After many years of trying to have a baby, 9 years later Toni and her husband welcomed their first born, Thomas, into the world followed by William, a little brother for Thomas, two years later. However, 5 weeks after William was born, Toni started to struggle walking.
We struggled for 9 years to have Thomas, having been through 6 of those years with assisted fertility, drugs, injections, ovarian drilling and finally 3 lots of IVF, the 2nd of which resulted in pregnancy, but I miscarried at 7 weeks.
Finally, in May 2014, after almost exactly 9 years from when we decided to try for a baby our precious Thomas arrived. It took a bit longer than planned to start the process but when Thomas was just over a year old we began our frozen cycle with the 3 embryos we had managed to also be blessed with from Thomas's cycle. We didn’t know if it would work and having spent the previous 10 years waiting for 1 baby we didn’t know how long we may have to wait for a 2nd, or if we would even be blessed with a 2nd.
Unfortunately, after thawing all 3 embryos only 1 survived and was transferred back, and we hoped it would stick. We were blessed with the birth of William in March 2016. Life was good and finally, after years and years of heartache and upheaval and feeling like everything was against us, we were finally a family of 4 and it was amazing.
Then when William was only 5 weeks old I started suffering from pins and needles in my left leg, my foot started to get weak and it was a real struggle to walk and move.
At this point, I had a tiny baby, a lively 2 year old and was lugging car seats and pushchairs around, in and out the car etc. It got so bad I could barely leave the house and if I did I had to stop and sit down every 2 minutes, even if that meant on the floor in the middle of Tesco, yes I did do that! I was back and forth to the GP, A&E, ringing 111 and seeing the out of hours GP and yet all they kept telling me was it was sciatica and it would get better. It wasn’t though, it was gradually getting worse and all that kept happening was I was given stronger pain relief every time I complained. In the end, I was on tramadol and diazepam and trying to look after 2 small children. My GP decided enough was enough and I was referred for spinal assessment and an MRI as they started to think I had maybe slipped a disc in labour.
Nothing prepared me for the news that I had a Giant Cell Tumour, a rare type of bone tumour. It is as shocking to say now as it was to hear then. Our world fell apart in that one sentence.
It was a horrific time, I was ‘lucky’ that the tumour is actually very rare and is benign, but it’s incredibly aggressive and destroys everything it can, and often quickly, and therefore is classified as a rare type of bone tumour. It had destroyed almost all of my L5 vertebrae (bottom vertebrae in your back) and my consultant, and everyone I met, were in awe that I had been carrying on lugging car seats about with 2 small children for as long as I was. They said that on paper I shouldn’t have been able to stand let alone anything else. They said if I had left it much longer there was a very real chance I could have been permanently paralysed.
Things moved quickly after that and I was transferred down to the Royal National Orthopaedic Hospital, Stanmore and I underwent 2 very invasive 9 hour operations a week apart in September 2016. The first of which I ended up in intensive care after and had to have 2 blood transfusions. It was a struggle for that week in-between as I had to get myself fit enough again for the second 9 hour surgery a week later, not just physically but mentally. With the second surgery I had to sign a disclaimer with the very real possibility that I may be paralysed, lose one or both legs, or potentially even die. It wasn’t a generalised surgical risk, it was a very real and terrifying possibility and signing consent that day was so incredibly hard. It was supposed to be a happy time, I was on maternity leave with a 2 year old and a 6 month old and yet there I was spending 2 weeks in hospital having lifesaving surgery. I managed to avoid intensive care the second time but did end up on High Dependency Unit for 24 hours and another blood transfusion.
After another week recovering and learning to walk again, I came home. I wasn’t allowed to bend or lift for 6 months, so imagine having a small baby that you can’t pick up, it was heart-breaking. It affected my bond with William massively.
I had lots and lots of help from family and friends, family taking extended leave from their own jobs to be on hand to help me, my amazing husband who became mummy and daddy whilst also trying to work full time and friends offering endless support to us all.
My consultant is a legend, he managed to remove all the tumour, including the vertebrae and both discs either side and replaced with a metal cage and bone chips and several rods and pins for support. At the first post-surgery check-up the graft had successfully fused to the L4 and my tailbone and was stable.
I had several positive follow ups and everything seemed stable, there was even talk of discharging me if I was clear at 2 years which in itself seemed a little daunting. We had been floored by this whirlwind that swept in and out and was then potentially going to be discharged and try forget it happened. I wasn’t really sure how I felt about that.
Unfortunately, I need not have worried as sadly my routine MRI in August, at the magical 2-year mark, showed deterioration and signs that the tumour was back. At the moment its small and not impacting my spinal cord but I am starting to have some leg weakness and back and leg pain along with nerve issues in my right leg and foot.
I am really gutted. I thought I might have been a lucky one that never saw it again but that wasn’t to be.
I am currently waiting for another MRI to compare to the August one to see if there is any change to indicate I need any intervention at this stage or whether we keep monitoring it for now.
I am disappointed, nervous and really don’t want to do all this again but if all those years of infertility and the last 2 years on my tumour journey have taught me anything it's that I am stronger than I think I am and that we will tackle this again, one day at a time.
Click here to follow Toni’s journey on her blog.