Julian and his Family’s Trial with P.I.
By: Dana Ewachow
Gina shows me a scrapbook she’s made of her son Julian when he was two years old. This scrapbook is different from the average family album; the photos are adjacent to long lists of medications. In the photos, Julian is smiling sweetly, his cheeks puffy from a reaction to the drugs. The scrapbook was made to commemorate his battle with primary immunodeficiency. Gina admits that she did it for Julian, who is now eight years old. “He has the right to know,” she says. “Look at where he’s been. Look at where he’s at now.”
When Julian was 18 months old he was diagnosed with the rare immune condition CGD (Chronic Granulomatous Disease). He was admitted to Sick Kids Hospital for seven months to conduct a multitude of tests. After a tense two-hour meeting with a board of doctors, it was decided that he would be set up for a bone marrow transplant. His then seven-year old sister, Alyssa, was a complete match. This was a lucky break for the family, because there is smaller chance of having complications with a transplant with a sibling donor than with an “outside” donor. On September 8th, the day of the transplant, Gina found herself running between the 2nd floor to see Alyssa and the 4th to see Julian.
After the transplant, there were bumps in the road. In 2011, Julian got measles, even after being vaccinated. He was diagnosed with bronchiolitis obliterans, which is a non-reversible obstructive lung disease. In 2012, it seemed like Julian would be diagnosed with plasmacytoma in the tongue, which is a rare form of cancer which requires radiation treatment. Further testing at Princess Margaret Hospital found that the diagnoses was negative. He also had graph vs. host disease, a skin condition known as Lichen Sclerosis, and narrowly avoided having ulcerative colitis.
However, thanks to the transplant, Julian has a fully independent functioning immune system. After his third birthday, he could finally be exposed to others. Now he takes puffers, Synthroid for his thyroid, calcium for his bones and vitamin D. Other than that, Gina tells me his life is like any other kid’s. “He’s full of energy. He can outrun kids.”
Something that often gets brushed off when talking about sick children is the experience of the parent. We focus on the trials that the child endures, which are without a doubt difficult and unfair, but we seldom focus on the trials of the ones that support the child. Julian’s siblings also had a rough time coping with their baby brother’s illness. Alyssa would cry at school, while Adrian would wait until after school to sob in his room. They would call Gina every day when she was in hospital with Julian. Both of them missed their brother and their mom, and just wanted them to come home. The whole family sought counseling to help them through their ordeal. Later on, Julian’s siblings’ emotional strength and patience was rewarded: Alyssa was given a certificate and bravery beads for being a donor match, and Adrian was given the same for being supportive of his brother.
Gina also fought a battle of her own. “It felt like I was basically going through it alone,” she said. She only went home on weekends. She was constantly answering phone calls from family and friends. Sometimes when she was free, she would go to the hospital’s chapel to go be angry at God. “They say God gives you what you can handle. I didn’t need it. Julian didn’t need it – he was only two.”
Gina’s mother took a leave of absence from work to be with Gina at the hospital. Gina’s mother-in-law was taking care of the house, while Julian was in isolation for several weeks. Gina’s sisters helped a lot, especially when it came to keeping Julian’s siblings distracted. Even with the family support, Gina admitted the whole process was exhausting. “It takes a toll on you,” she said, referring to a day she was hospitalized for an anxiety attack when Julian was being tested for plasmacytoma.
Gina and her family always try to find a way to give back to those who helped them through this trying time. Her aunt, Dana Vena, has always thrown Ciao Bella Dance Studio’s “Dancing for the Children” charity events. The events regularly donate proceeds to Sick Kids hospital. Gina approached Dana to add Immunodeficiency Canada for the 2015 event for Julian’s sake. Gina’s family set up a fund with Immunodeficiency Canada, and her sister requested that in lieu of birthday gifts, she asked for donations. Gina and her children throw garage sales and use the profits to give back to Sick Kids and around Christmas-time she brought two bags of toys to the hospital’s Immunology Department. Gina is hoping to give back in a bigger way. She’s currently trying to organize a vendor show for the summer to raise money for immunology. It’s a work in progress, but she assures me, “the wheels are turning.”