A Westbrook mum has written an emotional account of discovering her eight-year-old daughter has a rare cancer that affects blood and bone marrow.
Keisha Pile-Gray writes of the devastating discovery that came just weeks after eight-year-old daughter Aurora complained her chin was hurting.
On a justgiving page set up by a friend, which has smashed through its £2,000 target and now stands at £13, 580, Keisha writes:
Everyone thinks that their child is perfect, but mine really is.
Sassy? Yes. Annoying? Yes. Overly dramatic about the tiniest of inconveniences? Absolutely. But as a whole, you couldn’t find a funnier, more outgoing and engaging little girl. Well mannered, polite and as beautiful as they come, Aurora is the full package, and people absolutely adore her.
As a mother, you really only have one thing that matters in life. Their happiness. And I promise you, in the grand scheme of things, nothing else really comes close. I never wanted children, but if you’d asked me a week ago, I would’ve told you I’d have 100 more. Regardless of the fact that they are tiring, stressful, have no idea of personal space and drain every last ounce of patience I have, I would be nothing without them. I literally have no idea, what I would do.
It’s like when you plan a night out for the first time in a while, an adult night out! You find a baby sitter, get yourself dressed up, go out, dance, have a few drinks.. only to make it home by 11pm and miss being woken up to little cries or noisy screams the next morning. There really isn’t anything that could come close to the love you have for the little people you made, as annoying as they can be.
Sometimes you resent them, sometimes you barely even like them, but all the time, you love them. Their quirky ways, funny remarks and childish attitudes really are the best times of our lives and sometimes we take it for granted.
As a mum, well, a parent we have a responsibility. Our job: To love our kids, keep them safe and to make them feel loved and safe too, because they are two very different things. Naturally when we fail at this job, we feel like a failure at everything. It’s easy to tell ourselves we’re not good enough, they deserve better, and feelings of guilt are overwhelming and buckling.
This can happen with the simplest of things, falling over and scraping their knee (despite the fact you told them to be careful), struggling at school, failing at sports, not being around as much as we should, and not being able to help them feel better when they’re sick.
As it goes, Aurora was the picture of good health. She’d never been ill as far as I could remember. Other than the odd runny nose and cough in the winter, she was always healthy. In fact, she was so healthy that I can remember pretty much every time she was sick because it was such a significant event in my life. I remember the chicken pox of 2014, the sickness bug of 2017, and now, almost every single day of 2020.
When your baby is ill you really do feel helpless but when your child is getting progressively, seriously ill you feel every thing. You never think it’s going to happen to you and there’s never a way you can mentally be prepared for a serious diagnosis of a child, until it happens.
4 weeks ago
“My chin hurts”
“My lips are sore”
“It feels like I’ve got a rash there”
“Mummy, my teeth are hurting”
As all kids do, Aurora was complaining, every, single day. She was constantly telling us that she was in pain and her chin was sore. It’s one thing for your child to be unwell, it’s completely different when they’re unwell in a pandemic and you are supposed to be following social distancing guidelines which means dentists are closed and doctors won’t see you but will give you a telephone consultation.
It was the same every single night and every single night it was another paracetamol, another cuddle, another sigh or eye roll because it’s all we had heard about all day. But, as parents that’s what we do sometimes. “Go to bed”. “Okay get some sleep”.”See what it’s like in the morning”.
But every morning was the same for over a week. It wasn’t until 21st April as we sat watching TV that Aurora told me she’d found a lump on her neck. As all parents do, I panicked, I didn’t think the worst but I called the doctor, and I spoke to a friend who’s son has similar symptoms months before.
Aurora wasn’t ill though, she was still upbeat and happy, no temperature, just in pain with a giant golfball sized lump under her ear… We took a trip to the GP and got a course of antibiotics.
Reluctantly, we forced them down her, but by the end of the course she was ill. Very ill. She was asleep 20 hours a day and when she was awake, all she did was complain about her chin. It was tiring to say the least but by day 7, her lump had doubled in size and she had another to match on the other side.
Another trip to the GP led us to A&E. An Ultrasound led us back to a swollen lymph node and that led us back to even more antibiotics because apparently the first lot we were given were wrong… But a mother’s instinct is always right.
On day 8 of antibiotics, Aurora was sleeping the majority of the day. When she wasn’t asleep, she was quiet, upset and in pain and would curl up on the sofa or in my bed with me. Aurora is never ill.. so when it got to the point that she feels she needs to get in bed with me I knew something was up. I made room for her next to me and her brother and cuddled her all night even when she woke up sweating.
By day 9 auroras chin was more painful than ever and the tears were constant. She kept taking herself downstairs to rest so she could sleep propped up to help with her breathing and by the night time we had to take a syringe to her nose to rid her of a blood clot. She slept beside me all night again, not that you could call it sleep. Even in her dreams she whimpered in pain and was hurting which meant she was up every other hour.
On the morning of day 10, she was well and truly wiped out. She was irritable, tired and trying to get her to eat or drink was impossible. Her chin still hurt. Her lips were drying out and no amount of painkillers helped her. When I shone a light to check her nose she winced away saying that the it hurt her eyes and she wanted her headaches to go away. We ran her a bath and put her back to bed where she managed to sleep most of the morning then went back to A&E for answers.
