when Jacob was 11 months old he was getting fevers and then he started with flu symptoms. I took him to his pediatrician and he gave him meds. He got better but I started noticing his belly growing and it was hard, he stopped eating and playing. I got concerned so I took him to the hospital. Another doctor saw him and diagnosed him with colitis from the flu. We went back to the hospital again because his stomach was still growing and a different doctor diagnosed him with gases. Three days later, I took him to the hospital again and his main pediatrician was there so as soon as he opened Jacob’s shirt to check his abdomen. He turned pale and sent him for an ultrasound.
Thirty minutes later, he told us that Jacob had a big tumor on his abdomen and that we had to go to the emergency room. They were doing lots of labs, CT scans, and a biopsy as soon as possible because his abdomen was growing each day.
On 01/03/24 Jacob was diagnosed with rhabdomyosarcoma and started his first chemo that day. All his organs were so squished that all the fluids from hydration went to his lungs and started having problems breathing so he went to the PICU and he got to be intubated for a whole month.
On January 12th, his birthday, he was so sick the oxygen machine was on the max and it wasn’t doing anything for his lungs anymore so the only option was to do an emergency surgery, they had to open his abdomen and leave it like that to let out pressure.
Thank God there were no complications. The doctors and nurses were so scared because no one knew what was going to happen but he is a warrior! From there everything started getting better. Every week he went to the OR to change the wound vac dressing. He had his abdomen open for 2.5 months but that didn’t stop him. After he was extubated, and dealing with the withdrawal from all the meds he was for a month. He started getting PT and crawling, standing up, and talking again. He is my little miracle!
On March 26th it was the big day to remove the tumor and close his abdomen, it was an 8-hour surgery and everything went really well. The tumor was removed completely and he came out with a normal belly.
Our world fell upside down, there were so many things going on, and he was getting sicker every single day, but now he has been doing much better. He is a warrior!
Emma was diagnosed with desmoid fibromatosis tumor in April of 2021. Her tumor grew on the side of her neck so it was very visible early on. From March to June when she started Chemo it had grown 4cm.
When Emma’s tumor was removed they had to cut her facial nerve and we have been working or rehabilitating her face. After two surgeries we have made some progress but it takes some patience.
Emma went through four rounds of chemo in the hospital. We have been doing daily facial exercises over the last year and a half with a machine and continue to look for a second opinion on what else we can do for her face. We are starting to see success from the last surgery when she bites and smiles. It’s been a long time since we have seen our baby girl’s full smile.
Skye was diagnosed with ALL in December of 2021. She had pains in her ribs which turned out to be pneumonia after taking her to A and E twice in one week. They ran routine blood tests which showed leukemia.
She had lots of horrible chemo, still having daily chemo, countless lumbar punctures and bone marrow biopsies, and had 12 teeth removed because chemo destroyed them.
Cancer changed everything, completely, in every way possible. I’m a single mother of two children. My employer fired me because I was unable to leave my daughter so on top of everything that comes with a cancer diagnosis, we have had an incredibly difficult time just making ends meet.
Emily was diagnosed with leukemia in February of 2019. Emily wasn’t feeling well, and we had a doctor’s appointment scheduled for that day. She just didn’t seem like herself but was only four at the time and couldn’t communicate how she was feeling. She finally told us that we had to go to the doctor now and that’s when we went to her appointment early.
Emily was in the hospital for almost 2 months. The cancer cells were blocking her airway, and she wasn’t able to breathe. We spent hours at the ER that night as they tried to stabilize her. The ER doctor was trying to get a breathing tube in, but it was difficult due to the location of the cancer. She finally flipped Emily on her stomach to remove the pressure from the and was able to get it in.
She was taken by ambulance to another hospital where she received treatment. She was put on a machine called ECMO and was sedated for a while. When that was all resolved she had to learn how to eat, walk, etc all over again due to not moving for a prolonged time. She didn’t talk until we got home, and the doctors couldn’t figure out why. She was on treatment for 2 and a half years (chemo, steroids, lumbar punctures). Throughout that time, she was in and out of the hospital.
Emily has some social issues and learning difficulties. She doesn’t remember much but my husband and I deal with the trauma/memories. We take nothing for granted. We celebrate small achievements and live each day to the fullest.
She always is happy and has a smile on her face even after everything she has been through. She goes now every three months for checkups. She has a doctor’s appointment and labs. It hurts her and she doesn’t like it but is brave every time.
Ellie was diagnosed with ALL in the summer of 2023. Before her diagnosis, she had leg pain, was very tired, and started putting herself to bed at seven. She would get out of the pool after 20 minutes and want to go inside. She also had dark circles under her eyes, pale skin, and weight loss.
She has had a port placed and had a PICC line as well but that is out now. She has had many LPs and chemo treatments, which has become increasingly difficult for us as we both work. We have almost depleted our PTO but we are walking out on faith and believe God will continue to provide for us even if we do deplete our PTO.
This has completely changed everything. The way we go out. When we go out. Where we go to. How cautious we are.
