Ewing Sarcoma Cancer
The story behind the discovery:
About 3 weeks after Abigail had her routine wellness visit she was complaining of back pain. Within a couple hours of hot packs and Tylenol she was still shaking in pain to the point, she threw up. Alyssa called the after hours nurse who told her to bring Abigail to the ER. The ER doc ran blood work, strep test, flu test, did ultrasound of her bladder and kidneys and had no answer for her pain. He directed her to follow up with her PCP, Whitney Alexander.
At the follow up her Doctor could not believe how different Abigail was. Abigail couldn’t bend to touch her toes. So with some ibuprofen and about 3 days later they followed up with her again to see if it was better. Also to perform a scoliosis test. At that point her PCP ordered an X-Ray. The x-Ray showed 10% scoliosis. So the plan was to follow up with Dr. Waanders,the pediatric ortho doctor. He noticed how tight Abigail was and recommended 6 weeks of PT before doing any further testing. His concerns were valid and when Abigail went to see him she was having a “good day”
Before the 1st day of PT Abigail threw up 2 times at school with no other symptoms. As silly as Alyssa felt, she brought Abigail to her PCP both times anyways. After the 2nd trip her PCP ordered a MRI.
Before the MRI and after the 1st PT secession Alyssa drew Abigail’s blood since Abigail was crying out in pain. The results would Finally reveal something was abnormal. Elevated white cell count with no fever. Alyssa drew more blood, some inflammation markers, and those showed swelling. So the day came for the MRI. This test was ordered without contrast and expected to take about an hour. After 4 1/2 hours and contrast to scan the entire spine and brain the MRI, Blood tests, and persistence on Our part showed why Abigail’s back has been hurting so bad.
10% scoliosis is only the tip of this iceberg.
The MRI concluded a mass on Abigail’s L-1 vertebrae from a “preliminary diagnosis condition” called Histiocytosis; LCH for short. “Langerhans cell histiocytosis (LCH) is a rare cancer that begins in LCH cells.
To confirm the diagnosis Alyssa took Abigail to Little Rock to have her mass biopsied. The team, first, did a skeletal survey to see if there were any other masses to biopsy in a less invasive areas. That study found no other places so they went ahead and did the biopsy from the mass on L-1 with the interventional radiologist and the assistance of the CT machine.
The results concluded the previous diagnosis of LHC was inaccurate.
There was a Tumor but would need the neurologist to extract more tissue to determine further.
Before we went back to Little Rock Abigail was excited to take a bath after a week without one. She felt so good she made it to the last day of school to tell her friends hi and happy summer.
The day of the 2nd biopsy came and during Abigail’s biopsy there was a tear causing spinal fluid to leak. The tear was not anything the surgical team did. The tumor is sitting on a spot causing nerve pain and weakening the protective sheath which keeps the fluid in.
Dr. Gregory Albert and Dr. Marcus Stevens from the neurology team discussed packing and repairing the tear and how important it was for Abigail to lay completely flat during recovery to avoid headaches, any infections or meningitis.
We also had the talk about the Discovery of a sarcoma after the previous biopsy.... We didn’t hear that word “sarcoma” We didn’t prepare for that wave of knowledge.
A tumor is either cancerous or not.
Abigail’s tumor is CANCER.
We have finally said the words out loud.
The type of cancer is a sarcoma.. The type of sarcoma was determined from the sample taken.
Dr. Bella-mauve-itch and the hematology team; inclusive of his Fellow Dr. Alvarez, thought this “greedy tumor” is feeding from her muscle or bones. They worked with pathology as quickly as possible to give the Sarcoma a name.
Alyssa was calling it a “little Bastard” We thanked Dr. Albert for taking some of the Bastard out!
The tumor is the cause of her back pain and prolonging the healing of her L-1 fracture.
Abigail started Chemo to kill the cancer.
Abigail will more than likely loose her hair. We’ve discussed this reality with her and she’s been in amazing spirits about it.
Abigail needed several tests to get a baseline for her heart function;EKG and echo cardio gram also she had a chest CT with contrast to look over her lungs.
Additionally went to UAMS for a pet-scan.
It’s like a CT but the solution given would light up any and all cancer cells her body!
She’s so incredibly brave and she’s still my spunky girl.
She called the nurse one evening and said...“um hello my name is Abigail Lewis. I have to go Pee. Oh and I need to tell you I must lay completely flat so I need a pee pan please.”
With the knowledge of Cancer and the treatments needing to be done almost 4 hours away we needed to get a game plan.
The first option was to stay in local hotels since the Ronald McDonald house was full.
The reality of this didn’t feel very homey.
So the new plan was to set up camp in Maumelle Park.
Just in time for the hematology department to call with the name of the “Little Bastard”
Abigail has an Ewing sarcoma.
The short answer is. We expect 12 weeks of Chemotherapy.
We will then do more imaging to determine if we will do surgery, radiation or a combination of the 2 then 22 more weeks of chemo.
From Abigail’s parents Joshua VanLaningham and Alyssa Lewis:
Over the last few months our daughter Abigail has suffered severe back pain that has slowed her social life to a stop and her energy level. We found ourselves asking why can’t we hold her like we did when she was little making everything better?
Neither of us understood why PT; we hadn’t even figured out what was wrong. As hard as it was to watch; Josh even took video of abigail crying in pain.
He wanted to make sure the Doctor could see what our daughter had been going through.
Now we are fighting for the cure!
Any and all donations are greatly appreciated to cover the cost of the camp site, gas, additional medical expenses, and any other expenses to keep Abigail comfortable during travel and treatments.