Newlywed mum struck by cancer speaks of family’s uncertain future
A newlywed mother-of-two has spoken of her uncertainty for her family’s future after being struck with a rare and unpredictable cancer.
And she has expressed gratitude to the people who have stepped forward and offered support to herself and her family.
Friends of Kamala Smith plan to launch an appeal to help her family medical cover bills for her illness, which Mrs Smith thought she’d conquered, only to learn early this year that the cancer had spread to her spine.
“I thought I was free and clear. I went two years without any incidents, and I thought we’d caught everything,” said the 31-year-old. She told The Royal Gazette of her shock at discovering that the disease had aggressively returned.
With her family already struggling to cover bills, Mrs Smith said she didn’t know how much longer they would be able to keep a roof over their heads.
Even as they grapple with her ongoing treatment, which includes finding drugs to control her pain, Mrs Smith was moved to tears by the generosity of the people who came forward to help.
“I never felt like the world owes me,” she said from her bed in King Edward VII Memorial Hospital. “I’m just thankful for another day. But for people who don’t know me to open their hands and say ‘Here you go’ — that’s amazing to me.”
The Smiths currently have a home thanks to the kindness of their landlord.
“Our landlord right now is a good friend, and she’s letting us stay rent-free,” she said. “I know that’s very hard on her, and I know we won’t be able to do that for much longer. I don’t know where we’re going to go.”
Mrs Smith, who last November married North Village footballer Nakia Smith, counted herself lucky to own her own home, but said that after she was made redundant from HSBC Bank, the mortgage doubled. They had to move out and rent the house to make ends meet.
She’s already had to turn to the Lady Cubitt Compassionate Association for help once before in her life, after having to be airlifted for the birth of her first son. “I had to leave the Island because it was discovered that I had a condition called Factor X Deficiency. I almost died,” Mrs Smith said. “They jumped in to help, and I am totally grateful for their help.”
The latest crisis has exhausted her ten days’ sick leave and 15 days’ vacation time from her job, which offers basic health insurance but no long-term illness policy.
Unable to work since December, Mrs Smith said: “We’ve been dealing with it all by ourselves, and it’s hard on my husband. He doesn’t have the most high-paying job.”
Her illness first manifested with abdominal pains when she was 18.
“My gynaecologist at the time said that I only had a fibroid [a uterine tumour, usually benign] that was very small, and she didn’t think it would be causing me pain. She chalked it up to pelvic inflammatory disease. I’ve been diagnosed with everything. But it wasn’t any of them.”
A decade later, however, the pain became intense and spread to her joints. Mrs Smith insisted on surgery, and her doctor scheduled an appointment to have the fibroid removed.
She recalled: “I’d had the surgery and about a week later the pathology report came back. She called me and told me to come in, and that was when I knew it was something bad. I didn’t think anything horrendous, but doctors don’t usually tell you to come in to their office.
“She called me in, and said ‘I don’t know how to tell you this, but I’m just going to be straight up — the report has come back, and what we thought was a fibroid was actually a cancerous tumour’.”
Leiomyosarcoma, or LMS, is a cancer of the smooth muscle and connective tissues. Mrs Smith was 29 years old.
Doctors at Boston’s Brigham and Women’s Hospital and the Dana Farber Cancer Institute removed her uterus, and Mrs Smith appeared to be clear during follow-up visits.
“It wasn’t until September of 2013 that I started noticing something else,” she said. “I’d been seeing a pain doctor here because after my hysterectomy I had continuous chronic abdominal pain. But then my feet were going numb. I’d hunch over, I couldn’t walk, and then it would go away. I got married on November 10, and I made a joke to my bridesmaids that I hoped I could walk down the aisle.”
She was initially treated for fibromyalgia. By Christmas, however, the shooting pains through her body had become unbearable, and Mrs Smith was confined to bed.
“I demanded a scan,” she said. “That was January 6. A week went by and nobody called me. My GP referred me to my gynaecologist — my husband had to carry me into these places. He didn’t have the MRI and had to call in for it, and when he came back, I saw his face, and I just knew.”
It was only then that she learned of the metastatic leiomyosarcoma to my spine.
“I couldn’t believe it,” she said. “A whole week had gone by and they hadn’t even told me.”
She added: “I was admitted to the hospital. I had to spend a whole day screaming and crying before somebody came to help me. After two days I was air ambulanced to Brigham Women’s Hospital. I got a biopsy and they confirmed metastatic leiomyosarcoma in my back.
“They did radiation in the hopes of slowing down its growth. But I don’t know how long that treatment will last. Once it does start regrowing, or if I get a new metastatic cancer, then they have no choice but to do chemotherapy.”
Mrs Smith continued: “My husband acts strong. But I know him. He’s devastated. He just lost his mom to something very similar. It’s hitting very close to home for him.”
Upon returning home, Mrs Smith took the opportunity to have a frank talk with her sons Kenori Simons, aged nine, and six-year-old Nakai Smith.
“They cried. It was important to have that talk. I told them, ‘Your mom isn’t going tomorrow or next week. But eventually I am going to be your angel’. That was a hard conversation, but I’m glad we had it.”
However, the assistance of friend Tiffany Swainson — plus the offers of help from kind-hearted strangers — have also brought the family hope.
After turning to Facebook to find grocery vouchers to help her husband, Mrs Smith said: “The responses I got really touched me. I was getting messages from people saying ‘Tell your husband to come to me’. A lot of these people didn’t even know me.”
For now, as well as trying to control her pain, Mrs Smith must find the means to return to the US for more checkups.
“When I found out about the cancer, I was crying for days. I didn’t know if it was going to stop,” she said. “But I also found a spiritual side of my life. Whenever I’m feeling low, I pick up the Bible. I don’t even know what to read. I just go looking and I will find something to pick my spirits up.”