At first Stephanie started to sleep more than usual and not been able to wake up easily as before to be ready for school. She was in Pre-k 4 at the time. A few days before her diagnosis she started to complain about headaches, being nauseous, abdominal pain and stopped eating but her PCP said that those symptoms may be something viral and gave her medicine for pain and her stomach. A few days after her symptoms were the same plus fever so I took Stephanie to the emergency room. We were told that she just had constipation and again she got medications to treat the symptoms.
A week later Stephanie started to have more severe headaches. She was waking up in the middle of the night crying and vomiting. We went back to her PCP when Stephanie started to fall while walking or just sitting, that was when her PCP told me to take her to ER. Dec 7th was the day our nightmare started. At first I was told she had a tumor but later on after after the tumor was removed they found out it was cancer, Medulloblastoma.
My daughter having cancer is the worse feeling I can have, not knowing what is going to happen tomorrow, not being able to plan ahead because all depends on her health. Living with the fear of not knowing if she is going to beat cancer or how much more time I still have with my daughter. My daughter is the the first and only kid in my family that has had cancer. My life stopped suddenly. I had to stop working and going to school for my degree. My other children are having a really hard time facing the reality of their sister having cancer. It has affected all of us.
Kody loves watching Vine videos and playing Xbox with the friends he’s met through this Cancer journey. He loved to play football before his diagnosis and plays baseball in the Summer months.
Kody was diagnosed with Medulloblastoma on January 26, 2016. He had severe headaches with projectile vomiting leading up to his diagnosis. Treatment has included a total resection surgery to remove the tumor, a permament shunt placed due to hydrocephalus, six weeks of radiation & proton beam treatments, and 48 weeks of chemotherapy. Cancer has put a financial strain on our family and I’ve had to change jobs to accommodate his numerous appointments.
Through it all, Kody has been so strong and has never complained. This boy is my HERO!!!
Adrianna laughs at jokes and movie quotes. She is interested in fashion, and we recently colored her hair red, for an Ariel the mermaid inspired look. She expresses herself through clothes, shoes, hair color, and nails but her biggest wish is to be able to walk again by herself.
In the winter of 2014, Adrianna was having headaches, vomiting and loss of balance. She also wasn’t able to walk well. On December 31st, 2014 the tumor was discovered. She had Medulloblastoma or PNET. This type of tumor starts in the base of the brain.
On Jan 2, 2015 the surgery took place and changed our lives forever. Adrinna’s radiation and chemotherapy treatments have badly effected her memory. New things have to be taught over and over. She is not learning in school because of it. She isI 8 years old but neuropsychologist says she is more like 6 in her mind. She is unable to walk and we aren’t sure if she will walk again. Her becoming disabled/handicap is one of the biggest tolls and breaks our heart the most because she simply was not born that way.
Isabella is the sweetest, kindest, smartest and most big hearted almost 4 year old. Her smile and personality have stolen everyone’s hearts here at the hospital and has left an imprint on so many. She LOVES to sing and dance, loves to draw and paint and do crafts, loves books and loves to be with her family and friends when she can. She also loves holidays and decorating for them, especially Christmas.
Isabella was diagnosed with Medulloblastoma in March of 2017. She had sinusitis for 2 weeks, vomiting at night, and was getting progressively worse which led us to the ER for possible dehydration. She has endured six rounds of high dose chemotherapy, three stem cell transplants, and is currently in rehab and is receiving six weeks of craniospinal proton beam radiation.
I (Isabella’s mom) had to stop working because of the need to be with her here in a Philadelphia which is a distance from our home in NY. My husband works every other week to relieve me so that I can be with our 8 month old son whom I gave birth to 4 days after Isabella was diagnosed. We have not been able to be together as a family very much and our son is being taken care of by our families while we are back and forth with our Isabella at CHOP.
We are hoping for more time together as a family so that Isabella can have the opportunity to be the big sister that she so longs to be.
Ryker has always been the happiest baby. Every parent says that, I know. But, nurses beg to care for him. He loves people and music. His smile and laugh are just contagious!
