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.

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