I am the youngest of 4, who, while studying Speech Pathology, was diagnosed with leukaemia. After treatment and getting into remission, I was given the choice to have maintenance chemotherapy or have an autologous stem cell transplant, and I chose the latter. Unfortunately, after 13 months, I relapsed and the choices of treatment that were offered before were no longer on the table. I needed more chemotherapy to get into remission, and then I needed a bone marrow transplant, otherwise I would relapse again and die.
The good thing about coming from a big family is that the chances of a bone marrow donor match is likely to be better, as family shares the genetic makeup. The matching of bone marrow relies on markers on your cells called human leukocyte antigens, which is different from your blood type. In fact, they now need to match 10 of these, but in 1999, the magic number to have was at least a 5/6 match. Unfortunately, my siblings matched each other 100%, but I was a 4/6 match to them. This meant that they could not be my donors. My cousins did not match, I did not have any matches in Australia.
I did not have any matches anywhere in the world.
As I mentioned, they could not find any adult bone marrow match, and the situation was grim. It was June, and they booked a transplant bed for October even though they hadn’t found a donor, and this was, as my haematologist described “It would be more of a tragedy to have a donor and no bed than a bed and no donor.”
It was suggested by a patient of my dad’s (he’s a GP) that they think about Cord Blood as a source of haemopoietic stem cells (the stem cells that make your blood). She knew the first child in Australia to receive this, but it had not been done in adults in Australia before.
Cord blood is collected from the umbilical cord after birth – this cord blood is rich in haemopoietic stem cells, and is a resource that is usually discarded. The collection of this cord blood does not cause any harm or discomfort to the mother and baby, but usually only 50 mL is collected and stored. Because of this reason (the finite amount of stem cells collected), it had not been routinely used for adults. At the time, I weighed 45kg, and my haematologist commented that I was only about the size of a big kid, so they started to search through the cord blood banks around the world
One of the major advantages of cord blood is that you can get away with a lower “match.” This is because the baby’s cells in the cord blood are more immature, which means the immune response will not be triggered as badly. After about 5 months of no matches on the adult registries around the world, I had about 3 – 4 matches on the cord blood registries. There were ones found in the UK, in Dusseldorf, but my donor baby was born in St Louis (USA) two years before, which was the year I was diagnosed.
In October 1999, I became the first adult in Australia to receive a bone marrow transplant from cord blood. In the early days, I had some pretty severe side effects, ending up in ICU with an infected central line, and blood counts that did not recover for a long while (platelets in particular). I could not have got through this acute stage without the friends and family that supported, encouraged and sent their love, even when they couldn’t visit.
In the 21 years since, I have travelled quite a bit, finished a PhD and a postdoc position in California, I am the proud aunty of 2 nieces and 5 nephews, and godmother to 3 boys and 1 girl (not all related to me). I have had ongoing chronic side effects, which were caused by the chemotherapy, total body irradiation and other strong medication. I have a hole in my thigh bone near my knee and osteopenia due to the high doses of corticosteroids that I needed at the time, I have had my cataracts done, I have had a year of venesections because my iron levels were too high after years of blood transfusions, my antibodies are low, so am more prone to getting sick. I will always be more prone to getting other types of cancer because of the chemo and irradiation, so I need to get my skin, breasts, bones and blood checked. But I know that even through these long-term side effects that I am very lucky to still be here. I am grateful for the specialists that took a punt on an experimental procedure, without which, I would not be here today. I am thankful for all the hospital staff that worked with me and kept my spirits up – including nurses, the cleaners, the orderlies and the food delivery staff.
I go back once a year to the late-effects clinic, and it’s good to have the continuity of care, the support and the oversight of a dedicated team.
