Incredible 100 minute walk, against the odds

Toni Mulvaney walked for 100 minutes to raise funds for NFAW. Now, maybe you are thinking ‘I can walk for 100 minutes!’ but when you read Toni’s story below you begin to realise what an incredible achievement this actually was. Thank you Toni, for undertaking such a challenge in order to help us.

Toni’s Story

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. We were so incredibly blessed and despite it being an intense labour with an EMCS in the end to get him into the world he was finally here. We were incredibly lucky that our 3rd IVF/ICSI had resulted in 3 frozen embryos too and when Thomas was 3 months old we signed the paperwork for a FET cycle. It took a bit longer than planned to get going but when Thomas was just over a year old we began our FET 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. I bled from 6 days after transfer (in the end right up to 9 weeks) and was convinced it was another miscarriage and yet that miracle frozen baby clung on and after an even more complex labour we were incredibly 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 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 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 rare type of bone cancer. It was 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 a very rare (1 in 1 million odds) 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 cancer. It had destroyed almost all of my L5 vertebrae 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 as 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 RNOH down in 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 2nd 9 hour surgery a week later, not just physically but mentally. With the 2nd 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 2,5yr 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 2nd time but did end up on HDU for 24hrs 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 and I still to this day don’t think that bond is quite mended. It will take time. 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.

It’s been just over a year, I have had several follow ups, and will continue to for many years as sadly the odds of recurrence are incredibly high, but so far its looking so good. The picture I have attached shows my initial MRI back in August 2016, the one that shocked us all with a comparison photo of my xray post surgery in September 2016. 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. The graft has successfully fused to the L4 and my tailbone and is currently stable. I have my next full body MRI and checkup in February and fingers crossed we get the all clear again then too.

I thought infertility and IVF was a rollercoaster but I think the last year blew all of those emotions out of the water! It’s been one hell of a journey in the last 12 years and I really hope that finally life can be some sort of ‘normal’ at long last.

When I saw your campaign for 100 faces I knew I wanted to take part, having done other media things for you guys and for Bourn Hall themselves, including being on the local news and being a case study online. I also instantly knew that a sponsored walk would be the ultimate challenge after facing the possibility of never walking again. I am supposed to still be taking it easy to an extent and so figured 100 minutes was a good challenge only a year after spinal surgery. I am happy to say that I managed 110 minutes in total, covering 7km and I raised £155. I even had my 2 little helpers with me on the walk with William in the pushchair and Thomas stood on the buggy board (that was a good weight to push too!) and they kept me motivated as to why I was doing this! You can see from the other picture I have attached how pleased we all were for achieving our goal.

I am so pleased to have been able to help on this campaign, I often wonder why I have had so many challenges to face in life and one day it may all become clear, but I do know that if you have a good story to tell, you should tell it. If you can share experiences to help someone else going through a similar journey and offer just a small glimmer of hope or support then its wasted if you don’t. I have never been anything but open and honest about our IVF and infertility struggle, and even more so with my tumour journey and so if there is anything else I can do to raise awareness for you or to help in any way then please do let me know.

Link to Toni’s blog here – https://www.facebook.com/giantcelltumourandme/