Riley is a happy, smiley little girl who loves giving hugs and kisses. She loves dancing and anything her big sister does.
Riley was diagnosed with Glioblastoma in April 2020. She had been vomiting for a week and was misdiagnosed with a stomach virus. Then one evening she lost consciousness; a CT scan revealed a large tumor and bleeding in her brain.
Riley had a total of three brain surgeries and six cycles of chemotherapy. Amazingly, she has no limitations.
We have always valued family time but now making memories is the most important thing and we truly try to enjoy every single moment with our daughters.
Max was diagnosed with GBM in November of 2020. Max was experiencing headaches of increasing frequency and severity; which eventually landed him in the ER. Not long after arriving in the ER, the CT scan showed a mass in his head. He was transported to CHOP where we had surgery. He’s since undergone radiation and chemotherapy. Unfortunately, the cancer has come back and spread despite his amazing efforts to FIGHT.
Kallie was diagnosed with diffuse midline astrocytoma/glioblastoma in June 2021. She had cold-like symptoms the week before and then had what we thought was a stomach bug over the weekend. She was very weak, lethargic, and vomiting. When she wasn’t fully recovered by Monday we went to our local ER and was Kallie was diagnosed with mono and received fluids. By the afternoon, she hadn’t perked up and they sent us to CHNOLA to be further examined. Once there, they performed a CT and found the mass.
She had a partial tumor resection in June which gave us the official diagnosis, completed 33 sessions of radiation, and had 45 nights of chemo. We have an MRI this Friday and then will start maintenance chemo. I (mom) am an RN and had to give up my full-time position to be available for treatments and appointments and to be her primary caregiver. It is also hard on her almost 2-year-old sister that understands Kallie goes to the doctor but hates having to be separated from us when we have to go.
Kallie has always been a bright light and very happy girl. She has always had a heart for making people feel good and making them smile. Even through this journey, if you ask how she feels she tells you “happy” every single time and tells you “great” with a big ole thumbs up if you ask her how she’s doing.
Ellison was diagnosed with Choroid Plexus Carcinoma on 5/26/20. They originally thought it was a papilloma from the imagining. It started off by him having small seizure-like jerks. We ended up taking him to a local hospital and they decided not to do any testing for an EEG since there was no one on call that day to read the test. They told me, it was likely just infantile spasms.
I didn’t like just guessing so first thing Monday morning I called his doctor and she ordered imaging and testing to rule out anything unusual. The testing day came around and we were told everything looked fine and we were ok to travel for our family vacation but his doctor called me asking if both mom and dad could be present to see a neurologist first thing in the morning. Being 8 hours away, we drove through the night to make it to the appointment.
That day our lives changed forever. We were told he had a brain tumor, it was extremely rare, and to stay off google. He didn’t know much about it but hoped we would find a doctor who could help. We were confused since most places take patients but since his diagnosis was so rare we had a hard time finding anywhere to actually do the surgery. We were turned down by many hospitals and devastated each time.
We had a friend mention St Jude Hospital. I had never thought I’d be calling a place like St. Jude in hopes of life-saving surgery for our son. Within 30 minutes of reaching someone, I had a call back that their neurosurgeon had actually done a couple of these surgeries and thought he could remove his tumor and when could we head to Memphis? Within 2 days we packed up and made the trip for his surgery.
The neurosurgeon still said it looked to be a papilloma and if we wanted we could delay surgery for a few weeks and then come back. We declined and went ahead with the surgery ASAP. Turns out during his 8-hour surgery they found it was not a papilloma, in fact, it was carcinoma which made his prognosis even vaguer. The neurosurgeon said, “I’m so glad you decided to go ahead with the surgery, if we would’ve waited it may have been too late.” The next day they set us up with their neurooncologist at St Jude.
