Moms Deserve the Best

This is my first time writing in months since Viv passed away. I’ve been avoiding it because I knew it would bring waterworks - and it did. Scrolling through the pictures trying to find the best ones brings up so many memories. Good times. Bad times. And everything in between. But as I was searching for pictures that highlight the “moms” in my life, I couldn’t help but notice how much collective love my children have received from three amazing women: Annie (wife), Joanne (my mom) and Mary Kay (Annie’s mom). We’re all lucky to have you.

Annie reminded me the other day how much better Father’s Day is for the guys. We get to enjoy nicer weather in June (compared to the snowfall we’re experiencing here in Cleveland in May). The guys get to go golfing for the day - and when we come back slightly intoxicated, hungry and tired - our wives don’t complain. The food is already prepared and the tv is tuned into sports (Sports! What’s that?).

Mother’s Day, on the other hand, kind of sucks if we’re being honest. Mom’s work harder than most dad’s when it comes to pretty much everything relating to kids. I’m not trying to gain brownie points here - this is the reality. Find me a dad that outworks my wife. Good luck! But this year we’re in quarantine. There’s no fancy restaurant to take our moms out for brunch. Instead, we have to attempt to make (or order) food and stick around in our houses. Houses that apparently don’t clean themselves. If you’re living in the midwest - the weather really sucks this weekend. So I don’t anticipate we’ll have a chance to enjoy anything outside. I’ll get to my proposal in a minute. You’ll start to see where I am going with this.

Mom’s deserve the best. Mom’s deserve a day (maybe two, maybe more) where they don’t have to change any diapers. They deserve a day that someone else does the cooking and the cleaning. They deserve to skip a day of responsibilities. Mom’s deserve so much more than dads and kids can deliver. But let’s try to deliver and let’s try to give them what they truly deserve.

Here’s my proposal to the guys and gals in my shoes searching for things to do for the moms in their lives: pick one day each month and make the moms know how much they mean to you. And remember: talk is cheap. Don’t just tell them - but show them. Give them the day off. Send them flowers. Buy them a cake. Do whatever you think they’ll enjoy and feel valued. It’s not that much to ask. There’s only like 7 months left this year. Do whatever it takes. Because they do whatever it takes for you.

To my wife and mother of our daughters: I love you. Thank you for being the glue that continues to keep us all together. We have not had a normal life, but you do so much each and every day to repair it and improve it. Our children love you unconditionally and I’m jealous sometimes to see the look on their eyes when they see you. You’re clearly their favorite parent.

To my mom: I love you, too. I was your only child for 7 years and I am confident I bring you more joy than the “others”. Haha. Thank you for always believing in me and pushing me to become the man that I am. If it wasn’t for you I would never have been prepared to love and care for my wife and daughters.

To my mother-in-law: Yes - I do love you! Haha. You raised an amazing group of children who clearly take after you when it comes to their love and passion (make sure Pete doesn’t read that part). Thank you for all you do to help take care of us.

To my grandmas: I love you Grandma J and Grandma Rosie. Thanks for being the true matriarchs of the family and giving all the women in my life a visual guide for how to truly be happy and loved.

Happy Mother’s Day!

Viv's Eulogy

On Saturday, January 23rd, 2016 Viv was born.

On Thursday, July 20th, 2017 Viv was diagnosed with a rare and aggressive cancer.

On Thursday, October 26th, 2017 Viv received a bone marrow transplant.

On Wednesday, January 22nd, 2020 Viv went to heaven.

In such a short time on this earth, Viv impacted so many and helped us in so many ways. We will never replace her. It was my duty and honor to deliver her eulogy on Monday, January 27th, 2020.

Here is my daughter’s eulogy:

• Before I get started, I would like to state a few ground rules inspired by Viv:

  • Number 1: Anything goes

  • Number 2: This won’t be a traditional funeral. Sorry Father Kiser. Viv wasn’t traditional and she did things her way. I’m here to do the same

  • Number 3: We hate silence. I realize that silence is a time to reflect, but during Viv’s lifetime we thrived on chaos and things like laughter, music and conversation keep us moving forward even when darkness drowned out the light.

  • Number 4: I’m borrowing a line from a family member’s eulogy, but it fits perfectly here: Viv never left anywhere fast. Saying goodbye seemed to last forever. So I’m not in any hurry and I hope you’re not either. 

  • Finally, Number 5: Let’s shake things up.

• Thursday, January 23rd would have been my daughter’s 4th birthday. Unfortunately she passed away 14 minutes shy of that milestone when she took her final breath. We were honored by so many who came to our home on Thursday to remember Viv and to sing her Happy Birthday. I realize this is unconventional, but let’s sing her Happy Birthday as loud and as uplifting as we can so she can hear it. Are you ready? “Happy Birthday to you. Happy Birthday to you. Happy Birthday dear Vivi. Happy Birthday to you!”

• When Viv was first diagnosed, we were devastated. We go through life with a blissful ignorance that typically doesn’t allow these types of premonitions to enter into our minds. Unfortunately for us and for Viv, cancer became a reality. It was at the time I wrote two speeches in my head: 1.) the speech I’ll give at her wedding one day once this is all behind us, and the second is the speech I’m delivering to you now.

• I’m not going to talk to you about all the suffering she endured over the past 2.5 years. By now, you’ve heard the stories and it’s well documented. I’m here to tell you a story about an amazing, fun-loving and charismatic young girl named Vivi Rose. 

• Viv was unlike any child we ever met. My wife and I are the most biased people in this room, but I’m sure some of you will agree how special she was. When she entered a room, whether it’s in our home, here on the grounds at Gesu, at the hospital or anywhere in-between, she owned the room. As a parent of 3 daughters, it’s easy to see what makes them unique and we always try to forecast their life, their profession and their personality when they grow up. 

