Casey was always a happy baby even during treatment and now he is a very energetic little guy. He loves sports but soccer is his favorite. He loves spider-man and Thomas the Train.
My son was born with a tumor near his rectum. He was diagnosed at 1 month old and started chemo before he was 2 months old. He had chemo for 8 months and several surgeries to remove tumor that grew back.
Casey has had numerous appointments for check ups after treatment. Our hospital was over 2 hours away so it was always a long drive for appointments. Both of his siblings now have mental health issues because of the treatments and me having to be away from them so often during treatment. I now have anxiety that limits me in some ways and a constant fear of the cancer returning.
Liyum is the sweetest boy. He loves to love people. He has such a big heart for a five year old. What makes him laugh the most is belly tickles they are his favorite. His favorite thing is his super hero bear he got during treatment. It’s like his security blanket that he literally brings everywhere. It’s the only thing that will call him down during scans.
In the fall of 2011, I noticed Liyum had a swollen stomach and I felt a lump one day while changing his diaper. With no other symptoms, he was diagnosed with stage 3 clear cell sarcoma of the kidney when he was just two years old. Doctors are hopeful that he will live a healthy life.
Liyum had two weeks of radiation and 7 months or chemo. He had one main surgery to remove his kidney and a very huge tumor. The surgeon said it was the biggest ones she’s ever seen. We go in every three months now for follow up scans. He has been in remission for two years now.
Cancer has forever changed our lives. As a mother, my biggest fear is that Liyum will relapse and I’ll have to watch him fight for his life again. Remission isn’t as easy as some may think, the fear never goes away. Every cold, ache, pain is worrisome and requires a phone call to the doctor. Liyums younger brother Noah doesn’t quite understand why his best friend always has to see the doctor and why mommy is always gone with him. It’s been very hard on us and very emotional.
Hope session by Becci Ravera Photography. website | facebook
Reino loves riding his scooter, jumping on the trampoline, swimming and more. His real love right now is weapons of all kinds. He got a battle axe the week he got sick prior to his cancer diagnosis and he has kept that with him everywhere. We bought a new one this week because it was broken beyond repair. He also spent the year with nerf guns and bows and arrows and knives and shields, all plastic or wood. These helped tremendously when he was learning to walk and bend and squat and climb again because of the atrophy and the chemo effects on his muscles. The PTs used these toys as a way to increase his range of motion in ways that were fun for him. He likes playing small jokes on adults. Kids too but since his life has been filled with doctors and nurses and therapists he has more experience with adults.
In August of 2015, we noticed he was snoring loudly then excessive sleeping and hadenergy loss. Ear infection symptoms were also present. We then discovered Reino had Stage 4 Rhabdomyosarcoma. Rhabdomyosarcoma is when cancer cells form in muscle tissue. A common symptom of rhabdomyosarcoma is a lump that keeps growing. Reino was placed on a chemo protocol for 9 months mostly inpatient and 6 weeks of radiation. He is now on maintenance chemo for 1 year that runs in 21 day cycles, currently with an 8 day break between rounds. Reino also has a central port and a g-tube. He is rebuilding his weight and strength and growing new hair.
We have 4 children and Reino is #3 in age. Our other kids were farmed out to friends and relatives for months while Reino was at the hospital fighting for his life. He had an allergic reaction to medical tape that nearly did him in. He will keep those physical scars forever but the emotional scars are not just his, we all have them.
Reino has an amazing attitude. He does not know his prognosis but when his grandfather died about 3 months into treatment he thought he should have died with him. Same when his cousin Donny died of Leukemia. He knows his cancer is under control for now and that he keeps taking chemo to keep it gone.
Connor loves to play with nerf guns, xbox, all things dinosaurs, and military type things. Seeing us act silly makes him laugh, along with us just all playing together. He is very intelligent and inquisitive. He understands most of what is happening to him, just not necessarily the urgency of it all.
In May of 2016 he was diagnosed with Desmoplastic Small Round Cell Tumor. He had no symptoms prior to his diagnosis. Desmoplastic small round cell tumor is a tumor that begins in the pelvis or abdomen and is usually very aggressive. It is a very rare cancer and is usually only diagnosed in 20 children each year. It is often misdiagnosed as other types of cancer and this can lead to poor outcomes. Connor has had a tumor resection surgery and seven rounds of chemotherapy. He just had HIPEc surgery at MD Anderson and we are hopeful this will help rid his body of the cancer.
Connor is a fun loving kid who has been able to maintain his personality throughout much of his treatment. He cannot wait to be able to go outside again and play with others.
Lilly loves her brother, Ethan, and her step-siblings, Allison and Grant. She takes dance and gymnastics lessons and loves them. She loves to dance and sing. She has a lot of baby dolls and takes great care of them. She also gives all of us and her toys check ups very often. She is beautiful, smart, funny, kind, caring, sensitive, tough, brave, awe-inspiring, fun, loving……. She is amazing!
Lilly was diagnosed with clear cell sarcoma of the kidney on January 22, 2014 at the age of 18 months. Before her diagnosis, her belly looked swollen and she had pain when urinating. Lilly had surgery on January 27, 2014 to remove a 2 pound tumor and her right kidney. She then had 6 radiation treatments. Chemo lasted 27 weeks. She has been cancer free for two years.
Our main struggle, as is common with most cancer families, is financial. Our life stopped, but the bills didn’t. Money is tight and our anxiety is high, but we don’t take anything for granted anymore. We know life is short and can change in an instant.
