Before I begin with my story I would like to thank my amazing husband, Greg, my special parents, my brother & sister in law, my entire family & all my precious friends as well as Suzanne Ackerman, Chris Reed & Anton Smith from Pick n Pay for their incredible support & caring over a very trying time!
In March 2011, literally overnight my world fell apart.
I had been in Cape Town working on a conference, while there I began feeling a bit flu-ish, I put it down to being run down & just carried on. When I got home at the end of the week, I felt really bad & suspected it might be Malaria from a recent work trip; I went to casualty at our local hospital to have a Malaria test. The doctor confirmed it was not malaria but that something was very wrong. She referred me to a haemotologist at the Wits Donald Gordon Medical Centre & without knowing what I was in store for & without saying good- bye to my children I was transferred that afternoon by ambulance. And so our very long journey began.
Following a bone marrow aspiration I was diagnosed with Acute Myeloid Leukemia (AML). My first thought was “what about my little boys?”, thinking that was it & they would grow up without a mom. My husband held me & said “Babes, we will fight this”. And we did!
I had two choices – fight it or give up. I gave the disease the finger & didn’t give up for one second!
Two days after my diagnosis, under anaesthetic I had a port put in for chemo therapy, this is done to prevent your veins collapsing from chemo. I began chemo therapy the next day & stayed in hospital for 7 weeks due to my lung collapsing after the surgery & a severe reaction to the Morphine given for pain relief. In this time I was not able to see my children & could have very few visitors as I was in isolation due to my immune system being severely compromised. I was allowed home for Easter but was back in hospital after becoming ill again, the same thing happened for Mother’s Day. I finally left the hospital for a length of time in June after two sessions of 7 day chemo therapy.
A third bone marrow aspiration showed that I still had some leukemia & my husband was told that medically there was nothing that could be done for me. He kept this news to himself & continued to be strong for me. Miraculously this was not to be & the news changed & the result was positive but I would have to go back for a final chemo treatment.
I went back at the end of June for my third chemo session, following this a bone marrow aspiration revealed that I was in remission! It was the happiest day of my life knowing that what we had gone through thus far had been worth it & I could get on with my life.
It took a long time to get my strength back but within 2 months I was well on the road to being normal.
The journey had to continue, I had to have a bone marrow transplant. An amazing lady, Sister Mary at the hospital began the search for a donor, my brother & cousins were tested but none were a match. The SABMR then continued the search and I was incredibly fortunate to find a German donor in a very short period of time, some people wait years to find a suitable donor & sadly some never do. The match was 100 %, we could go ahead with the transplant, another bone marrow aspiration confirmed I was still in remission.
Together my husband & I made the decision to have the transplant done in Cape Town due the the doctor & hospital being of best in the world for this procedure. It was a tough decision as this meant being away from him & my boys for almost 3 months.
Fortunately my mom was able to come with me & in October we left for Cape Town. I initially had to give my own stem cells in case something happened with my donor. I entered the bone marrow transplant unit to undergo more chemo therapy – this is done to eradicate ones own bone marrow to make place for the new, healthy donor marrow. This is intense & lethal if a transplant does not follow.
Following a week of chemo I had the transplant, this is a simple procedure – like a blood transfusion but is a very special ceremony in the unit as it is not only life saving but is literally life giving. My mom & husband were there to share it with me. My husband flew up every week-end to see me, my Dad came down when he was able to & I was able to see my children through the window of my room when they were down for a week-end. I drew the outline of their hands on my window & this was something I would look at every minute of every day!
Patients are not allowed to leave the unit & have to walk up & down the corridor as much as possible for exercise; this is done one at a time as everybody is in isolation – exercise as difficult as it is at the time is very important to recovery.
Following the transplant it was incredibly tough as there is the fear of rejection of the donor’s marrow, extreme side effects following the lethal dose of chemo but in a record time of 14 days I was discharged. My mom’s daily visits, my children, my husband, my dad & the love & prayers from everybody kept me going. I had to see my doctor weekly, have serum for my immune system for 12 weeks & was on anti rejection medication but day by day I got stronger & stronger & being able to be with my family got me to where I am now.
There were very difficult days where I didn’t want so face anybody & it took months to feel like me again which was difficult for my family. Getting back to work a year later was something I looked forward to but it was strange to go back (for about a day) but I haven’t looked back!
I continue to see my doctor in Johannesburg every 8 weeks or so & my doctor in Cape Town twice this year. These visits will become less frequent once I reach my one year transplant anniversary in October. My donor is my life saver, I will be forever eternally grateful.
To anybody who is diagnosed with a potentially life threatening disease or has a family member who is please know that it is not an easy road & there will be difficult times but you need to be positive, say a lot of prayers, accept people’s kindness, be kind & most importantly take it one day at a time.
To end off I’d like to thank my amazing medical team for all they did for me!
Please please register to become a donor, a simple blood test may save a life.