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Far From Home When Your Child Has Cancer

Posted on December 16, 2020 by Claire Slaughter

By Stephanie Lacasse


The day I took my daughter Isabelle to the hospital, I was expecting to pick up a prescription for her and make my way to daycare to pick up my twins, Nicholas and Maxime, before meeting my eldest, Zacharie, at the bus from school. But when the doctor at our local hospital asked me to take a seat, I knew we were in for a much worse scenario. He told me her red and white blood cells were low—very low. He said it was likely cancer but they didn’t know what kind. He called ahead to the hospital in Sudbury and sent me straight there.

My husband, Joel, met us at the Northeast Cancer Centre and after a few more tests, we were told they were sending Isabelle to Toronto immediately. Only one parent could accompany her on the plane so being the more experienced driver, Joel made the six-hour drive to the city. I made arrangements for my best friend and my mom to pick up and take care of the kids, and we left. I had no idea I would not return home again for another 48 days.

“The first few times Isabelle got a lumbar puncture, I couldn’t breathe. Parents are not allowed in the room during the procedure and I just stood on the other side of the door paralyzed.”

– Stephanie Lacasse

Isabelle was diagnosed with acute lymphoblastic leukemia (ALL). The doctor told us the prognosis for kids with ALL is typically very good and the survival rate is high. We were so relieved; we decided to keep our sights on the end and buckle down for a fight. But the next few weeks were hideous and challenged us all in many ways. The intravenous needle in Isabelle’s hand kept coming out in her sleep and blood would spurt everywhere. She developed high blood pressure, severe pains in her belly due to constipation from the drugs and an infection where the port was implanted to deliver her meds. Isabelle also contracted C-difficile, a bacterial infection causing diarrhea, which completely wiped her out to the point she had no muscle mass in her legs and she had to learn to walk again. But the scariest thing for us was her non-responsive episodes which lasted for several minutes each time. Tests revealed that Isabelle had developed a blood clot in her brain from the original chemotherapy and she would require blood thinners delivered by needle twice a day for over a year. Joel took a month off work, but when we could not handle that financially anymore, he returned to his job and I stayed in Toronto to care for Isabelle by myself.

What Price Do Families Pay When a Child has Cancer?

I haven’t been able to go back to work. Joel works out of town, one week on and one week off, so when he is not with us I am the one navigating this world of blood tests and chemotherapy while coordinating care for the rest of my family.

Luckily, most of Isabelle’s care takes place an hour away at the POGO Satellite Clinic at the Northeast Cancer Centre in Sudbury. This saves me the gruelling six-hour drive with a nauseous child in the back seat and means more time at home with my kids and my husband. The nurses at the clinic go above and beyond when it comes to connecting us to resources, especially when I do have to make the trip back to Toronto for aspects of Isabelle’s treatment that cannot be handled in Sudbury. Our family is incredibly grateful for the support that we have received.

Read more to learn how POGO Interlink Nurses support children with cancer and their families.

Having a child with cancer takes its toll on the other kids, the household, the marriage, but we seem to be getting back to normal lately—or at least a new normal. My beautiful little girl is four years old now. She doesn’t need to sit on my lap anymore when she gets her blood work done and loves taking the bus to school by herself. She is one tough little cookie.

Posted in In the News | Tagged Northeast Cancer Centre, POGO Financial Assistance, POGO Satellite Clinic

Your baby has cancer

Posted on November 28, 2016 by admin

Anstead Family_2017 Wntr CCM Newsltr_28Nov16These four words are forever unforgettable. On May 26, 2015, my wife, Christine, and I had taken our 18-month-old daughter, Charlotte, to see a pediatrician at Grand River Hospital near our home. She was not herself—low energy and very pale. This was the third doctor’s visit that week and we were determined not to leave without answers. After a full morning of tests, Charlotte was diagnosed with acute lymphoblastic leukemia (ALL). We were brought to our knees. Shocked and scared, we learned her hemoglobin was at the dangerous level of 33 and we were rushed to Children’s Hospital in London for an emergency blood transfusion and the start of our cancer journey.

The next 16 days were filled with more transfusions, a surgery to implant her port, various procedures and the start of chemotherapy. We were introduced to doctors and nurses whom we’ve now come to think of as family, and we have learned as much as we could about this type of cancer and its treatment. The days were filled with procedures and the nights were mostly sleepless. It was an extremely difficult time but the silver lining was the care and respect we felt from every member of our medical team. As scared as we were, they gave us the strength to get through those days together as a family. We learned Charlotte’s treatment would span nearly two and a half years. It was at that point we decided Christine would leave her career to care for Charlotte full time. In a blink of an eye our lives turned upside down. We were terrified on many levels but we became quickly resigned to the start of this journey.

