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Asking Others to Give Back For My Birthday

It’s Erin, Isabella’s Mommy… today is my birthday. Each year, I try to act like my birthday isn’t that big of a deal, but for those of you who really know me… it is. In years past it has really been a celebration that lasted well over 10 days. There were private celebrations, lunch celebrations, a girl’s trip, some kind of romantic thing – I loved it all. Maybe it is because there aren’t many times throughout the year where I feel comfortable celebrating myself. Mother’s Day? Forget about it. Christmas? I pride myself on being a great gift giver and love that. So… my birthday is the one day that I can and that is all me.

Some people have birthdays that are during the best times of the year. One of my friends has a Cinco de Mayo birthday… um, I want this. My birthday , on the flipside, is the WORST time of year. February 2nd. Groundhog Day. Also, often times falls on SuperBowl, which is hands down the worst birthday for a woman – ever. So maybe this is why I take the day on and try to make it my own.
But now that I’m a grown adult, I don’t anticipate the birthday for the gifts that I’m going to get. I don’t have that pair of shoes on the wish list for months, waiting for this day so I can unwrap them in a fancy restaurant. These days, I buy absolutely ridiculous shoes like most women – when I can’t afford them, on a bad day of work. But… it is never a regret.

So, at the ripe (and I mean ripe) old age of 43, I chose to do the responsible thing ask others to give back. The death of Madison Fedak over the holidays shook me. Like, rattled me to the core. I kept my distance from her for a long time because she reminded me so much of Isabella. Her look, her demeanor, the way that she interacted with Rachel, even the way that Sophia became so drawn to her. Then she went into remission. I let my guard down because I felt like it became safer. This little girl was going to make it and she could be one of those stories I was so happy to be a small part of.

Then, she relapsed. As a parent of a child with rare cancer, relapses aren’t good. All this work we do, all this money we try to raise… and I’m watching it take one of my favorite people I have met since Isabella died. I remember texting her Mom, while crying and apologizing that we didn’t do something fast enough for her. It was that helpless feeling all over again. This family would speak at our events and drive two hours from their hometown, if we asked, and in the end – it felt like it was all for nothing, because the dreaded story ended the same way. To be honest, I began to question what we were really accomplishing here at ISF.

But, a couple of weeks after her death, I finally had the strength to write a letter to her mom. This is a horrible club that we belong to. But sometimes, someone is sent to us and then taken away. And way too soon. But in their absence, change is made. Isabella was one of those kids, and Madison is another. While I know this doesn’t make the loss any different for her parents, I know that it will over time.

So instead of buying (those overly expensive and way too impractical shoes that seem so “fun”,) I’m asking for donations in honor of Madison. Because she is one of the reasons we are doing what we are doing here at ISF and because she was one of those kids. There was something really special and I want to honor her because she truly was so much like Isabella. That is truly the best birthday gift I can think of. We selected an Osteosarcoma trial in her honor and it’s so much more important than these shoes. Best part, it’s crazy easy to do these birthday fundraisers. Facebook targets you right around your special day and ASKS you if you want to create a charity fundraiser for your birthday. I saw it and thought, “Hell yes.”. A couple of easy clicks later, I set a goal and clicked “share”. The first night I raised over $500. I woke up to donations and smiled because I realized that maybe this is the birthday present we should all give ourselves.

…But. I’ll eventually get the shoes too. 😉

My Facebook Fundraiser

Neuroblastoma Patient Successfully Completes MIBG Therapy in Charlotte

Another patient was successfully treated in the Isabella Santos Foundation MIBG therapy room at Levine Children’s. As a child and family enter MIBG treatment they receive a gift basket specifically paid for by last year’s ISF MIBG Ambassador fundraising efforts. Patients stay in the MIBG room 3-7 days after they receive their injection with parents/caregivers in the adjoining room, so our hope is that these baskets help bring a little comfort in their time away from their own home.

If you look closely at the note, this MIBG basket is thanks to Tim McBride… also known as McBeast! Thanks to Tim and his supporters, we were able to provide a few comfort items, snacks, toys and gift cards for food, gas, coffee, and more. 

Levine Children’s Hospital is 1 of 20 hospitals to have a MIBG Treatment room in the U.S. and the only location in the Charlotte region. The two-room MIBG suite provides targeted radiation to pediatric neuroblastoma patients with minimal side effects. This therapy impacts kids fighting cancer beyond the greater Charlotte region and will eventually expand to include adults with rare tumors.

Through 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:  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.

DONATE NOW

Photos courtesy of Dianna Lariviere. You can follow Max’s journey with neuroblastoma on his Facebook Channel Max’s Fight With Neuroblastoma

*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER

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

9/4: Through My Eyes: Day In the Life Of Kellie Andrew, Warrior Mom Fighting to Save Her Child From Neuroblastoma

9/5: Through My Eyes: Behind the Scenes with Aaron Plummer, Dad to Rhabdomyosarcoma Warrior

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

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?

DONATE NOW

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

9/2We Have Stopped Making You Aware

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

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

Defining 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 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.

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