The Sinclair household is full of excitement as the holidays near. Several Christmas trees stand in the house, one full of ornaments with family photos from fun events.
Addison Sinclair’s Christmas wish list for Santa is typical of a 7-year-old: Juno the interactive elephant and FurReal Cubby, The Curious Bear.
Her parents’ list has but one wish: for Addi to be free of the cancer that keeps invading her lungs.
The Summerport family — parents Mark and Kara, Addi and her 8-year-old brother, William — is ready for some normalcy. They have been dealing with cancer, rhabdomyosarcoma, for more than half of Addi’s life.
UNDER THE KNIFE
Addi has been through 11 surgeries, seven of them to remove tumors. After the cancer was first discovered in her abdomen at the age of 3, she has endured a 54-week treatment protocol, upper right lung lobectomy, tumor resection and four weeks of proton therapy. The scans appeared to be clear, and doctors said there was “no evidence of disease.”
But less than a year later, doctors found a tumor on her lungs, so Addi started a relapse protocol and radiation. Another year, another spot on her lung, another surgery. This year alone, Addi has had three more recurrences of the tumors and three more surgeries.
“She’s been at this for so long, and she doesn’t get that she’s sick,” Kara Sinclair said. “We don’t talk about it. It’s just life. Her port had to come out — she had an infection back in June or July — so, in her mind, her port came out so it’s over.”
JUST BEING A KID
Addi loves watching the movie “Frozen II,” reading Fancy Nancy and Pete the Cat books, coloring and playing Minecraft with her brother. Her parents call her spunky and dramatic and say she has a flair for making crafts and singing songs whether or not she’s heard them before.
She adores her older brother, and when she receives a token at the hospital after being subjected to another needle, she always asks for a second one for her brother. She just joined a Daisy scout troop.
She is homeschooled because she all her doctor’s appointments keep her from regularly attending school. She has lost her hair three times because of treatments. Recently, she got candy stuck in her hair, and her parents were glad she finally had enough hair for that to happen.
“We’ll take that,” Mark Sinclair said of the incident.
They have spent hours researching alternative treatments to keep their daughter from enduring hardcore chemotherapy sessions.
“Your body can only take so much,” Mark Sinclair said.
“You want quality of life,” Kara Sinclair said. “You see on TV they keep pumping these kids and pumping these kids and then send them home and say, ‘Enjoy your time, what time you have.’ We want to write a different story.”
The family has heard phrases such as “prognosis is 5% to 8%” and “keep her comfortable with palliative care” — but they refuse to give up fighting for their daughter’s life.
Despite the doctors’ diagnoses, Addi has as much energy as a healthy child, dancing, swimming and running around the playground. Medical professionals always are amazed to see Addi, Kara Sinclair said. Addi’s parents attribute it to some of the alternative treatments they are using.
“We want to be cautious,” Kara Sinclair said. “We know she probably has to be on something for a while, but we don’t want her to be on this hardcore chemo. There are different things we want to do.”
A FEW GOOD MICE
Addi is taking a low-dose oral chemo, and she is thriving, Mark Sinclair said. She is taking multiple supplements — costing hundreds of dollars each month — to increase the effectiveness of the radiation she receives, and she takes enzymes and probiotics and receives medical cannabis.
The Sinclairs are counting on a group of mice to lead them to a cure. The live tumor will be implanted into 10 mice, and each will receive a different cancer treatment. The family’s hope is that one of the mice will have a positive response, and, as a result, so will Addi, Kara Sinclair said.
The cost is high — the initial agreement is $3,000, and each mouse costs about $5,000.
“Once you go off the protocol, nothing’s covered,” she said. “We did (the) genetic sequencing three times and then find out it’s not covered by insurance. That was about $30,000.”
“You want quality of life. You see on TV they keep pumping these kids … and then send them home and say, ‘Enjoy your time, what time you have.’ We want to write a different story.”
— Kara Sinclair, Addison’s mother
The Sinclairs also are working with a naturopathic oncologist.
These options are expensive, and they aren’t covered by insurance, Kara Sinclair said.
So far, a fundraising page set up by the family has garnered about $23,000.
“We are optimistic and hopeful that she will continue to beat the odds,” Kara Sinclair said. “Unfortunately, for pediatric cancer, there’s not a lot of research; there’s not a lot of data out there.”
She has had little success in finding other families facing similar circumstances. There are few 7-year-olds who have recurring rhabdomyosarcoma that started in the abdomen, she said.
Thanksgiving was spent with family in Cleveland. While there, they visited the Cleveland Clinic and met with a radiation team. The pathology reports came back with positive margins; surgeons had not removed all of the tumor.
“With … the aggressive nature of the cancer, we made the difficult decision to start targeted radiation,” Kara Sinclair wrote on the fundraising page the family set up. “We will be doing 25 sessions of proton therapy to the area that has been problematic over the last five years and hope to gain localized control. This was a difficult decision to make. We are scared, nervous, hesitant and mad that this disease keeps interrupting our lives.”
Addi’s numbers currently are within the safe range, but she still will spend every day of her Christmas break getting treatments.
On the GoFundMe page, an emotional Kara Sinclair wrote: “This is another holiday interrupted with uncertainty and appointments … every day of break.”
After having an online appointment with the Cleveland Clinic oncologist last week, she wrote an exhaustive summary of their conversation: “He mentioned chemos and medicines to combat the radiation and chemo side effects, and more chemos to take after the radiation, and meeting with a reconstructive surgeon to repair the effects of the radiation, and then chemos to take if the chemos he mentioned don’t work. …
“It’s like Groundhog Day,” she wrote. “We are back in this hospital world that we are thankful for but so ready to be moving onto the next phase of life.”