Leukaemia: My blood cancer came back
Kristine Lawn was diagnosed with a blood cancer called leukaemia in 2014. The following are all Kristine’s words, shared with the Leukaemia Foundation to help raise awareness of blood cancer during September’s Blood Cancer Awareness Month. You can share your story, too, by clicking here.
In February 2014 I turned 40 and my three boys were 20, nine and six. My two grandchildren were just three and nine months.
I had felt “off” for a couple of weeks, then people started commenting that I was pale and looked tired, which I put down to long hours training to be a chef.
I went to visit my GP. He looked at me in the packed waiting room and called me in next even though it wasn’t my turn. Before I had even sat down, he said, “You’re anaemic and I’m doing a blood test.” I thought maybe I was a bit low in iron. That same Saturday afternoon, my GP called back and confirmed I was anaemic and that I needed a blood transfusion immediately. He contacted the hospital and sent me the results to take with me.
I was taken in straight away, and all the usual poking and prodding began. That night I received three bags of blood and was transferred to a ward. On Sunday, I met with a haematology team telling me something was wrong with my blood and a bone marrow biopsy the next day would give us a definitive result.
Bone marrow biopsy
At 10am I had the biopsy − which very painful − and at 3pm, I swear 100 medical staff walked into my room. I knew it wasn’t good and told them not to sugar-coat it. I wanted them to tell me what’s going on, not my family. The doctor said, “You have leukaemia. AML – acute myeloid leukaemia. A rare and aggressive cancer.” This started a roller coaster of a journey which I’m still riding five years later.
Within 48 hours, I had countless blood tests, x-rays, ECGs, and began the first of eight rounds of chemo. Amongst all the blood transfusions, chemo, and months spent in hospital, I had to stop my chef training and stop work. I had a lot of complications with ventral lines and ended up with blood clots several times.
By November, I was in remission and my central line was removed. I occasionally needed blood transfusions, but all was going well.
In July 2015, I was making plans to get back to TAFE and work when I had a niggling feeling. I went to my GP and asked him to humour me and do a full blood count. He said I was looking good − I had colour and my oxygen levels were fine, but he did the test anyway. I was out with girlfriends, again it was a Saturday, and the call came in. I knew it wasn’t good news as your GP does not ring at 7.30pm on a Saturday evening to say ‘hi’. He told me my bloods weren’t good, and to go to hospital immediately.
It was déjà vu.
Blood cancer relapse
I had a bone marrow biopsy to confirm my worst fears, and yes, good old AML was back. Even my haematologist was visibly upset. Then came the news. I needed to go through chemo all over again to get me into remission, then my only chance for survival was a bone marrow/stem cell transplant.
One of my sisters was a full match, so we embarked on another enormous round of testing. I had to transfer from Nepean Hospital to Westmead [both in Sydney], where transplants are performed.
They had to keep me in remission in order to have the transplant. The Westmead transplant team told me how unwell I actually was, and they had never seen or done a chemo regime as tough as mine.
I was admitted on 9 November for nine days of conditioning therapy, to prepare my body for transplant. The actual infusion of my sister’s cells was just like getting a blood transfusion − nothing exciting. Then came ‘day 3’ and beyond. My mouth was full of mucositis and ulcers, so I had to be tube fed, with my meds crushed and squeezed down my throat or through my nasogastric tube.
I think I got to about day 15 without having much recollection of that time. I was highly medicated on fentanyl and ketamine. I know my kids were snuck in − as they don’t let kids under 12 in the ward − to say goodbye. I wasn’t coming home. After the two weeks, I woke up looking at the face of one of my doctors from Penrith. I think we both teared up. He had been watching me and waiting for me to wake up.
Graft vs host disease
They gave me a few hours out on Christmas Day. My oldest son came to pick me up and we surprised the family. I also came home the week of New Year’s and I lasted about five days, then was back in for a check-up and re-admitted to the transplant ward because I was running a temp.
I had developed a condition called ‘c-diff’ (which is a form of colitis) and GVHD (graft vs host disease) where your body fights the new cells.
Eventually I got to go home the week of Easter 2016.
Everyday that I spent in hospital having transplant, Lauren from the Leukaemia Foundation visited me. Those visits were a big part of my recovery & kept me going.
Since then, I’ve had many ups and downs. My GVHD is chronic and is in my eyes, mouth, liver, lungs, kidneys and gut. I also now have an autoimmune disease called scleroderma. I was given a trial drug under compassionate grounds for my GVHD and scleroderma. After a few months on it, I injured myself and the trial drug caused an internal bleed. I was taken off this drug and my steroids were increased significantly. About two weeks later, I was back in hospital unable to walk with an infection from the internal bleed.
Going home after cancer
While healing, I started rehab to get my legs moving. We thought our best option was to go private, and I was transferred to a rehab hospital.
I spent three weeks in rehab, with a stint back in Westmead for the infection. By October 2018, I was home.
I am walking with mobility aids but getting better everyday. I still have IVIG – intravenous immunoglobulin infusions – every four weeks, and with the GVHD we are trying new things to settle it down.
My team at Westmead are amazing & look after me very well.Last updated on September 5th, 2019
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