‘The cancer unit? How’d this go from ‘Hawaii 5-0’ to ‘Fighting-4-Life’ in 24 hours? This can’t be right.’: Dad insists he’ll be ‘taking my family to the top, whatever it takes’ despite infant daughter’s Down syndrome diagnosis, then cancer battle

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“Our family has been on a wild ride for the last few years. We’re adventurous spirits, but our hearts and minds have undoubtedly been tested. After 3 years of married life, my wife Terah and I decided that we were ready to start having children. We naively expected that once we decided to stop preventing, sooner than later, we’d have a beautiful baby joining us. Well, it was later instead of sooner. Unable to conceive naturally, we started the journey with fertility doctors. It was more emotionally loaded than you can believe (and let’s not talk about what those fertility meds do to you…). It took a long time and a series of doctors until we found the answer to the riddle of why we couldn’t get pregnant. We learned way more about infertility than we ever wanted to know.

Courtesy of Brian Jones

It took more than 5 years of doctor visits, strong medications, procedures, and the like. Eventually, after numerous rounds of IUI’s and on our second round of IVF we were finally pregnant. I remember how excited we were to hear TWO heartbeats. Twins!  At our 12-week appointment however, we were delivered devastating news that one of the two heartbeats had stopped. We’ll have to wait to meet and hold that little babe in our arms one day, but we were still elated that our little baby GIRL was about to join our family.

Courtesy of Brian Jones

Pregnancy went as expected for first time parents. Checkups at the doctor’s office. Belly getting bigger. Mommy needing to buy any and every cute thing she sees on Pinterest. Our prenatal care was great, and we felt comfortable with our hospital and midwife group. All the checkups and ultrasounds checked out and we were ready for this little princess. Just before the 37-week mark, Terah went into labor. I guess babies don’t always go 40 weeks…who knew? Not this guy.

Her water broke at about 6 a.m. so we packed up and went to the hospital. Ready or not. We had lined up a pair of doulas to assist in the labor and they joined us. The labor was progressing slowly, but we were too excited to be concerned. Contractions were coming and going. Terah had always wanted a natural birth but after 35 hours of labor the doctors began to intervene with medications and eventually a much-needed epidural. She was a champ throughout the whole process. After 42 total hours of labor, our baby girl Indy entered the world. Mom and Baby were both tuckered out from the marathon birth, but I’ll never forget the first time our baby girl was laid on mommy’s chest. Mission accomplished. Celebration time!

Courtesy of Brian Jones

The minute that Indy was born, the power went out at the hospital. Really. I recall the staff telling us to hang on and the backup generator would kick on, which it did shortly after. I didn’t think too much about that until later, but it proved to be a bit of a foreshadow. As mommy and the team finished up the birth process, I was tasked with standing guard over baby Indy. Never leaving her. Nobody is going to poke or prod or touch my little treasure without me at her side. I ushered her to the nursery and stood guard and awaited further instruction.

Courtesy of Brian Jones

The doctor on call that day was new. A resident. I could tell she was just learning the ropes. My curiosity was piqued when she came and went multiple times from the nursery. She didn’t say much to me, but she was intently studying Indy’s hands and her feet. Interesting. She then asked me to accompany her back to the room with Terah. I politely declined, stating that I’d prefer to stay with Indy. Dad’s on guard. She came back a few minutes later and more earnestly asked that I return to Terah’s room. I responded in the clearest daddy-bear tone I had that ‘I would not be leaving her side.’ Shortly thereafter, a new, more experienced doctor came and asked me to come with her. It was the look in this doctor’s eyes that told me I needed to go. I kissed my perfect baby girl goodbye and followed the doc back to Terah’s room. Talk about an uneasy walk. I don’t know if I can describe well enough how a walk like this feels. It’s painful and uneasy but in a numbing way. Autopilot takes over and I comprehend what’s going on but I’m just a passenger in my own person. I’m the bug being drawn into the glowing light of the bug-zapper. Like a true ‘lamb-to-the-slaughter’ walk.

It was 2 a.m. and eerily quiet in the hospital. Upon arriving in Terah’s room, the entire staff and all visitors left. It was just Terah, me, and the resident doctor. Boy-oh-boy was the resident scared. In a cold and nervous tone, she briskly informed us the news.

‘We suspect Indy has Down syndrome,’ she said.

Indy had some markers in her hands, toes, etc. that signaled that she likely did. What? Our little miracle baby wasn’t the happy, healthy, typical baby we anticipated?

The subsequent hours were a tailspin of tears and fears. A fully rested mom and dad would have a hard time processing what was happening, let alone a tuckered out duo that had just endured 42 hours of the labor process. They sent us off to a recovery room where we cried and ‘rested’ for a few hours. We wish so badly that they would have brought Indy to be with us, but they didn’t. We only held our baby girl for a few moments earlier that night and we were trying to discern a new version of our lives and her presence would have been comforting. We arose in the morning and went to see her. She was beautiful.

Courtesy of Brian Jones

Inside of 8 hours, I wrapped my head around the circumstances, and I was prepared to show the world how great Indy could be, Down syndrome or not. Cue hyper-engaged daddy. We’re doing this. We spent 2 weeks in the NICU snuggling the lights out of that little girl. Helping her eat, changing baby diapers, and taking little baby-baths in tiny plastic bins. Then home we went. Over the next few weeks and months we settled into a life with our newest addition, speckled with doctor visits, therapy after therapy, and a lot of laughs.

