age 9 | Childhood cancer survivor (Stave IV High-risk Neuroblastoma)
Submitted by grandma, Donna:
Hi, welcome to all. Thank you so much for the opportunity to share our journey. Our story begins on May 16, 2013, with our 21-month-old granddaughter, Raygan... We were on a mini "way-cation" as Rayray called it.. when the first sign that Rayray wasn't feeling well started, she seemed very whiny and clingy. She just didn't seem to be our happy little baby.. Something was wrong but I had no clue that our simple little world was about to be shaken to the core.
Later, While bathing Raygan, I noticed a lump in her tummy, it was kinda under her rib cage and protruding just a little. Hmmmm, so naturally I thought maybe this was causing her discomfort. I made an appointment with her pediatrician for 9 am on Monday, May 20...That day is forever etched in my mind. What I thought was constipation issues turn out way worse.. It is on this day. After X-rays and an ultrasound, did we learn that our 21-month-old baby had CANCER. She had a large MASS in her tummy and we were immediately referred to UVA pediatric oncologist. As the news that Raygan had cancer, spread through our hometown.. the amount of love and support shown in every post on fb, every phone call and text, we certainly could feel the love.
Our baby was indeed loved. We had a meeting with her Peds dr and she told us that Rayray had a huge tumor and that we would be hearing from UVA Peds oncology tomorrow morning. Our dr thought it was a tumor on her left kidney, called Wilms Tumor. She gave me some information on Wilms Tumor and sent us home... She said go home and enjoy what's left of your day. As I left the pediatrician office, my first stop was to see my husband, Gene (poppi as Rayray called him). As Raygan bounced in the shop and ran for her poppi, to tell him about her test and all the new things she learned today, my head could not understand, how in the world did I MISS A LARGE MASS, why was she not sick, how long had the cancer been growing? Do babies even get cancer? Is it curable? Will she die? What are her ODDS? These are Questions THAT have answers but DO I REALLY WANT TO KNOW THE OUTCOME?
As confused as I was and heartbroken to hear that our baby girl, who was 3 months shy of being 2 yrs old could really have cancer.. How do kids get cancer???? What kind of cancer? I Questioned myself, did we cause Raygan to get cancer? Was it something her mom did or didn't do while pregnant? So many questions, that I've learned, have NO answers.. Childhood cancer is strictly a "bad luck" disease.. The afternoon of May 20 while headed home, questioning everything about the last few months, trying to figure out, when this monster grew? Why wasn't she in pain? HOW DID I NOT KNOW echoed in my head.. Rayray had been a perfectly healthy baby. Well-child visits were great.. She was meeting and exceeding milestones.. she never had ear infections, no colds, nothing.. She was seen twice in the previous months for unexplained fevers.. symptom I now know could have been cancer.... Our dr had Contributed the fevers, to a VIRUS.. And now, they tell me she has cancer!! How could that be???
On the drive home I got a call from a PedIATRIC oncology Dr from our local UNIVERSITY OF VA CHILDREN'S HOSPITAL.. he had just seen her ultrasound and advised us to pack bags for a week stay.. His professional advice was that we needed to bring Raygan immediately and as gentle as we could, to UVA RIGHT NOW. I hung up the phone and began to pack enough clothes for myself and rayray. When my husband came in from work, he said honey, what are you doing? With tears running down my cheeks I told him Rayray must be sicker than we know and we needed to go to UVA now. As I passed along the info from the Dr., Rayray was running and playing as usual, with no signs she was sick at all. Little did I know, this man who was named Dr. Two Boys by Rayray, was to be our guiding light in a very dark world. His name, Dr. Brian Belyea, and his first words to us, Mr. And Mrs. Abshire, as he introduced himself, I am so sorry to meet you like this.. And he gazed at our little girl running playfully in UVA's ER.. WE had no idea that she was so sick.
To move along with the story, Fast forward to Monday evening, May 20, 2013..we drove ever so slowly as instructed by our dr, and followed the strict instruction upon arriving at Uva ER.. He specifically advised us, do not even hit a bump in the road hard.. DO NOT let anyone touch her belly.. I passed along the instructions to the hospital staff, truthfully, I wasn't sure if she would spontaneously combust... Fast forward--We were admitted to UVA on the evening of May 20 and the 7th floor became our home for the next 18 months. As I quickly learned, everything happens very fast in the cancer world.. There was NO time to absorbs the diagnoses, no time to think and certainly no time for second opinions.. We had to fully trust our little girls life, to a TEAM of doctors, nurses and staff that we had never met before.
As I stated before, everything in the cancer world happens fast. We will fast forward again.. We spent 7 days in UVA, a very frightened and confused seemly HEALTHY baby was put through some horrific procedures.. She was held down for IV's placement, labs and examined by numerous doctors.. She was given medication to sedate her for MRI, CT and MIBG scans. She was again sedated and endured surgery to put in her central line, biopsies of the tumor and double bone marrow biopsies. It was a long grueling week but she made it.. We were discharged after 7 days and sent home with instructions on how to clean her lines. Instructed on fevers.. and to wait on the results of the biopsy as to what type of cancer she had and the Stage.
