So today we continue with Shanaya’s story as promised…
Having no luck in resolving the problem of the swelling and pain in Shanaya’s arm, her worried parents eventually resorted to sending the specialist a photo of her arm on the 5th September, as it was not looking at all normal.
The specialist referred Shanaya to yet another orthopaedic doctor, who ordered more x-rays and advised Shane and Lee-Anne that it looked to him like Shanaya had a bone tumour but told them that he would need to do a biopsy with full histology to confirm it.
On the 7th September, little Shanaya underwent the biopsy, an MRI, a CT-Scan, more X-rays, and various blood tests.
The doctor got the histology results on 13th September, 2017 and they confirmed that she had Stage 4 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 were metastasis in both her lungs.
Shanaya was then referred to the Oncology unit at which she is still being treated.
Ewing’s sarcoma is a bone cancer (although it can also very rarely develop in the soft tissue) and is the second most common primary sarcoma that can develop in children, comprising 10-15% of childhood bone cancers.
The Ewing’s family of tumours:
1 Ewing’s sarcoma of bone
2 Extraosseous Ewing’s – a tumour outside of the bone
3 Primitive Neuroectodermal Tumour (PNET)
4 Askin’s Tumour (PNET of the chest wall)
Ewing’s sarcoma occurs most commonly in the ribs, pelvis, chest, long bones of the legs and arms, skull, and vertebral column (spine).
Extraosseous Ewing Sarcoma appears in the soft tissue of the arms, legs, trunk, head, neck, abdominal cavity, or other areas.
Ewing’s sarcoma is not very common in younger children; it occurs mostly in the teenage years and is slightly more prevalent in boys.
Due to the staging and the size of the tumour, the oncologists advised Shanaya’s parents that she would require 6 cycles of intensive chemo over a period of 7 months.
Thereafter the surgeons would do an assessment to see whether the tumour could be removed or if they would need to amputate the arm and put Shanaya on maintenance chemotherapy. It was felt that due to the aggressive nature of her tumour amputation would be highly likely.
And so started the journey for Supergirl Shanaya the First and her family against the monster that is Ewing Sarcoma!
On 20 September, 2017, Shanays’a mommy, Lee-Anne posted the following on Facebook:
As parents, nothing prepares you for hearing the news that your baby has a rare disease. The first thoughts that cross your mind is why us, what did we do, how could we have prevented this, how could we have not picked this up sooner however those thoughts fade away almost instantly.
From that moment on, all you think about is that you need to be your child’s strength, faith and hope. Our 3 year old Shanaya the First has recently been diagnosed with Ewing Sarcoma in her left humerus which completely blindsided us. She is having her port inserted today to start chemotherapy.
Although the road ahead of us is unknown we are faithful that this little princess is destined for greatness and this is only a speed bump she needs to overcome. Shiva is guiding you in each step you take angel. Mommy and Daddy are so proud of you. Your strength inspires us.
We love you, our one and only Shanaya the first. We got this babygirl!!! Ewings does not stand a chance against us.
Shanaya the First had her 7th visit to theatre today since April to insert her hickman line port. She is so happy that there will be no more needles going into her hands and feet because she has a “Magic Button”. Our brave little princess.
Shanaya is completely in love with Disney Princesses, John Legend and everything related to dressing up. She also loves Barbie and Butterflies …. She calls herself Shanaya the First because she says she is the one and only (and she is also our Butterfly Princess).
Shanaya started her first cycle of chemotherapy on the 14th September, 2017.
Shanaya the first handled 4 days of intensive chemo like a true princess. She still insisted on being in a dress. Ewings Sarcoma we think you met your match. Our diva aint going to let you cramp her style
I call myself Shanaya the First for a reason. I am a strong fashion forward diva that melts everyone’s heart yet crushes every obstacle in my path.
Please come back on Friday for Part III of Shanaya’s Battle with Ewing Sarcoma