From Transplant to Twins!
An extract from the speech that Julie Soon gave at the Allan Frenkel Foundation’s 16th annual fundraising dinner party on the 20th June, 2015. Julie is a mother of twin boys, a corporate lawyer, an Arrow director and a past bone marrow transplant patient.
What are some of the goals you’ve set yourself recently? At any one stage in a person’s life, they have a goal. If you’re at school, it’s probably going to be passing your exams, or, unbeknown to your parents, finding a boyfriend or girlfriend. If you’re at university, it could be about getting a job. At work, it might be getting to the next rung on the corporate ladder or, if that’s not your thing, making it to the next holiday. Or it could be starting a family, or travelling the world once your kids have finally moved out.
In November 2010 I was at a point in my life where I was in between goals. I’d just received a promotion at my firm so my career goal got a tick, and I had my sights set on my next goal which was to get married to my boyfriend of some 5 years, so we could eventually start a family. Before that, I’d planned to have a last hurrah to single life by undertaking a work secondment for a year or two. I was to work in a different city away from family and friends, which I thought would be challenging and exciting since I’d never lived out of home before. Little did I know that something even more challenging awaited me. As part of the preparation for my move, I had a routine blood test in the morning before work. It was a blood test that would change my life in a matter of hours.
I was feeling pretty confident about the results as I considered myself relatively fit. After all, a recent executive health check had noted my biggest health concern as being tight hamstrings. At around 6pm that day of my test I received a phone call from my GP. She wanted to see me immediately. Not being medically trained, I had no idea what to think. Appendix waiting to burst, maybe? Fatty liver perhaps? No one could have prepared me for a diagnosis of Acute Myeloid Leukaemia (AML). AML – in the financial services world, stands for Anti-Money Laundering. I had no idea what AML meant. OK, so Leukaemia, I thought, isn’t that a disease that affects children? Plus, I felt so healthy. I was so sure that the lab technician had mixed up my blood sample that I took my time gathering my things for the hospital. If I was to go to the hospital for a false alarm, I may as well try and look decent should I be examined by a Brad Pitt lookalike in the emergency department.
My arrogance was completely thwarted. Another blood test taken at the hospital confirmed AML and I was admitted that night. I spent the night cowering under rough sheets trying my best to block out the constant groans of a lady in seemingly unbearable pain in a room housing 4 patients.
It was at this point, that my goals suddenly had to shift. The severity of my AML meant that I had to undergo chemotherapy immediately. If left untreated, I would probably only survive for a few weeks, or months at best. What followed were many bouts of chemotherapy, long stays in hospital, and the most unimaginable side effects, including the temporary loss of my sight for a few days. No longer was I trying to figure out what I needed to live in another city, my doctors were now trying to figure out how I was going to live.
Chemotherapy alone offered me a chance of survival, but the chances of relapse were not insignificant. My best chance for survival, I was advised, was to have a bone marrow transplant.
I was fortunate enough to have two matched sister donors and in May 2011 had a transplant at at St Vincent’s Hospital, Sydney, to whom I will be forever thankful. The chances of survival were 80% which sounded pretty good, but 20% is still a pretty big percentage when you’re talking about dying!
My lengthy stay in hospital after the bone marrow transplant was fraught with feelings of anger, helplessness, frustration and despair. As fevers and night sweats kicked in, a burn that ignited in my throat to the point that swallowing was so unbearable that all I could have was pureed food. And you thought hospital was bad – try having hospital food, pureed! Morphine, which was meant to alleviate my pain, actually resulted in me having scary and grotesque hallucinations – not quite the chilled out kind of high most others happily experience!
I first came to know about the Arrow Bone Marrow Transplant Foundation when I received a book from them covering every aspect about bone marrow transplants. You’d think as a lawyer that I’d like to read, but really, I don’t, unless it’s a trashy gossip magazine! It was sort of like a dummies’ guide to bone marrow transplants and was, to me, an invaluable resource to prepare myself for what was ahead.
As part of chemotherapy and the bone marrow transplant I of course, also lost all my hair. It might sound shallow, but for any cancer patient it’s a huge blow, another ugly reminder of an already almost unbearable experience you have to go through. I remember the distress I felt and my sheer desperation as I tried in vain not to touch my hair. It nonetheless fell out in clumps and got thinner and thinner. That’s where Arrow was also able to help me, as they run a free wig library. This was a huge boost for my confidence! Needless to say, once my hair grew back, I didn’t cut it for a very, very, very long time! And when I did, I remember the hairdresser seemed perplexed at how uneven it was! I didn’t have the heart to tell her why!
There are many other ways in which Arrow assists those with leukaemia or other diseases treatable by bone marrow transplants, including research and patient support, and I do encourage you to check out the Arrow website. Its current focus is on raising funds for a new bone marrow transplant ward. From a patient perspective, while the staff at St Vincent’s Hospital were the best that I could have hoped for, there is something to be said about how little dignity a person feels they have when they’re in hospital. There is no privacy, no alone time with loved ones, no time to think on your own, and this is exacerbated by sharing a room. The new ward is not just about patients having a brand spanking new room to themselves. It’s also about having a facility that is cutting edge to maximise patients’ survival with things like negative pressure rooms to lessen the likelihood of patients catching infections from others. More and more advancements means more and more lives saved.
I feel blessed to be speaking today, to have had the privilege of getting married in April 2012 and, with some medical assistance, have twin boys at the end of last year. I do not take for granted the fact that I am here. I do not take for granted that I am now healthy. I do not take for granted my cheeky twins, or my supportive husband.
I’d like to close with two quotes about conquering adversity, both equally inspiring to me, by the famous American President, Franklin D Roosevelt and his wife, Eleanor.
She said: “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face.” He put it this way: “When you come to the end of your rope, tie a knot and hang on!”