Last fall, Hood Magazine's Jessica Brovold sent a questionnaire to help her write a feature on our family for their "Families that Inspire" issue. Hood Magazine is circulated in the Tri-State South Dakota, Minnesota, Iowa area as a free resource for parents.

There wasn't room for everything so I asked if I could share all of it as I hoped it may resonate with some other families struggling through stressful situations in their own lives. If you know Nieva's story already feel free to skip the first question which brings people to speed on her history. :)

Families that Inspire
‘Hood Magazine October 2015 Issue

Families that Inspire Questionnaire

Share a brief background story of how you got to where you are today? Life situation (if applicable) Initial symptoms, diagnosis, treatment, etc. (I know being brief won’t be easy here)

Nieva (Pronounced Knee-Ava) struggled through about 6 months of unexplained symptoms before diagnosis. April 2013 she took more of a turn for the worse with horrible fevers and terrible swelling which spread into her neck. She had developed a stark white anemic appearance and huge dark circles under her eyes. Her energy was non-existent. We had no understanding of what was going on and we felt helpless. In April, Ava went through diagnosis of a double ear infection, virus, and an abscessed tooth before realizing none of those were the issue.

Bloodwork concluded May 1, 2013 that she had leukemia. Nieva was two and a half years old. My husband, Jordon, and I were both in such shock. On the way to the hospital all I could think was this must be a mistake. The diagnosis was narrowed to Acute Lymphoblastic Leukemia on May 2, 2013. Nieva had a port placed and we set out to undergo two long years of intense chemo.

In April of 2015, with just three months left of her rigorous 2 year treatment regimen, she contracted chickenpox. No biggie for a normal child, but big deal for Nieva. The chemo kills what typically would fight off the chickenpox virus. The chickenpox disseminated, her lungs failed, and she was intubated and put on ventilators for nine days during which time we almost lost her. She was hospitalized for a month at Sanford Children’s Hospital. When she came out of intubation it took over a week for her to come back to us cognitively. We were dealing with a very rare and strange scenario since most children with cognitive rehab have had head injuries so there was a lot of unknowns and fears. After seeing her poodle at the hospital she made a dramatic change for the better. We knew we needed to get her into familiar surroundings to encourage her cognitive function back. We then continued around the clock care every 4 hours from home for 2 more months (attaching/detaching IVs, port flushes, antibiotics, doctor visits, reassessing her port weekly, etc….). Nieva completely and fully came back to us by the grace of God.

Late July 2015, after adding some integrative therapies and switching up a medication, the chickenpox FINALLY seemed to clear and we were okayed to cautiously end her chickenpox anti-viral meds. We had been unable to continue chemo treatment and it was too risky to start again with her weakened immune state. She has since been chemo free healing her immune system and has started school. Acute Lymphoblastic Leukemia is not considered “cured” until 5 years after treatment ends. For su that would be Spring of 2020. Her port will remain in another year for monthly port accessing/labs. Children’s cancer treatment has come a long ways, but many are still lost. We pray she never has to battle chemo again and has won completely. We thank God daily for her life and her health. It has changed so much in our perspectives of everything.

Advice for other parents facing a life-changing event:

STRESS is your enemy and it needs to be contained. It will rob you of all components of wellness. It will cause poor judgement, exhaustion, and stifle progress. You need to remember to keep your own wellness in check (emotional, physical, and spiritual). Spirituality is my rock and gives me the strength to keep the other areas operating. In the chaos, take a moment to figure out how you can find some moments of peace. It sounds counterintuitive, but find your peace and there your strength will be also.

The help of family and friends is also key. Its hard to swallow pride, but please accept help from loved one. Lists are your friends! Who has offered to help? Everything becomes overwhelming quickly. Assign someone to help you organize and answer your phone when available. Have help to keep track of things that may need doing and delegate where needed as well as who has offered to help do what so you don’t over-assign or misunderstand efforts to help. This may be in the area of helping you with housework, opening a fundraising account, researching treatments, bringing food, taking shifts overnight so you can sleep if hospitalization of a child has occurred. Have a list of needs written out and on hand for when people ask. When your family is crisis mode, EVERY little thing is difficult and adds extra stress.

