Seven-year-old Beckett Tessarolo is \u201cjust the happiest kid\u201d \u2013 quick with one-liners and always sporting a huge smile, including for his first day of Grade 2 at Crescent Park Elementary when classes resumed in September.<\/p>\n
Busy with extra-curriculars \u2013 as many kids his age are \u2013 such as hockey and baseball, it\u2019s hard to believe he started an unimaginable battle for his life just three months shy of his first birthday.<\/p>\n
\u201cEnough time has passed that you\u2019ll run into people that don\u2019t know he was ever sick,\u201d mom Melanie said in a recent interview.<\/p>\n
\u201cYou would not know it looking at him.\u201d<\/p>\n
But while Beckett may not remember what led up to his diagnosis with acute lymphoblastic leukemia (ALL), nor the eight months he spent in hospital receiving treatment during the initial phase of a clinical trial, his mom\u2019s recollection is crystal clear.<\/p>\n
\u201cHonestly, everything was scary,\u201d Melanie said. \u201cIt\u2019s all so overwhelming.\u201d<\/p>\n
The \u201cvery shocking\u201d diagnosis came soon after Melanie took nine-month-old Becket to the doctor to investigate unusual clinginess and changes to his skin colour.<\/p>\n
\u201cHe was a bit out of sorts and not acting normal,\u201d the South Surrey mom recalled. <\/p>\n
Bloodwork revealed the concerning diagnosis \u2013 deemed serious enough to prompt a late-night housecall.<\/p>\n
\u201c(Our doctor), at midnight he came knocking on our door \u2026 woke us up and told us to head in (to BC Children\u2019s Hospital), they were expecting us.<\/p>\n
\u201cThen, Beckett and I didn\u2019t come home \u2026 I think the first stay was 57 days.\u201d<\/p>\n
Beckett\u2019s story began in February 2020, just two weeks before the COVID pandemic shut \u201ceverything\u201d down. It was highlighted in September as part of Childhood Cancer Awareness Month, to draw attention to the launch of a new clinical trial \u2013 OPTIMISE \u2013 being conducted across Canada, in collaboration with Australia. It\u2019s \u201cdesigned to match children, adolescents and young adults with high-risk, hard-to-treat cancers to targeted therapies based on the genetic makeup of their tumours,\u201d a news release explained. <\/p>\n
Donations supporting such research \u201care driving groundbreaking discoveries that are improving the lives of children and youth today while redefining the future of child health.\u201d<\/p>\n
Beckett, now 7, was among four B.C. youngsters to participate in the North America-wide \u2018TINI\u2019 clinical trial. His parents were given 24 hours to choose between enrolling him in it, or proceeding with the standard chemotherapy protocol for ALL.<\/p>\n
The early-phase TINI study added two new drugs \u2013 bortezomib and vorinostat \u2013 to the already \u201cvery intensive\u201d treatment regimen, Dr. Rebecca Deyell, clinical instructor in UBC\u2019s Department of Pediatrics, explained.<\/p>\n
\u201cThe hope was they would improve outcomes for these babies with the hardest-to-treat leukemia,\u201d Deyell continued, noting infant leukemia cases are typically more aggressive \u2013 and harder to treat if they relapse down the road \u2013 than those diagnosed in children older than a year.<\/p>\n
All four of the B.C. TINI patients had improved outcomes, she said, noting the two new drugs are now part of an upcoming TINI2 clinical trial, which will add a third drug to the regimen.<\/p>\n
The decision to enrol in the trial wasn\u2019t an easy one for Beckett\u2019s family. Melanie recalls she and her husband Geoff ultimately \u201cleaned into the advice of the doctors,\u201d including that of one oncologist who, when asked which option she would choose for her own kids, replied that she \u201cbelieved in science.\u201d<\/p>\n
\u201cI remember the doctor saying \u2026 she believed that the study was being done in the hopes of having better outcomes and better treatments, and so that\u2019s what she would do.<\/p>\n
\u201cSo far \u2026 he has done well, so we\u2019re grateful for that.\u201d<\/p>\n
Still, the initial journey was a rough one.<\/p>\n
In addition to side effects that kept Beckett in hospital for those first eight months \u2013 with just occasional, short reprieves of a stay at home along the way \u2013 the pandemic meant only Melanie and Geoff could see Beckett, who couldn\u2019t be left unattended. Melanie did most of the hospital vigil, while Geoff manned duties on the homefront, tending to their two older children, who were three and six at the time. (Beckett later gained another brother, who is now four years old.)<\/p>\n
\u201cIt was quite the juggle,\u201d said Melanie. \u201cThe not being able to see the kids and (Geoff) being the only one who could come visit me in hospital was kinda challenging.\u201d <\/p>\n
But while the road for Beckett and his family was difficult \u2013 as anticipated \u2013 Melanie said she has no regrets about choosing the clinical-trial path.<\/p>\n
\u201cGoing into it, you never know, because it is a study, and it\u2019s something that they\u2019ve never done before,\u201d she said. \u201cThere is the fear of the unknown, but also the hope that science is making things better.<\/p>\n
\u201dWe were grateful for the chance to have access to that.\u201d<\/p>\n
Beckett was technically in remission within his first couple of months of treatment, she noted. He received treatment for a total of two years, initially through a central line, then via a port under his skin. He\u2019ll remain under Deyell\u2019s care \u2013 with appointments every six to 12 months \u2013 and a part of the trial until he\u2019s 18 years old.<\/p>\n
Beckett did \u201creally well\u201d in the trial, Deyell said.<\/p>\n
She acknowledged the decision to enrol their child in a clinical trial is a tough one for any family, but noted studies like the TINI trial \u201care often comparing the best-known gold-standard treatment to the gold-standard treatment plus something new that we hope will be better.\u201d<\/p>\n
\u201cWe don\u2019t know that it will be better \u2026 but ultimately, families do feel that including their child in these sorts of studies is worthwhile, both for their child and also for kids down the road.\u201d<\/p>\n
Reflecting on her family\u2019s experience, Melanie said she\u2019s a firm believer that everything happens for a reason.<\/p>\n
It\u2019s \u201cmade me appreciate the little things a lot more,\u201d she said.<\/p>\n
\u201cEven being able to be home and be together for holidays. I know there\u2019s families there that can\u2019t go home.\u201d<\/p>\n
The hospital foundation, she added, was \u201cso great,\u201d checking in often to see if there was anything they could help with; from laundry to food.<\/p>\n
The family was also inspired to fundraise to support research and help fill gaps in access to diagnosis and treatment, as well as client services.<\/p>\n
\u201cWe try to do whatever we can,\u201d Melanie said, naming Balding for Dollars and the Leukemia & Lymphoma Society\u2019s annual Light the Night<\/a> as among events they\u2019ve supported.<\/p>\n \u201cWe did it that first year because we saw that the people who were trying to help us could not help as much,\u201d due to the pandemic prompting a shut-down of many fundraising events.<\/p>\n