Seth is a very outgoing kid. He’s a very friendly and likes to get to know people. He likes to crack jokes and loves to put smiles on other people’s faces. He’s a very good kid all the way around. He did lose his father 3 1/2 years ago and I know that still hurts him and wishes he could have been here for him with everything going on.
We found out April 18th of 2019 that he had a mass in his brain. They had to do a biopsy to find out what kind of tumor it was and he was diagnosed with germ cell tumor on April 26th.
He did two chemotherapy treatments. He was supposed to do 4 but his MRI came back that the tumors were 99% gone. There were still calcium deposits that were there so after the second chemo they started radiation. It was pretty rough on him and he still to this day is dealing with the side effects. He had radiation for 6 weeks his last radiation was August 7th of 2019.
Tyler loves to smile and laugh! He enjoys making friends, hugs, high-fives and just being silly.
We saw struggles in development starting when Tyler was 11 months old. We finally got an MRI after a year of asking. He is now 3 1/2 years old and has started chemo pills due to tumor growth.
Tyler has had two brain biopsies and takes oral chemo to hopefully prevent tumor growth. He also can’t be in the heat or sun.
His diagnosis has made us understand what living moment to moment is. It has change our entire world; flipped us upside down. Knowing there is no cure and that his tumor is inoperable is a really hard thing to live with.
Hailey is a very happy and easy-going girl. She enjoys playing soccer and piano and loves painting and cooking.
Two years ago, at the age of 12, she was diagnosed with a brain tumor. She was having headaches but that was the only symptom.
Hailey has had 11 surgeries and 6 weeks of proton radiation therapy. She has short term memory loss, fatigue and left side weakness but no major physical limitations.
Because Hailey wasn’t able to be in school full time and spent a lot of time in the hospital and at therapy appointments these last 2 years.
Sophia is a little fashionista! She loves make up, music, dancing, and spending time with her sister. Her sister is the one that makes her laugh the most.
In the winter of 2016, I took her many times to the ER for headaches, vomiting and fever but they always told me that it was normal. It wasn’t until I took her to a different ER that they did a MRI. It was then that they found a tumor the size of a baseball on the left side of her brain. The next day, she under went a 15 hour surgery to remove the tumor.
She had been through 4 brain surgeries, radiation treatments, and chemo to fight the cancer. She is always tired and sleepy. She does’t want to much and we can’t go anywhere without being sacred that she might get sick or something else will happen.
Callin is a 4 year old Brain Tumor Warrior. He’s sure to always wear a smile on any given day even with all he’s going through! Callin has strength, endurance and courage. He’s a burst of light, with a contagious laugh.
Callin had what we thought was a lazy eye but instead was a golf ball sized tumor putting pressure on his optic nerve that caused him to be blind in his left eye. Callin is currently in the middle of radiation at St Jude Children’s Research Hospital.
This has been an eye opening experience, we’ve been months without seeing our older children. We really use time for what it is and understand to the capacity of not taking a single thing for granted.
Xena is one of a kind. Her personality is beginning to show again and she is learning how to smile. We recently learned she has hearing loss and she can’t really hear much. She loves music television and light up toys and she loves to be held.
Xena was a very happy, normal, healthy baby. There were a few things we questioned and would ask the pediatrician and they would brush it off saying maybe she just needed therapy. Xena always tilted her head to one side or the other and she slept looking like a twisted pretzel. She had trouble latching onto pacifiers and bottles and could never latch to breast feed.
Two days before diagnosis day is when our journey started. On January 12th 2016 our day started like a normal day, until lunch time. We gave Xena her lunch bottle and shortly after she began to vomit profusely. Thinking maybe her milk had just soured, we made a new bottle, waited a little and tried to feed her again to no avail. We took her to the local ER in our town. After 37 tests, 17 needle pokes and multiple blown veins, all they could say was she had a very horrible sinus infection. They sent her home on an antibiotic and zofran. Exactly 24 hours from the time we arrived home from the ER Xena had a seizure and became extremely lethargic. We rushed her to the ER in the next town over. They began work ups immediately and the doctor ordered a CT scan at which time they found hydrocephalus and the tumor on her brain.
Xena has had a total resection of the tumor and went through two rounds of induction chemo, 28 rounds of proton beam radiation, followed by 3 rounds of high dose chemo with 3 rounds of stem cell transplant. After treatment was complete Xena started experiencing regression that led to her having to have a trach placed.
We have had a lot of strain on our family and social life. Her father lost his job and hasn’t really been able to find a steady one with all of the doctors appointments. Her brother knows more than any five year old should ever have to know in life. Cancer has changed us. We are more focused on our children and keeping them safe. We probably question every bump and bruise.
After treatment was complete in September of 2016, Xena began to experience regression. The treatment facility we were at could not figure it out so we transferred care back to her diagnosing facility. After some more tests we learned that Xena has an autoimmune disorder known as Paraneoplastic Encephalitis. Since the tumor was gone, it started to attack her brain and shut her body down. This led to respiratory failure. Her doctors were able to treat it and Xena is now on a long road to recovery. She is learning how to do everything again. It’s like being a baby all over again.
