Seven-year-old’s determined to beat cancer

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He was admitted to Sunward Park Hospital Neonatal ICU where he lived for three weeks on a ventilator, and was then diagnosed with MRSA (Methicillin-resistant Staphylococcus Aureus) Virus.

His mother, Eileen, shared their story with the Advertiser.

After being discharged from hospital in the months to follow, there were numerous occasions when Jordan would just stop breathing for shorts period of time.

“At several doctors’ appointments and examinations the little boy’s condition was mis-diagnosed as illnesses such as epilepsy, for which he received treatment, but showed no improvement,” said Eileen.

“Another strange phenomenon was that Jordan never had the ability to cry tears, which was brushed off by several doctors.”

In the years to follow, Jordan seemed to be a normal toddler and up to date with all developments for his age.

However, in January 2015, he began suffering severe episodes of diarrhoea. Again, after several doctor’s visits, scopes and tests, no cause could be found.

“It got so severe that, in July of 2015, we had to remove him from school as he had no control over his bowels and, at the age of five, was put back on nappies,” said Eileen.

“We went from specialist to specialist, but to no avail – they could not find any fault.”

In October 2015, Jordan developed an irritable cough, as well as rapid weight loss. Once again, he was taken back to the pediatrician.

On examination, no fault was found and doctors decided to do a throat sonar; it was discovered that Jordan’s thyroid was the size of a 40-year-old’s and cancer was suspected.

He was immediately transferred to the Donald Gordon Oncology Unit in Parktown, where several tests were done, including fine needle aspiration, during the course of three weeks.

After three weeks in the hospital, Jordan was diagnosed with a very rare type of thyroid cancer: Medullary Thyroid Carcinoma and Multiple Endocrine Neoplasia.

According to Eileen, oncologists in South Africa were not familiar with this type of cancer.

After almost two months in hospital, Eileen was begging them for an answer and was told by that there were no treatment options available.

In November 2015, Jordan received a full thyroidectomy and tracheostomy and it was found that the cancer had spread beyond the thyroid.

“With no treatment options available it left me – as a mother – devastated,” said Eileen.

“Between caring for Jordan 24 hours a day in hospital, I spent night after night trying to do my own research, to try to find a treatment option.”

She eventually made contact with a doctor Samuel Wells, in the United States, who ran a trial with a drug called Vandetanib for children with this type of cancer.

He immediately set the ball rolling as they found out, to have this drug imported into South Africa – provided they got approval from the MCC – would cost them in the region of R50 000 per month.

“Affording this, as a single parent, was impossible,” said Eileen.

Their next step was to get Jordan enlisted on a trial at the National Cancer Institute in Washington. At this stage, Jordan had spent almost three months in hospital – 24 hours a day.

During the time that he was hospitalised, Eileen was retrenched and her husband filed for divorce, which resulted in her being a single mother with five children (ages 22, 19, 16, 14 and seven), no income and no support.

“Sadly, drastic measures had to be taken,” she said.

“My eldest son had to withdraw from university and leave his studies to assist me with providing for the family, as I had to spend all of my time at the hospital and had no one to look after the other siblings.

“On top of that, I needed to raise money to get Jordan to the United States.”

Eileen added that her absenteeism in her children’s life, due to Jordan’s illness, resulted in drastic changes in her children’s behaviour and performance in school.

“Although two of my sons have bursaries at private school (one is a full bursary and the other a 70 per cent bursary), I could not even maintain the small instalments as requested by the school,” she said.

“The school fees are now in arrears of approximately R36 000 and we have been issued with a final demand – if school fees are not paid in full, the bursary will be null and void and my kids may not return to this school in 2017.

“This will cause them to lose dear friendships and everything that they have worked so hard for to achieve.

“Cancer does not ask any questions – it happens and you just have to deal with it!”

The strain on Eileen, as a mother, is immense, as she wants to give every child the best, as any parent wishes to do.

“Instead, it only makes me feel as if I have failed them,” she said.

“Everything has become a constant struggle, so that even something as small as paper for a school project, is not affordable.

“In a period of three months, what was a normal stable family turned into a complete disaster, with a completely unknown future to myself and my kids.”

It’s almost a year later and Eileen is desperately trying to keep her family together, “as everything seems to be falling apart”.

“I am mentally exhausted, not knowing where the next bread or plate of food will come from, or how to just provide the basic necessities for my family, has left them feeling unworthy and neglected by me, and resulted in lower grades and an angry attitude towards me and each other.

“It is by the grace of God that we still have a roof over our head.”

Although at times strangers and some friends have blessed her family with food or contributed to Jordan’s needs, this is “mostly only to Jordan’s needs”.

“People tend to forget that my other kids have needs, too, so it comes across that only Jordan’s needs count and not theirs,” Eileen said.

“A son who had dreams of graduating has now become a father and a provider to his younger siblings.”

Due to Jordan’s tracheostomy and the high cost of special care pertaining to his needs, Eileen still finds herself in the same position with no options to find work where she would be able to have Jordan with her.

Not only is she not able to work, she has to organise fund-raisers to raise enough money to travel to Washington twice a year, for Jordan’s lifesaving medication, which is provided to them on a compassionate basis at this stage.

“This medicine is what will keep him alive and will have to be taken for the rest of his life,” said Eileen.

Jordan will not, currently, be able to attend a normal school, due to his special needs, which means that the family will have to get him a private tutor, and this will also have huge cost implications.

They have managed to hold two fund-raisers at the Barnyard Theatre in aid of Jordan’s Journey, which raised at least half of the funds needed for the last two trips to the United States.

Their latest trip, in August, was scheduled for a week, but they ended up having to stay for over a month, which depleted any funds they had.

After every trip, they have to start raising funds all over again.

“’Your child has cancer’ – these are words I never thought I would hear,” said Eileen.

“As parents, we want to protect our children and put their safety first, but cancer changes everything.

“I feel completely overwhelmed by the enormity of the situation. It is the most traumatising experience that my children and I have ever had to face.”

• Jordan has to be back in Washington for his treatment by February 8, 2017.

Join the fund-raiser at the Barnyard Theatre, Emperors Palace, on December 8, at 7.30pm, in aid of Jordan’s Journey.

For any information regarding Jordan’s illness, the fund-raiser or for donations to the Jordan’s Journey Trust, contact Eileen on 076 513 2010 or Wayne Keefer on 082 376 9050.