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.
❤️️ Luciana’s Story
… the heartbreak and triumph of a local Salem County family
On May 19th 2021 I went to the hospital to deliver my second baby. Not knowing the gender, my husband and I were excited! We had a good ole time in our delivery room, laughing, reading, breathing through contractions – luckily for only a few short hours. Not knowing those were the last short hours my mind would be at ease, just pure excitement for what was to come. Seconds after birth and I mean seconds, Luciana Marie Italiano was taken from me, as I was basking in the moment I actually have a little girl to join big Brother Enzo at home, rushed over to the incubator table where a team of 10 rushed in like an army, and out of the room my daughter went, with only 20 seconds to hug and kiss her goodbye. She was rushed to the NICU at Christiana hospital due to an 8×8 mass on her neck. Four hours after birth, Luciana Marie was transferred to Nemours AI DuPont while I was discharging myself to be with her. We had no clue what was to come, and letting our family know was difficult, because we had no answers for all the questions.
Upon walking into our room at AI Dupont, I was met and blessed with the sweetest staff on the NICU North floor, Room 21. After the hardest days of my life, and a biopsy later, we find out my daughters mass is in fact a cancerous tumor called neuroblastoma. Neuroblastoma is very rare for a diagnosis at birth. That same sentence of “neuroblastoma” was met with “this is the protocol for chemotherapy we are going to start asap”. Here is my daughter, fighting for her life with a breathing tube, on morphine, about to start chemotherapy at 9 days old. For 3 long brutal months, full of chemotherapy, celebrating milestones, deemed in remission on July 10th, crying due to setbacks, but again, had a care team of 4 nurses who quickly became family— we were discharged to come home on August 17th. While Luciana had other quality of life issues due to the placement of the tumor, she has thrived ever since. While she is not cancer free, the tumor has been continuing to shrink, rather slowly ever since.
We spent 2 days every week at the hospital for different clinical visits, ENT, Allergy, Oncology, GI, Nutrition, Speech Therapy, Lab work, NICU follow-up, and the list goes on. We also spend 2 days every 3 months getting protocol MRI and MIBG scans, to track her tumor. Little Lulu (thankful for her care team in providing the cutest nickname) has been through so much in just 3 months of life, than most adults in their lifetime. While inpatient, we learned of a “Beads of Courage” program. Luciana received a bead for every prick, prod, placement, test, milestone, sad milestone (which included losing her hair)—so we can all remember, just how far she has come.
Pediatric cancer is never spoken about, never really talked about, and never brought awareness – until you or a family member steps into the those shoes. It’s a feeling you can never un-feel. While Lulu has went through quite the journey over the past 15 months, I have been there every step of the way, fighting for her, advocating for her, and making sure her voice is heard. I am her voice. The statistics are sad. The federal dollar amount towards pediatric cancer is 4%, while the rest of the 96% goes toward adults. Chemo drugs are the same no matter the age. Most states do not help assist families with children who have cancer and need to undergo extensive lifelong treatment, New Jersey being one of them. Advocating for children who need help, who did not ask for cancer, who fight better than adults, and don’t understand, but understand enough of just what is going on – against healthcare facilities, state health departments and federal health departments who run their agencies like business, is tough. Living with extensive medical bills is the least of my worries, as long as I have my little girl doing life with me by my side.
Lulu has been beating the odds, participating in clinical cancer research studies, and growing stronger and growing through her NICU problems everyday: She has paralyzed vocal cords, Horner’s syndrome from tumor placement, a Gtube placed due to silent aspiration; not to mention the chemotherapy effects: slow growing teeth, slow muscle growth, hair loss/hair growth, the ability to just develop allergies because the chemo lingers in her body, ongoing skin issues, eczema and possible fertility issues as she grows.
Would I change anything? Absolutely not. Beautiful things come from cancer, no matter the outcome.
Luciana has brought a whirlwind of emotions and pray that I never knew existed. Friends and family have helped tremendously. The community banded together and brought awareness. Other cancer moms I’ve never met sent gifts, words of wisdom and checked in everyday. The local churches recognize Luciana and pray for her daily. She is prayed for worldwide, this little girl from Salem County NJ. My family will continue to bring awareness for all the years to come, and celebrate Lulu and the triumphs overcome. While I did not have the perfect birth story, my story is absolutely perfect, along with my Warrior Princess Luciana. To be continued.
❤️️ Laurel Moore’s Story
Laurel Moore was diagnosed with a right Wilms Timor (kidney cancer) December 10, 2019. Just one month from her 3rd birthday. She had a full right nephrectomy followed by 5 months of Chemotherapy. This was devastating news. We were heartbroken.
These last 2 years had been tough to say the least and that’s not even adding covid to the mix. I wanted to take a minute and list all the blessing, comforts, and joys these last two years had brought us. Without God I have no clue how I would have made it through any of this. He was my rock, healer, gave me strength to get up every day, comfort when I felt like I was drowning, and peace when I thought we would never see the end. We put our faith and trust in God and he blessed us more then we deserved.
Laurel survived her 8.5hr surgery that removed an almost 4lbs tumor and her right kidney. We were allowed all our family in hospital to get us through this (thankful just before covid). Laurel recovered very quickly from surgery (she had an incision almost half way around her little body) and a port placed.
We had amazing family and friends that watched over our other two children. We had an amazing church family that made us meals for many many months. Even friends, family, and people we didn’t know from our community brought food for us and the kids. We had so many people and local churches praying for us and that brought us the most comfort.
Laurel rocked the 5 months of chemotherapy with little to no side effects. She even helped the nurses draw blood and give her her own medicine threw her port. Laurel had many MRIs, CTscans, ultrasounds, xrays, blood work, and surgeries without much fuss. She has been tested for covid so many times now all while she was strapped in her car seat and took it like a champ!
Laurel is doing very well now! Laurel is still monitored every 6 months for enlarged lymph nodes in her belly that have been stable for 28 months now. Her oncologist won’t say she’s cancer free till year 5 (May 1st 2025).
Laurel loves going to school and learning to read and write! She plays soccer and apart of a dance team! She really is the sweetest, strongest, and most amazing little girl I know! And the best part of all of these is that we get to hug and love on her for each passing day! Each day I thank God so much for seeing her through this.
My family will continue to bring childhood cancer awareness for many years to come. Childhood Cancer is very rare and not too many people know that the federal dollar amount towards pediatric cancer is only 4%, while the rest of the 96% goes toward adult research. That’s why we have to be advocates for our children! I am very honored I was given the opportunity to share Laurel’s story with you! I hope it shines some light and hope for someone else in our community!
Laurel Day after surgery.
Laurel 1 year cancer free.
Laurel 2 years cancer free.
Cancer is the #1 cause of death by disease among children. Learn about childhood cancers and treatments by visiting these sites.
There are countless opportunities to get involved in the fight again childhood cancer. You can…
- Help Raise awareness
- Advocate for the cause
- Support research and resources for children and families
While we can’t list them all, here are links to some of the most well-known organizations supporting Childhood Cancer to help you get started.
Don’t have time to get involved directly? Your donation can impact childhood cancer research and legislation and provide support and services to impacted children and families. There are so many ways to give.
- Donate a vehicle
- Purchase Items that support Childhood Cancer
- Give to research
- Support assistance programs for children and families
Below are link to a few of the most well-known organizations providing support to the cause. Just look for the DONATE tab or button.