Hi, my name is Donna Abshire. Thank you so much for the opportunity to share our journey.
Our story begins on May 16, 2013. We were on mini "way-cation" with our granddaughter Raygan, 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 under her rib cage and protruding just a little. Naturally, I thought maybe this was causing her discomfort. I scheduled an appointment with her pediatrician for 9 am on Monday May 20th. That day is forever etched in my mind. What I thought was constipation turned out way worse.
It was on this day, after x-rays and an ultrasound, that we learned that our 21-month-old baby had CANCER. She had a large mass in her tummy, Our doctor thought it was a tumor on her left kidney. She gave me some information on Wilms Tumor and sent us home. She told us to go home and enjoy what's left of the day. We were immediately referred to UVA Pediatric Oncology.
As I left the pediatrician, my first stop was to see my husband Gene, Poppi as RayRay calls 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 that day, 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 were her odds?
These are Questions that have answers but DO I REALLY WANT TO KNOW THE OUTCOME?
I was confused and heart broken to hear that our baby girl, 3 month shy of being 2-years-old, could really have cancer.
I questioned if we caused Raygan to get cancer.
Was it something her mom did or didn't do while pregnant?
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. 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. Could these symptoms have been the cancer? So many questions that I've learned have NO answers. Childhood cancer is strictly a "bad luck" disease.
On the drive home I got a call from a Doctor Brian Belyea, pediatric oncologist at UVA Children's Hospital. He had just seen Raygan's ultrasound and advised us to pack a bags for a week's stay - immediately! His advice was to bring Raygan - as gently 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, with tears running down my cheeks, I told him RayRay must be sicker than we know, and that we needed to go to UVA now!
We drove ever so slowly as instructed by Dr. Baylea, and followed the strict instruction upon arriving at UVA's Emergency Room. He specifically advised us to not even hit a bump in the road too hard! DO NOT let any one touch her belly. Little did I know, this man named Dr. Two Boys by RayRay, was to be our guiding light in a very dark world. Dr. Belyea's first words to us were "Mr. And Mrs. Abshire, I am so sorry to meet you like this."
We were admitted in UVA on the evening of May 20 and the 7th floor became our home for the next 18 months. As the news that Raygan had cancer spread through our hometown, we could feel the love expressed in every post on Facebook, every phone call and text. Our baby was indeed loved.
As I quickly learned, everything happens very fast in the cancer world. There was NO time to absorb 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 said, everything in the cancer world happens fast.
We spent 7 days at UVA. A very frightened, confused, yet seemingly 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 instruction on how to clean her lines, instructed on handling fevers. Then we had to wait on the results of the biopsy as to what type of cancer she had, and what stage!
We spent the next 10 days learning how to care for a very active 21-month-old with a central line hanging from her chest and just how to administer medication and keeping the lines clean, including 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.
Wednesday June 5, the results were in - RayRay had high risk NEUROBLASTOMA stage IV, poor histology and N-MYCN NON-AMPLIED.
The journey was to be 18 months long, included 6 rounds of chemo, stem cell harvest, surgery, high dose chemo and stem cell transplant. After that, 20 days of sedated radiation and 6 months of immunotherapy. She had clinic appointments 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 chance of beating cancer was about 50/50 . . . if it responded at all!
On June 7, 2013 she had her 1st clinic appointment with admittance for her 1st rounds of 3 separate chemo - 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. Once released, we were admitted again for next round of chemo within a few days. It was a vicious cycle but it had to be done.
In August, she celebrated her 2nd birthday by getting her stem cell harvested for her bone marrow transplant in December.
The month of September brought her 4th round of chemo and an NG tube to try to maintain her 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, then readmitted in time for her last round of chemo before transplant.
November was her last round of the standard COG protocol chemo before her stem cell transplant. Woohoo! We had completed the 1st leg of the journey!.
On December 10, 2013, she was admitted to MCV Hospital in Richmond, and was administered high dose chemo for 4 days, then waited the next 48 hours for her counts 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 chemo. She spent 28 days in all at MCV on the adult bone marrow unit floor.
With the New Year upon us, we were finally released to come home to continue the next course of treatment.
In February 2014, at the age of 2 1/2, RayRay had to be sedated everyday 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!!!
April 2014, she started on the last leg of the journey. Raygan was the 1st child to have immunotherapy (antibody therapy) at UVA Children's Hospital. She had 5 intense rounds of ch14.18, IL2 and 2 combo rounds of both drugs for 6 months. Every 21 days she was impatient again for 5 days, with 3 of those days 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, but 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. Her scan results were perfect, continuing to show NED.
Halloween day, Oct 31, 2014 she had her central line removed.
Fast forward to today . . .
🎗WE ARE SURVIVING🎗
Today, Raygan is 8-years-old and living life to the fullest. She is in the 3rd grade at Cassell Elementary, and 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 heroes, nicknamed the "RAY of Sunshine."
Today, we are honored to celebrate that she is still NED. Recently, she reached her 5 years off treatment and is classified as CURED. She moves to the long term survivor clinic and gets 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. NEVER TAKE ONE DAY FOR GRANTED!