Remember, Remember the 5th of November

Note from John: This is the story of my friend, and the Head Coach at Bair Knuckle Strength, Sarah Dziomba. Everything below this, is in her words, and she can be reached at: Sarah@BairKnuckleStrength.com

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Remember, Remember the 5th of November

To say 2017 has been an incredible year for me and my family would be an understatement.

• New job location? Check!
• Plan a wedding? Check!
• Buy a house and move from the city to the suburbs? Check!
• Meet my niece? Check!
• See my brother, sister-in-law, and nephew for the first time in almost four years? Check!
• Get MARRIED? Check!

Me and my husband, George

(photo: Lauren Allmond Photography)

And here we are.

It’s November.

I turned 33 last week, the holidays are coming, and a new year will soon be upon us.

Crazy, right?

Time surely does fly especially when you take on the world. But every year as November begins, I slow down. I stop. I stop to remember my past. My history. Or as I like to call it…my HERstory. Definition: all of the experiences that make me, ME!

Why, you might ask, is this time of year, specifically this year so significant?

You want the whole story and nothing but the story?

Well here it is…

Baby Sarah

I was born on October 27, 1984 at 10:04am.

Six weeks early and already a troublemaker; Heart murmur, jaundice…I wasn’t just going to enter this world without a peep!

No way!

The world needed to know Sarah Lynn Dziomba had arrived!

The doctors at Yale New Haven Hospital took great care of me and got me well enough to go home.

Then, a few years later, all hell broke loose as Mom and Dad gave me a brother!

‘Hiding’ out at Grammy and Gramps’ house with Justin

That would be Justin.

He’s funny, wicked smart, and super talented.

He lives in Arizona where he works as a chef and has another super cool title…DAD!

I am lucky enough to be the auntie to two super incredible kiddos, Jackson and Phoebe. They melt me.

Jackson and Phoebe. Told ya…MELT!

(Photo credit: Sunday Afternoons Photography)

Another huge part of my childhood and a vital piece of my life today is dance.

I started dancing at around three years old and haven’t stopped since.

I learned from the best, traveled the country, and have performed in some of the coolest venues.

My training at Luis Pabon Dance Arts Center and Temple University helped me find my passion for performing and for teaching.

I am an athlete and an artist because of dance. How cool is that?!

My first recital, Pinocchio! 

Growing up in southeastern Connecticut was awesome. Snowy winters, hot summers, picture perfect autumns.

The autumn leading up to my eighth birthday was different. I was seven and starting third grade. I had the best third grade teacher at our school, Mrs. Gardner (and you are lying if you think otherwise and you know it!).

Everything seemed great…until it wasn’t. I got strep throat after just the first few weeks of school. YUCK! Then I fell on the playground and tore up my shins. OUCH! When neither the strep throat or the bruising went away, my Mom started to worry.

Me and my beautiful mom!

One pediatrician visit and some blood draws later, “Low platelet count,” said Dr. Lavoie. He wasn’t convinced that was all there was to it. Off to a pediatric hematologist we go. What followed was the longest few weeks of our lives.

Finger sticks. Blood draws. Bone marrow aspiration. Shots. Transfusions. More finger sticks (which meant more of me hiding out in bathrooms and closets). A potential diagnosis. More transfusions. And finally, a bone marrow biopsy.

And there we have it folks, a diagnosis!

APLASTIC ANEMIA.

What the hell is Aplastic Anemia you ask?

Well, I’ll tell you.

According to Aplastic Anemia and Myleodysplastic Syndrome (AAMDS) International Foundation: “Aplastic anemia is a rare disease in which the bone marrow stops producing enough blood cells. Any blood cells the marrow does make are completely normal, but there are simply not enough of them to serve the body’s needs. Aplastic anemia can be moderate, severe, or very severe. People with severe or very severe aplastic anemia are at risk for life-threatening infections or bleeding. With prompt and proper care, most people who have aplastic anemia can be successfully treated. The only cure for aplastic anemia is a bone marrow transplant (BMT).”

But how did I get it?

We don’t know and never will! Seventy five percent of cases of aplastic anemia are idiopathic, meaning they have no known cause.

Now we have an answer: severe idiopathic aplastic anemia, but what do we do next?

Step one: Send everyone off to Yale New Haven Hospital (back to where it all began. Ironic? I don’t think so).

Step two: find a donor, we must! Get everyone HLA (human leukocyte antigen) tested stat!

• Brother (most likely a match)? NOT!
• Mother? NOT!
• Other relatives and friends? NOT!
• Father? DING DING DING! We have a winner!

Me and my handsome father

**Now get this: Everyone inherits two sets of chromosomes containing HLA genes, four genes per set. One set comes from their father and one from their mother, for a total of eight genes. There is a one in four, or 25 percent, chance that any brother or sister will have inherited the same two sets of HLA genes as the patient. For a parent to be “matched” with his or her child, both parents must, by chance, have some HLA genes in common with each other. It is very unlikely, about a one in a million chance, for two unrelated individuals to have the same HLA genes in common, and there is only a one in 200 chance that a parent and child will be HLA matched (from UCSF Benioff Childrens Hopsital).

Confused? I’ll break it down.

It is incredibly rare that a parent and a child will be enough of a match to perform a successful transplant. One in a million and then some, basically. Miraculous, if you ask my family.

My doctor at Yale was the one and only Dr. Joel Rappeport. When I met Dr. Joel, I wasn’t quite sure what to think. He looked like he was a day out of a week long bender. But his bender was saving lives. A pioneer in the field of bone marrow transplants, Dr. Joel always had bags under his eyes, messy hair, a wrinkled shirt, and a cup of “cart coffee” in his hand. He was the director of the BMT unit at Yale.

