My son needed regular blood transfusions, but now coronavirus threatens the survival of children like him – ABC News

By daniellenierenberg

By Jessica Lake

Updated April 12, 2020 08:32:52

Almost two years ago, our world fell apart.

Our cheeky and sweet three-year-old son Larry suddenly became unwell. His previously robust physicality waned. His ruddy complexion became creamy.

His rosy cheeks and rose red lips glowed a pale pink at best. There were bad bruises on his legs darker and deeper ones than those dotting the knees of his identical twin brother. There was a strange patch of little red dots on his neck petechia, we would later learn pin-prick bleeding under the skin.

We took him to our GP. Then we took him to Monash Children's Emergency. Then, a few weeks later, we arrived at the Children's Cancer Centre of the Royal Children's Hospital.

He was diagnosed with idiopathic very severe aplastic anaemia. For unexplained reasons, his bone marrow had spontaneously started shutting down. We were disoriented and devastated.

Without the ability to make blood, Larry required constant transfusions. Every six-to-10 days, when his nose oozed or a blood blister appeared in his mouth, we would race to the clinic or emergency department (sometimes via ambulance) for a bag of platelets: "yellow medicine" our son called it. Once he could clot again we could relax a little.

About every one-to-three weeks, when he struggled to pull himself out of bed or off the couch, when his appetite diminished and his pallor grew too pale, he would receive a bag of "red medicine" to resuscitate his system.

Until mid 2018, I had the privilege and luck of never thinking much about blood donation. But now, the prospect of a shortage terrifies me.

Due to COVID-19, the Australian Red Cross Lifeblood service faces a critical shortage unless thousands of people donate.

Over a period of 14 months, while our son battled bravely through immunosuppressive treatment and multiple infections, he underwent more than 70 platelet transfusions and 40 blood transfusions. The blood of more than 100 kind souls kept him going.

One day last April, Larry's haemoglobin was the lowest it had ever been. In the 50s. Less than half the level of a "normal" person.

It was a Saturday morning, and I'd just raced him through city traffic to the hospital emergency department yet again.

Once we arrived, they ordered a bag of red cells. He dozed on the trolley bed. His lips the same colour as his skin. His skin the same colour as the sheet he had just vomited on.

I fidgeted and hopped back and forth around the doorway of our cubicle watching for the blood bank delivery. Please. Please. Please. An agonising wait. Finally, it arrived.

A rush of immense gratitude. The nurses did their double cross checks. Name, date of birth, patient number. Then it was hooked up to the IV Pump and connected. 235 millilitres over four hours.

I stared at the bag: "Collected 15 April 2019, due to expire 15 May 2019". I wondered who donated it on that Monday two weeks before. A man or a woman? Young or old? Which centre had they attended? Had they congratulated or rewarded themselves for their gift? I hoped so.

After 20 minutes, my dear little boy started to stir. He'd only had 19ml by then but it was already making a difference. A dusky warm colour was creeping into his complexion. Energy was reaching his cells again. By the time one hour had passed, he was sitting up, demanding food, drawing, playing I-spy and cracking jokes.

I assume if everyone could witness this miraculous transformation, we would all run to the blood bank and offer up our veins. By the end of the day, the bag of blood was empty and Larry was full of life again temporarily.

In August 2019, our son underwent a long-awaited bone marrow transplant.

From a pool of more than 30 million bone marrow donors worldwide, only three were a match, all from overseas.

Someone in Europe willingly, with no financial incentive or reward, booked into their local hospital and had stem cells sucked from their hip bones so that a stranger our son might live. An amazing act of generosity.

The sludgy burgundy bag arrived in Melbourne late at night on a commercial flight. Our little Larry had already undergone seven days of heavy chemotherapy in order to be ready to receive the cells. The last scraps of his immune system had been destroyed to make necessary space.

It was either the beginning, or the end of the road.

After a couple of months in isolation, Larry was discharged from hospital. A new beginning.

He is now six months post-transplant and doing well. He plays riotously with his twin brother and big sister. He no longer needs blood. He can make his own again, for now.

But many children at the Children's Cancer Centre cannot. They rely on platelets, plasma and blood to survive day-to-day. A shortage spells disaster.

Many are also relying on a bone marrow transplant for an ultimate cure. And due to travel bans and overwhelmed hospital systems globally, overseas bone marrow donors are now inaccessible indefinitely.

It is painful to imagine Larry's plight if the coronavirus occurred a year earlier.

Let's honour the tremendous courage of kids like Larry by showing ours. Make an appointment at Australia Red Cross Lifeblood today.

Give blood. Give your name to the bone marrow register. Give laughter, hope and life to these incredible kids.

Let's not let cancer treatment become another casualty of the coronavirus crisis.

Jessica Lake is a mother, writer, academic, and member of the Parent's Advisory Group of the Children's Cancer Centre at the Royal Children's Hospital, Melbourne.

Topics:covid-19,diseases-and-disorders,health,blood,children,family-and-children,community-and-society,melbourne-3000,australia

First posted April 12, 2020 05:00:59