To mark World Blood Donor Day on June 14, Jessica Lake shares how her now six-year-old son, Larry, depended on the kindness of blood donors for over a year after being diagnosed with the rare blood disease, aplastic anaemia.
Larry Tan with mum, Jessica and dad, Lachlan during his transplant in August 2019.
Larry was only three years old when his mum, Jessica, noticed some lingering bruises on his legs and a rash around his neck. Shortly afterwards he was diagnosed with aplastic anaemia.
Larry playing music on his hospital bed soon after his diagnosis in late 2018.
Aplastic anaemia is a rare disorder in which our bone marrow fails to produce enough blood cells. This happens because our normal blood-forming cells, called stem cells, are replaced by abnormal fat cells. In Larry’s case, this was due to his own immune system malfunctioning and destroying his stem cells.
Although aplastic anaemia isn’t a blood cancer it can be just as serious, especially if the bone marrow is severely affected and there aren’t enough blood cells left circulating in the body.
Affecting just three to four people in every million, it’s faced mainly by teenagers and young adults, but can strike at any age.
“It wasn’t a straightforward diagnosis,” explained Jessica.
“It took about three weeks of tests, ultrasounds and x-rays to determine what was going on.
“Poor Larry had his fingers pricked and squeezed constantly, and a couple of bone marrow biopsies.
“We were flooded with relief when we were told it wasn’t leukaemia – but that feeling didn’t last long. Until that fateful day, we had never heard of aplastic anaemia.”
When Larry’s diagnosis was finally confirmed, the family were told he would need an urgent bone marrow transplant.
Both Larry’s identical twin brother, Henry, and his older sister, Matilda, were ruled out as donors.
The family saying their goodbyes before Larry entered the bone marrow transplant isolation unit in August 2019.
“Matilda wasn’t a compatible match, and doctors were reluctant to use Henry’s identical marrow in case Larry’s immune system simple destroyed it too,” said Jessica.
“We looked on the Australian registry but couldn’t find a match. Larry is part Chinese-Malaysian, and there’s not enough ethnic diversity on our registry.”
The search moved to the international registry and uncovered three potential donors. Unfortunately, none of them were contactable.
“Larry was starting to have regular lengthy hospital admissions and ambulance trips in the middle of the night for bleeding and infections,” said Jessica.
“It was so heartbreaking that not one person answered the call.”
Eventually all transplant plans were cancelled, and Larry was started on an immunotherapy called anti-thymocyte globulin (ATG). It involved the infusions of horse or rabbit-derived antibodies to kill specific cells called T-lymphocytes, which were attacking Larry’s bone marrow.
Larry responded well to this treatment initially but went downhill in the new year. By now, regular transfusions of blood products had become an unwanted way of life for the family.
Larry and Henry together at home post-transplant in December 2019.
“From the moment he was diagnosed, Larry was completely dependent on blood transfusions. He had no ability to make his own blood,” said Jessica.
“He had platelet transfusions about once a week, and red blood cells every two to three weeks,
“He had lost a huge amount of weight, had stopped growing taller, was in pain, seemed incredibly anxious, and was barely sleeping or eating. We were in dire straits.”
Finally, nearly a year after his diagnosis, a German donor responded to the call.
“Larry was fast-tracked to transplant,” explained Jessica.
“He had a bad allergic reaction to the preservative that kept the bone marrow fresh while it was being transported. That was a hard day.
“But otherwise the transplant went smoothly, and we were discharged from hospital after about six weeks. And finally, after more than 100 blood transfusions, Larry was declared ‘blood transfusion independent’ in late 2019.”
When Larry became ill in 2018, Jessica had to suddenly stop work and the family were forced to live off one income for two years.
“We were living in the same ward as cancer families, Larry was being treated with the same medications, suffering the effects of chemo, seeing an oncologist, and yet so many charities excluded us because his disease wasn’t technically malignant,” said Jessica.
“That felt like yet another blow at the time, so it meant a lot that the Leukemia Foundation recognised and supported aplastic anaemia families.”
All three kids together again one year after Larry’s transplant in August 2020.
Cut to June 2021, Larry has been going from “strength to strength” in his remission and started school this year.
Both Jessica and her husband, Lachlan, now regularly give blood.
“It’s now been 18 months since his transplant,” said Jessica.
“Apart from a nasty case of gastro immediately post-transplant, a scary septic shock episode and a few infections, he’s been travelling really well.
“We had feelings of immense gratitude every time Larry was hooked up to yet another bag of platelets or red cells, thinking about the person who’d gone and so generously donated them.
“Those 100 or so people helped save Larry’s life and got him to this point, where he is effectively cured.”
If you’re 18-76 years old, healthy and weigh over 50kg, you may be able to give blood. Visit donateblood.com.au to see if you’re eligible or to make an appointment.
If you or someone you know has been impacted by aplastic anaemia, or any form of blood cancer or disorder, please call us on 1800 620 420 or email [email protected].
Every person touched by blood cancer has a unique and important story to tell. Stories are our most powerful tool to spread awareness of blood cancer, to inspire others going through a diagnosis and to encourage support from the wider community.
