Mum left severely disfigured by efforts to treat three different types of cancer
A mother left severely disfigured by efforts to treat three different types of cancer, has vowed to keep fighting the disease for the sake of her children.
Debbie Caquias, from Aston, Birmingham, has not been able to eat or talk since 2015, after undergoing reconstructive surgery.
The 51-year-old, who has been battling cancer since 2007, said strangers stop and stare at her in the street when she is out with her daughters Gabby, 12, and Kenzie, 10.
However, the mum remains strong, supported by her husband, Sam, and their girls, who have such a bond they can understand the noises she makes when trying to communicate.
Speaking to Birmingham Live over email, she said: “Having been diagnosed with three separate cancers my doctors say I’m incredibly unlucky, I feel like a ticking time bomb just waiting for my next dance with the devil,” said Debbie, whose husband Sam is a trauma nurse and helps with her medication and dressings.
“It’s simple things I miss so much – smiling, talking, laughing and kissing my babies (although they kiss me often).”
Debbie, who moved to New York 15 years ago, was diagnosed with cancer in her tongue in 2007 and endured seven weeks of chemotherapy and radiotherapy with her head strapped to a bed.
The treatment was so extensive that it burnt her mouth and throat, making it impossible for her to eat. Instead, she had to be peg-fed through her stomach.
It was hoped this would be a temporary measure but, in September 2015, she had reconstructive surgery and her jaw bone disintegrated and her left eye was paralysed.
She hasn’t been able to eat or talk since.
On top of that, Debbie has also developed two separate, unrelated cancers in her bones and lymph nodes.
“I’m very much grieving the loss of function I’ve suffered,” she said.
“Learning to be stared at has been hard, my girls love to go out shopping with me they translate for me in stores and my oldest Gabby often tells people off for staring."
She added: “My husband and children are my front line supporters. My girls, although young, are amazing, they help clean my wounds, they won’t let me be down, their whole mantra is 'not YET moma' and we often talk about 'when moma can eat we will have…..'
“I have my moments when it all gets a bit much and I feel sorry for me but between how my dad taught me to pick myself up and fight and my girls, who have every hope for a great future, I can’t sit back and give up.
“I’m rare, people don’t generally survive my cancer and not twice so I feel blessed to be here.”
Doctors in New York have exhausted all their options for Debbie. They say that immunotherapy – a treatment that boosts the body’s natural immune system defences to fight cancer – could save her life.
But it will cost around $200,000 (£153,000) for a year of therapy.
Debbie said: “All of my current doctors recommended immunotherapy as a great option for me to get my own body working for me being able to fight off these attacks by this terrible disease.
“It involves weekly appointments at a speciality clinic in America. The cost can run to $200,000 for a year of therapy and there is no way we can afford this."
Debbie said her third cancer was discovered accidentally during surgery.
She added: "It hadn’t shown up on any of my scans. They haven’t been able to identify where this cancer originated so we are running blind as to what to look out for – immunotherapy, if it works, could give me a chance to fight this before I’m fighting for my life again.
“On top of immune therapy, I suffered nerve damage in the right side of my face and neck during my first surgery and have been searching for a specialist willing to help me repair this damage.
“It is incredibly hard to put myself out there like this feeling so vulnerable.
“I refuse to give up hope and think, if I can find the right person, we can fix this.”
Debbie’s friends and family are determined to raise funds for the treatment she desperately needs, and are hoping a cosmetic surgeon will see her story and come forward with the skills to be able to reconstruct her face and give Debbie her smile back.
Her sister Jayne Yarrington lives in Tamworth and goes out to support Debbie as much as she can.
She has got together with Debbie’s friends Helen Stehlik and Carolynn Rose to launch Debbie’s Defenders fundraising team, and says they are ‘in awe’ of her bravery.
“It has been so hard but Debbie is still so positive and continues to fight,” said Jayne, 52, who works at Birmingham Children’s Hospital.
“Debbie can’t talk, she just makes noises but the girls can understand what she’s saying, whether she wants them to clean their rooms or do their homework. It’s amazing to watch. They are such a support to her, they are why she fights.
“We’re fundraising to enable her to have immunotherapy treatment that could save her life."
