Billy is so loving. He has become fearless, when before he was a shy guy. He LOVES indoor sky diving. It started as a gift after his first round of scans and now he wants to go after each plan round comes to an end before starting the next step. His brother is is best friend, he misses him so much when we are away and they smile so big when they are together.
In May of 2015, he started to lose weight. He also experienced leg pain before he was diagnosed with stage 4 neuroblastoma. Looking back that was easy to dismiss as growing pains. Some cancer symptoms are so subtle, it is easy to think nothing of them. Neuroblastoma starts in the nerve cells in the neck, pelvis or chest. It is often found in the glands near the kidneys and can affect hormones in the body. Stage 4 neuroblastoma has spread from its point of origin to other parts of the body.
Billy has been though many treatments including four rounds of chemotherapy and two antibody treatments. Unfortunately, he has had bad reactions to all of these treatments. One of the most difficult things we face is not being together. Billy’s brother stays in school and his dad at work while Billy and I stay in San Franscico for treatment. They are each other’s best friends and being apart is tough on them.
On the plus side, we have great community & family support. My bookkeeping job has been so kind and hasn’t made me fear losing it, even though we are well over the 12 weeks of family leave. We take every opportunity to go have fun when we are out of the hospital. The boys fight a little less. I never feel like we are alone. I try to make others aware of the journey because it all seems so unreal. I try to use this journey to educate and help others.
Phoenix is amazing! He is easy going, happy, loving, silly, forgiving, sweet, and so strong. He loves to play with his big sister. He also loves cars, trucks, airplanes, trains, helicopters, superheroes, and dinosaurs. He is very smart and talkative. Phoenix is a joy to be around!
Early this year, Phoenix had a fever for one week. After taking him not the pediatrician multiple times that week, he was then hospitalized. Once we were admitted to the hospital, they did another week of testing before a bone marrow test showed abnormal cells that they later diagnosed as Stage 4 High Risk Neuroblastoma on January 15, 2016. Neuroblastoma is a solid tumor that begins in the nerve cells near the brain of young children. Stage 4 Neuroblastoma is when those cancer cells have spread to the lymph nodes in other areas of the body, bone marrow, bone, and/or other organs.
Phoenix has been through so many procedures, it is hard to keep them straight. He had surgery to put in a port, several bone marrow aspirations, a spinal tap, MIBG scans, surgery for a catheter placement, a stem cell collection, and much more.
My husband and I have both reduced to part time at our jobs to be able to care for Phoenix, and our 4 year old daughter. Phoenix was in full time preschool before his diagnosis but can no longer attend due to his compromised immune system. Our activities have been very limited to try to keep him healthy in between chemotherapy cycles.
This diagnoses has changed our life in so many ways. We continue to try to be positive and happy, but feel we are constantly haunted by this terrible diagnoses.
Zoey is a very funny 3 year old! She is sassy and a miss bossy pants. She makes me laugh every day! She loves to tease us and hide from us. She loves loves, loves stickers, painting and play doh! She also adores spongebob and her baby dolls.
Last year, she had a fever for 12 days before she was sent in for blood work to try and figure out what was going on with her. She was then diagnosed with stage 3 high risk amplified neuroblastoma on April 2, 2015. Zoey has had 6 cycles of chemotherapy, tumor resection surgery (major abdominal surgery), stem cell transplant, 12 sessions of radiation and has completed 6 of 17 cycles of antibody therapy with irinotecan and tomozolamide chemotherapies. A second tumor was found so she had another tumor resection surgery.
We struggle with being away from each other when Zoey has her hospital stays. I have a 6 year old son and a 4 year old daughter as well. We also struggle financially due to me not being able to work full time since Zoey is in the hospital so often. We never had to be away from each other before except for during the day while I was at work. We have had to adjust to being gone for at least a week at a time if not longer. That is a big adjustment for little kids to deal with!
Jeremy is a spunky, goofy, snuggly, precious, and FUN little boy. Jeremy loves , loves, loves anything and everything Curious George (check out that great cape!).
Jeremy was diagnosed with stage 3 neuroblastoma on Friday, October 23, 2015. Jeremy was not experiencing any symptoms leading up to his cancer diagnosis. We found his tumor by chance; I simply shared a concern with his pediatrician that his tummy looked a little distended to me. After our pediatrician followed up on this concern with an abdominal exam and a battery of additional tests, the neuroblastoma diagnosis was given by a pediatric oncologist at Cincinnati Children’s Hospital Medical Center. Jeremy has already undergone three operations (a tumor biopsy, bone marrow biopsy from his spine, and a central line placement), multiple radiology imaging tests, and his first round of chemotherapy.
We are concerned about our financial obligations now and in the future. The emotional aspect of treatment is very, very overwhelming. Cancer has changed our routine, but it’s nothing we can’t handle together. We have become a much stronger family and more closely bonded with one another through these circumstances. Even through his treatment so far, despite the chemotherapy weakening his body, Jeremy has remained silly and upbeat, not letting his physical feelings get him down.
Jace is an extremely happy 17 month old. He loves to dance to music and play with his friends. He especially loves to make people laugh with his silliness. Just by looking at Jace you would have no clue the battle he is fighting. He is our hero and our inspiration.
On September 20th 2015 he was diagnosed with neuroblastoma. An X-ray of his chest was preformed because of a cough he had. The doctors at the Bellevue Hospital thought he had either severe pneumonia or a collapsed lung based off the X-ray. They then transferred us to the Toledo Children’s Hospital where with further testing they determined there is a Neuroblastoma behind his left lung. He will be undergoing surgery in about a week to remove the mass from his chest. How the surgery goes will determine if he will have to undergo chemotherapy. His cancer diagnosis has changed our family life tremendously. We now have constant doctors appointments and we worry about what is to come.
Kendall is a one year old little girl who was recently diagnosed with neuroblastoma. Her parents noticed a black eye that wouldn’t go away and was even bulging a little. After taking her to two different emergency rooms, a cat scan revealed a mass behind her eye. After being transferred to Cleveland’s rainbows babies and children’s hospital, it was discovered that she has another mass in her stomach. After a few tests it was determined Kendall has stage 4 neuroblastoma. Kendall has been thru 4 rounds of chemotherapy and has shrunk her tumors tremendously. The tumor behind her eye is dead and no longer there. Overall Kendall is a very happy baby girl. When she’s not in the hospital she enjoys spending time with her sister Kassidy (age 6) and Kennedy (age 4).
