Freya has been back to Sheffield Children’s Hospital this morning for a follow-up appointment with the Rheumatology Consultant. He was really happy with how Freya is doing and took one last blood test to see if all her results are back to normal. We are not expecting any surprises but the last time her blood was tested a few weeks ago, the ESR levels in her blood were still not normal and the doctor would like to see that where it should be. Had fun trying to catch a wee sample in a pot! How is it that if I take Freya’s nappy off at home, she pees immediately if I haven’t got a clean nappy at the ready. Half an hour with her nappy off with me staring at her bits and bobs waiting for any sign of a wee, and I was nearly ready for giving up! We got there in the end though, wee caught, tested and all ok!
The drugs that Freya was given have suppressed her immune system. IVIG (intravenous immunoglobulin) uses antibodies as a means of regulating the body’s normal immune response, steroids reduce inflammation and reduce the activity of the immune system and Infliximab is a chimeric monoclonal antibody (artificially developed in mice) that switches off the protein TNF-a which is a protein involved in systemic inflammation. As a result, she has not been able to have any of her routine vaccinations, missing her 8 week immunisations whilst she was in the hospital receiving treatment means she has a lot of catching up to do and in the meantime we have to be careful about what/who we expose her to, so it’s been a bit of a dull school holidays so far. Luckily Fin is obsessed with Minecraft, and Eliza is out with her friends most of the time (she’s gone camping with a friend and her family for a few days actually, so that’s been great). I was concerned that I was being over-cautious though and had a good chat with Freya’s consultant about the immunity issue so I could be sure I wasn’t forcing my family to miss out on life unnecessarily. He was happy with the precautions I have taken. We tend to limit any outings to things that are outdoors. If friends want to visit, we ask if they are well and if their children are well. We also make sure the children are up to date with their immunisations. We know chicken pox can be dangerous if you are taking aspirin, so Freya needs to stay well away from anyone who has, or may have been in contact with chicken pox. If I’ve needed to do some shopping (2 kids birthdays in the Summer holidays make that a necessity) I’ve avoided indoor shopping malls. We shouldn’t fly until Freya is up to date with her immunisations, so no holidays abroad for a while. The doctor confirmed that Freya can have any killed vaccines now, but mustn’t have any live vaccines until she has been clear of the steroids for 3 months. Rotavirus and MMR are the only live vaccines we currently give babies in the UK. Some babies will also be immunised against flu which is in the form of a spray; that’s a live one too so Freya can only have the flu vaccine in injection form. He said the further away from the acute stage of the illness and the medication we get, the less worrying all this will be. But he did say it was time we started living a ‘normal’ life.
Normal. Let that sink in for a minute. Yes, I guess it is normal for us now. It’s a new normal, but it’s normal nonetheless. It has been 8 weeks since we discovered that our baby girl had suffered some damage to her heart as a result of the Kawasaki’s. Thinking back to those days, back to the first weeks of her illness when she was unrecognisable to us, back to being told our daughter could die…well I don’t even know what to say. Even typing now I am shaking my head in disbelief. Did all that really happen to us? If someone had told me back then that one day very soon I would feel like everything was ‘normal’ I would have laughed in that person’s face. If someone had told me that one day very soon I would be able to look at my daughter without feeling immeasurable sadness, I would have stared in utter disbelief. And yet here I am, 8 weeks on from some of the worst days of my life, and I really do feel calm and happy in our new ‘normal’.
I think I’ve already mentioned that during those dark days after we spent a week in the cardiac unit, I was referred to the hospital psychologist. Let me tell you about that – it was quite amusing really when I look back. I remember one night in the Children’s Hospital when I was feeling particularly melancholy. I had either called the on-duty doctor to come and see Freya, or they’d come for a routine check or to take some blood or something. Anyway, I was talking as the doctor was examining Freya and I must have started rambling a bit about how I felt during my pregnancy. On the Monday following our stay in Leeds, both the Immunology Consultant and the Rheumatology Consultant came to see me. The consultant over at Leeds had warned them that I might want to discuss why the diagnosis came so late. I felt so angry and let down now that I knew that a late diagnosis might well have sealed my daughter’s fate. They explained how difficult it was to diagnose Freya because she didn’t present the typical symptoms of Kawasaki Disease, and that some of the tests they needed to carry out to rule out other illnesses just couldn’t be done any sooner because Freya was too frail. Then they said that they understood how terribly difficult this was for me, and that they had spoken to the hospital psychologist to see if she would meet with me. It was then that I found out there was a note in Freya’s medical notes that I had told a doctor that I had predicted my daughter’s death when I was pregnant!! Now, I know that I was an absolute mess at times and I rambled and cried to the nurses and doctors a lot, but I’m pretty sure I didn’t say anything as nuts as that! What I think I said was that when I was pregnant I was convinced something bad was going to happen to my baby, and I was so pleased when she was born healthy and perfect; that it was so cruel that now she was so ill after I had been lulled into a false sense of security. I guess in the middle of the night the doctor needed to paraphrase, so I became known as some kind of lunatic who believed she could predict the future!! You’ve got to laugh. Anyway, I accepted the offer of a chat with the psychologist and (after a bit of a wasted trip to see her, a double booking and a few tears) she came to see me in our cubicle. Seeing her was a turning point for me. I was desperate for her to tell me how to deal with this, and she answered me simply. She said you don’t deal with something like this, and there were no tools she could give me to help me come to terms with what we had been through or what was yet to come.
Tuesday 22nd June 2015, 17:00pm
“Mummy had a chat with a Psychologist today. Her name was Rachel and she was really lovely. This has been such a tough journey so far my sweetheart, and I’ve needed someone to talk to that isn’t also feeling sad that you are poorly. Luckily she thinks I am normal, haha! What I am going through is perfectly normal.
The fact is, no one can make this better. I cannot control the outcome. I can only hope that your little heart repairs itself or that it holds out long enough for something to be done. The lady said that what I am feeling is called ‘anticipatory grief’ and is perfectly normal for someone who has been told their child has a potentially life-threatening illness.
I asked Daddy today if we could have you, Eliza and Finlay christened. Not because I think we need to do it for any morbid reason, but because I don’t think it can hurt to order in a bit of extra protection for my beautiful children. I have never been really sure if I believe in God or not…At Leeds General Infirmary I wrote on a prayer sheet “Dear God, prove them wrong”. The odds are stacked against you little one, so lets hope He hears our prayer and reaches out to heal that broken heart.
The doctors have been trying so hard to be positive, always focusing on the great blood results or your observations or just how great you look. But every time someone says how beautiful you are or how well you are doing it feels like a knife jarring through my heart. The fact that you look so perfect on the outside makes what is happening on the inside all the more cruel, and even harder to bear.
Looking at you now, how beautiful and healthy you seem, it is hard to believe there is a possibility that this disease could kill you. I will always be afraid.”
47 days on and I am less afraid, in fact I go most days without feeling any fear at all. As I write this, I am reminded of another mum just like me who is at the start of her own terrible journey with her baby boy who was just a little older than Freya when he was diagnosed at 10 weeks old. I wish I could make her pain go away. I know too well all the emotions she will be going through right now, because we lived through them at this stage in our journey with Freya. Sadness, fear, despair, hopelessness, anger, guilt, grief; until all those emotions had taken any reserves I had and I was left feeling nothing at all. But speaking with the psychologist helped me to understand that I wouldn’t be able to package up any of those emotions and move on. So instead I started to read anything I could get my hands on, and my research skills and tenacity would really come into their own over the coming weeks. I couldn’t change where we were, but I certainly wasn’t going to accept our fate without a fight.