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Updated 14 August 2014

CML: A journey of hope

It’s been a journey of hope for Emma Thomson, who was just 10 years old when she was diagnosed with Chronic Myeloid Leukaemia (CML).

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It’s been a journey of hope for Emma Thomson, who was just 10 years old when she was diagnosed with Chronic Myeloid Leukaemia (CML), a type of cancer affecting about 2 per 100 000 1 people.

Emma’s parents, Anne and George, suspected that something was wrong when her stomach became distended.

A trip to the doctor though, did little to ease their uncertainty – the doctor put it down to her having a bad cold. Her father George, didn’t accept the diagnosis. 

Instead, he thought that her symptoms might be related to a food sensitivity and requested that a set of blood tests be sent off to a laboratory.

Discovering the disease

 “The laboratory said they could not do the test because there were too many white cells and suggested it may be leukaemia,” he says. “We were stunned.”

Emma had a full blood test and her white cell count was above 200,000 cells per microlitre – way higher than the normal range of 4 000 to 11 000. The diagnosis was CML, a disease that affects the bone marrow and causes it to produce an excess number of faulty white blood cells. 

Because CML causes visual changes to chromosomes 9 and 22, the diagnosis was immediate. These excess cells had accumulated in Emma’s spleen, causing it to swell. “The news was devastating,” says Anne. “We were all very scared and didn’t know what to expect.”

After being diagnosed, Emma was admitted to hospital over the weekend. She was given an intensive course of chemotherapy to bring down the number of white blood cells in her body. 

Success rare in children

Although there were long-term medicines available, their success had not yet been established in children, in whom CML is rare.

Given her age and good prospects of recovery, doctors suggested that she undergo a stem cell transplant as this would dramatically increase her chances of longer term survival. Emma underwent further tests, known as tissue typing, to determine whether a potential donor could be found. 

A stem cell transplant involves chemotherapy and body irradiation which destroys the marrow and immune system, after which stem cells are then introduced from a matched donor to replace the stem cells in the bone marrow. Stem cells are harvested from the donor’s blood and transferred to the patient. 

Finding a match

After four months of searching for a match in the world’s donor banks, The South African Bone Marrow Registry found two matches for Emma - one in England, and another in Australia.

Normally, the stem cells from a donor are transported by courier to the patient, but the Thomson family chose the younger donor in England and after much deliberation, decided to move there for the duration of Emma’s treatment. 

“At that stage we didn’t know if we would need to stay in UK for months or years, but we had visited Bristol Children’s Hospital, and thought their post-operative care was really outstanding,” says George.

In preparation for the stem cell transplant, Emma was given chemotherapy and exposed to total body radiation to kill off as many of the cancerous blood cells as possible. During this time, she experienced many side effects, one of them being hair loss. The hospital also removed all her baby ‘milk’ teeth, to avoid possible infection.

Recovering

After the donor’s stem cells had been fed intravenously into Emma, it took between two and three weeks for her own body to begin to produce healthy blood cells. Emma’s parents made sure that one of them was by her bedside 24/7. 

“Patients undergoing this type of therapy need constant support, as they are hooked up to a range of machines and need help to perform simple tasks, such as going to the bathroom,” says George. “It was also good to provide company during this difficult time.”

The family made sure that Emma, with her suppressed immune system, avoided shopping malls, cinemas and other public places to minimise the risk of infection.

Having ups and downs

“There were ups and downs, as nine months later her own immune system became confused and Emma fell very ill,” recalls Anne. “But after treatment with steroids, she recovered and continued to get better.” In 2007/08 she had another treatment – a Donor Lymphocyte Infusion to eliminate some residual leukaemic cells.

Four years after she was first diagnosed, doctors declared Emma free of CML. This meant no trace of cancerous cells could be found. “There is very little chance of a secondary infection occurring,” says her dad.

The family moved back to South Africa in mid-2009 and have enjoyed settling back into a normal routine. 

“Emma’s illness was hard on her brother too, who not only had to cope with a sick sister, but the upheaval of moving school, home and country when she was first diagnosed,” admits George. 

But with Emma enjoying horse riding and spending time with her friends, the memories of her long stay in hospital are slowly fading. 

Keeping Emma healthy

“We keep an eye on Emma to make sure she stays healthy,” says her mom. “She takes multivitamins as well as growth hormones and thyroid supplements to counteract the after-effects of radiation on the body. These are daily reminders of what she went through.”

UK law requires that donors remain anonymous and prevents donors and recipients from meeting after a transplant, but Emma has kept in anonymous contact with her donor through the hospital. “We’re so grateful to her donor,” says George. “Without her, Emma may not be around today.”

Compared to the bone marrow transplants of the past in which the marrow was removed from the donor with a large syringe and injected into the recipient – an extremely painful process - these days the “harvesting” process is simple. Donors are attached to a drip and doctors harvest the required stem cells from their blood. 

“One side effect of donating stem cells is that the donor may develop some flu-like symptoms, though these soon disappear,” says George.

Emma’s letter

He recalls Emma’s first letter to her donor, written about three weeks after the transplant:

“Dear Donor

Thank you for giving me a second chance in life, I promise to make the most of it.

Love from Me.”  

After being diagnosed in 2004 and receiving intensive treatment over the past few years, Emma was finally cured in 2008. Although she goes for six monthly check-ups, she now lives a full and busy life in Cape Town with her family. 

Says George: “When Emma was first diagnosed, the word ‘terminal’ illness hung over us like a dark cloud, but after everything we’ve been through, we now understand that CML is treatable and that there is light at the end of the tunnel.”

Tips for parents caring for a child with Leukaemia

Arm yourself with knowledge. Find out as much as you can about the disease and its treatment. Use the internet to connect with experts and doctors locally and overseas. 

  • Find support. There are numerous support groups, such as People Living with Cancer where you can share and express your worries and frustrations. Keep your friends and family in the loop by sending out regular updates.
  • Consider the financial implications. Treating cancer can be expensive so make sure you understand the oncology benefits your medical aid offers and what treatments they cover. Speak to your financial advisor about how best to fund any additional costs.
  • Register with a donor registry. The Sunflower Foundation Fund (www.sunflowerfund.org.za) aims to build up a database of 100,000 donors in the South African Bone Marrow Registry. Helping others in a similar situation can boost your spirit.
  • Look after yourself: Don’t feel guilty about treating yourself to a facial or massage or taking time out to exercise – you will be more supportive if you’re in a good mental space yourself. Watching your diet is also important as it will help you cope with the additional stresses of caring for a sick child and fighting off illnesses. 

References

1)      Druker BJ, LeeSJ. Chronic Leukaemias. In: De Vita VT, Hellman S, Rosenberg SA, eds. Cancer: Principles and Practice of Oncology, 7th ed. Philadelphia, Lippincott Williams & Wilkins: 2004: 2121-2154.

Read more:
Survivor!

(Bespoke Comm for Novartis, October 2010)

 
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