  • Viv could have been a powerful politician. She was a glad-hander and made a point to speak with everyone, both kids and adults. 

  • She could have been a great business leader or salesperson. That girl negotiated her heart out and always ended up creating mutual compromises for everyone, but in the end she would always get what she wanted. 

  • She could have been a movie critic. She could tell you about all the characters and the music from the dozens of movies she loved to watch. 

  • She could have been a doctor. How many kids do you know that can functionally understand a hospital setting in the way Viv did? 

  • She could have been anything, but she was so much more and she accomplished more in her 4 years on this earth than I could have ever imagined.

• I asked some close family members to provide some short funny stories about Viv. I would like to share those with you now:

  • Viv was obsessed with muscles and assessing people’s strength. Her best gauge for this was squeezing your arms to determine how strong you were. She told her grandma, Mary Kay, that she wasn’t very strong because her arms are squishy. 

  • Viv was obsessed with money. But like most kids her age, coins seemed to carry a higher value than dollars. She told my dad “I don’t want your stupid dollars, I want your coins”. And he always gave her whatever she wanted.

  • Viv would mimic her aunts in an effort to be like the women she admired most. She would have “girl talks” with them, talking about boys, marriage and even kissing. She would watch Christine feed Josie and then sneak off to breastfeed her baby dolls.

  • One time, during the summer of 2018 we lost Viv. We searched all over the house and were freaking out that we couldn’t find her. We saw a group of neighbor kids across the street on Carroll Blvd, and there was Viv. Right in the middle. She had no fear and crossed the street by herself. We’re just glad no one called Child Protective Services on us that day.

  • Viv loved to go shopping. And the people that would take her shopping immediately regretted it once she began loading up the shopping cart with all the things she “NEEDED”. But she was always thinking about others and made sure to add stuff to the cart for her sisters and cousins. When my mother-in-law would ask her “Who is paying for all of this?” Viv would pull a few coins out of her pocket and take care of it.

  • There are so many stories and funny memories. When you have a chance, ask us to tell you more. They’re guaranteed to make us all laugh and feel better.

• In 4 years Viv brought so many people together. She cultivated a community of people from our family and friends, to our neighbors, to our Gesu parish, to medical professionals, and ultimately people from across the globe. In the past few days I’ve received messages from some of the patients and family members who met Viv while receiving treatment at Rainbow Babies & Children’s hospital. Their messages are all the same: “your daughter gave us joy and helped us to laugh and to smile during the most difficult of times.” That alone gives me comfort in knowing that she served a purpose during her time on this earth. But her purpose and her fight has inspired so many more. Plenty of parents come up to us and tell us how strong we are and how they could never imagine what we are going through. The truth - I don’t know if we’re strong or not. But Viv was and she made it easy. She never let her condition slow her down. She gave us all the hope we needed. She built this community for us because she knew it would be what we needed to survive and move on once she was ready to fly with the angels. And she was right. Because our strength was so dependent on her, and now that she is gone we need to lean on all of you to help us. Help us live. Help us pour our hearts into Harper and Quinn, Viv’s two amazing and supportive sisters. Help us to build a legacy for Viv to continue the purpose that she established. Help us to never forget, but to always remember and immortalize our daughter, Viv. Our biggest fear is people will forget. Please don’t let that happen.

• I’ve been talking a lot. We’ve all been crying a lot. Time to shake it up. I would like to call on a series of people and ask that they stand up when called. I’ll walk you through why you have helped us and then I want applause from everyone to let them know how special they are. Sound good?

  • First, I want to call on any member of the Gesu parish. Please stand up. Teachers, students, faculty and staff, parishioners. Please stand. Thank you. Thank you for making our family feel so loved and so welcomed. This is the greatest and strongest parish on the planet and I’d like to think that Viv helped strengthen it even further. They even called off school to allow everyone the opportunity to celebrate Viv’s life with us. Please give a round of applause for this group.

  • Next, I want to call any medical professionals to stand up. If you work or used to work in that profession, please stand. Especially the folks at Rainbow, Mac6, the PICU, Surgery, her Transplant team. Thank you for being some of the most selfless humans on this planet. Because of your contribution and care giving skills, you helped our family and my daughter in ways that we cannot even describe. Please give a round of applause for this group.

  • I’d like to call on anyone and everyone associated with A Special Wish - Cleveland Chapter. If you work there, volunteer, have donated, or attended any of their events. Please stand. This organization has changed our lives and helped us during the most difficult times. Their generosity and mission is something that cannot be measured. From the bottom of our hearts, thank you! Please give a round of applause. 

  • Next, I would like to single someone out for just a moment. Deb Straniero. Can you please stand? Just for a moment, by yourself. Sorry to make this awkward. Now, if you don’t know who Deb is. I’m sorry. But if you know Deb or “Mrs. Straniero” as she is commonly referred to by her TOPS students. Please stand up with her. Deb is a living saint and she is someone that has helped us more than she’ll ever realize. She’s family and she loved and prayed for Viv the same way we did. With passion. Please give a big round of applause for Deb Straniero. Thank you Deb, we love you.

  • Family time. If you are related to Viv in any way, please stand up. I don’t care if you’re a cousin, a 5th cousin, an aunt who is twice removed. Stand up. Even if you have some weird Cleveland way of saying you’re related. Just stand with us. 2nd to Viv, our family gave us their strength. They worked so hard, accommodated our crazy life, and poured their hearts and their souls into making Viv’s time on this earth the best it could possibly be. We would be so lost without you. Please give a big round of applause for our family. 

  • When I say your name, please stand up. Mary Kay, Pete, Mom, Dad, Christine, Anthony, Liz, Julie, Joey, Marc, Mary, April, Jake and Jessa. This core group of people has been VIVSTRONG with us since the very beginning. They have sacrificed so much. Worked so hard. And made life enjoyable. Without their help none of this could have worked. Please give a round of applause. 

