Savi loves all things Moana and Kung Fu Panda at the moment! She loves to play outside with her big brother and dance to the “Everything is Awesome” LEGO movie song. At 2 years old her attention span is very short and we call her hurricane Savi as she loves to make big messes around the house. She’s also such a chatterbox and loves interacting with other kids!
Savi was diagnosed with high-risk neuroblastoma in late March 2019. I noticed that she had frequent belly aches and seemed so irritable throughout the day. During bedtime, I would rub her belly and that made her feel better. Her appetite also took a hit and decreased tremendously the week before she was diagnosed. Her pediatrician felt the tumor during her 18-month visit.
So far, she’s undergone 5 cycles of chemo, 1 MIBG therapy session, and the tumor resection surgery. I feel like I hold my breath throughout each step of her treatment and I despise the aftermath she has to endure. It hurts my heart to watch her suffer and I wish they could transfer it to me instead. But here we are done with phase 1 out of 3 of her treatment plan.
Our lives have been turned upside down since the diagnosis. So much anxiety and depression we’ve had to go through. We now never take our time as a family for granted and try to live the days when she’s feeling good to the fullest.
She is such a fighter, all I can hope is that she keeps on fighting and we will be right beside her in every step.
LilyRose was diagnosed with neuroblastoma on April 5th, 2019. She was having fevers on and off and developed a limp. I took her back and forth to the hospital and she was misdiagnosed a few times. Finally, on one visit, they did an abdominal ultrasound and there was the mass.
LilyRose has had chemotherapy, radiation, and a tumor resection of the abdomen. She suffered a silent seizure and due to this had an emergency craniotomy. She relapsed in March and is now on hospice.
She loves being around the people she loves and trusts. She an amazing girl!
On January 9, 2019, I brought Audrey to her pediatrician, who quickly sent us to the ER. Within hours, an oncologist told me that our 21-month-old daughter had a large tumor in her abdomen. Then after only 5 days on the oncology floor, she was admitted to the Pediatric ICU (PICU) because of bleeding complications from her tumor. Audrey stayed in the PICU for 28 days, and 20 of those days she was on a ventilator in a medically-induced coma. Audrey underwent multiple emergency procedures because her tumor was bleeding into her belly, which is not normal for neuroblastoma. They tried so many things to control the bleeding, including an embolization, dozens of blood and platelet transfusions, multiple abdominal drains, and two rounds of emergency radiation (which required transport to another hospital and back each time).
During her time in the PICU, she almost died due to a massive bleeding episode that the nurses and doctors just barely controlled in time. She received emergency radiation on a Saturday as a last resort, but thankfully it worked and stopped the bleeding from her tumor. Once the bleeding stopped, she was able to start to heal and was woken up from her coma and eventually transferred back to the oncology floor.
In total, her first hospitalization (starting on January 9th) lasted 56 consecutive days and included her first three cycles of chemotherapy. During that hospitalization, Audrey had to re-learn how to sit, stand, and when she was discharged, was in the process of learning how to walk again.
Audrey went on to have the full course of neuroblastoma treatment: 5 cycles of chemotherapy, surgery, stem cell transplant, radiation, and immunotherapy. She is now on a 2-year maintenance therapy medication that will hopefully keep cancer away forever.
Audrey finished frontline treatment for neuroblastoma in March of 2020 and is coming up on her 6 months scan. Since January of 2019, we have added a baby brother, Everett to our family. I actually found out I was pregnant with Everett six days before Audrey’s tumor was found. I stayed with Audrey through every inpatient growing more and more pregnant, and Everett came to the hospital with Audrey and myself for all five of her immunotherapy cycles, starting at 3 weeks old. Audrey also has an older sister, Clara, who is now 5. Her sister and brother have been through so much too. We know being together is the biggest gift, even in the midst of a pandemic.
Cancer has changed our perspective on everything in life. We have always loved our children and cherished them. Cancer taught us though, that nothing is guaranteed. We almost lost Audrey in the PICU, several times. The doctors pulled Hail Mary’s and it is a miracle that she is still alive. So we celebrate everything. And the things we might have little or big things we might have worried about before, we don’t necessarily worry about anymore. We know that the most important thing is being together, loving each other, and making sure our kids know we love them with all our hearts.
Emily loves farm animals and bubbles. She’s sassy, spunky, and very friendly. She loves to say hi to everyone she meets.
Before she turned one, she had paralysis from the waist down. Right after her 1st birthday, a biopsy and mibg confirmed she had Neuroblastoma in April of 2020.
Emily doesn’t walk yet. She has a spinal cord injury due to tumor compression of her spine, but she has started to stand holding onto furniture again.
Through all of this, Emily always has a smile on her face. She is my hero!
Nora was an energetic 2.5-year-old girl that loved playing around but over just a few short days she began to have balance issues and mild intermittent tremors throughout her whole body. She soon lost most gross motor skills and then her fine motor skills; in which she wasn’t even able to sit up under her own power at all. After multiple appointments with different doctors, Nora was finally admitted to the hospital where she was diagnosed with Neuroblastoma after several scans. In addition, she was diagnosed with Opsoclonus Myoclonus Ataxia.
Nora currently does not have any limitations due to her diagnosis. She did acquire Opsoclonus Myoclonus Ataxia, a neurological condition, because of the cancer though so we have to be very strict with germ management. The times that we do activities out in public with Nora we are very diligent with sanitizing everything before she plays with it.
Nora’s cancer diagnosis has definitely changed our family life. While we truly try to cherish every single moment that we are able to have with Nora now we as parents also sadly live with a high level of anxiety. We pray that Nora’s cancer does not relapse. It’s been so tough not being able to see Nora live the normal life that a toddler should be living. She shouldn’t have to go to the infusion center and doctor all of the time for treatments. Nora has been a trooper though and has been so strong through this process!
Anything makes Xander laugh. We are big Marvel fans and we call him our little Super Hero.
He was diagnosed at 10 weeks old with Neuroblastoma. He had a large abdomen that two pediatricians thought was gas. I am thankful I kept persisting something wasn’t right.
He has had a biopsy, 7 rounds of chemo, MRI’s, MIBG’s, blood and platelet transfusions, and surgery with a long road ahead of more treatments.
I am unable to work due to his diagnosis, we don’t have much of a social life anymore, and “friends” don’t seem to reach out anymore.
Xander is such a champ with all he has gone through.For such a little guy – he’s a fighter!