You are not superman and you are not superwoman. You will do everything you can all day, all night, as long as you can… But you can only do that so long. Take breaks! Take care of you a little too. If stabilization allows it, get some exercise, take a long shower, smell some fresh air, be good to your body, drink lots of water, eat healthy, and try to get sleep to keep strength up.

What have you taken away from this experience?

Perspective. In times of crisis you learn to prioritize energy and where it can be spent. I have much less concern over the mundane annoyances of life. Anger, resentment, and bitterness takes a lot of energy and create a lot of unnecessary stress and damage. I find I have much less time for them. I want fast solutions to problems so I can move forward. No dwelling or struggling over silly things.

Maya Angelou once said “Bitterness is cancer. - it eats upon the host. It doesn't do anything to the object of its displeasure”.

I loved that quote. Bitterness, complaining, and yelling about petty things will only continue to hurt you. A coworker yells at you out of character over something petty, a waitress forgets part of your meal, you lock your keys in your car. Breathe. This is poignant so I apologize, but there are children in the hospital today that will never go home. You most likely have a job, you have money to go out, you have a car, and you have a family that is presently with you. Someone’s day is worse. Keep moving forward. Perspective.

What do you hope others learn from you sharing your experience?

Time is precious! Value it! Every minute you sacrifice to work on that late night project and that extra long shift… Realize and think hard about what it is you lose. You could be making memories with your family. Many work extra and long hours without proper recognition or pay. It is very sad because it is almost expected to overwork ourselves beyond our limits and put family as last priority. I have certainly been guilty of this. Every minute is precious. When you talk to many elderly people, their answer to what they regret most in life is not making more memories with loved ones. Also, not doing more things they were afraid to do, and not relaxing more often. Self care is very important.

2) When times seem tough, what advice do you have to keep motivated?

Look up! Look to your faith and those reaching out to support you. Breathe. Take the moments you need to find peace in the storms of life. As I said, if you can find what brings you peace, it will often replenish your strength. Walk here in the present, but look forward. There are unknowns with every next step, but the more steps you take in understanding and working towards your goals… the closer you are to moving past the worst. On the hard days, I tried to keep in perspective that now is not forever. We don’t get to decide all the plots in our life book, but to some extant our thoughts do contribute to the pages. We decide the tone. Accept the plot you have been given. Choose a positive tone. Do not give up. Work hard for resolution. Don’t beat yourself up and don’t blame. Breathe. Find your peace. Find your strength. Look forward.

Give a short description of your child/family dynamic and how they have adapted:

Our family used to always be rushing and very busy. But all the long hours added stress and unhealthy habits. We didn’t have time to eat right, exercise, keep the house clean, or interact much as a family. Nieva was always a happy great baby, but also never could sleep. As years slipped by, Jordon and I realized this was not how we wanted to the rest of our lives to go. It felt we were stuck on auto-pilot in a car that was destined to crash. Not enough rest or peace. Not enough laughter with loved ones. Not enough living!

Then came diagnosis day. And it felt like we HAD crashed. Everything was in a million little pieces. I remember how meaningless stuff felt after Nieva was diagnosed. I’d walk through the rooms in my house and feel the deep knot forming. There was this realization that everything we owned was nothing compared to this sweet child. Everything we had been working long hours for, and sacrificing so much for…. it was all just stuff. I loved what I did and loved my clients, but knew I needed to take on less. We needed a huge life change if we were going to get Nieva through treatment and stay afloat.

We have altered a lot since that day. We have donated trucks full of excess items from our home. Figured out systems and help for the areas that were weighing us down. I take a limited number of clients per month and year and set working hours for structure (I own Amanda’s Imagery on Phillips). This allows me to give more time to each of my clients while still maintaining time for my family. We now find time to cook, to clean, to laugh. We work less and buy less with hopes of experiencing more, yet that extra energy also allows for more passion and joy. Nieva is happy and thriving. We don’t live a perfect life and we don’t take for granted that the blink of an eye could change change everything. We settle for making less money, but I think as a family we feel we have been given a second chance and discovered what is truly important. Understanding what is truly important is the key to true happiness. Not money, not glory, not recognition, not title….. Love is what is truly important. How can we improve the ways in which we love today?

See Hood's article at:

http://www.thehoodmagazine.com/2015/09/28/87248/families-that-inspire