In the fall of 2016, he was having nausea, vomiting, loss of balance, and was lethargic. It was then we discovered he had recurring desmoplastic medulloblastoma. He has had three craniotomies, emergency drain placed for fluid on the brain, g tube placement, broviac and port placements. His treatment has caused delayed gross motor and vocal development and he was considered failure to thrive for weight development.
Childhood cancer has changed life in every way imaginable. We attempt to continue our full time jobs, keep our marriage intact, maintain our home, and care for our animals all while making Ryker our first priority. There is nothing in our life that is unchanged because of cancer.
Through it all, Ryker is just an amazing fighter. He was born witb genetics that unfortunately caused his brain tumoir to grow. But, his spirit his unwavering. In our year battle, I could count on one hand when he was fussy. He’s the strength for everyone around him.
Naomi had always been healthy but was suffering cold like symptoms for about 3 months. She was always sent home by doctors with cold diagnosis and no medication until February 10, 2013. That morning I let her sleep because my mother always told me that sleep was good for a cold. That day we were having a family gather for my nephew’s birthday. When I woke her up she said she didn’t think she could shower by herself. I just thought she wanted me to spoil her since she was sick so I proceeded to shower her. When I wet her head, she opened her eyes and her left eye bulged out! I was terrified and immediately knew something very serious was going on!
We rushed her to the ER, where within minutes she had a cat scan. Never in my life did I imagine what I was gonna hear, “You’re daughter has a brain tumor! We need your authorization to drill in her head to release pressure or she won’t make it.” I signed the papers and completely lost it! I couldn’t believe she could be gone. I thank God we had that gathering and I had to wake her up. The doctors said if we waited two more hours she wouldn’t have woken up! I had all the family come before they did the procedure. It was very dangerous due to the swelling in her brain and it was a life or death situation. Thank God everything went well! They were draining fluid for 3 days so it was safer to perform surgery to remove the tumor.
We knew Naomi was a brave little girl! After her swelling came down she started talking and she smiled for all of us. She always said “Mommy I will be brave for you all!” Surgery came and it was the longest nighter hours of my life! So much could go wrong. When the surgery was finally over we got the news from the doctor that everything went well. They were able to remove all of the tumor. Wow!! Was my first reaction as I kneeled and have All glory to God!! Little did I know it was cancer and the long road ahead.
Due to the surgery, Naomi couldn’t talk, move, speak, eat or anything! I was devastated. She had to have lots of therapy to relearn how to do all of those things. Naomi had 30 rounds of radiation and after 4 sessions she started to lose her hair. After her 12th round, she needed a NG tube because she lost so much weight. She couldn’t eat because she was being put under for her sessions. It took me almost 4 days to convince the doctors to allow her to try a session without anesthesia so she could eat. At almost 8yrs old she was able to do the rest of her sessions without anesthesia. She did great! She never showed fear and smiled through it all.
It was now time to start chemo. The hardest thing anyone should experience, especially kids! Naomi had 9 rounds of chemo and she needed to be hospitalized for every one! In between lots of testing, endless pokes and painful procedures but Naomi’s spirit was stronger. She was always smiling and never once complained. My baby became my hero! She gave us all the strength we needed to pull her through. Her symptoms with chemo were horrible. She had lots of vomiting, bone and joint pain and nosebleeds. She was unable to open her eyes properly and would hold them open. It was a horrible nightmare!
Naomi not once complained or threw a fit when in pain! However her treatment took a lot from her childhood! It also left its marks. Naomi suffered memory loss and as time passes by she losses more of her hearing. No child should go through this!
As a family we lost everything. I had to quit my job to care for her. Her little sister, Natalie, was bouncing around from home to home of family members that helped care for her. Natalie lost her sister for a while! She lost her parents as well. My husband had to work longer hours to support us since I couldn’t. He missed so much time with his daughters and wife. Our relationship went away because there was hardly anything to say when we were together. Our family outings were gone. We couldn’t even enjoy ice cream at the park. We were terrified of germs or crowded places. We had to wear masks and wash our hands excessively to be around her. It’s was horrible! And the sad thing is that it’s all over but things never go back to how they were. That is what childhood cancer takes away that we can never get back.
Naomi is a very loving, outgoing and happy girl despite all her obstacles! She loves to help others and loves to help those she can. She is a little mommy to her sisters. She is in her 3rd year in remission, thank God!