We put all of our trust in this man. I was so beyond sick during most of this period that I don’t remember much. What I do remember was Dr. Joel’s honesty. He wasn’t going to sugar coat it and he surely wasn’t going to lie about it. Things were going to suck for the interim.

Then he promised me that he would take the last dose of the most vile medication I would be prescribed, on the day I was going to be discharged (forward thinking and positively so…trying to shine some light at the end of our tunnel).

And so we began our journey…the day after my eighth birthday I was admitted.

Happy Birthday to me!

Me in my bubble room. No hair. Swollen from steroids. Hooked up to who knows what. Probably getting ready to play Nintendo or do a crossword.

Pre-transplant preparation included: placing two Hickman/Broviac catheters in my chest to avoid needle sticks for transfusions and blood draws. Then wiping out my immune system so the transplant has a better chance of taking with intense chemotherapy. In one weeks time, I was given the amount of chemo that a cancer patient would receive over the course of weeks or sometimes months.

Every day started with a carefully constructed and choreographed regimen of medications, testing, bathing, ointments, etc. to ward of any potential infection. The days between admission and Halloween of that year do not exist to me. Like I said, I was sicker than sick.

Then came the transplant.

On November 5th, with Dad under general anesthesia, his bone marrow was drawn from the back of his pelvic bone. The marrow was treated and prepared for transplant. This is what was going to save my life. When it arrived to my hospital bubble (oh yeah, I lived in a super controlled isolation room the whole time…plastic curtain, masks, gloves, and all…No wonder I still don’t like the movie E.T.) I remember thinking, “that’s it?” It looked like any other blood transfusion I had gotten. I was hooked up and Day Zero had officially begun. Now we waited.

Every morning, blood was drawn to see if baby cells were growing and to see how my new immune system was developing. After x days, baby cells turned into fully functioning cells and my blood count numbers kept rising. I kept up with all of my preventative measures, including that vile medication Dr. Joel prescribed. I spent Thanksgiving at Yale that year and shortly thereafter was deemed healthy enough to be discharged. My new bone marrow was thriving! I was getting healthier and stronger and most importantly, I wanted to be home for Christmas.

Christmas is coming! Hats and bandanas were my favorite. 

Getting out of the hospital came with a big catch. I could go home but had to remain in a controlled isolation system. I was not going to be able to return to school for the rest of the year. It also meant I had to avoid certain foods (kosher hot dogs and as much home made meals as possible, nothing raw, and so on.)

Mom and Dad had to keep everything clean all of the time, and if I left the house I had to wear a mask and gloves. YAY! Well, thankfully the amazing third grade teacher I mentioned would visit everyday after school to tutor me so I wouldn’t have to stay back a year.

And my dance studio would send me videos so I could practice at home. My community put on fundraisers to help us financially as both my parents were laid off from work during that time. I would go back to Yale for weekly checkups, then biweekly checkups, then monthly checkups for the next year.

Me and Justin enjoying being home together. He was my cutest cheerleader during that time.

After a year of thankfully no complications, I was deemed CURED.

My hair grew back (curly for a while as you can see), I could start going back to school and dance, and wouldn’t have to wear a mask and gloves in public any more.

My visits to Yale would continue monthly and as I continued to thrive, the time between visits became longer.

After that first year my family threw a big party to celebrate because surviving all of that is worth the celebration.

Dancing with my Dad at our Party

I can say with all the gratefulness in my heart that I have had no complications in all of my 25 years post transplant. Do I worry if I feel run down? Sure. Does Mom still panic if she sees a bruise? Yep! The long term effects of the chemotherapy, medications, and transplant are still unclear. Knock on wood I get to keep my good health for as long as I live. I’m one of the lucky ones and I make sure I life every day for those who lost their battle.

So what’s the point of all of this? Why did I write this? Why now? Why right now?

Twenty-five years ago we weren’t sure if I would see nine years old…let alone 33. We weren’t sure if I would go to high school or college. We couldn’t even dream of me getting married. but here I am. Celebrating my 25th re-birthday with my incredible family. I have two jobs that I love, a beautiful home, and a husband who is my best friend.

Me and my best friend

(Photo: Lauren Allmond Photography)

I don’t write this for sympathy. Most people don’t even know I’ve been through what I have because I don’t talk about it. I don’t advertise it. I never wanted to be labeled as different, or special, or referred to as “that sick girl.” I just wanted to be me. And I still just want to be me.

The girl who loves hard, works her tail off, has pretty much always had bangs, watches football and yells at the TV, eats chocolate, drinks wine, loves cats and dogs, wears funky socks, and dances to the beat of the songs in her head.

I write this as a reminder that life is precious and fleeting. I would rather make 110 mistakes than regret not doing something because I was scared. Move to a new city. Change jobs if you are unfulfilled. Cut your hair (trust me, it grows back). Leap and fall but always get back up. Don’t take yourself too seriously and for pete’s sake, HAVE FUN.

I also call on you to change your way of looking at others. Try not to judge a book by its cover. You have no idea what story lies inside. In today’s crazy world it is increasingly hard to be soft. It’s easier to build a wall and become hardened.

I implore you to stay soft.

Stay open.

Stay curious.

Don’t shut others out because they are different. Step out of your comfort zone and work towards acceptance. Acceptance of others and acceptance of yourself. I am blessed to have developed a small group of true friends and a larger group of incredible people that help me be brave. That help keep me soft.

Birthdays aren’t just birthdays for me. Holidays aren’t just holidays. My wedding wasn’t just a celebration of our love. These events are celebrations of LIFE. And we only get ONE! Each and every day is a gift and should be lived as such.

Trust me, when you stare down death and smile back at it…you’ve won.

(Photo: Lauren Allmond Photography)

Sincerely,

Sarah Dziomba