Jillian is smart, beautiful and has a great sense of humor. She laughs at her own jokes that she makes up or her own made-up stories. She likes to ride her adaptive needs bike, dance, play with Barbie’s (fashion) and mermaids, and loves loves loves Disney Princesses.
She was officially diagnosed with Neuroblastoma in November of 2017 but was sick and misdiagnosed for four months before that. She had lots of bone issues with her elbows, legs, and shoulders. Eventually, she couldn’t walk. They thought she had a rheumatology type disease but then a test finally confirmed cancer.
Jillian has had multiple rounds of chemotherapy, radiation, stem cell transplants, and immunotherapy. She is physically weak but is getting stronger each day. She also has an autism diagnosis so she has some learning and behavior challenges as well.
I had to quit my job to take care of her and now my husband works from home as much as possible. We have lost friends and family but we have also gained alot of new friends as well. We spend alot more time at hospitals and clinics than we would like but we also try every day to enjoy our time together.
Brinlee loves to paint pictures, play softball, swim and just be a 7 year old kid! Opening up small toys and showing them off is a favorite of hers!
She was diagnosed with Neuroblasota on June 21, 2019 with no signs of symptoms. She had a tummy ache and them started running a fever on Thursday. On Friday, we found out she had cancer.
She has had a biopsy of the tumor, a mediport put in her chest and started chemo therapy. She is the most upset about losing all her of thick beautiful blonde hair, which is why I would like to get pictures of her before it goes. We are so happy to have these images of her.
Sophie loves to sing, dance, paint and of course play. Her favorite colors are pink and purple. She loves Frozen and Wonder Woman. She is quiet in the beginning but once she knows you she will be all over the place. She has her own personality and you can’t make her do anything against her will. She is a strong headed yet very mannered child.
On December 8th of 2017, Sophie was diagnosed with Neuroblastoma. It was so random!! She was constipated for two days and then didn’t pee for a day so we took her to ER where they did an ultrasound and found 21 tumors in her body. That’s how this journey started. Still fighting.
Sophie has had seven rounds of chemotherapy, an 11 hour surgery, two bone marrow transplants, twenty rounds of radiation, and six rounds of immunotherapy. We spent this entire time in a bubble with hardly any social life. Sophie never went to school and has almost no friends. Cancer has changed many things about our daily life. A simple sneeze makes us worry. Our life has completely changed and we know it’s going to be like this forever.
We have learnt a lot since Sophie’s diagnosis and we are still learning. We realize that there is still good in this world!!
Aidan’s personality is amazing, he is so funny, out going, smart, creative. He loves to make others laugh. He loves swimming and the beach. Disney world. Some of his favorite things are his dinosaurs and trains.
On September 15, 2017 I decided to take Aidan to the emergency room on a hunch something was wrong. He had been feeling sick the week before and had a limp, although that went away, the sick feelings never did. He was not himself at all. He was actually telling me he was tired and wanted to sleep. If anyone knows Aidan, he doesn’t sleep! Lol so that was alarming. Fast forward 3 days and demanding we figure out why he wasn’t eating they did a stomach ultra sound and a parents worst nightmare came true, it was cancer.
We have completed 5 rounds of chemotherapy – 4 rounds of chemotherapy mixed with immunotherapy and one major tumor resection surgery. Aidan’s cancer still wasn’t clearing so we decided to transfer care to Sloan Memorial in New York City. Here we have completed 6 rounds out 7 Immunotherapy treatments and completed 14 sessions of radiation.
We have since changed hospitals once again due to a potential relapse and we travel to Michigan. We found out in February that in fact was not relapse and he is currently on DMFO for 2 years, along with a chemo pill.
Cancer has made us appreciate more and make more memories but we also have to work harder as a family.
Andrew spent months with high fevers, a weird “virus” and “cold” that just seemed to never go away. Towards the end of September, he had stopped being able to walk and eat pretty much at all and he was unable to turn his head without screaming in pain. When I had called the on call doctor I made it clear I wasn’t going to leave without answers.
I knew something was wrong with my kid more than just a normal cold or virus. We had been tested for meningitis and then sent on our way again with some iron pills for a very low hemoglobin. The next morning, I received a phone call from his pediatrician and was they were very concerned that we were sent away again. They had us admitted to Helen DeVos in Grand Rapids.
Within 24 hours, we had learned our diagnosis of Neuroblastoma Stage 4 aggressive cancer. Our world was flipped upside down. My oldest son, Aiden, was uprooted from his family and moved into my parents house. We spent almost the first 7 months pretty much in the hospital. We were only home for a couple days at a time before a fever spiked or something else came up and had to be re-admitted.
We are happy to be over with chemo and radiation and spending more time at home but next is the immunotherapy with some more admissions.
