CAR T-cell therapy Halts Brave Roisín’s 7-year Battle with Leukemia
In February 2015 at just 3 years old, Roisín was diagnosed with Acute Lymphoblastic Leukemia and began chemotherapy in Our Lady’s children’s hospital Crumlin.
When the community of Tipperary Town and surrounding areas became aware of Roisín’s story, they fundraised, prayed and followed with hope this brave little girl’s 7-year battle with leukemia.
I recently spoke with her mother Cora, who told me about the journey, the heartache, the devastating outcomes and disappointments and thankfully, the success of CAR T-cell therapy that saved her daughter’s life. Now ten years of age, Roisín skips into school like a normal 10- year old… still smiling, still an inspiration and still putting life into perspective for us all.
“At the beginning, I was told she had a 90% chance of survival, but it was a long road and the chemotherapy protocol was constant for two and half years without breaks,” explained Cora, Roisín’s mother.
Roisín completed the treatment in July 2017 and just one year later on August 2018, the family discovered the Leukemia was back. Roisín, then aged 7, had relapsed and this time her chances of survival had reduced from 90% to a 30%.
“It was devastating but the numbers didn’t make any difference to Roisín… she was going to fight and once again a chemotherapy plan lasting 2.5 years was scheduled. Roisín spent the first 6 months of treatment in Crumlin with the additional Cranial Radiotherapy because the cancer had also infiltrated her central nervous system.” “She was a lot sicker than the first time but doctors explained her little body had already taken so much during the previous treatment regime. The medical side of things became normal to Roisín because it was all she knew whilst growing up. In November 2020, with only 12 weeks left, she developed a pain in her shoulder that turned out to be Leukemia cells in her shoulder joint. Roisín had relapsed again.”
Waiting for Manchester. Photo taken on February 3, 2021 – finally pain free and off antibiotics and a reduction in steroids, Roisín and her mother Cora hope, with ten thousand hopes, to get to Manchester to commence life-saving Car T-cell therapy
Cora explained, “I was told straight away the treatment options were very limited. There was only one glimmer of light called CAR-T cell therapy but she had to be eligible for it and if she didn’t meet the criteria all they could do was buy her time. An international board of Doctors meet from around Europe and sometimes further afield and thankfully they decided unanimously that she did meet the criteria. CAR T-cell therapy is the newest form of treatment for Leukemia and has very promising outcomes. Roisín was accepted for the CAR T-cell therapy treatment at The Royal Children’s Hospital in Manchester. It isn’t available in Ireland yet, but hopefully will be up and running by the end of the this year.”
In November Cora and Roisín travelled to Manchester for an initial assessment and for the Apheresis of her cells to be sent to America. “The CAR T-cell therapy treatment is basically a type of Immunotherapy,” explained Cora.
“The patient’s T cells (bloods cells that are a part of a person’s immune system) are taken (harvested) and sent to a laboratory. There they are modified to produce special structures on the surface of them called Chimeric Antigen Receptors (CARs). Then they are infused back into a patient where the CAR T-cell therapy cells can now recognise cancer cells and destroy them.” The treatment was due to start in January and we were incredibly hopeful but the day before we were flying to Manchester to commence treatment, Roisín woke with a sudden onset of pain and discomfort. Within hours it rapidly increased and we immediately went to Crumlin. They told us she wasn’t fit to travel for treatment in Manchester and while Roisín waited for an MRI she deteriorated quickly and her pain became unmanageable,” said Cora.
“MRI findings showed inflammation in her muscles around her pelvic area and tummy and back plus fluid on both hips. Further tests to see what was causing it kept coming back inconclusive. Roisín became very unwell very quickly and was unable to walk or stand and even move in the bed. The constant tests and investigations from doctors from all departments in Crumlin kept coming back inconclusive and her pain continued to worsen. It was really frightening, and everyone was out of ideas until Roisín’s own Haematology consultant decided to treat her with an immoderacy drug. Amazingly, 48 hours later she was walking again. It all came back to the disease finding ways to attack her body.”
So, in the middle of February, Roisín travelled to Manchester. She would be there a minimum of six weeks enduring lymphodepleting chemotherapy to weaken her immune system so her own body didn’t destroy the CAR T-cell therapy cells. She did this for 4 days and had a 3-day break before receiving an infusion of her CAR T-cell therapy cells.
“The side effects of CAR T-cell therapy are quite harsh and she had a rough week after the infusion but then things started to settle down and she was only kept in hospital to monitor the side effects,” said Cora. “We got home the end of March and a couple of weeks later we found out that Roisín was in remission. Her team in Manchester gave her a 50% chance of this working and her never needing any other treatment. She is now 6-months post CAR T-cell therapy and doing really well. Doctors are happy with her and continue to monitor her. She has a compromised immune system, her body isn’t producing B-cells but it’s a known side effect of the treatment, and she is receiving IVIg for it every 3 weeks that gives her immune system a boost,” said Cora.
“Roisín is over the moon to be heading back to school and getting back to little bit of normality and a good quality of life that any 10-year-old deserves. Roisín has endured more than most kids her age after spending 6 years and 5 months of her 10 years fighting this battle, but she never complains. Roisín kept me going especially this time around. It was incredibly hard getting another cancer diagnosis in a worldwide pandemic. It was so hard having to travel to another country, not being able to have any visitors in hospital, enduring travel bans that stopped family seeing us in hospital and it was especially hard for her not being able to see her sister Ava. And yet, in all of this, Roisín is a very inspiring little girl with a vibrant personality and an infectious laugh that can only make you smile even when things were so tough.”
I have so many people to thank, the staff in the Paediatric ward in Clonmel who have never let us down and the Haematology team in Crumlin and staff of St. John’s Ward. I especially need to thank John Glynn from the Gavin Glynn Foundation who organised and made sure all our needs were meet in every way possible to travel to Manchester. He took on all my worries and let me concentrate on my child. A real unsung hero helping families like mine in the memory of his son Gavin. And thank you to all my family who are always there no questions. And to everyone who fundraised and donated to help us out… we are forever grateful.”