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.