When it came time to be discharged, we were asked to stay in London to be close to the hospital until Charlotte had completed the induction stage of treatment. Leaving the security of the hospital was scary for us. We would no longer have a nurse on call to help answer questions or problem-solve at any time of the day or night.

On our last day we met Julie Dowler, our nurse case manager. Immediately we took to her kind and compassionate nature. Christine remembers their first email exchange that day. Julie told her, “Now we are family,” and she meant it. To this day, we still feel like we are her only patients. It was her support and reassurance that gave us the confidence to take the next step and leave the hospital that day.

While staying at my in-law’s home those next two weeks, we had a visit from Margaret Warden, our POGO Interlink Nurse. She helped to educate us further on leukemia as well as the role POGO would play in our lives. We learned about the generous POGO financial assistance available for childcare, food and accommodations, as well as information on the POGO Satellite Clinics. My wife and I had so many questions about what we could expect in the coming months and Margaret took her time to answer every one. Having her undivided attention in our home was comforting and we felt even more secure about Charlotte’s care.

We were counting down the minutes to the end of the induction phase. Charlotte had the full effects of the steroid treatment and in just a month our baby girl became almost unrecognizable. She was still only a baby and not able to communicate her needs or feelings. I remember she would clap her hands in frustration to get our attention. It was completely heartbreaking for our family.

At the end of induction, we were given permission to go home to Cambridge. Once home and settled, we started visiting the POGO Satellite Clinic at Grand River Hospital. It was such a relief to be able to get some of Charlotte’s treatments in our community. It meant I could go back to work and we could feel our lives starting to return somewhat to normal. Patti Bambury, our Satellite Nurse Coordinator, and one of Charlotte’s favourite people, takes great care of us. I’ve been impressed with the way the POGO Satellite Clinic communicates with our team at Children’s Hospital. We’ve never felt a disconnect in Charlotte’s care. Another thing we appreciate about Grand River Hospital is its small size. There are rarely more than a few families there for treatment at the same time so it tends to be a relaxed atmosphere. Christine and I have found comfort in connecting with the other parents while our children enjoy the play area. With only three main nurses, whom we’ve come to know very well, it feels very much like a family and this has gone a long way to improving Charlotte’s anxiety at clinic visits.

POGO opens 8th Satellite Clinic to Support Families in Peterborough area

Like all families on this journey, we’ve had our challenges to overcome. Charlotte’s first port developed a blood clot and she had to endure three months of twice daily blood thinner injections. Two other port surgeries and a PICC line were to follow. On top of this, there was a period of time where she would spit out her medication and we would have to practically hold her down to get her to take it. The worry and stress this cancer has caused in our lives has been insurmountable. My wife and I have both gone through our own stages of anxiety and depression at different times.

Trying to remain strong for Charlotte has been one of the hardest things I’ve ever had to do.

Now that we are nearly a year and a half into Charlotte’s treatment, we have learned how resilient and inspiring children are. Even on the bad days, there is always laughter. The life lessons I’ve learned from my two-year-old will carry me through the rest of my life.

Thank you POGO for your support, your financial assistance and for setting up the Satellite Clinics so families like mine can live more normal lives while still getting the care our children need.

Mike Anstead is the proud father of Charlotte.

“Charlotte  turned 5 years old in November 2018 and is thriving in Kindergarten!  Every medical follow up appointment finds her stronger and stronger and we are at the point where living with cancer is no longer a part of our daily lives. Life is wonderful, once again!”

– Mom Christine Sarlius, December 2018

Related Resources

Read The Childhood Cancer Care Plan to see how POGO is planning long-term to care for children like Charlotte.

Review The POGO Surveillance Report for the most recent 5-year data on trends in childhood cancer in Ontario.

Check out the presentations from Leukemia: Successes, Advances, Challenges, the theme of POGO’s 2016 Annual Multi-Disciplinary Symposium on Childhood Cancer.

Posted in Misc | Tagged 2016 Symposium, acute lymphoblastic leukemia (ALL), POGO Clinic, POGO Interlink Nurse, POGO Satellite Clinic

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August 10, 2022

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