Through My Eyes: A Day in the Life of Kellie Andrew, Warrior Mom Fighting to Save Her Child from Neuroblastoma

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Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes.  Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer. 

https://youtu.be/gmfPK8RqmDM
  • Perspective: Cancer Mom
  • Name:  Kellie Andrew
  • Spouse:  Jason Andrew
  • Daughter:  Brinn, 2 years-old
  • Cancer: Stage 3 Neuroblastoma
  • Diagnosed:  12.11.18
  • Treated at:  Levine Children’s Hospital
  • Interests: being outside and together, Carolina Panthers
  • Feels:  Isolating (Kellie)  Hopeful (Jason)

UPDATE, JUNE 2020:  We are thrilled to share that Brinn is currently in remission and there is no evidence of disease.  

Kellie took over our Instagram feed and stories on 9/5/19 to share Brinn’s cancer story and give you a ‘day in the life’ view of a day as a cancer family. It’s real and it’s raw… this is childhood cancer.

Jason, Kellie, Nash & Brinn Andrew

When you become a parent you assume new roles. You know who does this and who is better at that and you begin a new way to go about your day with working, picking up kids, dinner, bath, and bed. You get in a groove. Sometimes the groove gets hectic but you figure out what works. Then your kid gets diagnosed with cancer. And everything stops in your mind. But nothing else changes. Every bill, every appointment, every birthday gift, every piece of laundry, it still needs attention. 

Having to take a step back from teaching 3rd grade was hard, but necessary. 2-3 appointments a week, multiple stays in the hospital, and then knowing your child can’t be in a preschool setting due to germs would cause most people to want to become full-time stay at home parents. We are lucky in that I am able to stay home with her. Many parents don’t have that luxury and that’s an entirely different story. My days consist of getting her to appointments with all the meds and tube feeds in tow, back home for her to hopefully nap, lunch, clean up the house (because you know it’s never clean with two little ones) and then to pick up brother at school. Then playtime, dinner, baths, and bed. This is not unlike my life prior to Brinn getting diagnosed, I just somehow seem to have even less time that I did before to do what is needed. 

Jason and I put our children and family as a unit first. We understand that there will be time for us at some point, somewhere. The fact that both of us are on the same page when it comes to this is huge. During such a stressful time we have found that we actually trust and rely on each other more than less. We argue less, we talk more, we spend quality time with each other and our kids more. Someone told me once that as a couple we will either make it through, closer than ever, or it will destroy what we have. We are committed to doing all we can for our family to come out better than we started out.

 

 

Haunting Moments We Can Never Unsee…

The hardest moment I personally have ever witnessed with Brinn is when we were in PICU after her second surgery in April 2019 to remove organs that were showing signs of necrosis. She was so, so sick. She came out of surgery intubated and began to wake up. Nurses gave her sedation meds 3 times before finally saying she needed to be extubated. Her will to have that tube out so so real! Seeing her gasp and gag, eyes full of true fear and reaching for me will haunt me for the rest of my life. For me it was pure heartbreak because I knew she was actually scared. We were in the hospital 25 days and her health was up and down the whole time. This is a time in her life that is a blur and I don’t mind it one bit.

 

Just Another Romantic Night at Home…

Nighttime routine is crazy for lots of families…ours is too! This is us getting Brinn ready for bed. She has nightly tube feeds so we must mix her organic blenderized food with something that looks like pediasure and pour into a bag. Delicious. 🤣 Attach the line, prime the line, attach to her gtube extension. These run over whatever hour period we decide. She also needs IV fluids since she isn’t drinking enough each day. Hang the bag of fluids, prime the pump, glove up, clean a line of her Hickman, attach the fluids. This video shows Jason getting the lines primed and food hung, I got her 8 medications ready for her gtube before we started her feeds, he spaced them out because 8 meds is a lot on anyone’s belly, and then I prepared her Hickman for IV fluids.

We realized it makes more sense to do all of this in the den with our kids so 1) we are near them to continue to spend time (they are on their ipads🙄) and 2) allows us to do it together so it’s a faster process. Not ideal but certainly needed. Add in dinner and bath and playtime and the evening is gone.

