing a little bit of our lives instead of just reading about it.

So, here goes.

Unique battles, common hopes

Every child stricken with spinal muscular atrophy (SMA) has a unique battle.

Some need a tube to eat or breathe…….or both.

Some need help maintaining a seated position.

Others can’t sit at all.

Some need help holding their head up straight.

Their brilliant minds are trapped in a weak body that’s getting — or will eventually get —  weaker.

What’s not unique is every victim’s and every family’s hope for a cure.

A treatment within the next few years that will give every patient greater strength and mobility, the ability to experience more out of a longer life, and quite literally, the chance to hold their heads up high.

Every Wednesday and Friday morning, we take Adriana to physical therapy at an institute called Arie, which we were able to find through Gaby’s friend.

Each session is a race against the clock to find a cure. To keep her body and her muscles moving so that when we have a treatment, she has a stronger starting point to build her body back up.

Some children face tougher battles than Adri, and others face easier ones.

All I know is that all these kids are much stronger than I’ll every be.

The clips

Here you’ll see, through a series of video clips, a little bit of Adri’s battle.

I tried to keep each video under 30 seconds.

The whole process takes a couple of hours, round trip, but I know you don’t have time to witness all of it in one sitting.

But hopefully you’ll enjoy seeing a few clips of how Adriana is progressing.

Her therapists are happy with her progress, and of course, so are we!

Enjoy!

GETTING THERE: These first clips show you our commute to therapy:

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GETTING READY: These next clips show Gaby getting Adri ready for therapy.

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THE THERAPY: Therapist Zeida takes Adri through various exercises designed to help her maintain her strength.

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Ok, Yoga, Make Me Healthy Again

He who is completely without stress exists solely in works of fiction.

Since our move to Lima (and for quite sometime before), stress has occupied a large part of our lives.

Gaby’s cancer, Adriana’s diagnosis and the transition to a new life are all the perfect setting for stress to plant its seeds and grow.

With help and prayers from you, our family and friends (and strangers), we’ve overcome the hurdles so far!

A new realization

Yesterday was a wonderful day, as some of you may have read!

Adriana experienced preschool for the first time, and we glimpsed the bright future we know she has ahead of her.

I came to the realization, however, that if I don’t take care of myself physically and emotionally, I risk the chance of not being around to see our kids grow up and have their kids.

I risk the chance of not seeing the cure for SMA and Adriana’s first steps.

Emotionally, I feel like I’m in a very good place. As I mentioned, your prayers and support — and my faith in God, although tested all the time — have strengthened me!

Physically, though, I’m nowhere near my happy place. And, I seemed to have lost the directions to get back.

I’m not in horrible shape. In fact, I just had some bloodwork done here in Lima, and my numbers are very good. Better than they were in the states.

[Aside]

Secretly, I was hoping they’d be worse so I could make the excuse that we need to move back home, for the sake of my health. (Only kidding………..sort of.)]

[End of aside]

My body, however, is one big, tight ball of stress. I’m in constant pain.

I know what you’re saying: “Your getting old.”

My response? “Shut up!”

Photo on 5-29-14 at 11.48 AM

My butt should be much higher, back straighter, and I think my feet should be flat on the ground. I”m going to need more than 30 days.

Anyway, it’s time to make things right……for me and my family!

So today, I started a 30-day yoga challenge on YouTube.

Please send me any prayers, positive thoughts or anything else you can muster up to help me see it through!

Photo on 5-29-14 at 11.47 AM #2

My lifted leg should be pointing toward the ceiling. Yes, that’s right, I said ceiling.

Day 1 realizations

  • My downward-facing dog pose (which should look like an inverted V) is an embarrassment to the practice of yoga (see accompanying photo).
  • Every time the instructor says, “now if this doesn’t quite feel comfortable, try doing it this way,” she’s talking directly to me. Like she knew I’d be attending.
  • Sitting cross-legged on the floor is not supposed to be painful.
  • A quote from one of my favorite TV shows will be resonating loudly during this challenge: “My body doesn’t do that without booze.”

Wish me luck!

Are You Happy with Me?

