Skylar was diagnosed with Neuroblastoma at 4 months old. Skylar was diagnosed incidentally. She was rushed by ambulance to the hospital for a fever of 105 and seizures where they diagnosed her with a kidney infection. Due to the severity, they did a kidney ultrasound where they found a mass. After a CT scan, she was confirmed and diagnosed.
Skylar was diagnosed with a rare neurological disease associated to the neuroblastoma called opsoclonus Myoclonus ataxia syndrome. This causes a wide range of issues including but not limited to eye movements, involuntary muscle spasms/jerks, sleep disturbances, mood and behavioral issues and sometimes the inability to walk or talk.
Skylar completed 6 rounds of chemotherapy and 10 rounds of IVIG and is now NED (in remission). Unfortunately, she had an OMS relapse and has now done 5 days high dose steroid dex pulses, 4 weeks of rituximab treatments and now is currently doing monthly IVIG treatments along with steroids daily at home. Due to the ongoing treatment and impaired mobility, I have had to quit my job and finances are very tough right now. Skylar has an 8 year old brother who has completely changed from all of this.
Skylars diagnosis changed everything we thought we knew about life for the good and the bad. We never take a second for granted anymore. But it has caused so much stress and tension and depression in our household. Faith is what keeps us going.
Despite everything Skylar has been through and still going through, she seems to always have a smile on her face. She has taught us about courage and bravery that we didn’t know was possible.
Abram was diagnosed on January 7, 2020. He started struggling with constipation, then began having severe leg and back, and neck pain. After continuing to go to the doctor numerous times for all of the pains, with no clear reason what was happening, we eventually ended up in the ER with fever and severe back pain one day, which led to a CT scan and being diagnosed.
He had done 5 rounds of chemo, one tumor recession, two stem cell transplants, and we currently are doing radiation along with chemo. His currie score started at a 19 when diagnosed, and is currently at a 12. As a result, our next step will be to do immunotherapy and chemo combined after we finish radiation. We are very much still in the battle but he is a fighter.
Abram lives with both parents and has three younger siblings: Ezra (brother, 6), Jubilee (sister, 4), and Eli (brother, 3). This year, we have had to lean heavily on our extended family in order to function. Thankfully, Abram has amazing grandparents who have given up so much to help us with the other kiddos, and Abram to get through this season. On top of just the cancer diagnosis, Covid has made this season especially hard. Abram is so close to his siblings and they are not allowed to visit him when he is admitted to the hospital. When Abram did tandem transplants he did not get to see his siblings and his dad (mom and grandma rotated at the hospital bc dad had to work and they only allow 2 caregivers), for 28 days each time…. so 56 days total Abram lived at the hospital this summer missing his daddy, brothers, and sister. It’s crazy hard, but we are surrounded by amazing family and friends who help carry us and a God who loves us.
He’s amazing, and such a special kid. He’s been through more than any 7-year-old should, and yet he still can laugh and play. I’m so proud of him.
The last week of April, Hazel seemed to have some sort of bug or virus. She had a few days of pretty high fever and vomited a couple of times. By the end of the week, we thought she was over it. Then the next week she began to complain of leg pain. We thought it might be growing pains or she was sore from all of her usual rambunctious running and jumping. By mid-week, she didn’t want to walk and started to cry when we would sit her up in bed to pick her up. We had to carry her to her meals and to the potty, and a mild fever returned. I called the doctor and they said to go to the ER. Everyone thought it was a blood-borne bone infection at first. We found out that Hazel had cancer on May 11, 2020, the day after Mother’s Day. We found out it was stage 4 Neuroblastoma the next day.
She will be in treatment through most of 2021: another cycle of chemo, then two rounds of very high-dose chemo with stem cell transplants to rescue her bone marrow, radiation, immunotherapy, and retinoid therapy. That’s the standard treatment, which is subject to change if cancer progresses during treatment at any point.
Between covid and cancer, the isolation is becoming unbearable. Hazel longs to play with friends, but obviously, we are worried about exposing her to germs with her suppressed immune system. I also think people are afraid to be around us, lest they unwittingly expose us.
We are all struggling and afraid. My sweet six-year-old boy loves his little sister fiercely and his behavior is suffering. He is worried and he’s trying to process that he could lose his sister. He’s jealous of all the attention she’s getting and then he has to deal with his guilt for feeling that way. My husband and I are so stressed out and feel so helpless.
Mela loves EVERYTHING. She was just starting gymnastics when she was diagnosed. She also snowboards and rides dirt bikes… after she’s done playing dress-up with her baby dolls of course!
She was diagnosed on July 14th with Neuroblastoma. Usually, neuroblastoma is not detected until it has spread because of the aggressive nature of this type of cancer. Mela fell off a swing and the impact caused a large hematoma to form on the tumor surrounding her left kidney. The hematoma caused pain and constipation which led to her diagnosis.
She had a tumor resection on August 8th. She is required to complete 6 rounds of chemo, a tandem stem cell transplant, radiation, and immunotherapy. Her treatment will last for more than a year. We are currently in the chemo phase.
Mela is an inspiration! She is always smiling even when most adults wouldn’t be.
Beau loves his siblings, he loves to drive his hot wheel cars all around the house while saying “vroom”. His smile lights up our entire world. Beau loves to laugh at games like “peekaboo” as well as being chased around the house. He loves to play in his big sister’s room with her.
Beau was diagnosed with Neuroblastoma one week before Christmas in 2019. Prior to diagnosis, he had developed bluish lumps under his skin. He has had eight rounds of chemotherapy, and he is now on immunotherapy until January. The medication he is on makes his skin sensitive to the sun so he cannot be exposed to the sun very much.
Our entire world has been changed and I am not the same person I was before Beau got sick.