It’s All About Balance…

Isolating. This is the first word that came to mind when I thought of what word describes our life. It’s not that we are being pushed aside or not heard or cared about, it’s how I feel inside. No matter who I talk with, cry to, explain our day..no one can truly understand what it’s like. I speak with other parents who are going through this exact cancer with their children and while we share so many of the same thoughts and experiences, it’s STILL feels like something all our own. They say no one gets it until you go through it (that’s with anything in life) but even when someone ‘gets it,’ it’s not the exact same as what we’re dealing with. It can’t be because every child is different: different diagnosis, different family dynamic, different in how they handle treatment, etc. I just feel very lonely all the time. I’m staying home full time to care for her and she’s immune compromised so we don’t leave the house. Family and friends reach out often, strangers send cards. It’s comforting to have these people check in on us and it’s helped us as a family the entire way. But truly, I feel like I live in this little nightmarish bubble, put on a happy face, and try to convince myself and the world that things aren’t as hard as they are. If someone were to ask me, ‘How can I help you feel less alone?’ I would have no answer. I don’t know. I just don’t. 

He feels Hopeful.  Hopeful Brinn remembers none of what she has had to endure.  Hopeful she finds strength in the hell she has been through. Hopeful for grit and determination to get through the rest of her treatment plan.  Hopeful one day this will all come to an end. Hopeful to see Brinny rip that bell off the wall when she rings it. Hopeful there are no lingering issues from treatment.  Hopeful the ‘C’ word doesn’t consume my thoughts as we move forward. Hopeful for clear scans the rest of her life. Hopeful that her story will bring awareness. Hopeful pediatric cancer research will be funded.  Hopeful for a cure. During the darkest days of my life, I remain Hopeful.

 

 

 

I Want People to Know…

Cancer can happen and does happen to anyone. I can’t tell you how many times I’ve watched other families go through similar experiences and thought ‘I can’t imagine.’ And now we are in the thick of it and it’s not about imagining it, it’s about doing it. I want people to know we feel alone, left out, scared of the day and scared of the future. I want people to know that we go back and forth between ‘We are doing the best we can,’ to ‘Please make this go away so we can be ‘normal’ again.’ I want people to know that childhood cancer is something that never ends…the possible effects of these toxic drugs on my daughter’s body will linger and pop up when we finally think it’s over. I want people to know that for the rest of her life, and Nash’s life, when they complain of something hurting my mind will immediately go to thinking there is something majorly wrong. It never ends for us But the phone calls do. And the meals. And the visits. And even the prayers as people move on with their lives. Life goes on but for us it goes very slowly and with lots of worry.

Cancer Happens to the Siblings Too…

Nash and Brinn not being able to be together at times is extremely painful. It’s hard enough for me to be away from Nash during hospital stays (and Jason from Brinn), but seeing them ask for the other is heartbreaking. We’ve seen it happen over and over again, the minute Brinn is reunited with her brother she becomes more willing to eat, drink, and play. He gives her the boost she so desperately needs. It’s precious. 

As much as Brinn is going through, Nash is also going through a lot of changes. Different people picking him up from school, one parent at a time at home, not being able to have her play outside or do some of the things they’ve always done together to name a few. He has witnessed big changes in his little life. We’ve seen him so incredibly sad at times and him not knowing how to deal with it (or us for that matter) has been very hard as parents to witness. Nash and Brinn haven’t been able to have the time together that many siblings have and it’s taken a toll on them both. Their bond is so real and their love for each other is so pure. We are definitely proud of our children and the ways they are handling these tough days.

 

The Unknown…

I’ve joked several times that I’m going to go back and get my nursing degree after all this. I have learned so much while caring for her and honestly feel I’d make one hell of a nurse. But really, even having the best care (from the real nurses and doctors, not me), only means she is well for that moment or that day/stay. The thought of her relapsing is something that is so real and so possible but something I don’t allow myself to think or talk about. Until now. The thought of going through all of this and then it coming back is gut wrenching. I just don’t want to imagine it. I focus on each day at a time and find the happy and normal parts of our lives. 

We are stronger because of all of this. Our marriage, our relationship with our children, our trust in Jesus. I pray that whatever cards come our way we are able to stand firm and together and do what is best for our family. I am so proud of us as we have navigated this past year. 

