Hayley Desjardins: The Most Well Known Teen in Saco

Junior, Hayley Desjardins, was five years old when she was first diagnosed with Aplastic Anemia. She was in Jackman, Maine celebrating Easter with her family, only a few weeks after losing her grandfather. There are only 300-600 cases of Aplastic Anemia in the U.S. each year, making it a very rare disease.

“I had been getting these really big, like big purple bruises all over my back…and then one morning I had a bloody nose which was really weird because I’d never had a bloody nose before. And so we went to the doctor to get it checked out…and I’d had a fever I think and they just knew something was wrong,” said Hayley.

For a child, getting blood work done is a traumatic experience. Hayley explained that she didn’t know what was happening and she only remembers screaming and crying. The healthcare center sent the blood work to Portland for more testing and she was transported by ambulance to the hospital.

“I just remember crying and asking my mom, ‘Why are they putting a needle in me? Why are they poking me? I didn’t do anything.’… there was like four different nurses in there and they were all trying to hold me still while I was getting my blood done, and I just remember being terrified because I did not know what was happening,” said Hayley.

Aplastic anemia is a condition that occurs when your body stops producing enough new blood cells. Hayley was first able to get rid of the blood disease through medication. But by surprise, it came back five years later. At this point, Hayley was in seventh grade and was forced to leave her school, friends, and her normal life. This time, the medicine didn’t get rid of the disease, and she had to go through chemotherapy and later, a bone marrow transplant.

“It was just so difficult to see all my friends living normal lives and then I had to be sitting here in a hospital taking 40 different medications a day, and having nurses come in and six different doctors come and talked to me in a day. I just wished it was normal for me but it’s nothing I could’ve changed,” said Hayley

As a young girl, hair is very important and can allow girls to feel unique and beautiful. Hayley, as a middle school girl, knew that she would lose her hair to chemotherapy, so rather than letting it fall out on its own, she made the decision to cut her hair off. With her long hair that went down to her lower back now completely gone, she said she felt that the last shred she had of her normal self before becoming sick, was gone. That loss was awful.

“I wouldn’t let anyone come visit me…it was so hard because I felt like I was ugly all the time even though obviously I was sick and it wasn’t me, it was the sickness that was making me feel that way and look that way, but I would not let certain people come and visit me…I never took pictures of myself anymore. It was just a really dark time in my life because I just felt so uncomfortable in my own body,” said Hayley.

The date was set, May 13th, 2015 would be the day of the bone marrow transplant. Each year, approximately 17,500 people benefit from the transplant. But it doesn’t work out perfectly for everyone.

“My bone marrow transplant was different because usually it’s one person and it’s a painless procedure. Like they put you under and take the bone marrow out of your lower back, but in my case, I had an almost perfect match and the person decided not to go through with it. So I actually ended up getting…bone marrow through an umbilical cord from two children,” said Hayley.

Hayley spent most of her time in the hospital with her dad. Her mother and sister (Maddie) would visit on the weekends when possible, but her dad was always with her. She explained that she often got mad at her dad when he had to make her do certain things (the one that made Hayley the maddest was taking a bath). She also got mad at him when she wanted her mom there. She explains that her medicine made her angry and grumpy a lot of the time, and her dad had to take everything she would say. However, now she realizes this journey has brought her closer to both of her parents.

“Maddie, she was still in school, she was in fifth grade. I know it was really hard on her, I didn’t get to see her as often because she obviously had school and she would come in on the weekends sometimes and we’d have sleepovers… I honestly didn’t see her as much as you would think,” said Hayley.

In certain cases, you would assume that siblings get closer to each other in times like these. But in Hayley’s case, she and Maddie both agree that they grew further apart due to distance and the stress of the situation.

“I tried to talk to her but she was always depressed and sad all the time and I didn’t really know how to speak to her or communicate with her, so we definitely grew further apart. We had moments where we had fun and we’d joke around and be sisters again but when she was in the hospital, it was like it wasn’t even her and I didn’t know how to act around her,” said Maddie.

Maddie says at some points she would be jealous of the attention Hayley was getting. She said that she felt like no one cared about her and everyone was only concerned with Hayley. But it was a challenging time in Maddie’s life as well. Kids that have siblings going through hard times like these are very brave. They have to keep a smile on their face and pretend they’re okay. But their mind is constantly consumed with if their sibling will survive this brutal battle.

“Hayley was jealous because I got to go to school and do all this stuff and I was jealous because she had all this attention even if it was unwanted, and I just didn’t feel like people cared about me as much as her,” said Maddie.

Maddie admits that even though she and Hayley grew apart, she loves her and would never want her to go through something this awful. She says “I wish it was me instead of her” but she knew Hayley would get through it. Maddie says she also became antisocial and lost a lot of friends because they didn’t know how to talk to her. Maddie admits that sometimes she didn’t even want to see Hayley because of how emotionally draining it was.

“I definitely had to grow up a lot and I was sad but I knew she would get through it. There were times that I was very pessimistic and there were times when I knew nothing was going to happen. I really looked up to her, I was 10 years old and she was my hero. Seeing her having to be taken care of instead of her taking care of everyone was really sad,” said Maddie.

