how i care for leukemia: 'i’ve become stronger in standing up' for my family
jaunita rodenhiser wants other parents and caregivers to know about the happy endings of leukemia – and stay strong.
9 minute read
“it was terrifying,” jaunita, left, says of the leukemia diagnosis and what lay ahead for her daughter hailey. “we had had her late in life, never expecting to have a daughter. she had become our world as older parents."
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hailey rodenhiser received more than 50,000 christmas cards and tree ornaments from around the world to raise her spirits during her cancer treatment. she was feeling depressed because she couldn’t be like other kids without all the exhaustion, infections and medications. her mom, jaunita, posted on facebook asking family and friends to send over some christmas cards because her daughter loved getting mail. the word spread. news media picked up the nine-year-old nova scotia girl’s story, and the request took off.
and then the cards started arriving in bundles at the family’s dayspring, nova scotia home, where hailey planned to hang them up in her playhouse after the holiday. she was still opening christmas cards in late march because there were so many.
“she got postcards from tanzania, she got handmade cards from school children, cards from japan and antarctica. we still have them all. i never thought that was going to happen. and it was just crazy. but it was great for her to see that support,” says jaunita. “one year, we decorated our whole tree with all her ornaments, and we still had extras.”
when a child is fighting for their life from an aggressive, lethal disease like cancer, your heart goes out to them. and the stories of families who would do anything to make their children feel better are just as moving and important to share.
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for jaunita, it all came as a shock that propelled her into a caregiver role with critical on-the-spot learning of all aspects of her young daughter’s cancer.
the first signs of leukemia
it started in 2014 when hailey was a happy, active seven-year-old who loved books and make-believe. the family was at the local christmas parade in november, but hailey didn’t seem like herself, her mom recalls. “she was sitting on the curb of the road, and she wasn’t really into the whole thing. then her friend showed up, and she was a little more enthusiastic, but she started saying that she didn’t feel well and she had a fever.”
back home, jaunita and her husband, leonard, hailey’s dad, followed the usual course and gave her tylenol to keep her fever in check. it continued for a few days, so they took her to the er to be safe, where the doctor said she may have roseola, a common viral infection in young children that causes a sudden high fever. he recommended tylenol to see if her fever would break and a watchful eye.
“i thought, ‘it’s just a fever. it breaks, it goes away.’ i kept her home from school because she was in grade 2, kept medicating and let her rest,” she says. then hailey stayed with her grandmother on a saturday night while her parents went to a holiday party as planned. when they picked her up the next morning, her grandmother said hailey was not her bubbly self. she woke up on monday damp from sweat, although her fever broke, so jaunita was relieved. she felt well enough to go to school.
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jaunita was at work as a supervisor at a busy call centre when the call came.
“the name of the school came up on my phone, and i knew right away that she wasn’t feeling well again. i picked up the phone, and i was talking to the receptionist at the school, and she said, ‘she’s so pale, she’s green.’”
jaunita picked her up from school and went straight to the er, where her daughter was admitted immediately. hailey said her hips, her shoulders and her stomach were hurting. she was pale and scared.
a new doctor to the hospital on rotational residency stood at the foot of the stretcher observing her and said she was dehydrated and her eyes were yellow, which jaunita hadn’t noticed. hailey hated getting needles, so it was a chore to get the iv in to draw blood and put her on fluids. she was sent for an x-ray of her chest and abdomen.
“when we came back from x-ray, i remember it like it was yesterday. we went into the room. she was on a stretcher. three nurses followed us in, and they all went to her and distracted her while the doctor came to me and said, ‘i’ve got some bad news.’ i was thinking, kidney failure. she was never sick. she was such a healthy kid.”
the doctor said he thought she had leukemia.
what happened next seems like a blur of shock and disbelief. hailey was taken by ambulance to iwk health centre, a major women’s and children’s hospital and trauma centre in halifax. jaunita rode with her, trying to stay calm.
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“it was like a punch to the gut,” she says. “i couldn’t even talk to my husband when i called him. he was at work, and i had to pass the phone to the doctor so that he could explain it. my husband was coming back to get stuff for us to go to halifax. i called my boss, and i said, ‘i don’t know when i’m going to be back to work.’ i had no idea what was going to happen. and i was off work for 13 months.”
leonard, hailey and juanita rodenhiser, left to right.
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becoming a caregiver after leukemia diagnosis
at iwk, dr. bruce crooks, the oncologist on call, was an amazing pediatric oncologist, jaunita says. he became hailey’s primary doctor. he told the family he was certain she had leukemia, but she would need a bone marrow biopsy to determine the type. the biopsy was done the next day, tuesday, and surgery followed on wednesday morning to implant a port-a-cath underneath the skin on her chest, which is a device about the size of a quarter that connects a catheter to a large vein for all her treatments. hailey had the port-a-cath in for two-and-a-half years while she was in and out of hospital.
by the same afternoon, she had her first chemo treatment.
it was fast, jaunita says, because of the urgency: “the doctors then told us she wouldn’t have made it to the weekend otherwise.”