My current role is as a Writer for the Cancer Symptom Trials team. This position gives me the opportunity to write protocols, clinical trial documents, grant and ethics applications to aid the development of clinical trials that address the physical symptoms associated with cancer and its treatment. This is a very personal area for me, as a former cancer patient, I have pretty much been through the gamut of symptoms associated with treatment, and, as I have been in remission for 21 years, all the symptoms that come later in the survivorship stage. For me, giving back and helping others who are going through a similar journey that I went through, with improved medications and preventative measure, makes my work even more satisfying. I know that if I could prevent or help anyone going through the worst symptoms, or just those that I felt were not always well addressed or even acknowledged, then I would not hesitate to help out in any way that I can. And this is the way I can help.
I am passionate about improving the lives of others through medical research, science and advances in treatment and care. I went from working in a lab, trying to attack this from the basic science point of view, but I realised that the further along I got with postdoctoral positions, the further I was getting away from the patient side of why I was doing what I was doing. When I came back to Australia after a postdoc position in the States, I went into clinical trials and became a clinical research associate who monitors the progress and patient safety side of trials. I really enjoyed this work, but it did mean a lot of travel. I found that I was missing nieces’ and nephews’ milestones due to my travel schedule or because I was too tired. I am so pleased to have found a position that allows me to be a part of such important and valuable clinical trials, but also taps into my love of writing.
As mentioned, I first studied Speech Pathology out of school. After my second transplant, I figured maybe that wasn’t what I was meant to do with my life, so I finished with a Health Science degree in Hearing and Speech, and then embarked on Biomedical Science at UTS. As a mature-aged student, I did better than I expected, and ended up getting first class honours and the university medal. After a few years, I went on to complete a PhD in Immunology through Sydney Uni. I usually come back once a year to give a talk to the Transfusion Science students at UTS to go through what a bone marrow transplant is like from the patient’s point of view. They are learning how to cross match for blood and platelet transfusions, and they are learning how to deal with transplant patients who might have had their blood type change after a bone marrow transplant. My blood type changed from B+ to O- and I think it is important for them to see that there is a real person at the receiving end of what they are studying this career path. I was their age when I was sick, so that helps make it easier to relate to.
I am really heartened by the fact that the clinical trials we do are aimed to improve the quality of life of people living with and after cancer. Often, when you are diagnosed, the most important goal is to get rid of the cancer and get you into remission. The symptoms are often just endured because it is what has always been accepted. When I was in hospital, back in the late 90s, I rarely saw any allied health or had symptoms addressed beyond the generic painkillers. Now, there is more emphasis on holistic approaches to treatment and wellness. Addressing the symptoms does not always need to involve medication, it can also include devices and non-pharmacological therapies, such as exercise and meditation, but often high-quality clinical evidence is missing. There is a lot of anecdotal evidence, but without high-quality clinical trials, these cannot be introduced as good clinical practice backed by clinical evidence. Another interesting side for me is to hopefully see some clinical trials to look at some long-term side effects that are often overlooked. When you get to 10 and 20 years out, other specialists are not sure how to address “odd” symptoms that can arise, but that support groups often confess to each other that they suffer.
We are currently conducting separate surveys in adults and children/adolescents/young adults to ask what physical symptoms affect their daily life the most. This will be a powerful resource that will direct future trial ideas and highlight the areas that are not currently addressed or have fallen through the gaps. Giving people living with and after cancer, and their families and carers a voice is impactful and important.
I am always grateful for every day. Even the bad ones, because they make the good ones sweeter
For me, I would like to make a meaningful contribution to the field of medical research, to give back to those that saved my life, and to improve the lives of others who are going through a similar journey that I went through. It doesn’t matter to me where that takes me, but as long as I have a good work/life balance. When you get that sick, and are faced with the very real prospect of dying young, you realise that the only important things in life are the relationships you forge and maintain through life. I celebrate my transplant anniversary every year, and take the opportunity to thank the family and friends who supported me then, that I have met along the way and to remember those that did not make it. Now, 21 years on, we can laugh and reminisce and just enjoy each other’s company. I cherish that.
Find out more about Cancer Symptoms Trials at UTS