All About Viv — VIVSTRONG

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.