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her little hailey had acute lymphoblastic leukemia (all), a rare blood cancer where cancerous blood cells form and push out the healthy blood cells. it’s the most common cancer found in children, according to the leukemia and lymphoma society of canada. although it can happen at any age, it most often appears in youth under age 20. most childhood leukemias are caused by chance mutations in the genes of white blood cells, and except for rare genetic cases, little is known about the causes of these diseases.
as the canadian cancer society says, 51 per cent of people with all will survive for at least five years. about 40 to 50 per cent of people with all reach a complete remission and do not relapse.
“it was terrifying,” jaunita says of the diagnosis and what lay ahead. “we had had her late in life, never expecting to have a daughter. she had become our world as older parents. we focused a lot on her to ensure that she had the best life possible, even though we were financially strapped.” they have a blended family of five boys; the youngest is 14 years older than hailey, and hailey was a gift.
“she needs our support. she needs us to be strong for her. she needs our positive reinforcement. but at the time when we were told [of her leukemia], the one word that went through my head was, ‘why?’ because she was so healthy. why did this happen?” jaunita became immersed in her daughter’s care.
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“everybody has the potential and has cancer cells in their body. it’s just whether or not they start rearing their ugly heads,” she says, adding explaining cancer to a seven-year-old was a challenge. “we said, ‘you’ve got bugs in your blood. they need to clean your blood. they need to treat your blood and your bone marrow to clean this out.’”
she and her husband spent a month in hospital, taking turns sleeping in the parent bed in hailey’s room and the reclining chair. to add to the strain, their daughter was assigned as “high risk” and experienced a lot of uncommon side effects, mostly from the treatment.
by her second treatment session, she said she couldn’t breathe. the leukemia cells had built up in her liver and spleen, and all the medications they were giving her and the fluids to keep her hydrated were building up and pressing on her lungs, jaunita explains.
“she was getting fluid in her lungs. so, they had to give her medication to help clear the fluid. we had to be there and watch the monitors and if the sensor alarm went off for her breathing, or if it came off her finger, we had to put it back on.” she also ended up with steroid-induced diabetes, where jaunita was giving her insulin shots.
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at the 28-day mark of treatment for all, kids are expected to go into remission, and a bone marrow biopsy is done to confirm this. unfortunately, this wasn’t the case for hailey, who still had active leukemia cells in her bone marrow.
“at that point, my head was in my hands constantly, you know, with tears that i was going to lose her. this was my baby girl. she’s not responding the way she should be.”
they had enrolled her in an iwk study for a promising treatment, but the medical team advised taking her out of the study and changing her course of therapy. more chemo followed, along with numerous medications to prevent infections and then maintenance drugs. it was complicated.
back at home after the hospital stay, the family celebrated a late christmas in january. they also kept a guidebook and a chart to check everything off for hailey’s continued treatment, including pills.
“we had to crush them and put them in liquid in a syringe ourselves at home on a regular basis every day, sometimes four times a day, depending on what treatment she was on.”
another setback and side effect was the pancreatitis that came in october 2016, hospitalizing her for an entire month in halifax, where she couldn’t eat anything, not even water. she couldn’t put anything in her stomach and had six pumps hooked up to her port to get lipids, proteins and nourishment into her body. this was on top of her ongoing cancer treatments.
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jaunita stayed with her all week at the hospital, and leonard came up on weekends so she could get a break and rest at the ronald mcdonald house in halifax. reaching out to charitable foundations like ronald mcdonald house, the canadian cancer society and make-a-wish opened their eyes to how many families are impacted by cancer and how much support is available for kids and families like themselves—support that has made a huge difference.
the end of chemo and life after leukemia
hailey finished her final chemo treatment in april 2017. there were some oral medications that went on through july, but that was it. patients, however, are not considered cured until five years post-treatment. for the longest time, her endurance and stamina were really low, which was expected.
but today, at age 17, she’s seven years post-treatment and considered cured. hailey is a proud survivor who shares her story and is active in charity events to support other kids who have a hard road ahead. she’s also starting grade 12 and is interested in theatre and writing. she’s very close with her mom.
jaunita wants other parents and caregivers to know about the happy endings of leukemia – and stay strong.
“a child doesn’t understand, so you’re just as much the patient as they are. because you are the one who has to make sure they’re being taken care of properly,” she notes of paying close attention to how treatments are administered and asking questions to educate yourself on how things should be done.
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cancer changes everyone, she says.
“i’ve become stronger in standing up for not just her, but myself, my husband, my other kids,” she says.
“but it’s also softened me on the other side. i’ve got to let her have experiences. i’ve got to let go a little bit. she went through this terrible ordeal, and we have to let her do what she needs to do. she has severe health anxiety now, so when she said she needed to get some therapy, she went and did it on her own. and now, when she goes for any of her doctor appointments, she goes by herself.”
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