Supergirl Shanaya the First Battles Ewing Sarcoma ~ Part V

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

 

Supergirl Shanaya the First Battles Ewing Sarcoma ~ Part IV

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.

Supergirl Shanaya the First Battles Ewing Sarcoma ~ Part III

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!”

Supergirl Shanaya the First Battles Ewing Sarcoma ~ Part II

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.

Supergirl Shanaya the First Battles Ewing Sarcoma ~ Part I

Many of you on our Facebook Page are familiar with the battle that Shanaya, aka our 🦋 Butterfly Princess 🦋 is currently facing, together with her very brave parents, against Ewing Sarcoma.

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…

Spoils, Giggles, Smiles & Tears at Greys Hospital

We just luuurvve our Little Fighters Cancer Trust Representatives – they do SUCH great work and we would not be able to do what we do without our volunteers and LFCT Reps.

Yesterday our Pietermaritzburg Rep, Lauren Hook, did a quick visit to Greys Hospital to bring some joy to all the Little Fighters there and was rewarded with broad smiles and infectious giggles.

Lauren does this regularly once a month and is always cheered by the gratefulness shown by the children as well as the mothers/carers for the little gifts for the kids. There is basically one ward and in it are children of all ages who really get very bored so any games, puzzles etc are always warmly welcomed.

More Hope for Children with Leukaemia

The average survival rate for Acute Lymphoblastic Leukaemia (ALL), the most common type of children’s cancer, has gone from under 20% to 85%  – unfortunately this is not the case in South Africa though 😥

Cutting-edge treatments are constantly being developed for even the toughest cases, but once again, these treatments are not available in South Africa!

Children’s cancers are unique, but the lessons learned from the extraordinary success of consecutive clinical trials have paved the way for advances in cancer treatment in general. New scientific breakthroughs are happening extremely quickly in medicine these days, far quicker in actual fact than the ability to develop and fund new treatments. Unfortunately this also means wrestling with uncomfortable questions of fairness in deciding priorities — who will be treated first?

One of the most important developments in Childhood Cancer is the ability to tailor treatment — to figure out who needs powerful doses of chemotherapy and who could do with less. Lighter treatment causes less long-term damage to the rest of the developing body — very important for children who have their whole lives in front of them. In some subgroups of patients with ALL, we’re getting better-than-90% survival rates using minimal therapy. This will allow children to recover more fully, without long-term side-effects and with a normal life expectancy.

Right now, there are two groups of kids with ALL at high risk of dying: those with treatment-resistant disease, and those whose cancer recurs either more than once or after receiving a stem-cell transplant.

 

 

Even for these toughest cases though, there is now a promising new treatment: a type of immunotherapy calledCAR-T that harnesses the body’s own immune system to destroy cancer cells. Doctors remove immune cells, called T cells, from the child’s blood and reprogram them to find and destroy the leukaemia cells by changing the DNA that controls the immune response. Those cells are put back into the child’s bloodstream, where they multiply then track down and kill the cancer cells. (The first Child with Cancer to receive this experimental treatment, a girl who had been destined to die, is alive and well 12 years later.)

As doctors and scientists home in on the toughest cases, treatments will become more “customised” and more expensive. It currently costs in excess of $2 million to save the life of a child sent to the U.S. for the new CAR-T therapy. If this treatment was available in other countries, it would cost far less, and would be far less disruptive to both the Child with Cancer as well as the rest of the family who generally have to move to the US for at least the duration of the treatment.

It is hoped that the role of CAR-T treatment can be expanded to other types of cancer next — for example, brain tumours, which are the second-most-common group of childhood cancers.

The problem is that many medical aids will not cover such exorbitant costs. Also, there’s never going to be enough money to fully fund every emerging treatment and to try “everything” in every case, so pursuing one type of costly treatment means less money for another.

Many medical ethicists, governments, health-care professionals and ultimately everyone in society is grappling with the question of “If it costs $2 million for that treatment for one child but there are far fewer children with leukaemia than there are adults with breast and prostate cancer, and that amount would treat far more adults, What is a fair expense?”

Ultimately, every advance we make in treating any type of cancer could help us to develop treatments for others, and hopefully we will see survival rates continue to rise, allowing the bedside role more and more to encompass hope as well as compassion.

 

 

Donate New Footwear & Winter Clothing for Kids with Cancer

We need YOUR help!!

This year the Little Fighters Cancer Trust is combining our Barefoot for a Day and Snug as a Bug Projects into one big project and we need YOU to donate NEW winter footwear (shoes, takkies, boots, slippers etc) and NEW winter clothing for our Little Fighters.

Your donations will be sorted and packed at our HQ and sent out to our Representatives in the various provinces, who then distribute the shoes and clothing to Children with Cancer in the Pediatric Oncology Hospital Wards and Oncology Clinics around the country.

Our Little Fighters have greatly impaired immune systems due to the cancer as well as the ravages of the Chemotherapy and Radiation Treatments, so we can only accept NEW shoes and NEW clothing for these projects. (We do, however, accept donations of second-hand clothing and other goodies throughout the year for sale in our Pre-Loved Goods Charity Shoppe.)

All donations need to be in Paarl by the first week in March to ensure that they can be sorted and packed and sent to the various regions for delivery mid- to -end March.

If necessary we can organise for our wonderful transport company, Kargo, to collect sizable donations – with no charge to you at all.

Barefoot & Snug Challenge to ALL South African Schools

The Little Fighters Cancer Trust is combining our Barefoot for a Day and Snug as a Bug Projects into one big project this year, and we put out the call for donations last week. (Read further down about the response we got and the reason for this Challenge!)

In both of the projects we ask for donations from the public, which are sorted and packed at our HQ and sent out to our Representative in the various provinces, who then distribute the shoes and clothing to Children with Cancer in the Pediatric Oncology Hospital Wards and Oncology Clinics around the country.

Our Little Fighters have greatly impaired immune systems due to the cancer as well as the ravages of the Chemotherapy and Radiation Treatments, so we can only accept NEW shoes and NEW clothing for these projects. (We do, however, accept donations of second-hand clothing and other goodies throughout the year for sale in our Pre-Loved Goods Charity Shoppe.)

Call To Promote Global Childhood Cancer Awareness

Sheikha Jawaher Bint Mohammed Al Qasimi, Founder and Royal Patron of the Friends of Cancer Patients, FoCP, and wife of His Highness the Ruler of Sharjah, has called for combined global efforts to promote worldwide awareness of paediatric cancer and provide access to treatment for children suffering from cancer, particularly in low and middle-income countries.

The call was made on the sidelines of the launch of the Access to Essential Medicines for Children with Cancer, Sharjah PORTAGE, Forum, held earlier this month, under the theme ‘Challenges and Pursuit of Innovative Solutions’, with the participation of 60 senior officials of international health organisations, medical and health experts, and heads of private and public sector entities from around the world.

“By playing host to the childhood cancer forum in line with the vision and directives of H.H. Dr. Sheikh Sultan bin Mohammed Al Qasimi, Supreme Council Member and Ruler of Sharjah, the emirate is taking a new step in its commitment to combat cancer. Sharjah is pushing even further joint initiatives and collaboration with various international agencies as part of a worldwide campaign to promote awareness about the importance of early detection of cancer and combining efforts to save the lives of thousands of children with cancer around in the world, many of whom have died due to lack of resources,” said Sheikha Jawaher, who is also the International Ambassador for the World Cancer Declaration of the Union for International Cancer Control, UICC.