Upon moving to Memphis and with my husband, Ellison and my daughter were starting a routine with no idea how we were going to make it. It just so happened that I saw Kelly sitting in the same waiting area for the clinic and struck up a conversation with her while our babies babbled at each other. Little did I know that meeting her would give not only myself comfort but our family so much joy during this difficult time. We were on the same chemo cycle, the same type of chemos even with different diagnoses. She also had a daughter who was close to our daughter’s age and they instantly became friends.
Sometimes God sends you angels in disguise and I believe for us it was Kelly and her family. Without them, we would’ve felt so isolated and alone. We were able to joke about the things only cancer families do and have someone who truly understood what we were going through while offering comfort to help us make it through a difficult time.
As I sit here and type, we are waiting on Ellison’s final scans and a text popped up. It was Kelly wishing us luck and praying for us. It just hits different when you know it’s a friendship that’ll last forever. Ellison and Riley love playing with each other. Their photoshoot of our family means so much to us. These are the memories we will cherish for a lifetime. We secretly hope Ellison and Riley end up getting married and living happily ever after!
Riley – Glioblastoma
Riley is 17 months old now and just completed 6 months of an intense chemotherapy regimen. At 9.5 months old Riley had intermittent episodes of vomiting and her pediatrician thought she was fighting a stomach bug. My mom’s gut told me something was wrong. Less than a week after seeing our pediatrician, my perfectly happy and healthy baby girl fell over and started to lose consciousness. We called an ambulance and a CT in the ER revealed our worst nightmare. There was a massive brain tumor taking over most of Riley’s right frontal lobe and it was bleeding. We were transferred two hours away to the nearest hospital that had a Pediatric Neurosurgeon. Riley had her first of 3 brain surgeries that night. Our Neurosurgeon was not even sure if she would make it through the surgery, but she did, and she was standing up in her PICU crib the next day.
Three days later, after the biopsy came back we heard the dreaded words, “Your child has cancer.” Riley’s tumor was a Glioblastoma (stage 4 brain cancer). Though they were able to resect the tumor, the Neuroncologist told us that even with treatment, we had 1-2 years with Riley, if we were lucky, because the tumor is aggressive and would come back. Our hearts shattered that day.
I’ve learned that due to lack of funding and research, Riley’s tumor is very misunderstood, especially in infants. After searching, I found our amazing doctor at St Jude Hospital and he gave us hope for a cure. So we relocated our family from Florida to Tennessee to seek treatment.
Moving in the middle of a pandemic to a place where you don’t know anyone is unimaginable but we quickly found “our people”. Ellison’s mommy and I met at our clinic appointments one day and I knew we would be forever friends with this amazing family. It was so nice to have someone to text my worries and late-night thoughts to and who knew exactly what we were going through.
I love little Ellison like he is one of my kiddos and we are happy to have them in our lives! Riley just completed her treatment & we have faith that this tumor will stay away for good. Riley is doing wonderful! She is such a smiley girl and an inspiration to so many. She has taught us so much about life and love and is truly our hero!
Nate was diagnosed with acute Lymphoblastic Leukemia on 4-5-06. He went through three and a half years of chemotherapy. He is currently almost 7 years off chemo and considered cured. His immune system, took quite a beating from the chemotherapy and is still trying to recover. He receives IVIG every 4 weeks, to help his immune system. During chemotherapy he went through 3 port -a-caths, 6 sets of ear tubes and his tonsils and adenoids were taken out twice. Apparently they can grow back! He had his gallbladder removed as it was full of gallstones from the TPN he was on. He has had his sinuses scraped twice and currently deals with horrible migraines.
Nate loves the army and hopes to enlist one day. He always loves snowy owls and believes they helped cure him.
MaKayla is a SuperGirl! She found out she had Glioblastoma Multiforme (grade 4 cancer in the brain and spine) in September 2007. Her family was told she had 6 months to 2 years to live….6 years ago! She is a patient at St Jude Children’s hospital and continues to defy the odds with her spunky and optimistic spirit! She loves horses, princesses and the color pink. MaKayla brings a smile to the face of everyone lucky enough to meet her!