The longest week and a half was spent learning how to care for a very active 21-month-old with a central line hanging from her chest.. Administering medication and cleaning the line. A lot of time was spent trying to figure out how to keep her lines out of her diaper. She was not allowed to be bathed anymore so sponge baths and washing her hair were obstacles to overcome. By Wednesday, June 5, the results were in high-risk NEUROBLASTOMA stage IV, poor histology, and N-MYCN NON-AMPLIED. The journey was to be 18 months long, including 6 rounds of chemo, stem cell harvest, surgery. High dose chemo and Stem cell transplant, 20 days of sedated radiation, and 6 months immunotherapy. She had a Clinic appointment every Friday and central line dressing change.. We were told, this treatment plan is the ONLY chance Rayray has of beating the monster.. We must do ALL steps in the exact order, and pray that her aggressive cancer responded to treatment. Her chances of beating cancer was about 50/50, if it responded.
On June 7, 2013 she had her 1st clinic appointment with admittance for her 1st round of 3 separate CHEMOS.. Another week-long stay. Our little girl handled her new surroundings and adjusted well to our "new normal", as long as meme didn't move an inch away from her, all was good. By June 24, her long blond curls were replaced by a slick smooth bald head. She had chemo every 21 days for 6 cycles. Usually 5-7 days after chemo, the count crashing and neutropenia with fever reared its ugly head and we would spend the next 7-10 days inpatient with IV antibiotics for precaution of infections. And waiting on her counts to rise and fever to subside.. Only To get released and be admitted again for the next round of chemo within a few days.. It was a vicious cycle but had to be done.. In August she celebrated her 2nd birthday admitted to PICU to get her stem cell harvested for her bone marrow transplant in December.
The month of September her 4th round of chemo and she got an NG tube to try to maintain weight..nausea was her new best friend. Any smell would send her heaving into the next room.. She ate very little by mouth. October 10, 2013 brought the surgery to remove the "monster" that had invaded her tummy. She was inpatient for 4 days and released to recover from the surgery for a week .. Readmitted in time for her last round of chemo before transplant.. November was her last round of the standard COG protocol CHEMOS before her stem cell transplant. Woohoo, we completed the 1st leg of the journey. Dec 10, 2013 she was admitted to MCV hospital, in Richmond and was administered high-dose chemo for 4 days with the next 2 days waiting for counted to hit rock bottom. One day of rest and Her stem cell transplant, RE-BIRTHDAY was on Dec. 17.. she spent the next few weeks feeling the downfall of counts and serious side effects from the CHEMOS. She spent 28 days total in MCV hospital on the adult bone marrow unit floor. With the New Year upon us, Jan 2014 we were finally released to come home to continue the next course of treatment.
In Feb, At 2.5 years old she had to be sedated every day for 20 days to have her tummy, both sides of her spine and areas inside her pelvis radiated. In March 2014 she had scans and bone marrow biopsies again, we were excited to learn that our baby girl had beaten cancer and her scans we showing NED, no evidence of disease.. And her BM was cancer-free. April 2014 she started on the last leg of the journey and was the 1st child to have immunotherapy (antibody therapy) at our local children's hospital.. She had 5 intense rounds of ch14.18, IL2 and 2 combo round of both drugs for 6 months..every 21 days she was impatient again, for 5 days with 3 of those rounds in PICU, creating a war inside her 22 pound body.
Excruciating pain and fevers in excess of 105 degrees were caused by the toxic drugs administered through her central line.. Each month brought us CLOSER to the end of treatment. Oct 5, 2014 was her last day of treatment and the last pill she would ever have to take. She made it, our mighty warrior had beaten cancer.. She was scheduled for her end of treatment scans and biopsies. Scan results were perfect, continued with NED.. Halloween day, Oct 31, 2014 she had her central line removed.. Fast forward.. 🎗WE ARE SURVIVING🎗
Today she is 9.5 years old and living life to the fullest..She is in the 4th grade at CASSELL elem. She is proud to say "I beat CANCER".. She is one of the strongest people I know..we are grateful that GOD BLESSED US with a miracle.. To this day, she is one of our many local hometown HEROs, nicknamed the RAY of Sunshine..We are honored to celebrate that she is still NED..She has reached her 5 yr off treatment and is classified as CURED.. She moved to long term survivor clinic in November of 2020 and has a whole new set of Doctors to monitor the long term effects of the toxic chemo and radiation we gave her as a toddler. Her journey will continue for the rest of her life, EACH DAY IS A BLESSING.. WE LIVE BY THE MOTTO, NEVER TAKE ONE DAY FOR GRANTED..