Boy, 10, needs US$250,000 for bone cancer surgery

JANELLE DE SOUZA

Tenisha Elder’s nightmare started in March when what started out as a fracture in her son’s upper right arm, turned out to be cancer.

She is now on a quest to raise US$250,000 (TT$1.7 million) for her ten-year-old son Rhenako Beard to have surgery in the United States.

Earlier this year, Rhenako fell down at his school, Rose Hill RC Primary, and was taken to a private hospital with a pain in his arm. Elder, who lives with her family in El Socorro, said she and Rhenako’s father were told he had a pathological fracture in the upper arm bone. One website defines a pathological fracture as one that occurs when a bone breaks in an area that was already weakened by another disease.

Elder said they could not afford to treat Rhenako at the private hospital so they were sent to the Eric Williams Medical Sciences Complex, Mt Hope. There, they were told slings were used instead of casts with such fractures and that he would have to join the hospital’s orthopaedic clinic.

On May 31, she noticed his shoulder was red and swollen so took him back to the hospital. An X-ray was taken and she was told it was just soft tissue swelling and it was nothing to be worried about. However, Rhenako was having a very painful time and he could not raise his arm.

“He had clinic every other Monday and I continued carrying him. Every time I would tell them, ‘I don’t like how this thing looking,’ and they would take an X-ray but they could not say what it was.”

Elder said in the last week of June, she took Rhenako to a private hospital and the doctor told her to carry him back to Eric Williams for an MRI and a biopsy. Rhenako was in the hospital for two weeks while they conducted various tests. He was discharged and two days later on July 14, they were informed that he had cancer, specifically osteosarcoma.

“When they told us we had to come in, they told us Rhenako has a very malignant tumour and this type of cancer is usually treated by chemotherapy, surgery, and more chemo. So I was like, ‘What kind of surgery? To cut the hand and take off the tumour?’ The doctor was like, ‘No. Remove the whole arm.’”

However, Elder said she could not do that to her child. She therefore did some research and decided that lymph removal surgery would be a better option for her son. She contacted Boston Children’s Hospital and received an estimate for US$250,000. Undaunted by the staggering sum, Elder set about hosting events to raise the money, and her latest effort was a sports day fundraiser at Nelson Mandela Park, St Clair on November 4.

The determined mother said if the surgery was not done she would have no choice but to allow the doctors to cut off Rhenako’s arm.

“All over the country the doctors are saying to amputate because that’s all they learn to do when it comes to bone cancer. But I say that there is a surgery, lymph salvage surgery. I followed up on the story and 78 per cent of people survive. The mind-set and the faith I have, my son will survive.”

“Some people would be like, ‘She stubborn, she wouldn’t cut off the child hand although his life depends on it.’ But I know parents who amputate and the child still died, and soon after the surgery too. If they could guarantee that when they cut off the hand his life would be saved then yes! But all they are saying is words like, ‘It’s the safest way to avoid’ or ‘most likely’ and that’s not good enough.”

Until the surgery, however, she allowed him to start chemotherapy... but not right away.

She said Rhenako’s birthday was on July 26 so she waited until July 27 to take him for treatment because she did not want him to be sick but to enjoy his birthday.

She added, before that, she did not know how to tell him what was happening to him but she realised she would have to say something when he saw the children on the ward with bald heads.

Rhenako’s hair, she said, dropped out after the first round of chemotherapy. Also, because his immune system was weakened by the chemo, she was told not to send him back to school so he had not attended since the new school year started in September.

“After chemo I realised it would take a week before he would start back to talk. And it’s not that he can’t but he refuses to, he was distant. He would watch you like he annoyed that you’re talking to him.”

She said Rhenako usually spent his days at home watching television or, when he felt better, at the salon where she worked. She said she would sometimes take him up on his reading but that she did not force him to do schoolwork.

“Although I know his education is important I find he is already going through so much that I don’t pressure him. I feel if I was going through something like that I would just be in a room lock up and not want to talk to anybody so I try not to pressure him too much.”

However, Rhenako said he missed school, where his favourite subject was Mathematics, and wanted to return. He said he found staying at home to be boring and preferred to be playing with his friends.

He added that he had two best friends, one of whom was Richard Joseph, the classmate who wrote a letter to Newsday expressing his feelings about his friend’s sickness and asking people to support the fundraising sports day.

Rhenako said he was “not feeling good” about being sick as he did not like staying home. He also said he did not like being bald but he felt good that people cared about him. Asked if he was worried about having cancer he said, “Yeah.” Asked why, he said he did not want to cut off his arm because he loved playing football and he wanted to be a national footballer.

Elder said she did not think he understood what was happening to him but that he was just frustrated because he wanted to go back to school. She said she asked her son if he wanted her to cut off her hair to support him. However Beard was adamant and told this reporter, “She want to cut off she hair too. I don’t want she cut off she hair. She go look like a mad woman.”

Principal of Rose Hill Charlene Quamina also wrote a letter, which was published in the Catholic News, saying that the school was praying for Rhenako and that all his classmates were writing and talking about their emotions.

The letter also mentioned the fundraiser that was held on November 4, and asked that anyone wishing to make a donation towards Rhenako’s treatment do so at the Eastern Credit Union account 90275914.