  • Finally - Annie, Harper and Quinn. If you can, please stand. If you guys can’t tell, I’m the emotional train wreck. Annie has been our rock. Pete and Mary Kay, you should be overwhelmed with emotion to see how amazing your daughter has been for me, for Viv and for Harper and Quinn. We wouldn’t have survived without you. Harper - you’re the unsung hero of this story. You gave up so much so that we could give Viv the proper care and comfort she needed. You deserve so much more and we will give that back to you. We have a void in our hearts now, but we intend to fill it with more love for you and Quinn. Quinn - you were born into this mess. Annie was 8 months pregnant when Viv was diagnosed. Quinn - your goofy personality and passion for creating chaos has always been a welcoming distraction for us. Please give these three the biggest round of applause. 

• Thank you to everyone. I realize how ridiculous this sounds, but we are the luckiest and most fortunate family. It’s because of this community we feel that way. Please give one final round of applause for my daughter and let her hear it from heaven.

Rest easy, baby girl.

All About Viv

Writing is my best form of therapy. I’m alone. I can think. I can simply let my thoughts form words through a keyboard. I was never passionate about writing, and admittedly I don’t think I could land any editorial gigs if my life depended on it, but when it comes to relieving stress it’s helpful to me. In addition, I feel like this form of therapy is better than alcohol or drugs. Not all the time, but most of the time. Okay, I won’t lie. I’m drinking bourbon while writing this.

The last time I wrote was shortly after Viv was re-admitted into the hospital in September 2019. The title of that blog post is “Keeping the Faith”. If you haven’t read it, please do. People told me it was helpful for them to think about how precious life can be and to not take things for granted, but to rely on faith and live in the moment. I’m glad my writing can help others, not just me. But it’s times like these that I need to remind myself to read that blog post again. And again. The past several months haven’t been easy for any of us. Especially Viv.

Before I dive into a recap of the past few months and provide a status update on her situation, I’d like to address something else. Today, Annie commented on something that hit deep in my heart. As Viv’s parents, we’re biased and think she’s special and unique, just like any other parent out there when boasting about your children. But she REALLY is unique. And Annie commented that so many people that follow her story have never met her - and might never have the opportunity. She’s really difficult to summarize with just words, but I’ll do my best. And if the words aren’t good enough the videos should suffice.

---

Who is Viv? Well, she’s almost 4. Anyone else out there have a 3 or 4-year-old? Girl? You know what I’m talking about. But more than that, she has her extremes.

On one extreme she can be a total pain in the ass. And it’s not always medical-related - most of the time she just wants her way or decides things are too boring so she needs to stir up controversy and chaos. We have two other girls and you would think Viv is an only child with the way she thinks and acts.

But on the other extreme, she’s the sweetest and most caring child a parent could hope for. Today, on three separate occasions, she paused what she was doing to say “Mommy, I love you”. And she didn’t even ask for anything in return. I tried like hell to get her to say the same to me - but no luck. Maybe tomorrow…

She’s smart. Not book smart. Not even close. But her emotional intelligence is on another level. She understands and empathizes with kids, adults, doctors, teachers, etc. I’ve never seen a child her age interact so well across age gaps, genders, ethnicities, and disabilities. She’s an amazing judge of character as well, but she generally likes anyone that gives her some attention. Which is a lot of people these days.

She isn’t afraid. And I’m not talking about cancer… She’s still somewhat ignorant to the whole situation, which is fine. But she really isn't afraid of anything other than being alone. She’s the first kid to get up and sing or dance. She’s the first kid to greet a visitor or say “hi”, “please”, “thank you” to an adult. She’s willing to take risks and try new things.

She’s beautiful. And she knows it. She loves borrowing Annie’s makeup and covering her entire face. We think she looks silly, but she sees it as beauty.

She loves “things”. She’s an absolute hoarder and constantly has a revolving supply of things she keeps with her. Usually in a bag or a purse. She’ll collect money (coins only - dollar bills don’t do it for her), chapstick, small parts or pieces to puzzles or games, random female accessories like brushes or hair clips, random female hygiene products like tampons. The list goes on. She genuinely loves things. And she’ll fight you if you try to take them from her.

She also really loves her iPad.

Now… on to the videos. Don’t forget to read the updates at the end!

---

If you’re still reading, here are some updates from the past few months and most notably the past few weeks:

• Viv was re-admitted to the hospital in September 2019. She developed a pocket of leukemia near her hip and a recent biopsy indicated a full-on relapse of her AML.

• She received one round of chemotherapy. This method of chemo was designed to be slightly less toxic but longer-acting than chemotherapies she has received in the past.

• As a result - her immune system was down for the count much longer than expected.

• During her stay, she developed pain in her legs as a result of leukemia in her hips. She also had a small perforation in her colon. Fortunately, she didn’t require surgery and the perforation healed on its own.

• Her counts (measures of her blood cells and immune system) were stagnant and not coming back after the chemotherapy she received.

• Finally, they began to show signs of life, but it took 2x longer than the doctors expected.

• She was discharged the Monday after Thanksgiving, but the leg pain persisted.

• Shortly after she came home she began radiation treatment on her hip. This lasted for a total of 8 sessions. Unfortunately, Viv developed a tolerance to the sedation medication required for radiation, and she needed to be put under general anesthesia each time she received radiation.

• One week prior to Christmas Viv began developing fevers and we were informed she had RSV. Not surprising given her unstable immune system and the time of year when RSV is most prevalent.

• She completed radiation on Christmas Eve, but the fevers still persisted.

• We enjoyed the holidays the best we could while making sure Viv was comfortable. To make her comfortable it takes a lot of pain medications these days.

One week after Christmas and the fevers continued to persist. She received a bone marrow biopsy on 12/30. The results were communicated to us today on 1/2 and it revealed she has 14% cancer blasts in her bone marrow. Unfortunately this means her cancer is returning faster than we all had expected. It explains the pain and symptoms she’s been experiencing.

