Childhood Cancer Awareness

In honor of Childhood Cancer Awareness Month, this is a summary of Jaxen Donnelly’s Story, told by his grandmother, Virginia Lawrence.

June 15th, 2022, is when our world all changed Jaxen and his mom Brieann were on their way to Goddard school where his mom worked and Jaxen went to school. He had a good morning but after nap time his teacher noticed something different right away and called his mom to the room. Half of Jaxen’s face was drooped at the cheek and lip on the right side. Brieann automatically left and took Jaxen to the Nemours Children’s Hospital. That’s when they asked all the questions, “Was he sick?” (no), “Did he have any shots?” (no). They did a work-up then looked over him and called the neurologist to come and look at him. The neurologist said he looked good, even though his face didn’t, and diagnosed him with Bell palsy. Brieann his mother wanted them to do a scan of his head like the ER doctor recommended it, but the neurologist said he was going to be okay in a few days. They prescribed him prednisone and to follow up with his primary in one to two days.

I (Virginia) his grandmom, took him back to the doctors and demanded they do an MRI or something because it didn’t look like bell palsy to me it looked like he had a stroke, and he was throwing up the prednisone. His primary told me to mix his meds with chocolate or add to a drink be creative and insurance just doesn’t do MRIs unless there is a reason. Mind you Jaxen was only 2 1/2 yrs old and just diagnosed with Bell Palsy for no reason. She told me to, “give it time, and being a parent isn’t always easy but it will be okay”. It was not what I wanted to hear, but I felt like my daughter and I were up against the wall. We just wanted help for Jaxen.

After numerous trips, back-and-forth to the hospital for four weeks, we finally got the scan because Jaxen’s right eye couldn’t shut or move. They then rushed him to a CT scan to tell us the devastating news Jaxen has a mass covering the right side of his skull. Jaxen then had to be put to sleep for a 4-hour MRI to tell us more news. We then were admitted on the oncology hematology floor just for observations until they did a biopsy of bone marrow and a spinal tap.

On July 15th, 2022, we were told again devastating news that Jaxen was diagnosed with embryonal rhabdomyosarcoma stage intermediate. Jaxen went through a year of aggressive chemotherapy where we were in the hospital more than we were home and six weeks of radiation Monday-Friday. Jaxen also had a scare in March 2023 when they thought he had a CSF leak and had to have cranial surgery. Jaxen was a trooper every time he would come out smiling and ready to play. On June 30th, 2023, we were told Jaxen was cancer-free.

Unfortunately, it was short-lived, Jaxen had bad headaches on July 30th, 2023, and I (Virginia -grandmom) and Brieann (mom) had to rush Jaxen back to the hospital they admitted us and did an MRI. It was more devastating news. They found two tumors on his cerebellum this time it was on the brain. Our world was turned upside down again. We were told by Nemours Children’s Hospital that it wasn’t good and told us he needed brain surgery to remove the two tumors that were 5cm each in his little head.

After his Brain surgery, Jaxen bounced right back again, running around, and playing, as if nothing happened. Then his oncologist came to the room as we were about to go home to talk about treatment now that the tumor was gone, and it wasn’t a good talk at all. It haunts me and my daughter’s thoughts every day. His oncologist said, “It’s going to be a harder fight this time around.” He told us, “We could go home and enjoy what time Jaxen may have left or do treatment.” We couldn’t believe our ears.

Of course, we are going to do treatment, Jaxen is a FIGHTER!

After Jaxen’s PET scan of his whole body, they told us to come back to the hospital right away. We rushed Jaxen to Children’s Hospital Philadelphia (CHOP) where they did an MRI and brain surgery and told us that Jaxen is going to be okay.

He is now back on chemotherapy every 21 days he gets 5 days of chemo by G-Tube and 1 by IV (port) in his chest and 1 IV (chemo by port) once a week for 3 weeks and only off chemo 1 week a month. He will start radiation again for 6 weeks Monday-Friday, where he will be put to sleep every day again. He doesn’t like that much at all. Jaxen likes to have control, and this isn’t a good feeling for him. He will have MRI scans every 3/6 weeks depending on how things are going and spinal taps to check his cells. We are now with CHOP full-time.

When my grandson was diagnosed, I resigned from my job to help take care of him and my daughter. I lost communication with the outside and stayed in a shell all I could think breathe and do was for Jaxen. I was the speaker, the searcher, I asked all the questions to the doctors and helped make decisions. When Jaxen relapsed, I reached out for help, I was so scared. I wish I had opened up sooner, I wouldn’t have felt so alone. The love and support of the community feels so good. The whole town of Pennsville/ Salem County came together to support my grandson and it felt/ feels amazing and I couldn’t thank them all enough!

One thing I hear a lot during this journey is how hard it is to pay bills. You know the hardest struggle was paying my bills and trying not to worry about them cause my whole focus was taking care of Jaxen. My thought was, ” Who cares about bills because they will always be there no matter what”. There are groups out there that can help you.

Another thing I can say is to be an advocate for your child and speak up. Just because they are medical doctors doesn’t always mean they know all the answers or know your child.

I want to thank you for letting me tell some of Jaxen’s story. There is so much more to it, but it was hard to write it all out.

Thank you,
Virginia Lawrence