Our GOSH experience 

Out of the blue one morning, my completely normal 3 year old daughter woke up with a gigantic W sweeping on her forehead. 

A trip to the GP, and then a visit to A&E, the doctors told me they thought it looked like a skin infection, cellulitis, so we immediately started on a course of antibiotics and hoped it would clear up. The next day day her whole forehead had swollen, her eye looked really squashed and her little face looked what I can only describe as deformed. I had no idea what was going on. 

Back to hospital we went, that trip turned in to a 2 week stay. We got no answers, just hundreds of tests, x rays, and one very emotional, poorly, fed up little girl. My husband and I, So many tears shed, so many unanswered questions. My body ached with worry and tiredness. We felt so helpless. 

Her little veins in both hands got infected from IV antibiotics being pumped in to her daily, yet her head was still swollen, she just wasn’t getting any better. 

We begged on her 4th birthday to take her out for a bit and spent a couple of hours dashing to the Disney store and buying her something just to see her smile, then whizzing her straight back. The doctors said they had never seen anything like it, her lump appeared as a big hole on her skull on the xray images yet her swelling was getting bigger. It baffled the team, we would see them all staring at her X Ray pictures, no one could tell us anything. We asked and asked, we listened to many different theories, we even got questioned by social services. Why has she got a hole in her head? She must have had a blow to the head? Are you sure you don’t know what happened? It was so frustrating. 

Finally, after what felt like forever, we got referred to Great Ormond Street to see a specialist on the Monday, so we could take our girl home for the weekend. Once settled back at home, I sat and googled the doctor, I remember Seeing the word ONCOLOGIST and at that point my life changed forever. Never once had the C word been mentioned to us. I spent the entire weekend throwing up. I held my girl so tight. I thought that it really meant we were going to lose her, it was all completely out of our control. I have never felt so scared, or upset ever in my whole life.

 Apart from a severely bad case of glue ear previously, she was a normal little girl. Our little baby, my little Perfect princess. 

Monday arrived and we went to GOSH. I was amazed how huge the hospital was, seeing it on tv I never imagined it so big, and so, so busy. We saw the doctor and were immediately reassured and comforted. The oncology team had discussed Emily’s scans and suspected a condition that is so rare it’s hard to diagnose, hence why our local hospital had struggled. Thankfully the specialist we were under at GOSH for her condition, (Langerhan Cell Histiocytosis) was leading seminars around the world and educating others of this extremely rare disease. 

Scans, biopsies and appointments, we had it confirmed that it was LCH, we finally had a diagnosis and a treatment plan, and a much more positive outlook as it was treatable. I remember wanting to hug the doctor, I felt like we were in really safe hands. Finally. The first ‘lump’ as we called it was treated with steroid injection and it went! We couldn’t believe it when we saw it shrinking and her face looking normal again. I Had never felt happier. 

 I had googled the condition obviously and had seen that some children weren’t quite so lucky after just the one steroid treatment, but we had been and so we booked a family holiday, for some fun and sun. On the last day of the most perfect week with our 3 babies, I brushed Emily’s hair and I felt a big lump on the top of her head. Then on touching it and feeling around some more, a second one right next to it. My heart sank. I knew it what it was and knew also that this meant things were about to get really tough. I had read what happens if there was more than one ‘lump’ or lesion and I knew we were headed back to a long road of chemotherapy treatment and steroids. 

I wasn't prepared for the nightmare ahead. An ultrasound showed the third lump had attacked the skull bone so quickly and aggressively you could see straight through to Emily’s brain on the scan image. Intense chemo started every week all through the summer holidays, followed by 18 months of 3 weekly chemo after that. Our lives went by those dates, planning ahead wasn't an option. We had to just do each day and see what it threw at us. 

Countless ops, holding my baby whilst she went off to sleep on the op table, sitting numb in Starbucks holding my husbands hand waiting for the call to say she had come round. Hundreds of scans, x rays, MRIs. Trying to make a 4 year old lie still in the noisy tunnel, seeing her scared little eyes in the mirror. Weekly blood tests, weekly nurse visits at home. My boys seeing Emily scream and cry because she didn’t want another one, me crying spending hours bribing and begging her to to let the nurses access her port. Numbing cream, Port flushing, neutropenia (immune system on the floor basically) endless bugs and illness, trying to get her in to school for normality, but fearing what else she would catch, hospital stays when she got sick. Steroid rage, hunger, puke, anti sickness medicine forced down even though she hated it, nightmares, hot sweats, tears, tantrums. Pinning my girl down whilst she screamed and they injected her over and over again. It hurt me so much. 

I felt So guilty she was going through all this. My heart broke in every single way. I cried everyday. I longed for her to be better, to be a normal family again. 

Without the support of our lovely Macmillan nurse, hospital staff, friends and family, I think I would have lost it. It was all too much. My poor boys suffered too. We all had regular counselling, little Toby was only a baby, but Max saw things that no child should ever have to see, I felt that I wasn't being a good mum to them, because all my focus was on Emily. 

GOSH Could not have been any more supportive, they soothed, calmed, reassured, they had everything covered. Nothing was too big or small to help us with. Support workers, play specialists, the porters, the cafe staff... it’s like these people have all come from a special place.

I knew that our girl was in the best hands and although sad, felt such reassurance every time I walked through those GOSH doors. 

I met so many families up on that safari ward. So many children. A cancer ward at a children’s hospital, yep, surely there is no worse place to be, yet l always saw smiles and love. Behind tired, sad eyes, reassuring nods of hello, I know what you’re going through glances.

This place was so special, us all in it together. I’m so Thankful to still be in touch with some mums today. I’m sad that there treatment is still ongoing. Some people have gone through so much worse than we have. We had a best case scenario situation. I know that things could have been so much harder.

 Our Emily is now 5 years clear of her disease. A huge milestone for us. We are still at GOSH very regularly for checkups with the oncology team. I can’t deny how anxious I get in the lead up to an appointment. It was also discovered during a routine biopsy that Emily’s blood clotting is delayed, so she is under the haemophilia team there also, along with our two boys - the whole family has it but we were undiagnosed until Emily was, strangely both my husband and I have the bleeding gene ! Emily is also under the spinal team for her scoliosis. A condition that was picked up at one of her routine check ups 2 years ago. 

If you follow my Instagram you’ll know we collected her back brace recently. This felt like another blow :( , but I know this is just another little hurdle to overcome and we as a family will get her through. 

We’ve spent half of Ems life at GOSH and will spend lots more time here that’s for sure. It’s almost like another home, for us and I feel so lucky to have it. Yeh i d rather a sunny villa in Spain, but this is how our life is. 

I want to do all I can to raise money for this amazing hospital, the money raised by charity fundraising is used for :- Research in to Children’s Health Support for families and children Rebuilding and Refurbishment of the hospital and specialist areas And of course ... Life saving medical equipment I hope sincerely that none of you reading this ever have to experience GOSH first hand. I know some of you have and will...I want to raise awareness and help raise enough money for the patients and families that need it now and in the future.

I thank  you for reading this. I am dedicating my fund raising efforts to all the children we met whose outcome sadly wasn’t the same as Emilys. That are going through treatment now, or families who are living at the hospital day in day out. In a big blur of tiredness and emotion and not knowing what tomorrow will bring. Also to the future families that will rely on GOSH. 

Gosh, Thank you for Everything you do, it’s my turn to give back xx

And for you, my beautiful girl Emily. We love you so much.