Courtesy of Brian Jones
Courtesy of Brian Jones
Vanessa Brown Photography

Terah and I have always been adventurers, but we were next-level once Indy Llew came. Our previous travels had no purpose other than exploration and diversion but, now that Indy had arrived, the meaning changed drastically. We set out to prove to ourselves and the world that Down syndrome was no impediment to vision, achievement, and taking all the goodness that life had to offer. We played really hard for that first while. Camping and Boating. Road trips. Spent a month in Europe. On and on. Intently collecting any exhilarating experiences we could get our hands on. Camping with a baby on oxygen? Yep. Who’s that reckless dad that’s wake boarding with a baby? This guy. (side note – she didn’t even get wet). Did you see that dad pushing a breastfeeding mom in a stroller through the streets of Amsterdam? Yeah that was us, not slowing down. We were doing a great job at living.

Courtesy of Brian Jones
Courtesy of Brian Jones
Courtesy of Brian Jones
Courtesy of Brian Jones

It was on the tail end of a trip to Hawaii in January 2018 that Indy wasn’t feeling well. She was a little pale and lethargic. Didn’t want to play much or practice walking. It was winter and in the heart of cold season, so we figured that she had come down with a bug. The day we arrived home, we dropped by her pediatrician’s office to have her checked and get some remedies. Her doctor thought it was just a virus but suggested we draw her blood and have it checked to make sure there wasn’t anything funky going on. We left the doctor’s office and headed home to get settled. It wasn’t more than a couple hours later that we received a phone call. There WAS something going on with Indy’s blood and we needed to get to the hospital ASAP, they had a room ready for us. We arrived and checked in. They gave us our room number of 4414 and gave us instructions to find it. I’ll never forget walking up to the 4th floor and headed north down the hallway, as directed. A set of double doors greeted us with a blue-lit sign beside them……. CANCER/TRANSPLANT UNIT. Lamb-to-the-slaughter – Round 2. Really? The Cancer unit? How did this go from ‘Hawaii 5-0’ to ‘Fighting-4-Life’ in less than 24 hours? This can’t be right. She’s just got a cold or virus.

We spent the night there in the hospital room. We had no idea this would be the first of many, many nights. They poked and prodded, assessed and tested. The next morning they broke the news that it was likely that Indy had Cancer – Leukemia. They needed a few weeks for the tests to come back but they were pretty certain. The tailspin of tears and fears started all over again but this time I recognized it because I had been there before. I told myself that I needed to breathe and take a step back. Tragedy seems insurmountable in the moment but once we allow ourselves to see outside our current dilemma, we find positivity and promise.

Courtesy of Brian Jones

The doctors let us go home for a few weeks while we awaited more results and information. Our efforts and focus went immediately to Indy and her sickness. Prior to Indy’s birth, Terah was working as a nurse practitioner and has always spent WAY more time working on health and wellness than anyone I’ve ever known. She reached into her bag of tricks and concocted an extreme regimen of foods, supplements, vitamins, and natural remedies for Indy. Dad prayed and learned everything he could about the disease. For 4 weeks we worked tirelessly to strengthen her and do what we could to try to fight the disease.

Courtesy of Brian Jones
Courtesy of Brian Jones

Once all the results were back, the doctors confirmed it was indeed a ‘Leukemia-like’ cancer call MDS.  It would require 5 intense rounds of chemotherapy with inpatient stays of 25-30 days each and 7-10 days breaks at home between rounds. We packed our bags, prepped our hearts, and signed up for the cause. The rounds were long and difficult, but Indy did great. She’s the most submissive, tough, patient, and loving angel God ever created. We all found happiness and positivity in our time there. We chose not to be miserable. Great nurses and staff helped. We also took with us a lot of good memories, along with a few less-than-splendid ones. After 8 months of in-and-out of the hospital, chemo, and hair-loss, we came out victorious. Cancer was gone. Indy was healthy. Our gratitude and happiness could not have been fuller.

Courtesy of Brian Jones
Courtesy of Brian Jones

Once we were free from cancer we lived with a fresh take on life, spending time with Indy and our soon-to-arrive little sister. Yes, that’s right, we had a surprise, unplanned pregnancy while we were in the heat of Indy’s treatment. Considering our infertility journey, it was miraculous by all accounts. Little sister Birdy has been a blessing to our family and a rainbow after the storm. We also made the effort to interact and be involved in social media. From the minute Indy was born, we’ve enjoyed an incredible amount of support and outpouring of love from strangers all over the world. They are now our Instagram Family and they’re the best. Traveling and adventures came back into view and we were again living our life in relative ease and happiness now as a family of four.

Courtesy of Brian Jones
Truly Photography

The happiness wasn’t permanent though. After being in remission for 12 months, Indy relapsed with cancer (July 2019). It was devastating. It’s the shadow that haunts cancer survivors but that’s where we find ourselves today. Suited up to battle again and do whatever it takes to beat cancer again. We’ll do it. We’re one round into chemo treatments with a bone-marrow transplant to come. So our journey continues. His will, not ours.

Courtesy of Brian Jones
Courtesy of Brian Jones

I parallel our lives to climbing Mount Everest. There’s a point you reach on the way up (about 22,000 of 29,000 ft of elevation) where oxygen is scarce, life is no longer sustainable, and you’re still far from the top. The body slowly dies. They call it the ‘death-zone.’ Climbers must dig deep inside themselves to find the drive and power to make it to the summit. It’s at this altitude that true character and grit is found. The highest achievements of life are accomplished but, regrettably, some don’t make it back. This is where I feel we are at on our journey, and I’ll be taking my family to the top, whatever it takes.”

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Courtesy of Brian Jones
Courtesy of Brian Jones
Courtesy of Brian Jones

This story was submitted to Love What Matters by Brian and Terah Jones of Salt Lake City, Utah. You can follow their journeys on Instagram here and here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful stories like this:

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