My son Braxston was diagnosed with neuroblastoma on August 17th, 2022. He completed the standard treatment and relapsed in February of this year. We are finishing up the last round of his treatment and hopefully going to be able to start a home medicine that will keep him in remission and be able to be a kid again!
He’s completed 5 rounds of chemo, surgery radiation, stem cell transplant, and immunotherapy. Then this year he did 8 rounds of chemo combined with immunotherapy (all a week in the hospital with a 3 weeks break in between) and then he had 17 days of radiation.
It’s been a journey. Our income has dropped, can’t plan too many trips to see family due to constantly being in the hospital.
Gigi loves to laugh! Almost anything her big brother does makes her laugh. She loves climbing, dancing, fun music, playing games, toys – most kid things – she’s a pretty happy kid.
Gigi was diagnosed with neuroblastoma at 3 months old in October 2020. She presented with several unusual bruises. Our pediatrician followed up with a bloodwork panel, all of which came back abnormal, and it just snowballed from there.
She has high-frequency hearing loss due to platinum-related chemos (primarily cisplatin). She has multiple spinal compression fractures caused by the extensive toll chemo took on her bones. For now, she is also extremely small for her age. She also had one adrenal gland removed with surgery.
We really soak up every moment we have with our kids. And the grandparents spent a lot of time here helping through treatment so our kids have an incredibly close relationship with them.
Theo was diagnosed with neuroblastoma 4 years ago, he is on his second relapse as of three weeks ago, and sadly this time there is not cure.
He had bone pain, and what doctors at the time diagnosed as an eye infection which was instead cancer. He has been through chemotherapy, radiation, stem cell transplant and others.
Going through this, it makes you learn what is and what is not important in life. Theo is the light of my life!
Our sweet baby Lennon was diagnosed on July 13th, 2023. It was a Thursday and a day that truly changed our lives forever.
Our Lennon picked up every virus for several months and it just seemed she was constantly sick, with her sister in school that’s not atypical, but it just seemed like as soon as we got her well, she would get something else.Â
But two weeks to the day she got diagnosed, she started having random fevers. No other symptoms just fevers and they would be fairly high. The first one started on a Thursday and it would just come and go, we watched it till Monday and her pediatrician got us in that morning. By that point, the fevers went away. They did blood work and everything was ok, her labs showed inflammation but right in line with what would be a mild viral infection. Nothing that would be an immediate concern. Our pediatrician is truly amazing and she was absolutely on top of everything. She wanted to watch and see if the fevers came back and we would go from there. The fevers would randomly come back for a day and then stop for several days and continue a weird cycle. And again no other symptoms. It was so strange. We were getting ready to go back for a recheck and Lennon woke up that morning and couldn’t use her right leg and there hadn’t been a fever for a couple of days. Her pedi took one look at her and told me to take her in, she was thinking it could be an infection in the joint due to what we thought was a viral infection.Â
We spent so long in the ER and by this point her labs were off the charts showing an infection, they did ultrasounds and sonograms of the knee, leg, and hip trying to see if there was any fluid, etc. but couldn’t find anything. They started the admission process to do a sedated MRI the following day when the PA reached out to one more person to explain the bizarre symptoms and to get a second opinion. That person said they only had one other kiddo who presented the same way and ordered another ultrasound but this time of the adrenal area above the left kidney… and that’s when they found it. She had a 3×4 inch tumor in her tiny little body. And they knew pretty immediately it was Neuroblastoma.Â
After so many tests and biopsies of the tumor, it showed Lennon carries the two unfavorable genes and her cancer is the most aggressive form of Neuroblastoma. It already was metastatic to two areas, one in the right knee and the other in one vertebra.
Lennon has gone through 5 rounds of chemo, two bone marrow stem cell transplants accompanied with the highest dose of chemos, 12 rounds of radiation, and now 6 months of her hopefully last stage of immunotherapy/antibody treatment. She has spent over 200 days in isolation, and in the 10 months so far she’s spent more time in the hospital than out of the hospital.Â
Cancer has changed our entire lives. Our life will forever be, before cancer and after cancer.Â
We are a really close-knit family and share everything. Overnight it’s like we were separated. One of us was always with Lennon and the other was with our 7-year-old. And then we would switch. It’s been the hardest year of our life, but we are just so thankful to have Lennon here with us. Neuroblastoma is so unbelievably aggressive and sometimes it’s caught too late. We’re just thankful she’s responding to treatment.
Lennon’s the strongest girl. We call her our Giant Slayer like David in the Bible. She is small but so mighty and even though the odds are stacked against her, we believe she will conquer this giant!
Zaira is a bright beautiful two-year-old with so much personality and sass. She adores her big bro and plays silly with him. She loves all things princess and ballerina. And even through these rough times, she surprises everybody with her attitude.
Zaira was diagnosed on January 21st of 2024. She was doing completely fine and nothing could suggest she had a mass growing in her chest, we found out by complete accident while she was getting checked for a knee accident. We are so very thankful for the doctors who spotted something wrong and made us go back!
She has been through all possible inherent exams and last month got a port-a-cath with her first set of chemo. We are new to the area and live on Camp Pendleton (Marine Corps base). We are slowly rebuilding our village here so the biggest struggle has been driving back and forth to Rady’s in SD and family arrangements for our older son.
The shock has been hard to digest for all of us but we’re trying to face one challenge at a time and be present for our kids. Our relatives are spread literally all over the world and they’re trying to support us as much as they can from a distance.
Our family is a proud Navy family, we’ve been traveling all over in the last few years on military orders and we received this shocking news of our little girl only after a month of being in California. The past few months have been the most challenging for everybody adjusting to a new environment first and then dealing with cancer. We’re so grateful for Rady’s Children’s Hospital and all the staff really. They’ve been a blessing to us.
Azalea is a sweet funny little girl. She loves dancing, sparkles, girly colors anything fun. She is a girly girl. She loves animals, her siblings, and the beach. No matter what obstacles she’s faced with she always has a smile on her face and keeps fighting.
She was diagnosed on 3/7/2017 at age two and relapsed on 10/19/18 just before her fourth birthday. She has currently been NED for three years and is off of active treatment for one. Before diagnosis, her stomach was distended, she was having terrible night sweats, tired a lot, anemic, and on and off throwing up.
Azalea has been through nine rounds of chemotherapy, twelve-hour surgery to remove her tumor, radiation to her abdomen and right arm, ten rounds of immunotherapy, and a Neuroblastoma vaccine trial twice. She’s also had countless central line survives, biopsies, scans, and blood transfusions.
She brings hope to a lot of people as she is a survivor. She truly is a miracle and we are so blessed to have her.
