Dear Cupcake Angels…
Meet Shanaya, Our Sarcoma Hero. This is her journey and her fight against cancer.
Written by her mother Lee-Ann Govender
Meet our beautiful supergirl Shanaya the First whose life was robbed from us due to a rare form of cancer called Ewing Sarcoma. Our Shanaya the First was diagnosed with Stage 4 Ewing Sarcoma in her left humerus with metastasis in both her lungs in September 2017. Ewing sarcoma is a cancerous tumor that grows in the bones or the tissue around the bones (soft tissue) – often the legs, pelvis, ribs, arms, or spine. Ewing sarcoma can spread to the lungs, bones, and bone marrow. According to US studies, Ewing Sarcoma attributes to less than 7% of all diagnosed childhood cancers. Adolescent boys are most prominently diagnosed with Ewing Sarcoma due to rapid growth spurs thus for our precious 3-year-old daughter to be diagnosed with Ewing Sarcoma was extremely rare.
SHANAYA’S JOURNEY BEFORE HER CANCER DIAGNOSIS
Before her diagnosis, Shanaya had a completely uneventful childhood concerning illnesses. She was born on the 1st of November 2013. She completely melted everyone’s hearts since her birth. Shanaya loved Disney Princesses, John Legend, and everything related to dressing up. She called herself Shanaya the First because she said she is the one and only.
On the 14th April 2017, Shanaya woke up in the middle of the night screaming with pain in her left arm and a fever of 41 degrees. We gave her pain medication however the pain was not subsiding. The next day we took her to the nearby medical centre and they gave her Nurofen thinking it could be a sprain. Three days later her arm started swelling and was hot, her fever wasn’t breaking, and the pain was unbearable. We went back to the same medical center; they did an x-ray but couldn’t find a fracture however they said that there is something in the bone. We were referred to a nearby hospital, whereby Shanaya was admitted. The orthopaedic requested blood tests, x-rays, and an MRI. He told us she had osteomyelitis (infection in the bone) and needed to be taken into theatre to drain the infection from her left humerus. We stayed in the hospital for 6 nights and she was taken back into theatre to clean the wound. The doctor took samples of the pus from the bone and sent it along with the blood samples for cultures. The doctor advised that all the blood tests and pus cultures came back clear. We proceeded with the follow-up checks as required.
Her bandages and stitches were removed. She started becoming very tired and still struggled to move her arm. In the nights she would cry of pain. She also started losing weight as she had no appetite.
Her arm started swelling again, we took her to the emergency room at the same hospital. They did blood tests, x-rays, and a sonar. The sonar showed 2 abysses, 1 inside the bone, and 1 in the soft tissue outside the bone. She was admitted again, the first orthopaedic was on leave so another orthopaedic saw us and advised they had to take her back into theatre to drain the 2 abysses as her osteomyelitis is back. We asked how is that possible and were advised that osteomyelitis is a recurring condition. We questioned the doctor so much, but he assured us that draining the abysses is the right thing to do. She was taken back to theatre on the 15th of June. The doctor drained the abysses and took pus and blood samples and sent it to the lab again. The doctor also connected a drain into her arm to allow for the excess pus to drain. He discharged us after 2 nights and advised that the blood tests and pus cultures were clear. The next week at her follow up more x-rays, bloods and a sonar was done. The sonar still showed 2 masses. The first orthopaedic was back and he said he was happy that everything looked ok. My husband and I were concerned that her arm wasn’t decreasing in size, so we went to another GP who referred us to a Homeopathic Paediatrician that gave her natural medication and treated her for septic arthritis.
JULY AND AUGUST 2017
The arm still was increasing in size, so I went to another Orthopaedic for a third opinion who referred us to a bone infection specialist. The bone specialist requested a CT scan, x-rays, and blood tests. The infection count in her blood was extremely high at 251. Her arm continued to increase in size and reached 25cm in circumference (normal size was 13cm) so he admitted her on the 29th of July to administer a very strong antibiotic. He took her into theatre on the 31st of July where he drained the arm, scrapped the humerus, and connected 2 drainage pumps into her humerus. He sent 8 tissue samples for microbiology cultures which he said identified a staph aureus infection. He kept Shanaya in hospital for 18 days with the drainage pumps connected into her arm. He took her back into theatre on the 14th of August to clean the wound and remove the drainage and we were discharged. He advised that she had new bone growth hence the shape of her arm.
