Ever is the smiley-est baby we have ever met! Even his oncology team agrees. He has a single tooth he likes to show off with the largest grin on any occasion he gets!
Ever started having unequal pupils and a droopy eyelid. An MRI, ordered by the ophthalmologist, found a large abdominal tumor that was secreting antibodies and attacking the nerves of his eye. We met with the oncology team and followed the tumor for a couple of months with ultrasounds, but it grew rapidly. Ever had open abdominal surgery to remove the tumor. He had severe intraabdominal bleeding from the tumor and was admitted to the PICU. Although the surgery was hoped to be curative, in March we found progressive cancer in his abdomen again and we started chemo.
The chemo tires him out and makes him nauseous, but he is still doing everything a 9-month-old should! He grins and laughs at everything, wants to eat anything he can get his hands-on, and is trying to learn to crawl to chase his sister and the dog. He also has lost most of his hair, but keeping a little peach fuzz right on top!
We have struggled financially due to the high cost of treatment and being on a single pediatric resident salary. I (his dad) am a pediatric emergency medicine fellow so know both the medical side and the family side and it has been challenging and at times traumatic to work in the same hospital Ever gets his treatments. Our 5-year-old (and both parents) have also struggled with how to manage our worries for our little guy!
Ezlynn was a completely healthy toddler until she wasn’t. In February of 2020, she spiraled downhill at such a fast pace that if we hadn’t fought for a second (and a third opinion) and kept bringing her back, fighting the doctors for more answers, we may have not caught it in time. She was misdiagnosed multiple times and literally stopped walking because the pain from cancer all over her bones and in her hips and in her marrow was too much.
Her father had to stop working because with the Covid restrictions, only one parent was allowed at the hospital with Ezlynn and we also have another daughter, who was four at the time of diagnosis that needed care at home.
She is at the end of her frontline treatment (still doing a trial) and there is currently no evidence of disease.
Nora was originally diagnosed with Neuroblastoma in January 2018. She relapsed in November of 2020. She was perfectly healthy until her tummy got huge and so distended.
Nora did 6 cycles of chemotherapy and multiple surgeries including a large resection. She also had a stem cell transplant, 12 cycles of radiation, 6 courses of immunotherapy, and almost 2 years of DFMO prior to relapse.
She had many PICU stays and was on a ventilator. So far with her relapse, she has had another large resection surgery, port placement, and 4 cycles of chemotherapy and immunotherapy.
Nora is brave and strong! She has touched so many people in our community. She guides them with her strength.
Remy had discoloration on his upper eyelid that turned into “raccoon eyes” which is a telltale sign of Neuroblastoma. He was less than one when he was diagnosed.
He is severely immunocompromised due to chemotherapy. He has to be in a very clean environment with no contact with people. We haven’t been home since coming to Seattle Children’s Hospital on March 8th. We live here now until his treatments are complete. He has had surgeries, scans, and chemotherapy.
Please keep Remy in your thoughts as he fights this battle!
Lyla was diagnosed with (non-hereditary, unilateral) Retinoblastoma at just 10 weeks old. Her father and I noticed a sort of glow in her right eye and knew something was off. We took her to the pediatrician who noticed there was no red reflex present in her right eye and suggested we see an Ophthalmologist immediately. She was diagnosed with cancer the following day. By that time, the tumor was already covering 80% of her right eye. Had it gone unnoticed, the tumor would have gotten so big that it would have traveled through the optic nerve and metastasized to her brain.
Lyla has had multiple surgeries/ MRIS/ EUA’s (examinations under anesthesia), the first being at 10 weeks old, including port placement/ removal surgery. Because her tumor was so advanced before being removed, pathology recommended preventive chemotherapy. She began 6 rounds of systematic chemo at 3 months old. Miraculously, Lyla was pretty unfazed by chemo and had hardly any symptoms! I was happy to be able to breastfeed her throughout her entire course of treatment. The hardest part was probably dealing with her port and making sure it was always clean and out of her reach so she couldn’t mess with it at all, along with the weekly blood count checks/ appointments during the 6 months of treatment. Lyla had to be monitored very closely, as any sign of fever for whatever the reason meant an instant hospital trip and 48-hour stay. By the grace of God, she never had a fever or needed any blood or platelet transfusions and never had any sort of reaction to the chemo meds. It is absolutely mind-blowing how strong and brave these little fighters are! She has routine MRIs every 6 months for 2 years post-treatment. After that, she will do in-office checks annually with her Ophthalmologist.
Lyla is an only child so her father and I were able to devote our undivided attention and pour every ounce of love, faith, energy, and strength to getting her through this journey. We of course had good and bad days and tried to remain positive, knowing that we wouldn’t have to withstand this storm forever. There were times I didn’t even know how to feel but I knew I had to be strong for her and be there to give her whatever she needed to feel loved and comforted at all times.
I am happy to share that Lyla was officially declared cancer-free on January 28th, 2020. I often think about what the conversation will be like when she is old enough to understand what she went through so early on in her life. It is crazy to think that one day I will have to explain what she went through, while she had no idea what was going on. I am eternally grateful that she is a survivor and I will be able to get the opportunity to tell her the journey she went on and what a brave baby she was! She is and always will be my hero!
Gigi is a sweetheart. She enjoys laying and exploring. She absolutely loves her big sister with who she shares the same birthday.
Before diagnosis with Neuroblastoma, GiGi had wheezing early in the day along with a fever. We called the virtual health line to speak with a nurse and eventually a physician. We had a video conference with the physician. She then recommended that we go to the pharmacy for Pedialyte and then go to the children’s urgent care. I asked that she hold on as I was gathering more information from our nanny that cares for GiGi and her sister during the day. While she was on hold, she had an opportunity to watch her breathing pattern better. After I came back to the call she advised me to skip the pharmacy and urgent care and to go straight to the ER instead.
Once we arrived at the ER, the team suspected she had a respiratory process occurring due to her labored breathing. I just so happened to mention the size of her stomach to one of the nurses. An abdominal ultrasound and X-ray were ordered. It was the ultrasound that detected her tumors. It was the belief this day was divinely orchestrated.
She cannot enjoy her infancy as much as we would like her to. Can’t play in the water or take a bath because of her Hickman line, can’t enjoy the company of others because of the risk of infection.
We give thanks too though because we know that her situation could be even worse.