After the transplant and after recovering for a bit of time, it was time for Hayley to return to school. The plan was to return to Saco Middle School (where she had been attending before the transplant) through a robot. Her parents sat down for a meeting with the principal of the school but she didn’t get the news she was hoping for.

“She said that if I wanted to come back to SMS (Saco Middle School), I would have to go back to seventh grade and redo seventh grade. My parents were like ‘No we want her to stay in eighth grade. She has all her friends, if she just gets the time and attention she needs, she will be able to do it’. But they were against it and they wanted me to go to seventh grade,” said Hayley.

Hayley and her family decided to take matters into their own hands, and with the help of a family friend, she was able to go to Thornton Academy Middle School (TAMS) as an eighth grader. Her parents had a meeting with the principal of TAMS and they were very excited to have her. They wanted her to be in the same grade as her friends and they were willing to do whatever they had to to make sure Hayley wouldn’t get left behind.

“I used the robot and I’d have four different classes, so two classes a day, and I took reading, writing, social studies, and math. Basically the whole year I was with Livy Paradis in all her classes. She would send me the homework or Heidi Brewer [Hayley’s teacher] would send me the homework. I knew her from before so it was nice to have a teacher that I knew,” said Hayley.

“Hayley would sit behind the screen at her house but still go to class through the robot…you would hear the robot beep and everyone would be like ‘Oh Hayley’s here’. She would control it from her house and put herself next to my desk and that’s how we would do our work. And sometimes if the robot wasn’t working I’d take out my phone and facetime her instead. I remember one time Hayley surprised everyone and came into the classroom and I was a mess…she walked in and I started bawling and everyone in class was looking at me like ‘what’s wrong’ and I was like ‘guys this is Hayley’ and they were like ‘oh my god she’s not in the robot’,” said Olivia Paradis ‘20 (one of Hayley’s closest friends at the time).

“[When we found out she was cancer free] I remember being super excited. When we visited her at the hospital and she knew she was cancer free, I think me and Livy went together, that was super exciting because we knew she was going to get to come home and that she was okay,” said Amanda Bogardus ‘20 (one of Hayley’s closest friends at the time).

The support that Hayley received after the transplant was incredible. She explained that as well as having her friends and family visit her, she also had random people sending her gifts and money.

“I’d get so many things like cards and stuff in the hospital and I didn’t know what to do with it, a lot of people didn’t know what to send me so they sent me money and I’m so grateful for that because it helped my parents pay off the medical bills…It was just very generous,” said Hayley.

The community also came together to support her. The Thornton Academy Middle School and Saco Middle School both dedicated their basketball seasons to her (Hoops for Hayley), and the little league girls softball team supported her by doing Hits for Hayley. Her parents put together a race called Hugs for Hayley and although she is now healthy, the race still happens each year and all the money is donated to the Maine Children’s Cancer Program. The Hoops for Hayley fundraiser has now been changed to Hoops for Hope in order to raise money for a Thornton Academy teachers wife who had Breast Cancer. Hayley is very happy that these fundraisers are now used to raise money for other people in need, and she’s glad she can help other people as they helped her.

“A lot of people, I’ve never personally talked to them before but then they’ll come up and start talking to me and they know exactly who I am… it’s not just adults, it’s kids in the community that come up and start talking to me… adults will come up to me an ask me how my health is,” said Hayley.

Hayley admits that although she loves that people are concerned for her, she wishes she could talk about more than her health. Now that she’s healthy, she would rather talk about how school is going or what exciting things she’s been up to. She loves all the support but she is ready to talk about other important things in her life as well.

Hayley is a role model for a lot of the kids in the community. She sometimes goes into hospitals and visits the kids there and encourages them to keep pushing. She has met kids that have Aplastic Anemia and she is always telling them that it’s going to be okay. Hayley and her parents give their phone numbers to kids so they have a connection to someone that has been going through the same thing.

Hayley says she has met five or six kids just in Maine who have Aplastic Anemia. She wants people to be aware that this is a deadly disease and people do go through it. She explains that most people worry about diseases like cancer and don’t even know about Aplastic Anemia. But this can be more deadly than some cancers. Hayley also talks about how devastating it is that some of the friendliest and happiest people have to go through this. Everyone that has this disease is normal people with normal lives.

“It’s definitely given me a new outlook on life to not take anything for granted. I’m so grateful for all the new people I met, whether it was on trips or if they contacted my dad on facebook to ask if I could meet their kids. The nurses and doctors I’ve met in Boston and Maine and Portland [were all amazing]. I still keep in contact with two of my favorite nurses from Boston and every time we go I want to see them. That’s probably been the best part of it all,” said Hayley.

Hayley is a junior in high school and has been healthy for three years now. She is currently managing the field hockey team at Thornton Academy and plans to go to college for Marine Biology. She hopes to continue raising money for kids with immunosuppressive diseases and she will forever be grateful for all of the good things that have come out of this journey. Hayley is one of the kindest hearted and mature students and her family and friends are so proud of how far she has come and how brave she has been.

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