We can’t thank Kellie and Jason enough for agreeing to share Brinn’s story, for talking about their deepest thoughts as a family and opening up their hearts wide to our supporters. Parents of children with cancer always appear to be coping, its because they have no choice. What you see here is unimaginably real. Incredibly raw. This is childhood cancer. Are you aware now?

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All photos/videos courtesy of Kellie Andrew. You can follow Brinn’s journey with neuroblastoma on her Instagram account, @BraveBrinn

*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES

9/2:  We Have Stopped Making You Aware

9/3:  Through My Eyes: This is Childhood Cancer 

9/3:  Through My Eyes: What Cancer Leaves Behind

An Army of Support

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Emily and Kevin know firsthand the impact an army of support can provide a family during a crisis. Their daughter, Claire, was 19 months old when she was diagnosed with Stage 4 neuroblastoma in 2011. They received an incredible outpouring of support and wanted to do the same for other families fighting childhood cancer. So they created Claire’s Army to honor Claire – who passed away in January 2012 – and to continue her legacy of her love for others.

Claire

“Our friends, family, employers, strangers and the hospital teams did so much for us during Claire’s treatments and our time of grief,” said Emily. “We wanted to do for others what others did for us.”

Through Emily and Kevin’s grief counseling at KinderMourn, time spent with other hospital families and discussions with medical providers, they realized that not everyone had support when going through a similar situation. This led to creating the following core programs at Claire’s Army:

CLAIRE PACKAGES: Claire’s Army provides a package to a new family facing a childhood cancer diagnosis at Novant Health Hemby Children’s Hospital and at Atrium Health’s Levine Children’s Hospital. The Claire Package utility tote includes towels, a journal, a gas card and additional comfort items. Valued at $150, the package helps make a family’s hospital stay more comfortable and saves them a trip to the store.

MEAL PROGRAM: Claire’s Army has several restaurant partners and a team of volunteers to deliver made-to-order meals to families at Hemby Children’s Hospital five nights a week. Their goal is to expand to Levine Children’s Hospital in the near future. Since starting this program in February 2014, Claire’s Army has delivered 4,000 meals, which offset a financial burden, provide options beyond hospital food and foster family time.

EMERGENCY ASSISTANCE PROGRAM: Claire’s Army works through oncology social workers to pay for bills to help families who are suffering financially. Emergency assistance can range from mortgage/rent payments, utilities and travel needs to insurance. In one case, Claire’s Army was able to purchase an airline ticket at the last minute for a grandmother to fly roundtrip from El Salvador to attend her grandson’s funeral service. To date, the organization has provided nearly $30,000 of emergency assistance through this program.

“We want to be able to help in any way we can and to make an already awful situation suck less,” said Emily who also spent a few years as a nurse assistant at Hemby Children’s Hospital. “As a hospital provider, it was heartbreaking to see what families go through during a diagnosis, especially if the family was alone with no other support.”

Claire’s Army hosts an annual gala – which raised $200,000 this year – and other fundraisers throughout the year. Funds support these core programs, as well as pediatric cancer research through nonprofits like the Isabella Santos Foundation.

“Claire’s life was very brief, but very impactful,” added Emily. “We hope that the work we are doing is an extension of our love for her and her love for others. We want to carry that on and help these families one at time.”

Living a Life in 10 Week Increments

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Written by Melanie Miller, mommy of Emily Erin Fights like a Girl

Emily Miller

Emily is our first born, a very sweet and quiet 8 1/2 year old.  We also have a 6 year old girl named Sadie and Reid our 19 month old ball of energy.  Emily has Autism and is mostly nonverbal, which presents with multiple challenges of it’s own.  On June 17th 2012 Emily started having high fevers and fatigue that lasted about a week.  After a visit to her pediatrician and a few tests she was diagnosed with Mononucleosis. On a Thursday afternoon just about 2-3 weeks later, Emily’s fevers returned and she had what appeared to be a bruise on her right eyelid, so we setup an appointment for the following day.  Later that same day we called our pediatrician because she woke up from a nap and had difficulty bearing any weight on her left leg and was whining a lot.  His advice was to go straight to the ER.

