The most cruel thing about this illness is the unknown. The second most cruel thing about this illness is the false sense of security that it lulls you into when everything seems fine on the surface. You can’t see what Freya has been through when you look at her. What you see is a beautiful, happy little girl. She is in all aspects (with the exception of the Kawasaki Disease and it’s ‘gifts’) the perfect baby. She sleeps through the night from 7pm to 7-8am, and when she wakes it is not with a cry but with chatter and that beautiful smile. With the exception of a couple of symptoms that remain – thick yellow finger nails, one of which came off yesterday and sore, dry lips that crack and bleed when she cries – she looks the picture of health, and other cliches. Her last follow-up appointments were 3 weeks ago. Since then we have been allowed to ‘forget’ about the journey we have been on. Life has become the usual routine again; washing, ironing, picking up after Freya’s siblings. The 6 weeks we spent in hospital seem like a distant memory, the only reminder being in the mornings when I prepare Freya’s daily medication.
Tomorrow is Freya’s next cardiac follow-up appointment. And just like that, we are shunted from our 3 weeks of ‘normal’ and back into that dark place where we live with Kawasaki’s. Just then my fingers hovered over the keyboard for minutes trying to think of what to write next. I don’t have the words. I’ve often referred to this journey as a rollercoaster, but the more I think about that the less appropriate it seems. I love rollercoasters. Love the breathless anticipation as the car makes it’s ascent up the tracks. Love the exhilaration as you tip over the brow and race downwards, screaming wildly with joy. I’d say the climb has some similarities, it’s just that the drop brings no joy. It is a nosedive into a deep dark chasm. Tonight I have a heavy heart, as again I am given a stark reminder that we are still on this ride, and we have no idea when we will ever get off.
Returning to the hospital where my worst fears became a reality always shakes me. The memories of that week at Leeds General Infirmary are still so raw. Up there I felt my most vulnerable, isolated and alone.
Tuesday 16th June 2015, 23:00pm
“I am sat by the side of your cot in your new temporary home. We arrived at Leeds General Infirmary around 1pm and you were taken immediately into the ultrasound room for the new doctors to carry out another echo on your heart. I can’t remember much about what was said as I seem to have hit a brick wall this afternoon after very little sleep last night. What I do remember is that they confirmed what Sheffield had reported…I am too tired, and I am too exhausted with bad or worrying news. You got very hot in the ambulance and all through the scan you just got redder and redder. I could feel the panic rising inside of me like bile from the pit of my stomach. They took your temperature: 36.4. Phew! I cried with relief. Last week I cried every time your temperature peaked, and now I’m crying when it doesn’t!
A new doctor came to see you today. He is [the rheumatology consultant’s] equivalent…He wants to test your blood in the morning, and see the results of a further echo before he will make the decision about giving you another drug (Infliximab). At the minute we are not sure whether you have beaten the Kawasaki’s, nor do we have a full report on the condition of your heart.
You are currently on the high dependency unit within the children’s cardiology wing of the hospital. The staff and surroundings seem lovely, however I am not allowed to sleep with you on this ward, and have been given a key to a room in the parent’s residence. I cried a lot when they told me I couldn’t stay. I’ve been by your side all through this adventure sweetheart, I couldn’t leave you now in this strange new place. I am sure they all thought me a very foolish and over-protective mother, and all of them tried to reassure me that you were in good hands and encourage me to go and get some sleep, but no matter what they say I will not leave your side tonight.
Daddy and I walked down to the parent’s room to drop my bags off. The room they expect me to sleep in, away from you, is in a completely different wing of the hospital! It is a 10 minute walk from where you are. There is not a chance that I would spend tonight alone that far away. I know you wouldn’t know I was gone, but I think I need you more than you need me at the minute. I love you dearly…These past few weeks when you were not yourself I have missed you more than you can imagine. Now that you are back with me, and you know who I am…I don’t want to let you out of my sight. You are too precious to me.”
The nursing staff tried to encourage me to leave Freya and go to my room for some sleep. They said that it was important that I look after myself to have the best chance of looking after her. But I was stubborn and resolute; I would not be leaving her alone. I fed Freya at around 1am and could feel myself dropping off as I held her in my arms. After I laid her down to sleep I sat for some time considering what I should do, worried that if I stayed awake for the next feed I could cause her harm if I fell asleep. I thought about it for 2 hours, and at 3:30am I slowly rose from my chair and with tears rolling down my cheeks I left her. I am crying now, as I recall that memory. I felt so much fear, sorrow and guilt; I still feel it now. I guess it was around 4am when I finally settled down in my bed, although it was an anxious sleep mainly because of the situation, but partly because of the LGI ghost story that had gone viral on Facebook the week before! I slept with the light on and one eye open! When I awoke, I showered and rushed back to the ward where Freya was sleeping soundly.
“I guess you didn’t even miss me, but every minute I was away from you felt like an eternity.” (Wednesday 17th June 2015)
Freya had another echo that day (Wednesday 17th June, Day 18). There had been no change from the previous day, but the doctor confirmed that Freya’s aneurisms were large and that the aortic valve continued to leak. They said that otherwise her heart function was fine, but that she will need follow-up care for life, and would need to take blood thinners (aspirin) for many months to come, if not forever.
The Rheumatology Consultant came to tell us that he wasn’t happy with the inflammatory markers in Freya’s blood sample, and that it was time to tackle the Kawasaki’s more aggressively. I had to give consent for Infliximab to be prescribed. I believe it is unlicensed for use in children. The hospital had to apply for funding for it as they did not have permission to use the drug in a baby as young as Freya. The drug would switch off a protein in Freya’s blood called TNF alpha – one of the risks associated with that is increased potential of developing lymphoma, although the doctor assured us that this was more likely where there was prolonged use of the drug. Freya would have only one dose to begin with. It was no choice at all really, but we had to put our trust in the doctors and they were clear that we needed to switch off the inflammation to prevent any further damage to the coronary arteries. I asked the consultant if I would have a chance to speak properly with the cardiology consultant as I felt that I understood the Kawasaki’s Disease pretty well, but was less confident in my understanding of the effects that it had on Freya’s heart. He told me he would make sure I had some time with the consultant the next day.
And so we prepared ourselves for another drug. Freya had been on various antibiotics (amoxicillin, meropenem, cefotaxime and gentamicin), antiviral medicine (acyclovir), paracetamol, ibuprofen, steroids, aspirin and a drug to protect her stomach from the drugs (lansoprasole). She had received a blood transfusion, and two doses of immunoglobulin. The next day she would receive yet another drug – the last they could really offer to help her situation. I did not know that that day would also be one of the hardest days of my life. Whether I am able to write about that tomorrow will very much depend on the outcome of our follow up appointment. Keep your fingers crossed for her, will you? And if you believe in God, please keep her in your prayers.