Livia's Mum's blog: The Double C Words
Life was wonderful and I say this without arrogance. In January 2018, we welcomed our first child, and first grandchild on both sides of the family, to the world. So, it was not particularly surprising that my daughter Livia was immediately loved by all. She was born healthy and we felt our family was complete and we did not want anything more.
But on 10th February 2020, shortly after Livia’s second birthday, our wonderful life came crashing down. It was a Monday morning, Livia woke up with a temperature that was to change our lives forever. What we (and the GP) initially thought was just another ear infection, actually led to her being diagnosed at Great Ormond Street Hospital (GSOH) with leukemia, just a few weeks later. Childhood Cancer.
It was an acute and aggressive form which meant chemo had to be started almost immediately. Indeed, the latter was started in less than 48 hours whilst more analysis was carried out. Our nightmare worsened when we were told that based on the genotype of the leukemia, Livia was in the high-risk category of relapse and mortality which meant the only treatment to save her was a bone marrow transplant which was required within 3 months - a search for a donor had to begin immediately.
With Livia being the only child with no siblings, my husband and I were both tested for a potential half match in case there was no match from the global database. We knew the search would be difficult because of Livia’s mixed-raced heritage. We were told that a 10/10 match would be absolutely impossible and the best we could hope for would be a 7/10 or 8/10 match, which is less ideal, but our options were limited.
At the beginning of June 2020, after four months of nothing but bad news, and GOSH exhausted the live donor database, we received the news that there was a potential match from a previously donated baby’s umbilical cord in Texas. Following testing, it showed a 9/10 match and was given the go ahead to be used to give Livia the only hope of survival. The transplant was scheduled to happen at the end of June and prior to this transplant, Livia was able to go home for a week for the first time since our nightmare had begun the previous February.
Livia got very sick from the side effects of the chemo while the new stem cells were trying to take hold in her body and we almost lost her a couple of times in July and August. Fortunately, Livia fought all her battles hard with all her might and after a further 3.5 months in hospital, she was finally able to come home in October.
After 9 long months of being poorly and stuck in hospital, Livia had lost the ability to do many simple things, such as walking and eating. We spent the following 8 months getting her back on track, albeit with limited options available to us due to COVID, coupled with the fact that she was immunocompromised. Nevertheless, we received the tremendous news from the doctors who provisionally gave Livia all clear that she was able to re-join society in July 2021. Although we are still a long way from getting the all clear from the cancer and Livia remaining in remission, at least she has started living her life almost like a normal child.
It is not easy to put into words what it is like to have a child diagnosed with cancer and the inclusion of the word “fatality” in every subsequent conversation. The best I could describe it, is life became this big, seemingly boundless forest. It all starts at not being able to see a way out once you have been thrust into the middle of this forest and the whole time all you could hear are the words “Childhood Cancer”. The echo just hits you over and over again, it literally makes you sick in the stomach that you are not able to find your bearings. Then your journey to find a way out begins. How will I get her out of this forest safely? As a parent, you would simply hold them tight, and forward you go, one hard step followed by another. And in that moment, you have to keep moving forward and that is all you can focus on. There is no time to stop and rest, except I did stop. Due to COVID, heartbreakingly only one parent was allowed to stay with Livia and given I was on the floor and unable to bring myself up when we received the news, my husband was the obvious choice to be with her, and so I did not see her for the whole 6 weeks when she received her first phase of chemo. It felt like I had lost my child in the forest, but I knew she was safe with my husband and he was moving forward, holding her twice as tight to make up for my absence.
With more time to think, reality starts to kick in, you now start to notice that you are not alone in this forest. The words “Childhood Cancer” you could hear when you first entered the forest, they were not just coming from you. There are other parents making this same exhausting trek as you and they too are holding their kids close just like you. Some are just a few metres ahead or behind you and some have just arrived in this forest. No matter how strong you may appear to be, you are tired, both physically and mentally. You realise there is no shortcut in this forest to get your child out as quickly as possible, so you have no choice but trek furiously in the hope that if you can get them out, they could live. You look onto the parents that are furthest away from you and you wonder when that will be you and your child. The thought of being that far ahead motivates you so much that you hold your child tighter and continue to trek. As you continue your journey, you suddenly notice some parents are wandering the forest with no child in their arms. The panic immediately shivers down your entire body but you must hold your child even tighter so she knows we are still fighting. Despite our experience, we are very fortunate because we have made it out of the forest (for now), thankful to a couple in the US generously decided to donate their little boy’s umbilical cord to their local cord blood bank 11 years ago.
One of the worst parts of this journey is you never know when you will end up in the middle of the forest again. There is simply no guarantee when it comes to this chilling forest I call Childhood Cancer. After a while, you realise this forest is full of parents and children trying to get out. Despite so many parents and children in there, no one on the outside the forest could see them unless they happen to drive pass one of the very few lanes nearby.
Although Childhood Cancer is rare, there are still 1,800 new cases being diagnosed every year in the UK. This means that around 1 child in 500 will develop some form of cancer by the age of 14 years.
Currently, we urgently need more people from minority ethnic backgrounds to sign up as stem cell donors. Patients who are White Caucasian have almost 80% chance of finding the best match from an unrelated donor. This drops to a less than 40% chance for patients from minority ethnic backgrounds.
Leukaemia is a unique cancer in the sense that we all can make a difference. Simply by donating blood or registering yourself with DKMS or Anthony Nolan (both stem cell register in the UK, with DKMS accepting people aged up to 55), you could save lives and help people get out of this “forest”. The latter could not be easier, it is easier than doing a COVID test! A simple act of kindness could potentially make a huge difference to the survival to all blood cancer patients like Livia. Only 2% of people in the UK are registered as stem cell donors. This compares to 13% in Cyprus and 9% in Germany. Together, we can beat Cancer!
Livia’s mum and dad are both bankers, and Mum has worked in the City for around 18 years in the insurance/banking industry. She is now an advocator of Childhood Cancers. Please register here as a potential stem cell donor with DKMS and you could save a life like Livia's.