Seven hours passed before the doctor finally assessed us and took a look at her lumps. I showed him photos of how they’d progressed, what we pulled from her nose, and told him of her aches, pains and all other symptoms, just to be told to go home, finish the course of antibiotics and see how she is after a week for another ultrasound. I questioned this. I told him that she’s been on antibiotics for 10 days and isn’t getting better at all, just getting worse. He asked what I suggested, but I reminded him that I wasn’t a doctor but I knew it was something more than an infection.
After another hours wait a second doctor came to see us and agreed for Aurora to be admitted. To check the ultrasound and get her on fluids to help with dehydration, not realising the severity of what has already happened.
Rory quickly spiralled downhill from there and in 72 hours we went from being told that it was a high possibility of a viral infection, to being blue lighted by ambulance to a specialist hospital in London.
On day 11 Aurora developed double vision, became anaemic and her platelets began dropping. She was taken for an hour long MRI of her head and had blood tests throughout the day. By the afternoon her right eye had stopped working properly and she couldn’t see sometimes. She was dosed up on pain meds, and despite an hour of her perking up in the afternoon. She slept all through the night.
Day 12 came and we were told Aurora’s kidneys were struggling to function. An ultrasound revealed that she looked okay, but that her creatinine levels were high and she needed extra fluid. When the doctor came to see me, she pulled me into another room to discuss what was going on.
Due to Auroras range of symptoms she felt that she would need to be seen by a range of specialists to pin point a diagnosis. Viral infection was still at the top of the list but they would also have to involve rheumatoid, to rule out autoimmune, renal specialist to examine her kidneys and oncology to rule out cancer. The doctor explained her white blood cells looked okay at the moment so cancer was low on the list, but they wanted to cover all bases. I spoke about her eyes and her neurological symptoms which led to the doctor confirming we’d have to be transferred to Evalina within the next 48 hours
Rory continued to get worse through the day. We pulled more clots from her nose, she refused to drink, and slept through everything. I went home to pack and gave the kids a cuddle before going back to the ward and sitting with Rory. At 5pm I was called again to sit with the doctor.
Her blood results had come back suggesting that there was abnormalities in her white blood cells. She said that she couldn’t be sure which, but our little girl had cancer.
There’s no preparing for a diagnosis like that. There’s no way to prepare your child for a diagnosis like that, and there’s no way to prepare for how quickly you have to move to catch it. By 9:00pm we were in an ambulance on our way to London. We were told it was because there was a bed available, but quickly learnt it was because she would need surgery within the next 24 hours. Everything has moved at 100mph and it’s been an emotional rollercoaster.
In the last 48 hours Aurora has undergone a bone marrow biopsy, lymph node biopsy and lumbar puncture for spinal fluid. She has had a central line fitted and received her first 2 doses of chemotherapy one directly into her spinal fluid and the other through an IV. Her kidneys have continued to deteriorate which suggests she might need dialysis, and as a family we’ve been told she will need at least 6 months of treatment in London. This also means shielding for the next 6 months to minmise the risk of infection, for everyone in the household.
My heart is breaking, but not for myself. I’m sad for everyone else. I’m sad for Aurora who keeps telling me she wishes she never got poorly. Who’s has to come to terms with being in and out of surgery, the likelihood of having a feeding tube, and that she’s going to lose her hair. I’m sad for my two babies who aren’t going to see their mum for weeks at a time. I’m sad for Ethan who took us all on and is keeping the family together. And I’m sad for everyone who loves Aurora as much as I do. I’m sad that 2020 has brought nothing positive and I’m especially sad that this year in particular has made things hard.
Aurora has been diagnosed with Burkitt’s Lukemia affecting 28% of her bone marrow. The common consensus is that it has been caught early, and prognosis is nothing but positive. I feel privileged that I have so much emotional support around me at this really hard time and that even though I’m alone, I know we are loved and looked after. Social distancing procedures have made this extra hard for now, but we know we can do this. We’ve got a fight on our hands, but we’ve got nothing but strength.
UPDATE (May 13)
The doctor and consultant have been to update us and to see Aurora. She has responded so well to pre-treatment so far that her bone marrow is officially clear of cancer cells! Now they just have to monitor how her bone marrow produces the new cells and whether these are cancerous.
They have reassessed her MRI from Margate which shows that the tumour has affected the nerve in her brain however, if her bone marrow is anything to go by then it’s likely her tumour has also shrunk.
The X-ray and ultrasound taken show that her lungs and kidneys have been infected by the disease. They’re confident that she is responding well to the medication she has been given so far though and that these will improve with the treatment too.
She has had her kidney function test and will be going down for her lumbar puncture soon but has to have a potassium infusion first as it is a bit low.
Providing her kidney function test is okay she will be starting her Methotrexate today and her Rimuxitab too so we will start seeing her get sicker.
On Friday she has her third Lumbar Puncture this week and they will also be inserting her feeding tube. The play therapist is going to come and speak to her about it today but she is already getting mouth sores and the chemo drugs are due to make them a lot worse. She’s a bit upset about the tube at the moment and really tired, but she’s taken things well.