Cara Ella’s Journey- Guest post by Isobel

On the 30th of September 2017 I took my 14 month old daughter into the Urgent Care unit of our local hospital in Durham and waited to be seen whilst she filled the corridors with echoing wails, writhing around in pain in my arms after yet another sleepless night. Up until now we’d had five fruitless trips to our local GP. After days of tests, scans and investigations we waited in Cara’s hospital room and two paediatricians entered, this time sitting down to speak. There were few seats available so one perched on a metal hospital bin, a nurse also by his side. Tom and I exchanged concerned glances as one doctor began to talk. The noise around us continued; beeps from the machine, Cara crying, background ward noise from other rooms. I tried to concentrate on what he was saying and I heard him utter the word, cancer. Within an hour we were being bundled into an ambulance to head up to the Royal Victoria Infirmary in Newcastle where a specialist team would be waiting for us and where our daughter would eventually be diagnosed with Stage 3 Neuroblastoma.

Cara’s first stay in hospital lasted for four weeks culminating in her first round of chemotherapy. We were in a whole new world. It was overwhelming becoming part of the Cancer Ward. Looking back this was probably the most difficult time for us as a family because of the sudden switch to such a serious situation and the vulnerability we felt for Cara’s life. It was all so hard to bear whilst trying to hold ourselves together for Cara and her six year old brother Magnus. There was also something weighing on my shoulders, something that I didn’t share with Tom. I believed that I was pregnant with our third child.

During these weeks Cara had stopped speaking and just lay in the cot either sleeping or quietly looking out at us. It broke our hearts. We looked on helplessly. She had an NG tube pushed up her nose and down her throat to her stomach so that she could be fed and given medicines via the tube. She went under general anaesthetic three times in a week so that scans could be carried out, a biopsy, a bone marrow test and a new line to give direct access to her bloodstream, inserted directly into a main artery. She was given blood at the first opportunity and I sat next to her gratefully wondering about the person who’d donated it. We couldn’t keep up with what was happening and we were desperately trying to make sense of everything. After 3 weeks in hospital I finally found the courage to take a test and it was indeed positive. How was I ever going to bring another child into the world in the midst of chemotherapy, surgery, radiotherapy, treatment that would take over our lives for the next year at least…?

On the 4th of January 2018 Tom and I were heading back to Durham for our 20 week scan. Tom’s enthusiasm never wavered and he kept encouraging me, telling me how good this would be for us all. The baby, who we planned to name Sofia, would be due in May 2018, just about when I was set to go into hospital with Cara for 4-8 weeks of high-dose chemotherapy. I kept telling myself that I would cope and I had really started to feel excited about the baby’s arrival and how blessed we were to be bringing another child into the world. We entered the room where the scan was taking place and I got up onto the bed. Tom placed his hand in mine and sat to the left of me while the doctor put the probe onto my stomach. We all shared a smile as an image started to come up onto the screen beside us but no sooner had the screen come on than the doctor swiftly turned it off. I looked about in confusion. The doctor removed the probe from my tummy and wiped it down as she told us that she was very sorry but there was no heartbeat. The baby had died.

I felt in some way responsible for the baby’s failure to survive. I’d failed her. I hadn’t faced up to the pregnancy, I hadn’t even told Tom I was pregnant until I was ten weeks and I only shared the news more generally when the nurses started noticing at about 16 weeks. I hadn’t taken supplements for vitamins as I’d been too busy to organise them and they’d only just arrived for me to collect a week earlier. I was about to have to go through induced labour for my baby that no longer lived. It felt wrong being on the delivery ward. It suddenly occurred to me that this went on. People came onto this ward and delivered a baby and then went home without one. It felt so bloody unfair.

The baby arrived and she was wrapped in a blanket and brought over to us, so tiny and fragile. I felt utterly heartbroken. Tom took her over to the sofa and sat cradling her in his arms, tears in his eyes. I lay helplessly on the bed just longing for a different outcome. Then they took her away and told us we would be given photographs. Not much to be going home with after everything. We had to explain the crushing news to Magnus and Cara, that they would not be welcoming a baby sister after all.

The next six months saw Cara battle through intense treatment the worst of which was seeing her vulnerable little scarred body after 10 hours of surgery to remove the tumour which was initially the size of a grapefruit before chemotherapy. She went on to endure high-dose chemotherapy, stem cell rescue, radiotherapy and finally immunotherapy. The treatment lasted 19 months.

Six months on from losing our beautiful daughter Sofia I had discovered that I was once again pregnant. I was ecstatic to be expecting again. On the 1st of May 2019 Cara jubilantly rang the bell for the end of treatment and on the 20th of May I delivered a healthy baby girl whom we named Astrid. I can only describe this time in our lives as an incredibly happy phase and for the first time in a long time we weren’t worrying about Cara or what lay ahead but instead we were focused on making happy memories and living our best life firmly in the moment.

But just three months later we received the most shattering news imaginable, Cara had relapsed and had a new tumour measuring 6cm in her abdomen and pushing into her left kidney. She was happily playing outside in the waiting area with a charity social worker who she’d grown to love and we were in with her consultant being given Cara’s dire prognosis.

We pressed on with treatment despite being warned that a positive outcome was unlikely and on the 29th of February 2020, just seven months after relapse Cara sadly passed away. When Cara was ill things were always up in the air and life was unpredictable at the best of times so when we were told that Cara’s requiem funeral mass would have to be cancelled due to the onset of Coronavirus we weren’t surprised. I tried not to be disappointed because the worst had already happened.

As grief overcame my life other feelings bubbled to the surface and could be acknowledged for the first time in a long time. On top of the devastation that I was feeling for Cara there was a yearning for the baby daughter we lost in the midst of Cara’s illness. Never before in the twenty five months that had passed since she’d been born sleeping had I really had the chance to grieve properly for our second daughter Sofia. Treatment had taken so much out of us that we had little time to process the loss. This all resurfaced when Cara died and I was genuinely relived that it did. I think I’d been harbouring a great deal of guilt about the lack of time I had seemingly dedicated to grieving for her. With Cara we had an abundance of memories to cherish but with Sofia the memories were never made. We still had to bury our child but instead of having time after the service to process our thoughts and emotions we were transported right back into hospital life and the high demands of Cara’s treatment.

Life has been unbearable at times, all of the firsts, first birthday, first Christmas, first holiday without Cara has been torturous but I have had to pick myself up for Magnus and Astrid and bit by bit I am learning to live with the situation as it is now. I was told by a friend who also lost a child, ‘you’ll walk through life, but you’ll always have a limp’.

Isobel x

Instagram~ @cara_ellas_journey