Two years on from diagnosis
I’ve shared a couple of posts on this blog about one of my best friends Emma, whose son (and my godson) Freddie has a rare liver disease. She hopes that by talking about her situation she might help other parents thrown into the dark, frightening world of childhood illness.
Personally, I just think her story is an inspiring one that deserves to be shared, and not least because £36,000 has been raised in Freddie’s name in two years. They’re aiming for more with a summer ball this year.
Here, Emma talks about the second year after her son’s dreaded diagnosis.
♥♥♥
It’s the 4th of March. Which is not only my fantastic father-in-law’s 70th birthday, it’s also two years to the day my then six-month-old baby was diagnosed with a life-threatening liver disease.
If you’ve followed our story then you will have read the piece I wrote a year after Freddie was diagnosed. It was my honest account of the first year of living with liver disease.
Writing that piece was cathartic. It off-loaded my heavy heart of everything it was carrying and cleansed my head of the confusing thoughts I was holding onto.
But the 12 months after that first anniversary may have been my hardest, because I would say I reached breaking point.
From the moment Freddie was born we’ve been on a roller coaster. One that seemed to have a never-ending bump in the track.
From him being born in September 2012 to his fifth month of life we had endless tests and scans, and a biopsy, then he was diagnosed, referred for naso-gastric feeding which quickly led to a gastrostomy tube being inserted under general anaesthetic.
His kidneys started leaking salt so he needed sodium added to his feeds. We found blood in his nappy so had to dial 999. We had unexpected stays in hospital after test results. This is only what I can remember.
The year it got serious
But 2014 was the year that things got really serious. Freddie’s condition and quality of life was worsening. My husband Phil and I saw it first hand and dealt with it every day and night.
In August 2014, when I could see his symptoms worsening weekly, I had a teary conversation with Freddie’s fantastic dietitian, Kirsten. She listened sympathetically as I cried down the phone and told her all my fears and anxieties. His skin itch from his poor bile flow was making him inconsolable and his body was being taken over by xanthomas.
Soon after, we had an appointment with the consultants. I usually go into Freddie’s appointments one step ahead of everybody, prepared for what they’re going to tell us.
But on this occasion I hadn’t done my homework.
We were told Freddie’s symptoms were now classed as ‘severe’ and he couldn’t continue with such a poor quality of life. That gave us two options: a ‘biliary diversion’ or a liver transplant (a transplant was the last option).
The biliary diversion was a six or seven hour operation involving Freddie being cut open and re-plumbed in order to drain from his body the bile that was causing him such deterioration and discomfort. There was no guarantee it would work and there were cases where it hadn’t.
Rock bottom
When the consultant explained the operation I wept. I wept for days after that too. It was the point I hit rock bottom.
I really didn’t want him to go through the operation but I didn’t have much choice. That’s a hard thing to comprehend for your baby.
I had struggled through the previous 18 months of Freddie’s illness, cried a lot and talked loads but I had come to a point of being able to cope with it all.
But hearing a consultant discuss the next process in order to make your seriously sick 23-month-old baby more comfortable was the point I lost all focus.
I hated what he and we were being faced with. I’d had enough now. I wanted out.
I had fumbled my way through the nearly two years before that. I had stayed relatively strong, cried when I needed to, sought help that I never imagined ‘I’ would need and made friends through social networks that I would never have come across in different circumstances.
Robbed of the ‘baby days’
The part that I find the hardest, even now, about Freddie’s illness is that I feel robbed of his lovely ‘baby days’, because at that point he was going through test, after test, after test. Having needles stuck in every part of his hands, arms and feet to draw blood to try and work out why he was ‘yellow’.
Despite how beautiful he is, all I could see or think about was liver disease.
I was trying to get six drugs a day into him and didn’t really understand what any of them were for or what they were doing. We had appointments coming out of our ears and were being swept into a really scary ‘new normal’.
And if that wasn’t all hard enough I got strangers staring at him in coffee shops, sometimes whispering to their friend about him being ‘yellow’. I had a man in the supermarket tell me he didn’t look ‘right’, and every baby class I took him into I would look at every other child wondering why my Freddie was poorly.
Worst fears
Why him? Why us?
I sometimes went through all the bad things Phil or I had ever done and wondered if Freddie’s illness was our fault. Was it our consequence for not always being perfect?