We went for a follow-up appointment with the bone specialist but the arm wasn’t decreasing in size, it increased to 33cm in circumference. On the 5th of September, we sent the specialist a picture of her arm as it was looking abnormal, veins were forming and she could no longer move her fingers and had no feeling in the arm. The specialist referred us to another orthopaedic. He did an x-ray and advised us that it looks to him like she has a sarcoma but he would need to do a biopsy with full histology to confirm it. We were confused and still asked him what infection is a sarcoma to which he replied it was a tumor in the bone. That took us by complete shock and honestly a piece of us died that day. We did not expect to hear cancer as both our families have no history of cancer. On the 7th of September, she was taken into theatre again for the biopsy and another MRI, more x-rays, more blood tests, and another CT was done. On the 13th of September, the histology results confirmed that she had an Ewing sarcoma, a rare bone cancer. The bottom half of her left humerus had been eaten away. The top part of the left humerus was fractured and there was metastasis (small tumors) in both her lungs. The doctor referred us as an emergency to a Paediatric Oncology unit.
On the 19th of September Shanaya was taken into theatre again and had a port inserted. The 20th of September marked the day her chemotherapy began.
Her treatment plan was an aggressive approach as required for Ewing Sarcoma and we were warned of the severe side effects she would face. First Chemo was required, then followed by surgery, radiation and maintenance chemo depending on her response to the treatment
She had to receive 6 cycles of chemotherapy. Each cycle needed to be administered once a month and consisted of a 6-day hospital with 5 different chemotherapy drugs per day. Her hair started falling out within a week of the first cycle.
Over the 6 cycles, she experienced extreme side effects and was hospitalised numerous times to administer antibiotics, blood transfusions, and other required medication.
This was a scary time for us as:
- We were living in complete isolation in order not to expose Shanaya to infection
- Medical bills were piling up
- We spent more time at the hospital instead of work or home
- Our 8 yr old son was practically getting by on his own
- Shanaya’s arm remained in a cast and she had no use of it
- Shanaya’s entire diet had to change
- We had to pay for help on the days Shanaya was at home and we had to work
- Petrol costs went up due to constant hospital trips
- Everything suddenly just cost so much
Only to name a few, but we persevered.
Cycle 6 was complete and Shanaya required to have a CT scan on her lungs and her arm to decide the right surgery approach. More shocking news awaited us. Her arm reduced in size to 19cm in circumference, her lungs were clear but the previous incorrect surgeries, the damage caused by the cancer, and the fact that the tumor was involved in her major artery and nerves, Shanaya was not a suitable candidate for limb salvage surgery and we were told that we need to give permission for amputation of her left arm from the shoulder.
2 March our baby was taken into theatre for the 8th time in 11 months and her left arm was amputated. That day changed our lives completely. She was such a fighter and only stayed in ICU for 3 nights. She struggled for the first few days but quickly started re-learning how to carry on.
Even though Shanaya was coping physically with her one arm, she was not coping without mommy. Unfortunately, the only option was for mommy to resign from work. Shanaya started radiation on her lungs in April which came with its own side effects.
Shanaya started her 7 cycles of maintenance chemo which consists of new chemotherapy. Shanaya still had regular hospitalisations, check-ups, and blood tests but suddenly life was so much easier with mommy at home.
Shanaya completed 3 of 7 cycles of maintenance chemo. Our family faced another hurdle, Shanaya started experiencing excruciating pain in her left knee. She was admitted as an emergency. Scans confirmed heartbreaking news that her cancer had spread to both her knees and multiple spots in her pelvis.
It was officially confirmed our princess had relapsed only 3 months into her maintenance treatment. We had to make the hard decision to take the house of the market to create as little change as possible for Shanaya but that came with its own financial burdens.
Shanaya soon began high dose radiation to her left knee and left side pelvis. The radiation left her with terrible burns.
Shanaya began a new chemo protocol for her relapse. The aggressive spread of the disease then began. Since her relapse, Shanaya was no longer able to walk. She had extreme pain at times and her legs are very weak. The new chemo was also causing severe side effects and she had lost so much weight. Doctors have agreed that Shanaya requires 3 more cycles of the new chemo until Feb 2019 thereafter scans will be conducted to assess her progress. In December 2018, Shanaya’s health started deteriorating very fast. The cancer spread to her skull and nasal cavity. Everything quickly changed to give her quality of life.
On 16th May 2019, our beautiful precious little girl died at only 5 years old. We had to watch her take her last breath. Nothing about what Shanaya went through was fair. The fact that she was not able to grow up because of a disease is not fair. Shanaya’s misdiagnosis led to the aggressive spread of the disease. She fought with everything she had because she wanted to live but there was no cure for her.
As a parent do not ever overlook a fever, lump or bump, or anything unusual on your child’s body. As a parent, try to educate yourself on illness affecting our children. As a parent, create awareness and support childhood charities.
“If children are our future, why are we not fighting for them to see their future”
All our love
Shane & Lee-Ann Govender (blessed parents of a little warrior who fought a battle no child should)