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.
Perspective: Cancer Mom
Name: Dianna Lariviere
Son: Max Lariviere
Cancer: Stage 4 High-Risk Neuroblastoma
Diagnosed: 08.05.18
Treated at: Levine Children’s Hospital
Max has had a rough year with many setbacks, delayed treatment schedules, prolonged hospital stays and high anxiety. These are just a few thoughts from her son that scares this cancer mom. Dianna was featured on our social channels (Instagram & Facebook) on 9/6/19. It’s real and it’s raw… just like childhood cancer.
My Child Now Wants To Keep His Cancer…
He lost his friends because of his cancer and his new friends, his nurses, he will lose, when it is gone. He will be 4 in October. So now he has to see speech therapy to retrain himself that it’s ok to eat food by mouth, he will need speech therapy for hearing loss and he will most likely need therapy to realize that he does NOT want to keep his cancer. All he knows are these nurses. Those are his friends because he’s been isolated for a year now, and it’s not over. A 3 1/2 year old thinks this way. Max is pretty advanced. He knows exactly what is happening to him and that’s what scares me. He’s not going to forget all of this.
It’s All My Fault…
He’s stuck in the house all the time like bubble boy and has no childhood. It’s just awful. He says “It’s all my fault” and “I’m sorry” all the time. He thinks the cancer is his fault and shuts down when we try to talk about anything.
I’m Never Going to Get Better…
“I’m never going to get better.” – Max
That’s how our conversation home from clinic today began. So much emphasis is placed on the physical side effects of cancer and not the psychological. I can’t tell you how many times people have said Max won’t remember half of what he’s going through. They are wrong. He was almost 3 when he was diagnosed. He’s going to be 4 next month. He has spent the past year living in a hospital… living a complete nightmare all while in his toddler years, when developmental stages are so crucial.
People don’t think a child Max’s age can have severe anxiety or PTSD but they can, and he does. I only hope one day he can have less of it, that we all can have less of it, but he has to live with this for the rest of his life as well. Every what if.
https://isabellasantosfoundation.org/wp-content/uploads/2019/09/Post2.jpg682591Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2019/03/logo.pngRachel Wood2019-09-06 14:11:542019-11-15 22:35:58Through My Eyes: What My Child Thinks about Cancer, What Really Scares This Cancer Mom
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.
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)
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?
https://isabellasantosfoundation.org/wp-content/uploads/2019/09/Post3.1.jpg40323024Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2019/03/logo.pngRachel Wood2019-09-04 23:16:222019-11-15 22:18:31Through My Eyes: A Day in the Life of Kellie Andrew, Warrior Mom Fighting to Save Her Child from Neuroblastoma
Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support.
By Kelly Weaver
Kelly is Mom to Andrew, who was diagnosed with neuroblastoma at four months old. Andrew is currently 4-years old and cancer free.
“We found a mass in your son’s chest. At this time we do not know what it is, so we are transporting you to Levine Children’s Hospital. You will be a direct admit to the 11th floor, Pediatric Oncology.” These words will haunt me forever. As I held my four month old son, it seemed surreal that the hospital pediatrician could be talking to me, about my son, and that she used the words “pediatric” and “oncology” in the same sentence. A few days after being admitted, my son was diagnosed with neuroblastoma.
The outpouring of support my family received was heartwarming and beyond what we could have imagined. We were very lovingly supported by our family and close friends. Through Andrew’s course of treatment, we learned how many friends we really had on our support team. We received notes of encouragement, via cards, social media, and Caring Bridge posts, along with gift cards for meals. Neighbors walked our dog on a routine schedule they set up and home cooked meals were provided at the end of long clinic days. We were taken care of by these gestures of tangible support. Our friends and family took care of us, so we could take care of Andrew. To me, showing support, means never letting anyone think they are forgotten. Everyday we received inquiries about Andrew’s health, what we needed, and how individuals could assist in raising fund for pediatric cancer awareness and research. Andrew is now four, thriving, and in remission for over three years. Our visits to clinic and Levine Children’s Hospital are a combination of yearly survivorship appointments, dropping off donations, and visiting friends who are in the midst of their own fight against pediatric cancer.
My family found ourselves in a terrifying situation, but not alone. Via the pediatric cancer community I now have dear friends who share the same fears as me. Fears about relapse, fears about long term side effects, and fears about the lack of funding for research. But through these friends, I also have a level of support, understanding, and reassurance that no child will fight pediatric cancer alone. We won’t let it happen.
Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.
https://isabellasantosfoundation.org/wp-content/uploads/2019/05/IMG_8199.jpg960721Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2019/03/logo.pngRachel Wood2019-05-27 14:26:532019-08-19 20:31:39Defining Support, The Cancer Mom Series: Kelly
Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support.