This is not the news we wanted to hear, but we feared it would be the case. Viv has been through a lot. Her body is beginning to break down and not rebounding the way it did 2 years ago. We’re hesitant and nervous to use high dose chemo right now. The plan is to treat her slowly to help resolve her pain. We’re hopeful that this treatment route can be a bridge to CAR-T Cell Therapy trials that may be opening soon. Unfortunately, there is no timetable for that.

As I wrote toward the beginning of this blog, I needed to re-read an older post of mine titled “Keeping The Faith”. I am beginning to lose some faith in the medical options Viv has remaining. It kills me to write those words. But there is no revolutionary drug or antidote that is being developed that will cure her. There are no real success factors, at this stage in the game, that the medical community can lean on and confidently give us faith. The only faith I’m hanging on to at this moment is in a higher power and the power of prayer to deliver a miracle to our family.

If you’re still reading, God Bless You! This was a lot to get through. But please say a prayer tonight for my daughter. Please hug your kids when you see them next and pray that they remain healthy.

Thank you for allowing me to relieve some stress. This is my therapy.

VIVSTRONG FOREVER.

Keeping the Faith

Life is fundamentally flawed. Every day contains ups and downs and there is no guarantee you will have an opportunity to see tomorrow. Shockingly we face life and death situations more often than we realize. But there is no crystal ball. No glimpse into the future. No certainty of anything. It’s scary. The fear is amplified when you’re a parent. As any parent can attest, you’ll never sleep the same after you have children. You worry. Constantly worry about the health and safety of your most precious assets.

Our experiences, as parents of a child with cancer, have taken us down a path we could never have prepared for. When we project our future and attempt to look into the “crystal ball” we struggle and we become overwhelmed with the thoughts and possibilities of terrible outcomes. It consumes us. If we’re not preoccupied or busy running around chasing our kids, our minds can begin to wander. Wandering minds don’t usually paint the picture of kittens and rainbows. I’m sorry for being brutally honest here, but we’ve dealt with some shit and we’ve seen how bad things can get. People constantly tell us how “strong we are”. I’m not sure how true that is because we have so much fear and anxiety concerning the unknown.

The unknown. We’re reminded that everyone - each and every person - has no guarantee of tomorrow. So what keeps us grounded? What keeps us rooted to our sanity and gives us fuel to continue moving forward? To me, it’s faith. My favorite definition of the word “Faith” is a firm belief in something in which there is no proof. Wow - that sounds crazy. How could we believe in something which we’ve never witnessed or experienced? We do it every day. Want to bet the sun will rise in the east and set in the west tomorrow? Don’t we all kind of have faith that tomorrow will take place? Why should faith in life and our future be any different? The only explanation for these questions I can think of is that most of us take it all for granted. Can you see the point I’m trying to make? Don’t take tomorrow for granted. Don’t take your children or your spouse for granted. Attempt to live in the moment as much as possible and cherish the things around you as often as you can remind yourself. Annie and I get lost in the shuffle of chaos and raising three independent daughters that we forget sometimes, too. Usually, one of us picks the other one up and reminds them to have faith that tomorrow will be a better day. Tomorrow we’ll get Harper to school on time if we didn’t today. Tomorrow we’ll make sure Quinn eats more vegetables and less cheese. Tomorrow we can work towards a cure - to get Viv better.

It’s some combination of faith and hope that we all need in order to survive and attempt to live our best life. I don’t want to know the future. It might affect how we live today. I don’t want a crystal ball, either. While the unknown, the future, can be a scary thing, it’s faith and hope that will help us project brighter days and allow us to enjoy what we have in front of us. For now, we’re keeping the faith.

Keep on praying. Not just for Viv or our family - but for anyone who lives in fear not knowing what tomorrow will bring.

VIVSTRONG

Resilient

It's been awhile since posting to the VIVSTRONG blog. On the eve of Viv's 2nd birthday, I wanted to share some thoughts and brief stories about the most "RESILIENT" person I know.

Before I get started rambling, I would like to add context to the word "Resilience". The Merriam-Webster Dictionary defines it as follows:

I bring up this word because it has been mentioned to me so many times throughout Viv's battle with AML and her transplant. Doctors, nurses and wiser people than me have constantly assured us of the resilient nature of children. Sometimes, words are just words. Words can be used to describe emotions, feelings or experiences and while they contain context, they don't always sink in. At least not immediately.

Looking back at the photos, the memories created (good and bad), and living each day with Viv at our sides - I now have a deeper understanding and appreciation for the word. She truly is resilient.

Physically she went through hell and to some degree - still continues to go through physical hardships and challenges. If her first two stomach surgeries weren't enough - she'll need a third surgery soon to reverse her ostomy. It's a welcoming surgery, no doubt - but it's still a surgical operation that carries risk and requires treatment and physical therapy. She bounced back from the first two. She'll bounce back from this one, too. Resilient.

After going into septic shock, just 7 days into her first round of chemo, we watched her battle for her life for nearly 48 hours before doctors were able to put her into a restful state and allow medicine to do its job. She's here today as a result. Resilient.

After 2 more rounds of chemo (including the chemo leading up to her transplant) she didn't slow down. In fact, she sped up. Resilient.

After she received a donor's bone marrow and successfully engrafting - she kept going. Resilient.

After being discharged from a hospital where she spent 5 months of her young life, she integrated herself back into our home quicker and more seamless than we ever thought possible. Resilient.

After 2 shots per day, dozens of syringes of medication pushed through her nasogastric intubation (NG) tube each day, being hooked up to an IV bag for nutritional purposes for 12+ hours each day, and a stoma pouch that leaks more than it collects because she's an active and curious 2-year-old. She pushes on and doesn't let it bother her. Resilient. 

