Amber is the mother of Vivian. A 3 and a half-year-old little girl diagnosed with Upd Beckwith-Wiedemann Syndrome and most recently Stage 4 Wilm’s Cancer. I connected with Amber on Instagram and have watched her family’s journey with her daughter. Vivian had an ultrasound in December of 2019 and no cancer was seen. Fast forward to April 2020 and she was diagnosed with Stage 4 Wilms. Her story is a true testament to what BWS children face and their risk, as well as the strength these children encompass. Earlier this week we sat down with Amber for a podcast episode on our podcast Because We are Strong, however, I had a few additional questions to ask Amber about her story which you can find below
When did you find out Vivian had BWS?
She was clinically diagnosed at 3 weeks on on February 14th, 2017. Her blood test was done in April to confirm.
Did you have to fight and push for a diagnosis?
Her Pcp is the one who spotted it. She asked about her tongue and if she always had it out. She had a coworker who had a BWS patient and she said to refer us to genetics. She also had an appointment with her dermatologist because she was born with a non-infantile hemangioma. Right away her dermatologist asked me all kinds of questions about her size. She helped get the ball rolling with the genetics department and set up an MRI. She was nervous the hemangioma was possible neuroblastoma. The pediatrician who was in the delivery room disagreed and was trying to convince people we knew and trusted that Vivian absolutely didn’t have BWS. The pediatrician’s opinion was the other hospital was just trying to play the hero. We were told we shouldn’t do the MRI because it was completely unnecessary and reckless to put a baby that young under anesthesia for nothing. I had a spilt second where I second guessed the decisions and canceled her genetics appointment. 30 Minutes late I changed my mind about the cancellation and called back to reschedule it. They had already filled the spot with the no call list. I called Vivian’s PCP up frantic and told her what I had done and she called back and told them it was urgent. Thankfully Vivian was put back on the schedule and the rest is history. She had her MRI 2/13/17 clinical Diagnosis 2/14/17 surgery to remove hemangioma 2/27/17
What Type of BWS does Vivian Have?
She has UpD
What cancer stage did they diagnose Vivian at and why?
Stage 4 favorable history. Her tumor itself was small and seemed like it was isolated but it was a small tumor made up of a cluster of 8 separate tumors. On top of that, they took into consideration her BWS and also two spots that were seen on her lungs (2mm & 3mm) They made a team decision to stage her there to follow that chemo regiment. It was small and looked promising but with the way the tumor presented and the BWS, they couldn’t be 100% sure of any Metastases. That’s why they went this route ensuring us this stage 4 diagnosis is different than adult stage 4.
How has cancer affected Vivian’s relationship with her sister?
I think it has brought them closer. We tried our hardest to make sure my oldest still felt so special and never left out. Anytime Vivian got a small gift so did Addison. She is a natural healer and loves to nurture. We had been super open and honest with her and said look this is saving your sister’s life. Please don’t be jealous we promise you this isn’t something fun and special we do without you. Vivian has to fight this fight so she doesn’t die and is with us not with your grandpas in heaven. I know that might sound harsh but it helped her. She instantly turned into a mama hen. She is so sweet to her sister post-treatment and helpful to me. Always wanting to help and be apart of the team to help get her sister better. I think it’s given them an even stronger bond. We have also made sure to make special Addison days to reward her for being so sweet and to help her also feel special!
How many surgeries and chemo treatments will Vivian have total for her cancer treatment?
So far 2 surgeries. One to remove the tumor and kidney and the other one to remove the spots on her right lung which ended up being blood clots not wilms. She’s had 6 CTs and two MRIs so far. All of which needed sedation and we have more of that stuff coming up. It’s a journey.
How is your support system?
Amazing! Couldn’t do it without them!
What is your advice for BWS mothers?
Don’t live in fear live in the now. I’ve lived in both and it’s so much better for everyone when you live in the now. Prepare yourself however you have to on scan days because unfortunately this is a possibility to become our reality, but don’t live in the fear. Celebrate and appreciate the good!! Don’t feel bad when you get clear scans and you have a friend that’s child doesn’t! I promise you we are rooting for you to always have healthy babies! Always always always trust your gut!
What is your advice for mothers who find themselves in your shoes and their child facing cancer?
Take it one day at a time. Some days you might find yourself feeling like you can conquer the world and others you might question how you even got out of bed. Feel those feelings. It’s an unexplainable rollercoaster ride of emotions. Feel them all. Cherish the good moments when you can! I promise they become that much sweeter. All the pain you are feeling now won’t even compare to the joy that will come when your child rings the bell. Hang in there mamas! There’s a community out there that hears you, sees you, and is routing for you! You got this. PTSD and anxiety is real. Breathe and take it day by day.
There was so much I learned from my conversation with Amber. Amber consistently trusted her gut when it came to her daughter and it most likely saved her daughter’s life. Often times mother’s aren’t credited with how hard they push. Their seen a crazy. Over dramatic, but mother’s know. We know our children better than anyone else on earth. Amber trusted her gut and her daughter is living because of it. So always remember momma’s – you & your actions have significant impact on your child and their care. Don’t ever hesitate to raise the alarm. You will be so grateful in the long run.
Live Large & Stay RARE.