Adri's Dress

Adri showing off her new dress

It’s easy for others to define you:

  • Special needs
  • Disabled
  • SMA child

It’s easy for them to paint a picture of your future:

  • You may stand
  • You may take a few steps
  • You’ll need a wheelchair

And though they hold no ill will toward you

They don’t have the privilege of knowing you:

  • Of hearing you laugh

    Summer Saturday

    A summer Saturday stroll

  • Of seeing you cry
  • Of watching your inquisitive mind work

Lately, you’ve been asking us “are you happy with me?”

As if there could be any response other than “more than you’ll ever know!”

Adri the Artist

Adri in art class

A Woman’s Strength

To say that my wife, Gaby, has been through a lot the last several years is a bit of an understatement.

Since her cancer diagnosis in 2010, at age 35, her life has taken turns it wasn’t supposed to.

Days after the devastating news, we found out Gaby was pregnant with Adriana.

gaby_candelarias_christmas 2010

Christmas 2010 with our “sisters” LeTricia and Monica! Gaby six months pregnant with Adri and just finishing first round of chemo.

The joy of having our second child was overshadowed by cancer.

We made decisions quickly.

Because Gaby was pregnant, she couldn’t risk the invasiveness of a mastectomy, so she decided on a lumpectomy.

Thankfully, she found the lump early – at Stage 1b – so Dr. Kercher, our surgeon, was able to remove it with great certainty that all the cancer was gone.

Then, Gaby had to decide on chemotherapy.

One doctor we visited suggested Gaby wouldn’t need it because she found the lump so early.

All other doctors recommended chemotherapy.

Ultimately, Gaby had to decide.

gaby_adri_easter

April 2011, a month after Adri’s birth. Gaby set to start round two of chemo in a couple of weeks.

And as she put it, “with two small children, I don’t want the cancer to come back.”

With the help of our friend Carinne, we found Dr. Virginia Borges at University of Colorado Hospital. Dr. Borges is a specialist in treating pregnant women with breast cancer.

In Dr. Borges, Gaby found a friend.

Gaby would go through chemotherapy while pregnant.

It would have to begin in the second trimester, after Adriana’s major organs had developed in the first trimester.

And the chemotherapy medication was different for pregnant women – nasty enough to kill the cancer, but proven safer for the baby.

Bit of irony there.

Gaby still had to decide whether to have radiation on the breast; but with the pregnancy, that decision could be held off.

So the plan was:

  • Dr. Kercher performs the lumpectomy.
  • At the beginning of the second trimester, Gaby would begin chemotherapy which would last until the beginning of the third trimester.
  • Then after Adriana was born, Gaby would go through another round of chemotherapy for another 12 weeks.
  • In that time, Gaby would think about radiation.

If she chose chemotherapy and/or radiation after the birth, she would have to stop breastfeeding.

She could also choose a mastectomy, which again meant no breastfeeding, but it also meant no radiation therapy.

It’s safe to say that Gaby had a few things to think about.

In the end, though, things did go according to plan:

  • Dr. Kercher removed the lump, after which she told me Gaby was “cancer free.”
  • Gaby started her first round of chemo at approximately week 13 of the pregnancy.
  • She gave birth to Adriana on February 21.
  • Gaby started chemo again in April, just before her birthday…….what a gift, huh?
  • Gaby then decided on a double mastectomy, which was performed six weeks after her last round of chemo ended.

Sounds simple on paper.

Even as I tap my memory to write this, I conjure up scenes of our life that I wish would die, but probably never will.

Gaby nauseous and vomiting – almost daily – first from the morning sickness and then from the chemo.

Gaby crying as we shaved her head…..her desire to enact some sort of control over what was happening by removing her hair before the chemo did.

The physical pain of her double mastectomy and the emotional pain, not being able to carry her children

I completely forgot – until now – about the intravenous fluids we had to give Gaby at home. With Gaby vomiting and unable to eat very well, it was important she received fluids. So I learned how to connect tubes to her port so bags of fluid would pass to her body.

During the lumpectomy, Dr. Kercher had inserted the port (which was used to feed Gaby the chemo) into a vein in Gaby’s upper chest. Instead of poking Gaby at each chemo treatment, they accessed the port.

