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.
Liv is seriously so so happy! She just loves everything (when we’re not in the hospital- here she is very cranky) Acting like you’re gonna tickle her, actually tickling her, saying “I’m gonna getcha!”, chasing her. She loves food and has her own happy dance for when she sees something she thinks looks good. She is a lover for sure. She loves cuddles and kisses. She has a stuffed animal that makes kissing noises and she will lay her face on the monkeys face while patting it.
In December of 2018, I brought Liv to the hospital because she had had a stomach bug the week before. (Her sister had it and the rest of the school had it) She was lethargic and becoming unresponsive. All labs were great so they did an emergent CT scan to rule out trauma. They found a baseball sized tumor in the right frontal lobe and it had ruptured, causing her to become unresponsive and begin vomiting. We then realized her symptoms on Saturday were not from the stomach bug. On January 2nd we got the pathology results stating it was in fact malignant and we needed to start treatment as soon as we could.
She had a craniotomy, full tumor resection, port placement, spinal tap. She has to have 3 different chemotherapys. We are waiting for her counts to go back up to place the Apheresis line and hopefully begin harvesting her stem cells.
Since this has happened, I have not returned to work. In all reality there’s no way that I could have. We have to split out time with our oldest daughter and choose which parent (if any) will stay home with her or if she will go to an aunt’s house or grandma’s. She enjoys spending time with her other family but her and Olivia are the best of friends and you can tell they miss each other.
We are staying optimistic due to the fact that her doctor was able to remove all of the tumor, how great she is doing post op, and the fact that the tumor was localized and had not spread to other parts of her brain or spine.
She is a tough little thing as well. She keeps coming out of situations like a rockstar! When she had the tumor removed, they only shaved half of her hair and she looked like a total rockstar!!! Everyone loved it. Her hair fell out two days ago and she is rocking being bald just as well!
Dominic had a seizure at 16 months that led to his diagnosis. He received 6 cycles of chemo with an auto stem cell transplant. He was in remission for 6 months. He had another seizure which led to us finding out on his relapse. We then did 30 sessions of proton radiation and thank god he’s back in remission for 9 months now.
Carlos is very smart and has a sense if humor. He loves to watch WWE matches and pretends to wrestle with his little brother. He is not emotional about cancer or its effects, he just deals with things as they come. He has very high standards for himself and he is always thinking positive.
In January of 2015, he was experiencing blurred vision, headaches and vomiting first thing in the morning. He was diagnosed with Medulloblastoma, also known as PNET. He early symptoms are very common for Medulloblastoma. Medulloblastoma occurs in the brain at the base of the skull. Medulloblastoma accounts for 20% of childhood brain tumors. Carlos’ treatment consisted of 3 brain surgeries, radiation and chemotherapy.
Carlos has had to re-learn how to walk, talk, and swallow. He currently has balance issues and can’t play contact sports. He misses playing soccer and lately he has been dealing with fatigue. Our life will never be the same, he is not the same child he was before, and there is always the possibility of the cancer coming back and it’s sometimes hard to manage that.
Torin is all about everything geek (Dungeons and Dragons, Dr Who, wizardry, Star Wars, etc. He loves computer games and volunteers with a little boy who has a neuromuscular disorder to teach him Minecraft. He loves reading joke books and being silly. He is an amateur novelist and is working on his third novel.
Torin had some issues with balance, coordination and energy level but we had no idea cancer was the cause was until Feb of 2009 when he became very sick with hydrocephalus. His MRI showed enhancement but no mass. He was in a lot of pain and vomitted continually. He had an external shunt placed and was hospitalized for 12 days. He had a lot of testing. There were cancer cells found in his spinal fluid but they scanned his whole body without finding a mass. The external shunt was removed and we were released but had to go back after 36 hours because the hydrocephalus had not resolved and he was very ill. He got his VP shunt at that point. We went on watch and wait and his tumur progressed to the point they could safely perform a biopsy. Torin was diagnosed with a high risk malignant brain tumor on 9/9/09 after six months of symptoms. His diagnosis is diffuse leptomeningeal PNET.
PNETs usually occur in the cerebrum and have a tendency to spread. Like many tumors, the exact cause is unknown. Standard treatment usually includes surgery but total removal of the tumor, due to many varying factors, is usually near impossible. PNETs usually occur in young children.
Torin had a very high dose of radiation because there was no tumor bed to boost. He also had high dose chemotherapy.
Since Torin’s diagnosis, we have clarified our priorities and make the most of our time. We are still sorting out some of the ways the trauma during treatment has affected our family relationships. We have come a long way together.
Kaiden is an exuberant and bright 5 year old, who is wise beyond his years. Most folks fall in love with him instantly because he has never met a stranger. He’s an amazing big brother to his baby sister, Lucy, and shows her so much love and affection! He loves all things cars and vows to own a purple Volkswagen Beetle with smiley face hubcaps when he’s older. He also said he wants to design Hot Wheels cars and real cars when he grows up. Hearing him talk about his future always reminds me of how far we have come. There was a time, not too long ago, when I didn’t know if he would live to see 5, let alone adulthood.
On March 25, 2010, when Kaiden was just two and a half years old, he was diagnosed with cancer. After an extensive brain surgery, we were told it was a highly aggressive, very rare Grade 4 malignant tumor called a supra-tentorial Primitive Neuro-ectodermal Tumor (sPNET). When speaking with our oncologist, she gave us grave odds at Kaiden beating this cancer. Her words were, “The odds are not great. They are not zero, but they are not good either.” She introduced us to a very aggressive treatment plan which included; 4 months of intensive chemotherapy to take place on a weekly basis in the hospital, 6 weeks of intensive radiation to the brain, followed by six months of oral chemotherapy. We were told of the many side effects and issues children who survive cancer have to deal with. If the cancer didn’t kill Kaiden, the treatments very well could or at least cause such severe side effects that our child would never be the same.
In June 2011, Kaiden’s first scans off treatment came back clear. We started to feel a spark of hope that Kaiden had beaten the odds. He has shown very little side effects from his treatments aside from the horseshoe shaped scar across his head and a small bald patch from the radiation. Our lives are showing some semblance of normalcy again and with each clear scan Kaiden receives, we feel more and more hopeful. Kaiden will continue to get scans throughout the years and the fear of cancer returning will always be apart of our lives.
Throughout his treatment, Kaiden maintained a positive, never give up attitude. I have learned so much from my boy during this journey. He took it in stride, rolled with the punches and continued to trust us, even when we had to hold him down so the nurses could administer treatment. He now bears a battle scar on his head, reminding us of what cancer tried to take. He is a warrior, he is fierce, he is Kaiden, The Destroyer, and cancer never stood a chance!