More than anything, when I see her or look at photos of her while I'm not with her I see nothing but smiles. If I were in her position I can't guarantee I would be so happy. But we're not talking about me... we're talking about my daughter. And she's fucking RESILIENT.

As we prepare to celebrate Viv's 2nd birthday, I'm reminded of how thankful we are for her. But also for everyone who is reading this post. You've given us so much more than you can ever imagine. Early on I really didn't know what it was to accept help or even words of encouragement. Because after all, they're just words, right? But going through what we've gone through - we now have context and a deeper understanding. Thank you to everyone. Viv is doing better than we hoped. If you notice that Annie and I are a little blue in the face it's because we'll be holding our breath for the rest of our lives hoping and praying the cancer never returns. But I promise we'll cherish each and every day that is in front of us.

Please wish my resilient daughter, Vivian Rose Zaratsian, a Happy 2nd Birthday!

I love you, Viv. Stay resilient.

#VIVSTRONG

It Takes a Village... and then some

When Annie and I "decided" to have our third daughter, Quinn, we clearly didn't do a good job timing it up with Viv's cancer [insert sarcasm here]. Come to think of it, we probably should have temporarily paused Harper's childhood, development and education while we get through Viv's treatment [did the sarcasm thing make you laugh the first time?]. And finally, I will simply not go into work, not respond to important work emails and phone calls, all while still receiving my full salary and medical benefits to support my family [wait - this part is actually true. More about this in a bit].

The reality is we didn't plan for cancer. What normal person would expect cancer to strike an 18-month-old little girl? When you're thrown into the fire with life's biggest hurdle you begin to learn the true definition, value and importance of family. For Annie and me, we would be on emotional life support if it wasn't for our family, close friends and colleagues. It truly does take a village to raise a child and ultimately survive cancer. 

I would be lying if I said it took cancer for us to begin relying on our family. We've always relied on them. From the day Annie and I met, one of the best attractions for us were each other's families. We have amazing parents, siblings, cousins, aunts, uncles - the list goes on. Family has always been there. Whether it was watching our dogs (and ultimately boarding them indefinitely), dropping off dinner, watching a kid or two (and now three - yikes!), or simply just being there when we needed someone to talk to. It didn't take cancer to get our family's attention, love and support. We've always had it.

One year ago, after Annie and I sold our house, we moved in with my brother-in-law and sister-in-law, Anthony and Christine. Their son, Jack, wasn't born yet, but they welcomed our craziness into their home while we renovated our new home. I wasn't around much. I put a lot of things on hold while I focused most of my time and attention to literally building our future one piece of drywall at a time with my dad. Anthony stepped up for me. Maybe he was just getting some necessary diaper changing practice in, but he cooked for my family, changed diapers, entertained Harper and Viv and I didn't have to worry about a thing. Christine, one of Annie's 3 best friends, was there to help as well. And she had the most important job of occupying Annie while I worked. We moved into our new home in February - but we always felt at home with Anthony and Christine. Side note: I could never have accomplished a home renovation without my dad. He never taught me carpentry skills or aspects of construction while I was younger - and I expect it's because he wanted more for me. But he and I had the opportunity to work together and ultimately create an amazing bond. Thank you dad - you never get the credit you deserve. Also - there are a few jobs still unfinished. Let me know when you have a minute. Thanks.

Fast forward to July 20th, the date Viv was diagnosed, our families stepped up their game even more. The first few weeks were an overwhelming and logistical nightmare in my mind, but things got done. Annie and I have spent nearly all of our time in the hospital since being admitted, but Harper has always been accounted for. She was a nomad for the first few weeks - sleeping over at Anthony and Christine's and hanging out with her cousin Jack. Sleepovers at Nonnie and Papa's house (my amazing mother and father-in-law, Mary Kay & Pete). Aunt Liz and Julie sleeping over at our house. Uncle Jake. Uncle Marc, Aunt Mary and cousin Liam. My mom (Nana Z). Aunt April. Aunt Jessa. Jesus - the list goes on. And now Joey is back in town. Welcome back, Joey. We missed you. 

After a few weeks in the hospital, and a more normalized and routine schedule for Harper, we had some real consistency for her. The grandma's got together and worked out a plan. Christine and Julie created an iCalendar tracking Harper's activities and who would care for her that day/night. These people altered their lives and schedules to accommodate us. Harper spends most nights in our house thanks to the flexibility and sacrifice from our family.

Hospital life kinda sucks. We've been here for nearly 3 months and have at least another 2-3 months left. That's assuming things go well and there are no additional setbacks. Things would be worse if we didn't have visitors to keep us company, break up the monotony of our routine days, and ultimately give us a little time off to visit with Harper or to simply go for a walk. It helps to have in-laws that work and live so close to the hospital. Liz and Christine, who work at the VA Hospital - less than 5 minutes from our hospital, often catch a break during the day or come after work to spend time with Viv. Mary Kay, the longest tenured employee in Cleveland Clinic history, is always around anytime you need her (and she's around when you don't need her - just kidding, Mary Kay). Pete stops here before Indians games. He's an avid fan and season ticket holder, and he must think Viv is his good luck charm (there's always next year, Tribe). Marc, Mary and Liam have been in town twice since the diagnosis and it's a blessing to have them around. Liam is best buds with Harper and those two can entertain each other for countless hours. Joey, who is back in town for a few months, is a jack-of-all trades. He's amazing with my girls and also a distraction for me. Having Joey back in town is like the Indians getting Andrew Miller back from injury. 

