Skyla’s story

 

Skyla from Merthyr Tydfil was diagnosed with acute lymphoblastic leukemia (ALL) when she was four. The only outward sign that something might be wrong was her tended to bruise easily, but as her mum did too, Skyla’s parents weren’t overly worried.

However, when tests at her local hospital showed that the little girl’s blood count was very low they were immediately referred to the Noah’s Ark Children’s Hospital for Wales for further investigation. It was there, after a biopsy of her bone marrow, that Skyla’s mum and dad were given the diagnosis.

Sarah says: “To have my little girl’s name associated with the biggest of words – cancer, was awful. One minute we were living this normal life and the next everything was completely different. We were in hospital with our sick child being told that she had two and a half years of chemotherapy ahead of her. ”

Skyla started her first course of chemotherapy almost immediately, initially spending nine days in hospital with regular return trips after that. Sarah says that it was hard being away from family and friends during their hospital stays but that the play facilities and friendly team on Rainbow Ward soon made it feel like a home from home for Skyla.

Sarah says: “Having the play specialists there to distract and reassure the children during daunting procedures makes such a difference. They explained things to Skyla in a way I never could which made things less frightening for her and was a huge comfort to us as a result.”

Skyla’s treatment went well initially but then her platelet levels started to drop significantly below the normal range of 150,000 to 400,000. In June, with her platelet levels at an all-time low of 5,000, she was diagnosed with Idiopathic thrombocytopenic purpura (ITP) – a rare disorder that can cause excessive bruising and bleeding due to unusually low platelet levels.

Skyla started receiving regular platelet transfusions alongside her chemotherapy in an attempt to increase her levels, but they only worked for a few days each time. And though treating the leukemia had to be the priority for her doctors, for Skyla, it was the ITP that was having the biggest impact on her life.

Sarah continues: “With ITP your blood doesn’t clot so it was really important that Skyla didn’t do anything that would cause her to bruise or to cut herself. So even when we weren’t in hospital having treatment, she still couldn’t do any of the things that she loves to do like riding on her bike or jumping on the trampoline.  Even playing on the yard at play time on the days that she was well enough to go to school was too dangerous so she’d have to sit on her own while the other children played.  Witnessing that as her mum made my heart feel like it was going to break.”

In June of this year, Skyla was sent home from school with a suspected stomach bug. As the day progressed she became increasingly unwell and, concerned that it was a hot day and Skyla wasn’t able to keep water down, Sarah took her to hospital where she was put on a drip and admitted as a precaution. By the following morning, Skyla’s condition had deteriorated so much that her consultant requested an emergency brain scan. Sarah arrived just in time to see her little girl being taken away.

Sarah says: “After a while we were told that Skyla had been taken straight to intensive care, which we were warned might happened. When we arrived we were met at the door by the consultant who took us to a room and explained that the scan results had revealed a huge bleed on Skyla’s brain. It’s basically the worst case scenario for someone with ITP and our little girl was living that worst case scenario. I was so scared that I was shaking and I felt like I was going to be sick.”

Skyla was being attached to a device to monitor the pressure that the bleed was creating in her skull in the hope that it would gradually decrease but the results from the first reading indicated that it was already too high. Even before they were able to see their daughter, Sarah and Anthony were told that Skyla was being taken for emergency surgery to remove part of her skull in an attempt to alleviate the pressure on her brain.

“I knew by the tone of the doctor’s voice that things weren’t looking good. With everything that had happened in the last year, I’d trained myself very well to be positive but at that point it just all fell away.  I spent that whole time Skyla was in surgery preparing myself for them to walk in and say that we’d lost her and wondering whether her baby sister would even remember her.”

After four agonising hours, Skyla returned from her operation attached to a life support machine. The surgeons had found the bleed was in the optical part of her brain which could already have caused blindness or brain damage but as there was no way of knowing until Skyla woke up, they just had to watch and wait.  Seeing her daughter on intensive care connected to wires and machines was an experience Sarah will never forget but she was also reassured by how well she was being looked after.

“The care Skyla received in critical care was astonishing” says Sarah. “I have never seen nurses work so hard in all my life.  During the first few days the specialist nurses were constantly on the go to care for my daughter, it was a real eye opener!”

Skyla was unconscious on intensive care for a week and then, true to her dramatic form says her mum, woke up on Sarah’s birthday. Amazingly, Skyla was well enough to be discharged on to the surgical ward only a few days later and having spent a week there,  is now back on Rainbow Ward ready to re-start her chemotherapy.

Sarah says: “Skyla lost her left field vision as a result of the bleed. Although I was completely heart broken by this, I’m just thankful she’s alive and could never thank the neurosurgeon that operated on her enough.

“We wanted to tell our story to show the gratitude we as parents have for the Noah’s Ark Children’s Hospital and all the wonderful staff that work there. They do an amazing job and we’re so lucky to have this place to care for our daughter.”

For more information on how you could help Skyla and many others like her, visit our home page here.