I loved this little boy so much, like any mother loves their baby. But I also had an underlying fear of losing him to this terrible disease, and that sometimes over-ruled the love I felt for him.
Because the fear of not having him was unbearable, and probably made me scared of loving him any more.
In the first year I can honestly say I convinced myself that I wouldn’t have him for long.
I spoke about the fear of losing him to Phil, my mum, sisters and friends who all reassured me. But none of them could promise me that wouldn’t happen. And that’s what I was looking for. 100% assurance that I would always have him.
Major surgery
Freddie had his major surgery in September 2014, stayed in hospital 10 long nights and recovered like the true soldier that he is. It was the longest day of all of our lives. If they could have given me a general anaesthetic at the same time as him I’d have taken it, just to sleep through the anxiety of not knowing whether he was OK for those seven hours in surgery.
Freddie’s surgeon Mr Naved Alazi is my hero. He has changed Freddie’s life so much and for that I am forever in his debt.
Whenever I see him in clinic I feel like a ‘groupie’ and a bit love-struck, because this man is the reason my boy is doing and looks so well now.
I will also say at this point whilst I regularly listen to the NHS being run down, I cannot fault one bit any of the care Freddie has received.
The doctors, consultants, nurses, dietitians and therapists have all been out of this world. Actual angels in disguise.
A major milestone
Soon after the operation Freddie walked for the first time on his own. I know all babies walk eventually and it’s exciting to every parent but to us this was a big deal.
Freddie had endured 18 months of physiotherapy and contraptions in order to strengthen him to walk. He was really weak and distracted by his symptoms before his operation and must have felt so ill that walking wasn’t really much of an interest to him.
I text my mum and dad the afternoon he walked, ‘come over quickly’, and they ran across the cul-de-sac looking worried – until I opened the door and they witnessed Freddie strolling, cocksure with his arms clasped casually behind his back, as if to say, ‘What’s the big deal, I’m only walking.’
Safe to say my mum stood and cried.
He is a different child since his operation. It was definitely the right decision to put him through the surgery.
He’s developing now like any other two-year-old and has a personality that charms most people who meet him. In simple terms he’s adorable.
More than anything it’s made me stop focusing on the ‘whys’ and ‘what ifs’ and I’ve really, really started enjoying him.
Life has got easier, less stressful and he’s a little pleasure. My little best mate.
Our life wouldn’t be normal to most but it’s much more normal than the previous two years and now there’s light ahead of us.
Family
The journey of liver disease doesn’t just affect Phil (Freddie’s dad), Louie (Freddie’s older brother), Freddie and me. My parents and the in-laws probably have more worry and sleepless nights than us. We just worry about Freddie and Louie. Whereas I know the parents worry about the four of us.
Our sisters not only have had to watch their baby nephew go through the mill but have also seen first hand he effect of childhood illness on us as a family.
Two days after my eldest son Louie started full time school, Freddie and I disappeared into Leeds General Infirmary for 10 days. That’s a lot for a four-year-old to understand. But Louie is one of the most understanding, kind, caring and patient little boys I know. And I’m not just saying that because he’s mine.
He understands Freddie’s poorly, often helps me put daily drugs down his gastrostomy tube and talks excitedly about the day Freddie won’t have a special tummy anymore.
Because ‘mummy and daddy climbed a mountain to make him better’. If only that was the case. (We and dozens of friends and family walked the Yorkshire Three Peaks for the Children’s Liver Disease Foundation (CLDF)).
Louie has definitely been the reason we’ve focused and carried on. When our world turned upside down and alien, Louie kept us normal. He will never understand how grateful I am for that.
Fundraising
This year we are continuing our devotion to raising vital funds for the CLDF. Freddie’s Summer Ball will be held on Saturday 4th July in Wakefield.
Not only is this a fundraising event it is also a celebration with all of the people who have helped us raise £36,000 in two years. We are hoping the ball takes us above £45,000.
Without the help of kind family, friends and strangers we would never have achieved a fraction of the amount raised so far.
So thank you. Sincerely. Thank you all.
After this event, we’ll rest. Definitely, rest.
Or that’s what I say right now.
Who knows what 2016 will bring?
Freddie has taught us one vital lesson in life: to take one day at a time.
♥♥♥
We’re looking for sponsorship (from £100) and donations of auction and raffle prizes for the ball, which will be attended by 300 people. If you’d like a ticket (£50) or to support it, email [email protected]. Thank you ♥