The team have set up a GoFundMe page and have already raised more than $13,000 (£10,000) in two weeks.
Jayne added: “She deserves this, but we just don’t have the money to pay for it.
“Debbie’s friends Helen and Carolynn have been amazing, as has Sam. It’s tough on him as he’s the only wage earner and he has to try to keep everything normal and go to work. It’s a godsend that he’s a trauma nurse as he’s able to change Debbie’s dressings and administer her medication.”
Her friend Helen Stehlik, in New York, said: “Debbie is the bravest, most selfless, positive, kind, caring person we know – always concerned about others above herself. She continues to fight and be positive that at least she is alive. We need to help her with this fight.
“Her daughters will never hear their mother’s beautiful voice, as she will never speak again.
“The last surgery removed most of her tongue down to her oesophagus, plus most of her cheek. She can no longer blink or smile due to nerve damage from the surgeries.
“When she is able to muster the courage and strength to go out, she endures people staring at her. That is hard on Debbie, but even harder on her daughters. Sadly, people can be rude and thoughtless in their actions."
She added: “She deserves the very best treatment available to not only help her fight the cancer but also to rebuild her beautiful face and enable her to smile, talk and do all the things we take for granted.
“Debbie has had an amazing team of doctors at Montefiore Medical Center [in New York] that have been supportive to her plight and have done the best they know how for her.
"However, we are at a point where Debbie needs highly specialized skilled reconstruction surgeons and alternative treatments to continue this fight.
“We hope that someone with the skills and experience dealing with traumatic facial reconstruction may come forward to help her surgically repair what the cancer has taken from her … her smile, her face, her confidence.”
The team are also hoping to help cover many of the expenses that go along with the extreme level of care Debbie needs – surgeries, hospital co-pays nursing care and more.
Sam has used up all of his annual leave and is trying not to take unpaid days off in a bid to keep some normality for the children.
Jayne added: “I’ve talked to Debbie about coming back to the UK but she’s established her life in America, it’s her home. I think she’s too ill to fly anyway. I feel we’re stuck between a rock and a hard place.
“We communicate over Facetime, and she types on her tablet so the messages come up.
“She must be in a lot of pain but she’s so good with her pain that if she ever says she’s in pain, you know she really is.
“I cannot even begin to imagine what it feels like. I am in awe of her.”
Debbie added: “My friends and family have blown me away with this campaign. We are very humbled and touched by the outpouring of support.
“My greatest wish is to be around for my daughters as they are growing up and at some point, hopefully, be able to look in a mirror again.”
Every day, Sam wakes Debbie up at 5.30am to give her thyroid medicine so that when she gets up at 7am she can plug herself in for food.
It’s a process that takes around one-and-a-half hours six times a day. She says she always feels hungry.
“I have everything nutritional through a peg tube, it’s been almost four years since I ate or drank anything,” she said.
“For my emotional self I still make a cup of tea and use my Gtube – if I’m really lucky I sometimes get the taste.
“I’m incredibly blessed my husband is a trauma nurse and also has amazing coworkers and friends who have been so supportive whenever we need them.
“My marriage is stronger as a result of all we have been through.”
Debbie loves spending time with her girls, volunteering and being involved in community causes and events, such as the Parent Support Team at her girls martial arts school. One of her main goals is to be able to watch her girls test for their Black Belts in Taekwondo in July.
She set up a cookie baking company, selling cookies for people’s birthdays, even though she couldn’t taste them herself.
She also volunteers and makes quilts for the KindQuilts organization that distributes quilts to sick children.
Her strength, she says, comes from her dad, who sadly died from oesophagus cancer in 2001.
“I know I get a lot of my strength from my dad,” said Debbie.
“I was raised by an amazing man who even after being diagnosed with untreatable oesophagus cancer had the theme song “always look on the bright side of life”.
“I know he would not allow me to wallow, it solves nothing.”
Debbie warned that oral cancer is on the increase and she believes there is not enough information available for people to take action quickly.
“We need to raise awareness for people not to ignore a sore they have or a strange feeling in their throat,” she said.
“Too many people wait too long before getting checked by a doctor.
“If we can save one person from leaving it too late I’d love that.”
To donate towards Debbie's GoFundMe page, click here .
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