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| Photo courtesy of Karyn Pinette Zyen Provost, 3, loves to draw, go for rides on Pawpaw’s tractor, build things with blocks and to ride both his bike and car. Plus, he loves to dance, sing and play the guitar or anything that he can use as a guitar such as a fly whacker or even an old-fashioned bread toaster. |
By Donna DeLong
Special to the Aroostook Republican
Zyen Provost turned 3 years old the day he was admitted into Children’s Hospital Boston (CHB) on May 22, 2012. This month The Cubby thrift store in Caribou and Presque Isle made a donation on behalf of the youngster as part of their ongoing Hero of the Month campaign.
At 10 and a half months old Zyen began to show signs that something was seriously wrong. He spiked a fever of 103.8 and was taken by his great-grandmother, Kayrn Pinette to the emergency room. Thankfully the doctor checked him for RSV, a respiratory virus and results came back positive. He was admitted into the hospital.
After further testing they found that Zyen had an ear infection and pneumonia as well as an enlarged liver and spleen. Little Zyen would end up in the hospital a day or two after he would finish his antibiotic regimen because his body did not have the strength to fight off infection. After two months of going back and forth from the hospital his neutrophils fell to zero, meaning that his body showed no sign of a functioning immune system.
They transported him to Eastern Maine Medical Center (EMMC) where the doctors were stumped as to what little Zyen’s problem was. They ran a multitude of tests from leukemia to an MRI to a bone marrow aspiration. Being the middle of June many doctors were gone due to vacations so they sent him to Maine Medical Center in Portland (MMC) where they preformed a liver biopsy.
He was sent back to EMMC and then back to MMC. Everyone was scratching their heads as to what to do next. Every time he landed in a hospital he would go through the testing routine. Finally, on June 30, 2010, they diagnosed him with an immune deficiency. Even though it was the wrong diagnosis, thankfully the treatment was the same. He received antibodies through IV every three weeks, called IVIG treatments. He spent most of the day in the hospital for the treatments.
In January of 2012, Zyen was sent to Boston and was correctly diagnosed with a rare and potentially fatal disease called X-linked lymphoprolifative (XLP) or Duncan’s syndrome.
Karyn Pinette and Ryan Pinette, Zyen’s great-grandparents are his full-time caregivers and have stayed by his side through his extremely rough young life. On May 23, 2012, Zyen started chemotherapy treatments at CBH, six hours for four days and then three days of a different chemotherapy treatment which took six and a half hours to enter his system. On May 31 Zyen received his bone marrow transplant and was released on June 27 from CHB and went to the Ronald McDonald House in Boston where there are separate, special apartments just for bone marrow patients and their families.
“Zyen cannot go outside without a mask on his little face because of his compromised immune system because of the chance that he may become ill. He will stay in Boston until Sept. 8, 2012. For the next nine months he will go to EMMC for one week and then to Dana Farber Cancer Specialists in Boston for one week to keep track of his progress and to make sure that he is not rejecting his transplant,” said Karyn Pinette.
Patients are watched for one year, possibly two to watch their progress and to make sure that the transplant is not rejected. Little Zyen loves his great-grandfather, Ryan Pinette or as Zyen calls him “Pawpaw” and can’t wait to be back home with him.
“He is our little angel and has brought such joy into our lives. He is happy, but shows his temper sometimes because of the hormones that he has to take. It is a small price to pay to help our little trooper on his road to recovery,” said Karyn Pinette.
If you would like to make a donation to Zyen and his family to help cover all the traveling and miscellaneous expenses of his treatment, you can make a deposit at the County Federal Credit Union in Zyen’s name.
