My story
For the first three months, we settled into a new routine, getting to grips with the roles and responsibilities of being new parents, but shortly after the standard 8-week GP check-up, we noticed that Theía's chest, just below the ribcage, was beginning to look distended and was very firm to the touch.
Our concern mounted, and so began regular calls to 111, the GP surgery and Health Visitor. After multiple failed attempts to get Theía physically seen by a medical professional during the start of the coronavirus pandemic, our GP practice finally allocated us a face-to-face appointment where we were immediately referred to Kingston hospital pediatric A&E for an ultrasound.
The ultrasound established that Theía's liver was enlarged, tests were inconclusive, and many doctors suggested she could have a metabolic condition, perhaps even requiring a liver transplant. Eventually, Kingston Hospital transferred care to Kings College Hospital for a liver biopsy under general anaesthetic for a definitive diagnosis. Over a week passed as we awaited the results. Our bright and beautiful daughter began to decline during this time, she stopped smiling, and her milk intake steadily decreased. With no indication as to when the tests would be back from the lab, we rushed her back to A&E at King's - Theía was drifting in and out of consciousness, and her distended chest was still growing in size.
While in the children's A&E at the hospital, we finally got the consultant's call who performed the biopsy. It was a diagnosis of neuroblastoma. It was a relief to have a diagnosis, but the gravity of the situation was yet to sink in.
Neuroblastoma is a rare type of childhood cancer that develops from the cells left behind from a baby's development in the womb. The tumour had metastasised in her liver and was now severely compromising her breathing.
Shortly after getting this call, Michael was told that due to COVID restrictions, he would not be able to stay with us while we awaited transfer nor accompany us to Great Ormond Street. He had to say goodbye to us both at A&E, leaving me to face this news alone, all while I watched my 14-week old daughter's condition worsen.
Theía further declined after we were admitted to King's to await transfer but transfer to Great Ormond Street was delayed due to her fragility, and we spent the next 24 hours on the ICU unit there - it was clear she required urgent chemotherapy.
King's College finally managed to stabilise Theía's condition, and the two of us were moved by a children's ambulance to Elephant Ward at Great Ormond Street Hospital. The country was now firmly in the grips of the first coronavirus peak and national lockdown, making matters worse.
As we'd been experienced at King's, only one parent was allowed to accompany the patient, except now we were now facing an indeterminable length stay at GOSH. Michael had to stay at home, and he couldn't see Theía or me for over a month. I would video call him daily, but needless to say, this was very hard on all of us.
Many of the events that took place are a bit of a blur to me. There were numerous occasions where I completely disassociated with what was happening around me. There isn't much that compares to seeing your 14-week old baby become ravaged by a tumour during a global pandemic while you live for an undetermined amount of time in a hospital where no one can visit or support you, not even your husband.
One of the most traumatic experiences revolved around the medical team trying to insert a central intravenous line; children's veins are small and fragile, particularly when administering chemo, and before this, there had been many failed attempts to insert a cannula into any of Theía's veins. These previous attempts had been individually horrendous to bear witness to, with King's Hospital eventually resorting to putting one into a vein in her head after shaving off a small patch of hair.
The day after we arrived at Great Ormond Street Hospital, Theía underwent her second general anaesthetic and was fitted with a double-lumen central intravenous line, otherwise known as a Hickman line. This is a long, flexible plastic tube inserted underneath the chest wall skin into a large vein draining into the heart. The Hickman Line, while initially alarming to learn about - let alone see inserted into such a tiny baby - made giving fluids and medicine, or taking blood for testing, much more manageable and painless for Theía, as the doctors and nurses didn't need to find a vein each time or risk a vein collapsing from continuous use.
These central lines, (Hickman being one of them), are used for a wide variety of childhood illnesses. The majority of children on our cancer ward had one, and they can stay in place for many months, some even years. Thankfully Theía only needed two courses of chemotherapy; however, we found ourselves living with the line for a lot longer than it was initially required, five months in total. By the time the line was removed, she had lived with it for longer than she had lived without it.
As Theía started to recover, she was discharged into the community nursing team's care and allowed home. We had weekly visits from the PONT (pediatric oncology nursing team) to flush the line and change the dressings, all to lower the risk of infection - something that is a genuine and grave concern for any child with a Hickman line, let alone one who has a weakened immune system due to chemotherapy.
For five months, Theía managed to avoid an infection in her line, and it is the firm belief of not just Michael and me, but also her doctors and nurses, that this was down to how we managed its day-to-day care.
Shortly after Theía's line was inserted, I began to search the internet for something she could wear to keep it safely tucked away, as it became rapidly apparent that these long thin, dangly tubes (also known as 'wigglys') were going to be a daily hazard. This was primarily a concern if Theía was to grab the line and pull it out of its safety loop or if it were to get caught under her clothes by a parent or grandparent picking her up, which could inadvertently result in massive internal bleeding.
At this point, the idea of something with a pocket these lines could be threaded into came to mind. With my Aunt's support, Eva (who luckily used to be a seamstress), we designed a tube top with a pocket that pulled up around Theía's middle. This design helped keep the tubes clean and out of Theía's wandering hands, further lowering the risk of infection and making it harder for anyone - including us, her parents to catch the lines under her clothes accidentally.
For 5 months, Theía wore many variations of what is now Choob Toob, and she did not have a single line infection or pull her line in all this time.
After Theía finally had her line removed in October 2020, the gravity of the situation began to hit me, and one thing I couldn't understand was why weren't there any child-friendly solutions like Choob Toob out there? So I decided to start the Tiny Teas Trust to provide these Choob Toob's to other children.
From the start of 2021 we began working with other children fitted with central lines, obtaining feedback from their families and further improving the overall design of Choob Toob. With these families' support, we now cover the whole of the UK, empowering the children we work with to be children, without the worry a central line causes, to live life beyond the lines.