As it relates to my family - this isn't our first encounter with cancer. 10 years ago my Grandpa J passed away from pancreatic cancer after he surpassed most doctor's expectations and prolonged his time on earth. I had a front row seat watching my mom orchestrate his care and comfort. She, my dad and my siblings have been a tremendous help to our family during our current war against cancer. April and Jessa find ways to help given their distance from the hospital (Jessa is 60 miles away in Alliance, OH and April is 2,476 miles away in San Francisco). I'm so impressed with my younger brother, Jake. I've truly never given him the credit he deserves. He's grown up so quickly the past few months and has matured into someone I look up to for inspiration. It's a catch 22 with him, however because while I'm so proud of him, I'm sad he's enrolled in school and has a job he's dedicated to. He was an amazing help over the summer but he still finds time to fit my daughters into his extremely busy schedule. Thank you, Uncle Jakey. My girls love you and so do I.

Did I mention I haven't been to work in nearly 3 months? About that: my company, Speedeon Data, is the greatest company on the planet and led by some of the most generous and family-first individuals you'll ever meet. After we learned the diagnosis, I shared the news with several of my colleagues. At the time, it was very difficult for me to find the strength to speak the words out loud. The support and encouragement I received have helped carry me through this process. This amazing company has helped lift a huge burden off my shoulders and continues to reduce my stress. People have rallied together to cover for me and perform my job duties (probably not as good as me - I'm pretty f'ing good at what I do) while I focus on what is most important in my life right now. I'm not a charity case for the company. I think I've earned, through my 8+ years at Speedeon, the love and support of the staff. I want you all to know how grateful I am. I will do anything for you. Thank you Gerard, Marc, Josh, Linda, Kyle, Lindsey K, Grace, Justin, Brad, Riaan, Frank, Lindsey S., Jim, Gary, Rachel, TJ, Patrick, Margaret, Amy, Cody, Alex, Ben, Jennifer, Greg, Brennan, Brandon, Nicole, Ed, Jason and Matt. I really hope I didn't miss anyone. If I did - big thanks to you, too... man (or woman). 

Sorry for the long blog post and random nature to my writing style. This is the last part - I promise. I often joke about having sister wives between my wife's 3 sisters, and while I'm not legally allowed to marry all of them - they are such a close-knit and vital part of our family. We wouldn't be able to do this without you all. I've saved the best for last and I'm literally crying as I'm writing this part. My sister-in-law, Julie, is literally an extension of my wife and one of the most selfless and caring people I've ever encountered. She has sacrificed and reprioritized so much in her life to help us with ours and we cannot thank you enough. I recently found a Mother's Day card from this year addressed to Annie. It was from Julie & Liz. In the card, they wrote something like this: "we would be so bored if it wasn't for your kids". The irony of this comment is that they don't have much time to themselves or the capacity to carry on typical social lives of people their age. I've watched Julie adjust her work schedule to work the weekend nightshift (Julie is a nurse at the Cleveland Clinic) to accommodate other's more traditional work schedules. She canceled a trip to see Joey in Florida a few months back. She sleeps at her house, my house and sometimes the hospital. She's always texting us asking how she can help, or what we need. She doesn't do much for herself - yet does so much for us. Julie - I know you do it for Viv, but it impacts all of us in such a positive way. I could keep writing, as I'm sure I'm leaving out so many stories of your kindness and generous, bleeding heart, but I want to emphasis how much we appreciate and love you. Thank you for all you do.

Thank you to everyone I've mentioned in this blog. We love all of you and wouldn't be able to work through this difficult time in our life without you. The title of this post doesn't even come close to the amount of love and support you all provide. It may take a village to raise a child, but it takes a family to beat cancer. I pray that you all have the strength to help us get through the remainder of Viv's war. Together, we are VIVSTRONG.    

4 Letters to Avoid: PICU

Being in the hospital for more than a week, you begin to pick up on things. Being in the hospital for over a month, you feel qualified to manage a department - or at least administer basic vitals like blood pressure and temperature readings (which I do). But I've also noticed in hospitals, just like any business, they tend to use a ton of acronyms. One of my least favorite acronyms so far is PICU. Pediatric Intensive Care Unit. It's nothing personal against the department or the amazing staff of doctors, nurses, and respiratory therapists, but it's an acronym you should hope to avoid. 

On Saturday, July 29th, after 7 days of chemotherapy, Viv went into septic shock. Chemotherapy drugs that are designed to help cure AML are very dumb drugs. Their job is to kill every living cell in the blood. Good and bad. Clearly the goal in chemo is to kill off the blasts (cancer cells), but it also kills off the important cells, like white blood cells (WBCs - just another acronym to throw at you). The process of chemo is simple: kill off as many of the bad cells as you can, and while the "system" is down, maintain a sterile and clean environment for the patient to avoid infectious diseases or viruses. Chemo is also very hard on the digestive track, liver and kidneys. As chemo enters the body through IV (delivered through a central line), it's ultimately absorbed into the kidneys, liver and the gut in order to process and flush it out (pee and poop). As a result, chemicals are coursing through the kidneys, liver and gut and this can take a toll on the patient. In Viv's case, it really made her sick. 

For 48 hours Viv was in a state of septic shock. She had an elevated heart rate of 230 bpm (beats per minute). Her blood pressure was dangerously low. She required multiple blood transfusions. And her ANC (Absolute Neutrophil Count) was racing to rock bottom. ANC is a measure of neutrophils present in the blood. Neutrophils are a type of white blood cell that prevents an infection. It was determined that she had a small bowel obstruction. Without any neutrophils to fix the problem, Viv relied on an amazing team of medical professionals to aid in her recovery. She was intubated for nearly two weeks. Sedated and strapped to a bed for nearly 3 weeks. Had a chest tube to drain fluid from the cavity between her lungs and ribs. Had an NG (nasogastric) and an OG (orogastric) tube to pump fluid from her stomach. Another tube from her stomach to pull fluid residing outside her bowels. She had an arterial line monitoring her blood pressure and allowing medication to be received. Leads monitoring her respiratory rate. A pulsox monitoring her oxygen saturation and heart rate. A foley catheter collecting her urine. A femoral line and a subclavian line for receiving additional IV treatments, medications, and ultimately her nutrients. It took all of this and a dedicated team to keep her body in a stable condition. 