By Kellie Andrew
Kellie is Mom to Brinn, who was diagnosed with stage 3 high risk neuroblastoma in December 2018. Brinn is currently 2 years old and in treatment at Levine Children’s Hospital.
There’s a lot going on in our family. Happy and sad. Hard and then even harder. Our heads are just above water most days. But we are finding a way to be okay. I recently said that we live just one day at a time. But that’s not true. It’s really one moment at a time. Sometimes the days are just too long and hard to think about.
The word ‘support’ for me personally is very broad. It means a card, a comment on social media, sharing a story online, a text, or phone call. Support means a meal, a gas card, a basket of items on my front porch, the offer to mow the yard or clean my home. It means a coffee mug, a soft blanket, an eye mask, and a new nail polish. It means a self-help book, being added to a prayer list, or coming to visit and just listen. Support means offering to watch the kids so we can go have dinner and have a moment to ourselves.
I also feel extremely supported through the hospital and clinic. I feel heard and respected as her mother at all times. I feel that my thoughts are valued, which encourages me to be a part of each step in her treatment.
Support means just knowing that someone else is thinking of us and making a point to let us know.
I can only speak from my experience but without the things I mentioned above I feel that I’d really be struggling much more. I do feel I have a ‘job’ to keep everything together—physically and emotionally—for my family. That is pressure I put on myself. What’s the saying, ‘If momma ain’t happy, nobody’s happy?’ There is so much truth to that! I don’t want anyone to worry about me not being good. Getting a quick text or opening a card in the mail or having lunch arrive at the hospital from someone lifts my spirits. It makes me see just how good people can be, just because they want to be; restores my faith in others. In turn, I want to put that gratitude and happiness back into my family.
Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.
Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support.
By Dianna Lariviere
Dianna is mom to Max, who currently is in treatment for Stage IV High Risk Neuroblastoma.
Dianna & Max
When Max was diagnosed on August 5, 2018 our lives were forever changed, and it’s been extremely difficult in so many ways we didn’t even imagine possible. We live in a very rural community and it felt like everyone, even without knowing us personally, immediately dropped to their knees in prayer. The outpouring of love for our son was and still is indescribable. We moved south 8 years ago and to have so many people come together for our son still brings me to tears. The impact Max has made in a weird way helps me. His disease has put so many parts of life into perspective for not only us but everyone that knows him or follows his journey.
It took a very long time for me to feel like I was ready to truly speak about being a cancer mom. I have developed very bad anxiety and to be honest, I am angry. Sure I do the updates and post about how pediatric cancer deserves more federal funding but to really talk in depth about the situation didn’t happen until more recently, and we are 9 months into an estimated 3-year treatment plan that’s 5 months behind the original schedule due to various factors. Our social worker reached out to another cancer mom who’s son had a similar diagnosis and is doing well. My anxiety and worry was really getting the best of me and I needed to hear from someone who lived it that there was light at the end of this pitch black tunnel. She checks in all the time and has really been a blessing to me. I don’t know that I’ll ever be able to show her how much she has helped me but someday I’ll try! I’ve met other cancer moms that have treated at our hospital, Levine Children’s, and having someone who has lived the nightmare that you can openly talk to, that completely gets what you are saying without judgment, is a huge stress reliever. You will never meet a group of more badass women (am I allowed to say that?!) than those who have had to watch their child, many times helplessly, endure treatment for cancer.
I am extremely thankful that we are treating at a hospital that provides such close care to the patient and family. It really is a family. These children bond so closely with the nurses and oncologists, social workers and child life specialists. I was going to count how many days we have spent in the hospital but I don’t think that’s a good idea because it’s way more time than we have spent home.
The parental support is so important. I have friends and family that check on me multiple days a week. I don’t always respond and they don’t care. They just want me to know that they are there, from a distance, ready whenever I am for whatever I need – a cry, a scream, a hug, to vent or an adult beverage and not talking about the c-word at all. I’m told quite often that I need to take care of myself to be able to take care of Max. I’m still working on that part. I love to do arts and crafts and garden but it’s hard when you aren’t home often or your child isn’t strong enough to allow for you to get that release. Trying to fit in family time is difficult as well. It’s not often the 3 of us are all together.
I will forever be a cancer mom. I’ll never be that person I was before I was told my child has cancer. While everyone is wishing for their child to make the sports team or be top of their class or to not catch the stomach bug being passed around, I’m wishing for survival. So to all those who have reached out, prayed and sent positive vibes, fed us and provided us with gas money, sent Max gifts to put a smile on his face and provided an ear to talk with – THANK YOU! Your support matters more than I could ever put into words.
Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.