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Summer 2011: celebrating one year cancer free with our friend Brenda!

I remember how happy Gaby was when they finally removed the port after everything was over. After all the treatments and surgeries.

She felt free…..like there was no longer a connection to the cancer that was once in her body.

That’s also the reason Gaby decided on the double mastectomy.

She didn’t want to let cancer have another shot at her body.

Not with two small children – and a husband – to raise.

As a man, I can only imagine the physical and emotional pain Gaby went through…..and at times continues to go through.

Sometimes I don’t want to imagine.

I always knew Gaby was strong. It was one of the things that made me fall in love with her.

But, I never knew just how strong she was until the cancer.

I never knew how strong her faith in God was and still is. It has strengthened my faith.

It’s the faith I’ve always seen in others…….our parents, aunts and uncles, close friends.

gaby_sfc_christmas 2011

Christmas 2011 with our small faith community friends! Their love and prayers helped us make it through it all!

But the selfish person that I am, I never found a reason to reach out to God. I had faced few adversities in life and never reached out for help, or worse, to thank Him.

But He’s the reason we’re still here, fighting every day.

The prayers, the undying love of family and friends, the acts of kindness are all signs of His presence.

In my weakness, which is ever present, I forget and turn away.

But when I take time.

When I stop complaining.

When I see my beautiful wife and children.

I turn back around, and He’s there.

Arms wide open, ready to catch me.

Finding Her Footing…on 4 Hooves!

I first heard about hippotherapy (or equine therapy) a couple of years ago from a friend of mine who uses it for her daughter.

facunda_adri_waiting_carrot

Adri waiting patiently for her hippotherapy session on Facunda…..with a couple of treats at the ready!

Experts use horses to incorporate a number of different therapies, like physical, occupational and speech therapies.

Hippotherapy also builds self-esteem as patients build confidence in riding and taking care of the horse.

We started looking into hippotherapy in Denver, but with our move to Lima, we never made it past the first step.

As luck would have it…

This past May, Gaby brought Adriana to Lima to stay with our family here while we got everything in order to move to Peru.

At the time, we were using physical therapy services at Arie, which I’ve mentioned in previous blogs.

facunda_adri with fernanda on Facunda

Fernanda Morey, director of ANADESI, working with Adri on Facunda (pronounced FAH-COON-DAH).

As luck would have it, Gaby’s sister Susy (Adriana’s godmother) saw a story about Fernanda Morey, a psychologist here in Lima.

Fernanda is director of the National Association of Equine Therapy and Integral Health, or Asociacion Nacional de Equinoterapia y Salud Integral (ANADESI). She founded the organization 10 years ago.

We weren’t here when Adriana first started hippotherapy, but as Fernanda describes it, Adri was like a lump of Jell-O when she first got on a horse.

She had no balance and her head would flop from one side to the other.

A 1,000-pound angel named Facunda

One of the reasons people use hippotheraphy is because a horse’s gait, or the way it walks, is similar to a human’s gait.

Facunda, the horse that’s been by Adriana’s side – or under her butt – for the past six months, has been Adriana’s legs. Facunda gives Adri the sensation of walking, and the warmth of the animal helps Adri work her muscles:

facunda_adri_laying on facunda2

Adri talks to Fernanda as she feels the warmth of Facunda. The Latin “Facunda” means “eloquent speaker” — appropriate, as Fernanda uses the horse to help patients improve their speech.

  • She works her head and neck as she fights to keep them upright on the horse.
  • She works her spine and core as she works to keep her balance.
  • She works her arms as she tries to hold the reigns or raises them to maintain balance.
  • She works her legs as she lightly “kicks” Facunda to keep her moving.

Fernanda and her daughter, who we call “La China,” ride and work with Adri.  For a couple of hours a week, they are Adriana’s teachers, protectors and motivators.

They ignore Adriana’s occasional whining and encourage her when she doesn’t want to do the work.

They know Adriana is strong, and they won’t let her quit.

