The Fight of Her Life

Last April, our lives and Olivia’s life for each of my children. We were cornered, care for Ella and Eli. Any free time I had not was normal. We had just celebrated with our hands tied. on the phone was filled with blank stares, her fifth birthday a few weeks before. Decisions needed to be made quickly. confused faces, and numbness. That car She was simply enjoying telling everyone The cancer was consuming her body to the ride felt it went on for hours. how old she was with a whole hand, five point that it looked like ivy was climbing We arrive in Memphis, meet our team, fingers. She was busy with soccer, dance up her aorta and down her abdomen into and get filled in on what to expect. “This classes, and getting to learn the game her pelvis. The size was beyond anything treatment plan will last 13-15 months.” So, of softball. Church choir was also new we were expecting. It wasn’t until a couple we had to adjust our life some and continue favorite. But the highlight for this kid, and days later, through a biopsy, we found out to make the best decisions possible her favorite role thus far, was being an exactly what we were up against: Stage IV for our children. After five rounds of older sister to her brother and sister, Eli High-Risk Neuroblastoma. Roughly 500–chemotherapy, one resection surgery, one and Ella. Life for this beautiful little girl 600 kids annually in the U.S. are diagnosed transplant, six rounds of immunotherapy, was about as perfect as it could be. Then, with this specific type of cancer. “Rare.” biopsies, four ICU visits, sprinkle in shots, on April 1, 2019, my wife, Sarah, and I “Aggressive.” “Intense.” Many words countless sedations and scans, holidays, began a journey that no parent would were shared with us, each painting a more birthdays, celebrations, ups and downs, ever imagine they would set foot upon. A vibrant and specific picture of what was we are still at it. Fast-forward sixteen trip to the emergency room at Children’s trying to take down my first-born. Sarah months. We had hoped to begin “normal” Hospital at Erlanger for what we thought and I received a couple of second opinions. life back at home, making new memories was appendicitis, turned out to be so much St. Jude Children’s Research Hospital called with all of our family. Unfortunately, more. In a very small, cold, and eerie room and said they would have an ambulance during Olivia’s end of treatment full-body we were taken, without Olivia. “There’s a ready to pick us up in 12 hours. That evaluation in July 2020, two new spots mass in your daughter’s stomach.” We sat Saturday morning, we loaded up with the appeared. However, all of the original there. Silent. We listened in shock at what clothes on our back and began a trip that disease is gone. Her journey thus far has we were being told. “It’s pediatric cancer.” still continues today. Sarah sat in the back been consisted much of this; “good and I don’t think we were really accepting to of a cramped ambulance with Olivia, who bad news”. We have learned to take all the this right away, it’s still surreal. Pediatric was smiling and cheery, and me driving good we can with the bad. This trend still cancer was the last thing on the list of our car behind them the six hours to continues today. Currently, COVID-19 has things we expected could happen in our Memphis, TN. All I remember from that car consumed our lives, much like it has most child’s life. More importantly, as a father, ride was staring at brake lights and being of the world. However, St. Jude, much it’s something that I couldn’t fix. I couldn’t on the phone with anyone and everyone, like every hospital in the world, has taken make better as I always promised I would trying to make more decisions and how to numerous precautions to protect their 26 // August 2020

patients and families. One of those being the limiting of caregivers in housing to one; we had to pick who stayed with Olivia and who went home. So, the good is I am home with Ella and Eli more frequently, trying to keep their life more stable, while Olivia and Sarah are still at St. Jude. Olivia is now undergoing extensive treatment to combat the debilitating disease inside her. While inpatient for five days, every 21 days, she wakes up at 5 a.m., takes one pill for chemotherapy and another to help with her nausea, followed by a chemo drip for an hour and a half. After that, it’s 10 hours of antibodies, which are necessary, but make her body ache and keep her from sleeping. The antibodies finally stop around later that evening, and if she’s able, she might eat something light. Olivia doesn’t have much of an appetite during all of this, except for the occasional bites of a popsicle. She barely finds the energy to play a game or two with her favorite nurses. After five days of this routine, if her fever is down, Olivia is discharged to housing, where she gets a few weeks of rest before starting the cycle all over again.

Yes, Olivia’s story is a tragic and heartbreaking one. Parents plan out their children’s future and imagine hundreds of scenarios. None of them include cancer. It’s such a rare family to be part of, but around here, around St. Jude and other pediatric centers across the world, it’s anything but rare. It’s the norm. We are comforted in the fact that Olivia’s story is still being written. From the beginning, her journey has been one of hope, community, and relying on faith to weather this storm. Her optimism and positive outlook has been much stronger than that of any five

year-old I’ve ever met. The only thing that makes her 5 is the number. As my mother would say, “wise beyond your years.” Since Day 1, we have explained to Olivia what was happening and the things she might have to do, including losing her hair, and she took it incredibly well. She never complained about being in a hospital or having to leave Cleveland, saying “goodbye” to her friends and a life that she was just coming in to. Sure, she has moments where she misses various memories of a life before cancer, but she knows where she needs to be and what she needs to do. She has come to appreciate and accept the new life we have found ourselves part of. Her courage and strength alone has kept Sarah and I that much stronger. We all have been changed and continue to be transformed through this situation. We continue to be filled with life and joy to see how much she’s grown through her experience. As adults, we handle things the way we feel is most appropriate and those decisions help to develop us. Under the circumstances, I’d think that for most kids, it would slow them down to some degree and keep them from developing physically and mentally, but the past year has only seemed to accelerate her development. She’s challenged herself mentally. Emotionally, she’s grown and learned to handle things almost better than some adults would. She’s learned to cope with it and is comfortable in the situation because of her surroundings. She loves her nurses and her care team. They’re incredible and make her feel like she’s part of the family. They’ve taken a lot of the stress off us and allowed us to just parent and help her grow. All these variables impact her development and she has somehow found a way to use all of them to her advantage to get the most out of a terrible situation.