On August 13th, two weeks after being admitted into the PICU, Viv received surgery. The surgeon, who had been following her progress for over a week, determined it was the right time. After cutting open her stomach, he removed some lesions from her small intestine and put her back together. She made a decent recovery and we were able to leave the PICU several days later.

It was a weird feeling leaving the PICU. We spent almost 3 weeks watching our child fighting for her life - but we felt very reassured knowing type-A personalities and an amazing staff monitoring all her vitals were keeping her healthy. It was also a uniquely weird distraction from the war on cancer. In the grand scheme of things, this was a small battle.

One week later, on August 20th, Annie and I welcomed our 3rd daughter to the world. We named her Quinn Everette. I'll keep this brief: Quinn is a happy and healthy baby and we couldn't be more fortunate. There will be plenty of time to post more photos and share more stories about Quinn. But this blog is dedicated to Viv's journey. It was an unusual commute to L&D (Labor and Delivery). We're stationed on the 6th floor, and L&D is on the 2nd. After Annie and Quinn were discharged the nurse pushed the down arrow on the elevator; presumably to take us to the ground level and leave the hospital. Odds are we're probably the first family discharged to take the elevator up to the 6th floor. Annie and Quinn were wheeled into our "deluxe" suite at the end of the hall. We're now a family of 5, and 4 of us live in a hospital.

Less than a week later, on August 26th, Viv wasn't feeling well. More fevers and more pain. Within a few short hours after a physical assessment, we were sent back to the PICU. I laid in bed with Viv that night but neither of us got any sleep. She was in constant discomfort and pain, and no medication could calm her. The following afternoon, she went in for a second surgery on her stomach. It was discovered that there was still a small bowel obstruction and before she could resume chemotherapy, this needed to be addressed. People seem to think that surgeries are a routine thing, and maybe they are. But as a parent it's an overhwhelmingly emotional experience that leaves you counting the seconds until your child is back in your arms. Viv's second surgery required the removal of 20cm from her small intestine. She had a jejunostomy, which is a surgical opening through the skin, creating a stoma. Basically, instead of being able to reconnect her small intestine, it is positioned on the outside of her body and empties contents into a bag. This is a reversible surgery, but it will likely be awhile before it can be reconnected. 

Within a few days post-surgery, we were released from the PICU... again. Back to the 6th floor to fight cancer. This time, though, Viv was recovering faster and stronger than before. She was her "usual" self. Walking, climbing, getting into things, and squeezing her new little sister every chance she could get. Her stomach looked noticeably better and despite everything she had been through, she was happy. 

Today is September 18th. Viv is approaching the final day of her 2nd round of chemotherapy. As of writing this blog, she's still kicking ass and overcoming adversity like a champ. The next few weeks will be rough as her counts (WBCs, ANC, etc.) begin to drop and she becomes neutropenic. But she has an army of dedicated supporters in her corner to help her get through this round. 

I love you Viv. Stay VIVSTRONG.

VIVSTRONG - The Beginning. The Diagnosis. The Outlook.

This is my first attempt to blog about my daughter's battle against leukemia. These blogs will be told from my perspective (Vivian's father) and the goal is to provide awareness and transparency about the status and hopeful outcomes of Viv's journey. You'll notice my tone is casual and upbeat - but it's much easier to write it than to say some of these things out loud. This will become my outlet and my therapy for maintaining my strength and composure for Viv and my family.

The Beginning

Being a parent is hard work - but one of the most fulfilling "jobs" out there. My wife, Annie, has embraced the challenge by raising our girls, Harper (3), Viv (1.5) and Baby Girl #3 (due 8/18) with a selfless and passionate attitude. Annie knows our girls better than any fantasy football metric I've ever attempted to memorize. She can predict how the day will go based on the way Harper wakes up in the morning. She senses when our girls need extra attention or affection and does an amazing job of juggling each of their emotions... good or bad. If you ask her, she'll tell you she is overwhelmed and doesn't do a good job of keeping our kids upright. But that's just Annie being humble. She's amazing and I'm so fortunate that my girls can learn and grow from Annie's intuition and motherly love for her family. 

It's that intuition that has paved the way for our family's biggest hurdle yet. Several weeks ago, in late June, Annie noticed Viv wasn't acting herself. She seemed sick. She had a bit of a fever. She wasn't the playful, smiley, happy Vivi-Girl that we all know and love (Side note: our kids NEVER get sick. Prior to today, we've never had a kid even puke! No ear infections. No flu-like symptoms. Not even a cold). Annie took Viv to the doctor's and they assumed it was a small bout of fevers - maybe an infection or a virus that would run its course. Motrin and Tylenol. The fevers persisted. One day, Viv regressed and began crawling, and favoring her right leg. She has been upright walking since shortly after her 1st birthday in January of this year. This was a noticeable problem - but we didn't connect the dots just yet. After a day or two of this, Annie took her to the doctor again. Toxic synovitis was suggested. It's fairly common in children. It causes pain and inflammation in the hip joint and was likely the reason she didn't want to walk on that leg. Motrin and Tylenol. After a week, she began gaining confidence and was walking again. We were hopeful everything would be back to normal. But it wasn't. The fevers continued. Annie noticed Viv just wasn't herself. Annie was persistent and kept getting Viv into see the doctors. Run more tests. Draw blood. Do an x-ray. Whatever it takes. One day, after blood was drawn and analyzed, Annie received a call from the pediatrician. She asked her to have Viv admitted to Rainbow Babies and Children's Hospital. Her hemoglobin count had dropped dramatically from the previous blood analysis.

