Before we go any further though, please join the Little Fighters Cancer Trust in supporting Shanaya and her Family by downloading the pic on the left and using it as your Profile pic for today and the next few days to show them how much support there is for our little Butterfly Princess.
For those who may not have been following Shanaya’s journey with cancer, histology results on 13th September, 2017 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 has since undergone intense chemotherapy treatment cycles over the past 6 months, but unfortunately her arm was too damaged and could not be saved and the decision to amputate at the shoulder was made.
And so Shanaya’s Journey with Ewing Sarcoma entered a new phase in 2018.
This would include 2 more intensive cycles of chemo with all the bells and whistles that go with it, major surgery or surgeries, and the possibility of maintenance chemotherapy – but at least the end is in sight…
Mommy and Daddy decided that because our Supergirl Shanaya the First had already slayed the first 4 intensive cycles of chemo and all its side effects like a true warrior princess, she could draw up a “Dream List” of things that she would really like to do, and they would try their best to make them come true.
January started off early with hospital admission number 10 since Shanaya first fell ill in April 2017 – in that short period of ten months, this poor little princess had undergone:
- 10 hospital admissions;
- 8 times in theater;
- Far too many scans, blood tests and doctors appointments;
- 5 months of misdiagnosis and ;
- 5 months of Chemotherapy
And so today we continue with more of Shanaya’s Fight against Ewing Sarcoma…
Ewing sarcoma is the second most common bone cancer in children. It occurs most frequently in the long bones of the legs or arms, the pelvis, chest wall, spine and the skull, but can also begin in the soft tissues and not involve bone.
This disease most often occurs in adolescents, with nearly half of cases arising between the ages of 10 and 20. Ewing sarcoma is somewhat more common in males than in females.
During December 2017, Shanaya’s blood counts took a nosedive, and with a blood platelet count of a mere 18, she was admitted for her first blood transfusion.
Fortunately she was able to go home the next day, so was ecstatic as she hates to be away from her brother Unma with whom she is really close and who she misses terribly when she is in hospital.
Young Shanaya took to her battle with cancer as she does everything else – with a determined smile, even when she was really not feeling well.
Mommy was there with her in the hospital every step of the way, and because Shanaya is Daddy’s Girl, so was her daddy Shane whenever he could be.
Unfortunately, due to the chemotherapy treatments, Shanaya lost her beautiful long hair, but she was not fazed….
“No hair not going to stop me from being the diva princess I am. I am the one ‘n only Shanaya the First!”
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.
Most of you, though, do not know the full story, and because it is so important to share the stories of our Little Fighters so that others may learn, and because Shanaya is facing overcoming another massive hurdle very soon, we will be sharing her story and some insights into fighting this Childhood Cancer over the next two weeks….
Thanks to Shanaya’s Family for allowing the Little Fighters Cancer Trust to publish her story in order to create Childhood Cancer Awareness and perhaps offer some insight to other parents who are going through the same battle.
Shanaya was born on the 1st November 2013 to parents Shane and Lee-Anne, and soon melted everyone’s hearts… she was a typical little princess and had a completely uneventful childhood as far as illnesses go, until one night in April 2017…
Sarcomas are rare types of cancer that develop in the supporting tissues of the body.
There are two main types: Bone Sarcomas and Soft Tissue Sarcomas.
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.
Ewing’s sarcoma is not very common in younger children; it occurs mostly in the teenage years and is slightly more prevalent in boys.
The Ewing’s family of tumours:
- Ewing’s sarcoma of bone
- Extraosseous Ewing’s – a tumour outside of the bone
- Primitive Neuroectodermal Tumour (PNET)
- 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.
Tumours of the elderly, such as breast cancer and colon cancer, accumulate thousands of DNA mutations. These genetic defects contribute to cancer-specific properties including uncontrolled growth, invasion in neighbouring tissues, and evasion from the immune system.
Similar properties are also found in Childhood Cancers, although those tumours carry much fewer genetic defects, making it difficult to explain their clinical heterogeneity.
This is particularly true for Ewing Sarcoma, an aggressive bone cancer in children and adolescents.
A single genetic defect – the EWS-ETS fusion – is present in all tumours, initiating cancer development and defining Ewing sarcoma as a disease, but the tumours carry very few DNA mutations that could explain the observed differences in the disease course of Ewing sarcoma patients.
Tackling this question, a team of scientists from Austria, France, Germany and Spain led by Eleni Tomazou from the St. Anna Children’s Cancer Research Institute in Vienna profiled many Ewing Tumours. They found that the disease’s clinical diversity is reflected by widespread epigenetic heterogeneity.
Losing a child is not natural; it is the absolute worst thing that can happen to any parent, and the heartache that follows is devastating. No parent is prepared for a child’s death, even if they have anticipated it during their child’s illness.
Parents are intimately involved in the daily lives of their children, and death changes every aspect of family life, leaving an enormous emptiness. In addition to grieving the loss of their child, parents may find that they also grieve the loss of the hopes and dreams they had for their child, as well as the potential that will never be realised and the experiences they will never share. The pain of these losses will always be a part of a parent who has lost a child.
Losing a child leaves a hole in a parent’s heart that will never heal; the death of a child is Out of Order – it has violated nature’s way… and can result in a variety of emotions.
Although I did not know Austin personally, I, like every other Team LFCT member and many others, have followed his progress narrowly since the day he became a Little Fighter, and the one thing that struck me was the positivity and grace with which Austin handled his cancer.
I was looking back through his FaceBook Page earlier and could not help but smile…
Austin was a charmer; his positivity literally shone out of the page on every photo… A Charming, Gentle, Smiling, Brave Warrior.
Every post on his page by his family is positive, even if the news was not that great, and it is because of this that I ask you all to join us not in mourning his death but in celebrating this gentle young warrior’s life… Read the rest of this entry