Our faith has never been tested on such a level. I was recently asked, “How has your faith been shaken during this ordeal?” I explained how “shaken” is a tough word to describe what was happening to my faith and the faith of our family. I don’t feel like our faith has been shaken. Yes, we have certainly questioned the journey and why our daughter had to be the one to go through it. To me, the word “shaken” a negative connotation, indicating an unfortunate disturbance or something you don’t really want to happen. I truly feel like it’s been enhanced and strengthened. Most of which is due to the amount of people who have messaged us, encouraging us and Olivia to continue on in faith. Olivia’s story, albeit sad and unfortunate right now, has already impacted the lives of people we will never meet. Our optimism and confidence in the plan Christ has for Olivia and our family has grown. People message almost daily, with encouragement and stories of how Olivia and her obstacles have impacted their lives. Stories saying their kids are now praying at bedtime for Olivia, getting more interested and active in having a prayer life, a wife who reads Olivia’s Facebook updates and story and her husband hearing it and makes a decision to turn to Christ. Families getting stronger, coming together unlike ever before because of a journey being made by a child they have never met. God is in the middle, in the front, and surrounding the situation. We have and will continue to praise him in every failure and every victory. Yes, decisions will be made, but we aren’t naive to think our decisions are changing the layout of the plan that God

has for her and that he hasn’t already planned everything out. There is a bigger picture being painted, and we get to watch with front-row seats His miracles unfold.

Our eyes have certainly been opened wide to a variety of things, the medical field and pediatric cancer specifically. Outside of the frontline medical lingo and medication we have come to be more familiar with, we have become more familiar with the attention, or lack thereof, that is given to pediatric cancer. Finding out how underfunded pediatric cancer was completely blindsided me. Although Olivia does have a rare and unique cancer, pediatric cancer as a whole only receives 3-4 percent of the national budget. It’s one thing to focus on treatments and cures for older generations, but this is different. “Kids are our future” used to be for real. You don’t hear about pediatric cancer having breakthroughs, which is unfortunate because kids are being born every day, and they’re having to face different cancers, and diseases, and mutations. It blew my mind. There are clinical groups who work with pediatric cancer across the country, but it’s not a collaborative effort globally, where everyone is pitching in and trying to find cures together. St. Jude is a unique organization and has the flexibility to work with many organizations, and has affiliates across the country. They don’t only treat the patient, they care for the family, without asking for anything in return. The financial burden is lifted from 28 // August 2020

the family during, what would arguably be the most difficult time of their lives. And even if Olivia’s journey takes us somewhere else down the road, St. Jude has made our situation much more acceptable and possible. If there was an organization that is doing remarkable things in a very selfless manner, it’s St. Jude.

Throughout our time here and in the middle of this storm that doesn’t seem to let up, we have heard and continue to be reminded of various versus from the Bible. Jeremiah 29:11 “For I know the plans I have for you…” Another verse is John 9:3, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” Philippians 4:13 is another strong verse for our family. It says, “I can do all things through Christ who strengthens me.” And she’s had to—a lot more than any kid her age, younger, or older, should have to do to save her life. She’s taking obstacles and knocking them down. We would recite this verse every day before I dropped her off at daycare. I never knew how real it would be for us.

As we move forward, we continue to be lifted up, standing on the shoulders of an army of believers and countless strangers who want nothing more than God’s plan to be fulfilled, and her body to be completely healed. We’ve been very blessed in the way that we have had people give in various ways, and separately through a trust that was created for Olivia. It has certainly taken a village to make everything that needed to happen. Our other family members have had to raise our other children, we’ve had to move out of our home where we began our lives and raised children, Sarah and I have had to sacrifice various aspects of our professional careers. We’ve been very blessed to have a lot of people who are taking care of us all around. There have been fundraisers for Olivia and St. Jude children, a race named for Olivia, t-shirts and bracelets being sold to benefit our family, and countless packages and letters that would always brighten our little warriors day. Ella and Eli would even receive packages randomly. Our family has not been forgotten or had to want for much at all. When I say we have been blessed at the most perfect and most random times when we least expect it, that

cannot be more understated. That’s another way our eyes have been opened: our lack of what we were doing before for others. Were we generous enough? Were we helpful to other people before all of this? We need to look for opportunities more often to help someone in their time of need. Being able to touch someone’s life without knowing their life story is something we try to encourage others to do.

Our family encourages readers to continue to pray. Pray for complete healing and a completely clear scan and body, void of disease. We also pray for little-to-no side effects. We want her to grow up, have kids, live a full life—things every parent wants for their child. Pray for wisdom that we’re making the right decisions and that our sleepless nights are not in vain. Pray that our two other kiddos understand why mommy and daddy have to be here, not with them, and that they grow up without the feeling of being left out or forgotten. Here in Memphis, leaving Eli and Ella in Cleveland, is something we have to do. Just pray that Sarah and I can make the right decision at the right time and listen to His Word and His guidance to do the best we can because Olivia relies on us. Most importantly, pray that our strength and faith remain intact and we continue to remain faithful. As we continue on, we will be tested over and over. We have to remain fervent in our prayer and remember to give God the glory in and out. We are grateful and thankful for the many of you who have stood up for us, stepped in the gap, and made Olivia an honorary member of your family. We could not have gone this far without God’s guidance and your continued and unwavering support. Thank you.

To get involved in Olivia’s fight, you can visit her Facebook page, LIV - In The Journey, or send an encouraging email to livinthejourney2019@yahoo.com. You can also donate to St. Jude in honor of Olivia, or donate to her GoFundMe at www.gofundme.com/f/liv-in-the-journey.