I'll never forget the phone call from Annie. Selfishly, I was hanging a miniature basketball hoop in my office at work. She called and was crying. She knew something was really wrong. Any time a husband hears a crying wife - time seems to freeze and nothing else matters. I grabbed my keys and drove home as quickly as possible. Upon arriving at home, Annie was getting back from an outing with Harper and Viv. Her sister, Julie, and her mom were en route to help (you'll notice a recurring theme throughout these blog posts - I'm surrounded by the most amazing people and support system. I'll never be able to thank them enough for all they do for our family.). Annie was visibly shaking and not communicating. Totally normal - as she was processing some worse case scenarios in her head - not to mention she's 8+ months pregnant at the time. We grabbed a few items, put Harper into the care of Julie, and headed toward the ER at Rainbow Babies and Children's Hospital - closely followed by my mother-in-law. There, we were quickly admitted and began seeing teams of doctors and nurses - from every medical department imaginable. The departments sounded foreign to me: Hematology, Rheumatology, Oncology, Infectious Disease, and probably a few others. Each department contained a doctor, a resident, a fellow - you name it. My wife was determined to continue telling Viv's story and why she thinks something is wrong. The doctors worked very closely to administer several tests. Blood work, MRI, etc. After two days of tests, a shit ton of anxiety and not showering during that time - Annie received the news that she felt deep down would become a reality. 

The Diagnosis

Mom knows best. It's been said many times - but there's a reason that phrase exists. Annie felt something deep down in the pit of her stomach and she knew something was seriously wrong with Viv. Just before Viv was about to become sedated for a PET Scan, there was a call into the Sedation Unit. It was like something out of a movie. The voice on the other end of the phone called off the PET Scan. The doctor was coming down to speak with us. I held my breath and then I asked: "which department?" The nurse responded by saying: "Oncology". In English: tumor and cancer. 

We waited in near silence for what felt like an eternity. It was probably only 5 minutes. The oncologist walked in followed by her fellow and our primary care doctor. Just like in the movies - she asked us to take a seat. I remained standing during the worst news I've ever received in my life. I stood with one hand on Annie's shoulder and the other rubbing the back of my sleeping little princess. The only word I heard was "leukemia". I honestly couldn't tell you what happened next. I couldn't look up. I couldn't look away from Viv. I couldn't hear anything. My mind was racing and my eyes were swelling with tears that I couldn't suppress. I was waiting for the doctor to tell us she was joking or that by taking her vitamins every day the cancer will go away on its own. That didn't happen. Annie, while visibly upset, remained strong during this moment. I needed that more than ever. I was an emotional wreck for the next hour or two while they performed a bone marrow biopsy on Viv to confirm the diagnosis and pinpoint the prognosis. I sat in the waiting room with Annie and cried until I couldn't cry any more. I think I went through half a box of tissues. Meanwhile, Annie recognized I needed her and she consoled me. She shed plenty of tears as well, but she was stronger in this moment. She rubbed my back. Hugged me. Encouraged me. Everything I needed - she provided. 

Later that evening, once things began to sink in, we met with a few doctors in the oncology department to detail the diagnosis and start talking about a treatment plan. The diagnosis was Acute Myeloid Leukemia (AML). Fast forward 6 days later, we learned her diagnosis was more unique than we had anticipated. VIv suffers from a much more rare form of AML called Megakaryoblastic Leukemia (also called M7). Please do me a favor: don't Google this shit. Let me be the one to provide information. I promised, at the beginning of this post, to be transparent and provide awareness into what's going on. 

Leukemia is a cancer which is formed in the blood and bone marrow. The cancer cells, which are referred to as blasts, attack the bone marrow's ability to produce good blood cells. Without good red blood cells to carry oxygen, white blood cells to fight off infections and disease, and platelets to repair tissue - life won't be sustainable for long. 

That was Thursday, July 20, 2017. Our lives changed forever. In a weird way, though, we were relieved to learn a definitive response to the issues Viv was experiencing. This is probably the only silver lining - but now we're able to begin treating the issue and hoping for a positive outlook. 

The Outlook

I won't detail all of the highs and lows (mostly lows) from the past week in this post. I'll expand on some of the moments and the people who are helping us so much in our most desperate time in separate posts. But I'll provide the information that is most important to disseminate. 

Viv is receiving chemotherapy right now. She began her first phase of chemo on Saturday, July 22, 2017. Her "current" treatment plan is as follows:

• 28 Day Cycle (80% of the time in the hospital full-time)
  • 10 Days of Chemotherapy. 2x per day. 
  • 7-10 Days of recovery time in the hospital. Her WBCs (white blood cell counts), Hemoglobin, Platelets, and ANC (absolute neutrophil count) need to be high enough for her to go home. Otherwise - she'll be prone to infections or virus that can't be stopped.
  • 7-10 Days of time at home.
• Repeat above one more time for another 28 Day Cycle
• Hope and pray that the cancer has gone into remission
• Check back into the hospital and receive a bone marrow transplant. Ideally, from one of her sisters. Irony: If Harper donates some of her bone marrow to Viv, it will be the first time Harper has given anything to Viv. Harper is notorious for not sharing. Joke's on you, Harper! 
• Assuming the transplant goes well, remain in the hospital for another 4-6 weeks. Maybe more. 

As you can see - there are a lot of variables to fighting this cancer. The one constant we have is Viv. She's the sweetest, most innocent kid I've ever been around. She will fight this cancer if it takes everything she has. It's my job as her father, and Annie's job as her mother to stay strong for her and help support her throughout this process. In order for us to stay strong, we need to rely on our family and friends for support, prayers, distractions, encouragement and guidance as we aim to kick cancer's ass. 

I'm optimistic to a fault. I'm the first to admit that. This will be the biggest challenge I've ever encountered, and I'm not the one with cancer. It won't be easy. There will be lots of tears. But we're all going to fight and I'm confident that we can succeed in beating the odds. Viv is one person - but there's an army behind her. I love you more than anything Vivi-Girl. Fuck cancer.

VIVSTRONG