After a long night of tests, the doctors were unable to determine what was really going on so they admitted her.  She was followed by several doctors and several more tests were done. On Monday morning she had a bone marrow biopsy of the left hip, and it was discovered that there were malignant cells in the bone marrow. At first it appeared to be Leukemia, which we were told had a survival rate of 98% and the treatment was done on an outpatient basis, she could even still attend school.  Just 3 hours later the doctor returned to tell us that something wasn’t quite right about how the bone marrow looked and it led him to believe it could be something a lot more serious.  We had just wiped away the tears at the thought of Leukemia, and now he was saying it could be a lot worse.  Again after a few more tests that included a full body scan we were given the diagnosis of Stage IV Neuroblastoma, a treatment plan that spanned well over a year and a half and a survival rate of only 40%.  Our stomachs dropped and we just stared at each other in stunned silence.  How could our daughter be filled with a life threatening cancer and show no signs or symptoms until a couple of weeks ago? We were told that Emily had a large tumor on the adrenal gland that sits atop her kidney and metastases to the bone marrow from her skull all the way down to her legs. She also had a tumor emerging from the orbital bone of the right eye. The image of the MIBG scan is still burned into my brain, it was lit up like a Christmas tree, I remember running out of the room.

Melanie and Emily Miller

The initial diagnosis and subsequent treatment plan was pretty rough; 6 rounds of chemotherapy that required one full week inpatient stay each time, major abdominal surgery to resect the tumor, a stem cell transplant that put us in isolation for almost 4 weeks, a full month of daily radiation, 5 week long rounds of painful antibody therapy and numerous other hospital visits to deal with the multiple side effects from the toxic treatments.  And that was just the first year and change, the relapse was a whole different and painful journey.  I won’t go into a lot of detail, but I will say that when she relapsed, just 16 months after being declared cancer free, it was terribly aggressive and our options were extremely limited.  I spent days researching treatment options, talking to everyone I knew in the pediatric cancer world, and the results were very thin.  Almost immediately we contacted CHOP in Philadelphia, Sloan Kettering in NYC, and CHOA in Atlanta.  With limited options we started radiation right away here at Levine Cancer Institute, to stop the tumor from putting pressure on her right eye, combined with chemo while we waited for answers.  Unfortunately there were almost no clinical trials that she qualified for and no standard of care, so we came back to Charlotte to start chemotherapy.  The side effects from the treatment were incredibly toxic and Emily went quickly from being healthy and robust to thin, grey, and too weak to leave her room for days at a time.  The transformation was shocking and terrifying.  Realizing the treatment was too intense and not seeing the tumors shrink as much as we were hoping, we shifted gears and went to Sloan Kettering in NY.  There we tried a couple of different options and after about 16 months of treatment got her back to remission status.  Fearing another relapse we enrolled in 1 of only 2 options available to help prevent relapse, a clinical trial which has required over a dozen trips to NY within the last year, which is no small feat when you have 2 kids under 5 at home.  But I can now breathe a small sigh of relief to say we have been in remission for almost 10 months, with the last treatment scheduled for May.

Miller Family

We were introduced to the Isabella Santos Foundation in December 2012 when Erin and friends were delivering toys to the hospital right before Christmas. I remember not wanting to leave Emily, as she was in isolation post stem cell transplant, but our nurse told me a little bit about ISF and how Erin had just lost her daughter in June of that year, just 3 weeks before Emily was initially diagnosed. I remember telling Tim, my husband, how she must have remarkable strength to be able to come into the hospital and be here to support all these families just 6 short months after losing her daughter. The following September when Emily had just entered remission we attended the race for the first time and every year since we have tried to be as involved as possible. Anytime I have a question about treatment, advice or just need a shoulder, Erin and the wonderful women of the foundation are always there for me and my family.  Knowing that every dollar we raise could lead to a clinical trial that Emily or our local friends could benefit from, fuels our drive to raise as much as possible.

Do I think that they expect to cure cancer this week? This month?  I don’t think so, but if a trial they fund saves just one child, or gives another child an additional couple of years, then it’s all worth it.  My daughter may only have a measly 5% chance of long term survival, but those statistics change every day, and the next clinical trial that ISF helps fund could be the one that saves my child or one of my friend’s children that I have met along our journey.

