Virginia is a bit shy but she has an amazing sense of humor. She loves art. She also loves animals. She has 2 labradoodles and has never met a strange dog in her life. She asks to pet everyone that she sees. She also loves foxes, elephants and foxes.
She was diagnosed in 2015 with Anaplastic Ependymoma. She was sick for about a week before her first diagnosis. She had terrible next pain, balance issues and was throwing up.
Since then, she has had 4 additional reoccurrences. She has had 4 brain surgeries, 2 rounds of radiation and is currently on an immunotherapy trial. She is had for her 5th brain surgery in July.
We have had a hard time being apart and having to travel. We did the first radiation in Jacksonville, Florida. The second radiation in Memphis, Tennessee. Her clinical trial is in Augusta and we have to travel there once a month. Her upcoming surgery will also be in Memphis. Luckily, it is only 3 hours rather the 6 or 7 hours to Augusta, which we plan to continue. Also, we plan to change the chemo that she is on after the surgery. It will be more harsh and she will lose her hair.
We have been walking a very tough road for almost 4 years though we try to be positive and lift each other up and love one another and enjoy every sweet moment together.
Savannah started having head/neck pain in December 2016/January 2017. Then she started vomiting around February. It lead up to vomiting daily every morning. In March, she would vomit multiple times a day, everyday. We saw an endo doctor who sent us for our first CT scan. She was diagnosed with a brain tumor on 4/25/2019. Her cancer diagnosis came one week later.
She has had 7 weeks of radiation treatments. Savannah has very thick, curly hair. They shaved the whole back of her head, She lost the hair above her ears from the treatments. She wasn’t eating and slept a lot. She needed Zofran everyday for nausea.
A childhood cancer diagnosis has caused fear…a daily fear . During treatment your body clicks into auto pilot. You just do what the doctors recommend, you pick the best plan for your child and they make it happen. Once it’s over and the reality sets in of going back to school, going back to work and trying to fit back into a society that kept going on without you it’s hard. You feel like you don’t belong. The fear though, the fear that any day this beast could come back and take her precious life, it is so intense and so real. We try to live everyday to its fullest. I appreciate my daughter even on her bad days. We all live on borrowed time.
Brandi is a very positive child. At 20 months she has no words, communicates through a few signs and gestures, but it doesn’t hold her back. She’s almost always happy. Her favorite character is Elmo and sometimes Mickey, but she loves watching wrestling shows with her daddy.
In February of last year, she had nausea and weight loss due to obstructive hydrocephalus, caused by her tumor. She was diagnosed with Anaplastic Ependymoma.
She has had multiple surgeries for shunts and tumor resection. For about 6 months she was on feeding tube and unable to eat solids. She was given a very short prognosis (1-3 months) and has been on hospice since leaving the hospital. Brandi has outlived her prognosis by 5 months. She is on oral chemotherapy to control the tumor growth. She is unable to walk or talk because of her tumor.
Brandi’s cancer has made us afraid to live more than a few weeks or months in advance. There is no saying when things will change for her again.This child has gone through so much and misses out on a lot because of her cancer and subsequent disabilities, but it doesn’t hold her back or bother her because that is all she knows. She is a fighter!
Mason has always been full of life and loves to make his peers laugh! He enjoys baseball and has been on a team since the age of 4 years old. He has gotten back into sports and is working of gaining his self esteem back! We are so proud of him!
Early last year Mason was experiencing odd symptoms like headaches, dizziness, vomiting and face paralysis. He was diagnosed with Ependymona, a type of brain cancer, on January 11th of 2017.
His treatment plan consisted of a 14 hour brain surgery, 33 radiation treatments,and 5 weeks of intensive inpatient rehab. He had to learn to walk, talk, eat and many more basics again.
We are still healing in many ways. His 7 year old sister lost her family for 5 weeks and still experience sadness and loss around this topic. Mason is terrified of any symptoms related to his diagnosis (which he still experiences frequently through the healing process). We have tried our whole life to protect our children and this diagnosed destroyed our sense of safety and security for our children; no matter what we feed them and how safe we keep them, some things are out of our control!
Lola is a brave, strong and funny teen. She loves making people laugh with her potty humor (not bad words) and enjoys spending time at our church and her church friends. They give her great peace when they pray over her. Lola is in pain daily but you would never know it, she always has a smile for others.
When Lola was 9, she began having back and knee pain and was misdiagnosed and treated with juvenile arthritis for 2 years. She began having numbness in her right side and difficulty walking which led to an MRI and the cancer diagnoses of Ependymoma.
Lola has received several months of chemo, 2 different rounds of radiation and this most recent was in a trial medication but was taken off because of tumor progression. She has had so many MRI’s I’ve lost count.
Our family struggles with the constant worry of Lola’s cancer taking over. We don’t have time for our marriage or out other children.
As of January this year there has been quite a bit of tumor progression and Lola is now paralyzed from mid waste down. So she is now in a wheelchair and unable to walk. It’s been a difficult transition and I am now her 24 hr caregiver. We all do our best to keep her spirits up and positive.
We found out that Jaxon had a tumor May 3, 2017. After falling and hitting his head, the tumor was revealed on a ct scan. After two brain surgeries to remove the tumor it was determined that Jaxon had a rare brain cancer called Metastatic Ependymoma. Only 200 cases of this type of tumor are diagnosed each year.
Jaxon also had two more surgeries to put a in a shunt due to hydrocephalus and a port to use for treatments. Jaxon has been undergoing chemotherapy for the past year and will be receiving proton radiation in Mass General in Boston this month.
Jaxon has been a warrior through it all and he keeps a smile on his face. Since Jaxon’s diagnosis I have not been able to return to work because of the rigorous schedule of treatment. I appreciate the beautiful photos that were taken through this amazing organization it was a really special time for all of us.
