Family fights COVID and cancer at same time
Former Chateaugay Lake resident Dania Decosse uses her son Jonathan’s description of the coronavirus.
“I have a voice,” she told the Press-Republican, “and with my voice I want the whole world to know that COVID-19 is … a monster, and it is not to be taken lightly or casually.”
Dania’s husband Jeff, who she said was her rock and her foundation, tragically died of COVID-19 at UConn John Dempsey Hospital on Nov. 11.
“I never in my life thought I would live one day without my husband,” she said.
Their oldest son, Joshua, 20, who has Down syndrome, remained hospitalized there in critical condition Friday, continuing his own fight against the virus.
“They’re just trying to do every possible thing they can at UConn to keep him alive,” Dania said.
She herself is about halfway through chemotherapy treatments for colon cancer while still having to care for her three other children, Jonathan, Jacob and Jenna.
The family had recently moved from the North Country to Avon, Connecticut. Prayers and generosity for the Decosses have crossed state lines, and even international boundaries.
Members of the Avon community, including the Valley Community Baptist Church, have created a Facebook page for updates on Joshua which has shared a meal train for the family and a Sign Up Genius to help buy gift cards so Dania can go Christmas shopping for her kids.
Local resident Beth Rego Nichols, a friend of Dania’s, set up a GoFundMe page that has raised more than $48,000 of its $100,000 goal so far.
Pamela Blaise — whose daughter Taylor also has Down syndrome and went to prom with Joshua at Champlain Valley Educational Services BOCES — along with others reached out to media and local, state and federal politicians who could advocate hospitals on the Decosses’ behalf.
Dania said people from all over the world are praying for her family in Brazil, Ireland, Canada and France.
“It’s unbelievable how many people have love for my family, for me, everybody.
“We wouldn’t be where we are without those prayers.”
Jeff was found positive for COVID-19 through a rapid test on Oct. 20, Dania said. According to the GoFundMe page, everyone except Jonathan also had positive results.
When an ambulance came to take a pale, blue-lipped Jeff to the hospital Oct. 25, Dania thought the otherwise healthy 45-year-old would perhaps get some oxygen treatment and come home.
“I said goodbye, told him I loved him, that I would see him soon.”
But when he got to UConn hospital, Jeff called Dania and told her his oxygen level was 72%, well below the 95% considered normal, and that he wanted her to call 911 if Joshua was not breathing well.
A pulse oximeter she purchased at the pharmacy revealed Joshua’s levels were also in the 70s. Dania said she was hysterical.
“I was going to have to send my son with Down’s to a hospital he’s never been to before, completely alone.”
She dialed 911 and told Josh what was about to happen.
“I told him that he needed to be brave, that Mommy loved him very, very much and that he was going to go see Daddy.”
Dania collapsed in the driveway as the ambulance drove away with Joshua, so her other kids had to help her up.
Since Joshua’s oxygen levels were so low, and since he did not understand he had to wear a nasal cannula or a face mask, the hospital intubated him.
Dania constantly communicated with both Joshua and Jeff, who was in the room next door.
Jeff suddenly took a turn for the worse and had to be intubated.
“I never got to say goodbye to my husband because they never called me when they intubated him,” Dania said tearfully.
The day after Jeff’s death, Joshua self-extubated his tube by coughing it up. His doctor called Dania, and she was able to come in and spend four hours, with no tubes, talking to her son before his breathing became labored.
“I just told him how brave he was and that I loved him so much and he was going to be OK.”
Since then, Joshua has been through a lot: secondary infections, the challenge of building up the strength he needed to undergo a tracheostomy and a blood clot in his groin area.
A heparin drip helped resolve the clot, Dania said, but did not resolve ongoing oxygen saturation issues.
Pneumonia was found in Joshua’s right lung, so his doctor started him on two aggressive broad-spectrum antibiotics. That was not enough, but a new inhaled nitric oxide machine helped shoot his oxygen saturation up to 98%, Dania said.
They thought that would buy enough time to get Joshua over to Hartford Hospital and be a candidate for extracorporeal membrane oxygenation (ECMO) treatment, which helps add oxygen to the blood.
“Not losing hope”
Though Dania and Joshua’s doctor made all the contacts they could, they were told Hartford Hospital ultimately decided COVID-19 had done too much damage to Joshua’s lungs.
Another regional hospital’s ECMO team has also denied him admittance, according to a “Support the Decosse Family” Facebook post.
“Although the ECMO machine may initially prove beneficial, it won’t be something Joshua can get off of, and if he can’t get off of it, why bother putting him on it?” Dania explained.
“With all that being said, we are keeping him comfortable; we are not losing hope.”
Joshua’s doctor hopes that vancomycin and other antibiotics will help buy him enough time for the coronavirus to resolve.
“We’re hoping that this will give Joshua enough time to regain health,” Dania said. “But at the same time, we are staying aware of what the inevitable just may be.”
She said UConn hospital is giving Joshua wonderful care and additionally praised the nursing staff, who always tell her how much Jeff loved her and their kids.
“I can say that it gives me great comfort to know that my son is being given the best care he can be given. He is not in pain, he is not afraid, and his daddy is waiting for him if he does cross over to the other side.”
Support the Decosses
To donate to the GoFundMe campaign for the Decosse family: gofundme.com/f/the-decosse-family.
A meal train for Dania Decosse has been set up at tinyurl.com/y36u4ecj.
For updates on Joshua Decosse, go to the “Support the Decosse Family” Facebook page at tinyurl.com/y32gmkm3.