WILMINGTON – After battling cancer for two years, a local boy received a play set from family and friends for his fourth birthday. It was a surprise to both RJ Roush, 4, of Wilmington, and his parents.
“My husband and I had no clue,” said Allison Roush, RJ’s mother. “Several friends of ours (and) … family got together and pitched in.”
The family was surprised, she said, because they didn’t realize how many people RJ had affected in his short life.
“It makes you realize how many hearts he’s literally stolen,” she said.
RJ was diagnosed with neuroblastoma, which is cancer of the adrenal glands, in 2013. Also that year, one of his sisters was diagnosed with ganglioneuroma, a benign tumor in the adrenal glands.
Even though he was diagnosed with cancer, he is still running around like a 2-year-old.
His sister Hannah, now 15, went in for an unrelated surgery and doctors found the tumors, Roush said. Hannah also has a rare genetic disorder, Congenital Central Hypoventilation Syndrome, which affects breathing.
Roush said her daughter was diagnosed with CCHS when she was 2, but the family did not know about the genetic link until 2012.
CCHS could be the potential cause of Sudden Infant Death Syndrome, Roush said, because CCHS raises the carbon dioxide levels in children.
“Not knowing about this, a lot of parents don’t realize that this could be why their child died, because it basically raises their (carbon dioxide) levels and sometimes they don’t wake up from it,” she said.
Once doctors found out about the genetic link in Hannah, they decided to test Allison, who tested positive.
“Because I have it, they proceeded to test my oldest (child) and my son,” she said. “We found out … only my younger two (children) have it.”
After doctors found out RJ had the gene, they did an adrenal ultrasound and found two tumors on his left adrenal gland, one on his right adrenal gland and one on his aortic cal lymph node.
Surgery in January 2014
The tumors were found in December 2013, Roush said, and RJ had surgery the following January.
During the surgery, doctors removed RJ’s left adrenal gland and the tumor. They also took a biopsy of his right adrenal gland. The biopsy confirmed RJ had stage 1 neuroblastoma on his right adrenal gland and stage 2 on his left adrenal gland.
“Because he had it on both adrenal glands and he has this genetic disorder, it’s consider two separate tumors,” Roush said. “If he did not have this genetic disorder, it would have been stage 4 (neuroblastoma).”
The genetic disorder RJ has, Roush said, makes tumors very common, which is why the cancer was not stage 4. Sometimes the tumors that occur because of this genetic disorder are cancerous, while others are not.
A bone marrow test was done to make sure the cancer was not in RJ’s blood, and it was not, Roush said.
After the bone marrow test, chemotherapy started, which was rough on the whole family, she said.
“I don’t think anyone expects their child to have to go through that,” she said.
The chemotherapy was so hard on RJ that he had to have a feeding tube put through his nose because he was not eating or drinking.
RJ went through two rounds of chemotherapy. His immune system was lowered after both rounds due to the chemo, but after the second round, RJ had to go to the Intensive Care Unit, where he was diagnosed with Respiratory Syncytial Virus.
RSV causes respiratory tract infections. To treat it, RJ was placed on a Bilevel Positive Airway Pressure machine. He was on the BiPAP machine 24/7 while in the ICU. Also, doctors said RJ had CCHS.
Close to the end of his month-long stay at the hospital, doctors found mononucleosis in RJ’s system.
“It almost killed him,” Roush said.
Once doctors found out RJ had mononucleosis, they stopped chemotherapy and sent him home at the end of the month.
RJ returned to the hospital a month later for surgery to remove the tumor off his right adrenal gland. The tumor was removed and the adrenal gland was saved, Roush said.
Before leaving the hospital again, doctors sat down with RJ’s parents and suggested RJ get a tracheostomy tube. A trach, as it is called, is a tube that is inserted into neck to help a person breathe.
When doctors told Roush and her husband their son should get a tracheostomy tube, they were not surprised.
“There was always a possibility that any child with CCHS could be trached,” she said.
RJ went home and then returned a month later to get the tracheostomy tube inserted and was in the hospital for almost two months again.
Trip to Disney World
Before getting his tracheostomy tube, though, Make-a-Wish sent the Roushes to Disney World.
Joining RJ, his sisters and his parents was Roush’s father-in-law, who was diagnosed with stage 4 pancreatic cancer around the same time as RJ was diagnosed with neuroblastoma, Roush said.
“It gave him something nice (to do),” she said of her father-in-law joining them on the trip.
Dealing with tracheostomy
The trip happened right before RJ’s tracheostomy tube was put in so RJ could have one “normal adventure” before his life changed, Roush said.
After the procedure, Roush said her “world (was) turned upside down.”
She and her husband had to learn how to insert and take out the trach. They also learned how to keep the site clean and what supplies are needed at all times, Roush said.
“You can’t just get up and leave (to go out),” she said.
The decision to put a tracheostomy tube in RJ was a difficult decision to make, but Roush said it was the right decision to make because they can take care of RJ at home.
Having RJ at home and not at a hospital can have its downsides though when it comes to money. Someone who is trained on how to work with a tracheostomy tube must be with RJ at all times, even at night while he is sleeping.
“I’ve not been able to go back to work,” Roush said.
She said they are currently looking for a night nurse to help take care of RJ.
RJ has been in remission for a year, Roush said, and is attending preschool, which he loves. Even though RJ’s cancer is in remission, he still has to go to the hospital for an MRI every three to six months. One of the most important things the Roushes learned is that RJ’s cancer is not genetic.
Roush said she takes life day by day an often asks herself why the cancer happened to her child.
“Never in my wildest dreams would I have thought … we were going to find out he had cancer,” she said.
Nothing seems to stop RJ, though, Roush said.
“He’s still buck wild,” she said.
Reach Dylanne Petros at 937-382-2574, ext. 2514 or on Twitter @DylannePetros.