Taking it a day at a time

Spinal muscular atrophy (SMA) is a cruel disease with no cure…….yet.

facunda_adri_santi_on steps

Adri and big brother, Santi, on the steps used to mount the horse.

A victim’s muscles become weak and waste away. It can become hard to breath, swallow and walk.

Adri has Type II SMA and hasn’t had breathing or swallowing issues – thank God.

Although she can’t walk yet, she’s doing very well.

She’s finding her footing!

We must continually motivate our little girl to work her muscles as often as she can and as much as she can, whether it’s at a therapy session, at the dinner table lifting a spoon or at the beach digging her feet into the sand.

Every day, we realize her strong will and potential are limitless.

She’s as strong as a 1,000-pound Facunda!

facunda_adri_fernanda_josephina

Fernanda works with Adriana on Josephina, another therapy horse.

New Year’s Prayer: Cure SMA

Every night, Adri’s big brother Santi prays to God that Adriana will “walk all by herself.”

Our New Year’s prayer is that, with increased awareness of spinal muscular atrophy, a cure will be found soon for all those afflicted with this terrible disease. Our hope remains strong!

Happy New Year from Adriana and Santi!

adri_HNY

santi_adri_HNY

May your 2014 be filled with love, good health and God’s strength to guide you through each day!

2014 Resolution: Lose the Hate, Not the Weight

Another year has gone by, and I find myself contemplating yet another New Year’s resolution. All too often, my goal is to hit the gym more or eat less crap.

Admirable goals, of course, but if I had the willpower, these lifestyle choices would already be part of my daily routine, and I wouldn’t need to make them goals.

Just last night – over Chinese food, no less – Gaby and I were devising a competition to see who could stick to their resolution longer. The winner would get a prize. We were brainstorming ideas:

  • “We could see who loses the greatest percentage of body fat,” she said. “Pass me the fried rice.”
  • “Or, we could see who exercises the greatest number of minutes in a month,” I countered. “Are you going to finish that fried wonton?”

We haven’t discussed what the prize will be, but I suspect it will be something along the lines of a 7-course meal.

Then, last night, as I was reaching for the Tums, I had a revelation.

How about a resolution around mental health?! I write about it everyday at work – the importance of a strong mind, a healthy mind!

I wrote in a previous blog about the anger and hatred I sometimes feel about Adriana’s disease and Gaby’s cancer. Plus, there’s the stress of starting a new life in Peru, finding a new job, keeping the kids (and us) healthy and fed, paying the bills, learning how to drive in Lima (I’ll write about that later), etc., etc.

Just writing about it now is giving me a headache.

So, along with my “get fit” resolution, I’m adding a “lose the hate” resolution.

Making room in your heart

I sometimes feel it’s easier to hate than to love. At least, it is for me. Love requires us to look past our faults and daily problems.  I’m too lazy, at times, to do that.

It’s easier for me to simply despise the customer service agent on the phone who knows nothing about customer service. Or, the doctor who makes us wait an hour, only to spend five minutes with us.

When our hearts are filled with hate, not much else can get in.

Love fights hard to get inside your heart, though. Like a child who runs away from home, but then returns, only to find the front door locked. The child pounds on the door, crying and fighting to get in. But sometimes there’s no answer….when the hate is too strong and fills your heart.

The locksmith is always close by, though, ready for your call. Ready to open up your heart so you can remove the trash – the hate – and make a clean start.

So many times since Gaby was diagnosed with cancer and then Adriana with spinal muscular atrophy (SMA), God has made his presence known….his loving presence that made its way, sometimes slowly, into my heart.

He’s blessed us with a loving family and friends who bend over backward to help us; compassionate coworkers who understand that family is more important than a job; wonderful doctors and nurses who listen (most of them); and therapists who don’t give up.

And so, my hope for 2014 is that I can appreciate more the things we have and complain less about the things we don’t; think more – before I speak; and replace the anger and fear in my heart with the love that’s been fighting for so long to get in.

I owe it to Gaby, to our son Santi and to our little fighter, Adriana!

[Adriana with her therapist Michael. Location: Arie in Lima Peru]

Happy New Year to all!

We hope your 2014 is filled with love and blessings…….and a few fried wontons on the side!