Emily Miller

Now I don’t want you to think I don’t deeply understand the reality of my situation, trust me I do.  I have been skeptical and negative since the day she was diagnosed.  I was the one in my family who didn’t have much hope we could beat the odds, especially after her relapse.  I am the one who has been so jaded that when a stranger asks me about her diagnosis and what her chances are, I often simply shake my head and utter the word terminal.  I look away because I hate to see the look of shock and sadness on their faces, but at the same time I am tired of lying.  Tired of slapping a smile on my face, telling them how hopeful we are, telling them that Emily is a fighter and she will beat the odds, tired of having to show any enthusiasm at all when all I want to do it curl up into a ball and take a nap.

Emily has scans every 10 weeks, so I live my life in 10 week increments.  Never wanting to plan anything that can’t be cancelled for a full refund, never wanting even to look that far ahead.  This goes against my very nature.  I am a planner.  I like things organized, I like to pretty much plan out the year ahead.  Get those vacation plans sorted out, summer camps, trips to visit family, and everything in between.  I have to live daily with the constant knowledge that I can wake up the next day and have to drop everything to take Emily to the hospital for a week-long stay.  I say this from experience, as it has happened dozens of times.  The most dramatic was when she relapsed.  It blindsided us, and now I refuse to ever let that happen again.  So I live my life with a constant dark grey cloud hanging over my head, never knowing when that lightning bolt will strike.  Everyone always preaches to live in the moment, live life to the fullest, and I do try.  I do.  I sometimes am able to find moments playing on the floor with my son, pushing the kids on the swing outside, or just cuddling up with them to watch a movie.  But these moments are few because my mind is always turning.  When is the cancer going to come back? Next month? 3 months? 6 months?  Should I try and squeeze in a beach trip next month, just in case?  How about a trip to Disney?  My father constantly teases me that I always talk about vacations, and I admit it, I do.  I have spent countless hours planning trips that never come to fruition, as if I am living in the fantasy of these great trips but never get to take them.  

But now I am starting to feel hopeful again, now I am starting to make plans.  Over the last 5 years since Emily was diagnosed I have seen a lot of progress in the world of Neuroblastoma, and a lot of that success is due to the relentless work of organizations like the Isabella Santos Foundation, and I know every year children like my daughter will have more options because of them. This is why ISF is partnering again with Levine to bring a groundbreaking treatment to Charlotte.  This new MIBG treatment room will be a real game changer for children with Neuroblastoma.  I really hope that after listening to our story that you are motivated to really take action to help raise funds for neuroblastoma research. I really hope you share what you’ve learned here, tell your friends, your neighbors, your co-workers, and your family. I hope that by telling my story it gives you a new face to fight for in your community, a local child that is fighting this awful disease for which there is no cure, for which there is so little funding, for which there is so little hope.

But by donating to the Isabella Santos Foundation you are giving families like mine the hope that they desperately need to keep going, to keep fighting,  to keep hoping.  And just in case you still think your donation won’t make an impact, back in 2007 there was a group of families in NY that went to the lead researcher at Memorial Sloan Kettering and asked what they could do to help their children.  He told them the same thing, that there was a severe lack of funding for research and that while there were better treatments out there, they would not be explored due to the lack of funds.  These families got together, gathered other NB families and raised 2 million dollars to fully fund a clinical trial that began in August of 2011.  This treatment is currently being used to treat kids daily at MSKCC and has been very successful for relapsed Neuroblastoma. This one drug has made a HUGE impact in a very short amount of time. I have met dozens of families from so many different parts of the world that travel to Sloan Kettering for that very treatment.  That treatment wouldn’t exist if it hadn’t been for a small foundation formed by a group of parents who came together and got it done. That is what the Isabella Santos Foundation is doing for children here in our community and for children across the country. So when you feel like your donation is not going to make a difference, let me tell you, it will. The next clinical trial can be that ground breaking treatment that boosts the current 40% survival rate and dismal 5% relapse survival rate, to 80% to 90% to 99%. Please think about this when you make your donation today. Thank you.

Follow Emily’s journey on facebook:  Emily Erin Fights like a Girl