Erin's Story

Blood tests and a blood transfusion

I have never felt so alone and scared in all my life. I was miles away from home and my husband and older daughter were an hour and a half’s drive away in Fort William. Erin’s blood results showed she was extremely anaemic and needed an emergency blood transfusion.

She was then transferred to York Hill Children’s Hospital in Glasgow, and from there we were transferred by air ambulance to The Royal Marsden in Sutton, Surrey.

Erin was considered too ill to be transported by road. Jeroen had to do the drive back on his own as I was with Erin and my mum had flown up to Glasgow to be with us and she took Caitlyn back with her.

Going home

After three weeks, we left the Marsden to go home which again was very scary for us. You go from having the doctors and support around you to going home where you are on your own. I was very nervous about leaving but also glad to be going home so I could see Caitlyn too.

After the first four weeks of treatment Erin had gone into remission successfully which was a massive relief as it meant we didn’t have to have a bone marrow transplant which was great news.

The first year of treatment was very difficult. Erin was very ill from the treatment and we spent a lot of time in hospital. The regimen C treatment protocol is very tough and Erin received a lot more chemo than most leukaemia patients.

Caitlyn started school in the September after Erin was diagnosed in the August and I just managed to take her to school on her first day, after a friend offered to sit with Erin so I could take her. Caitlyn was so good in her first year of school, having friends pick her up more often than mummy and daddy but again not complaining about it.

Erin is currently doing really well. She has started karate and is up to orange belt. She has a problem with her heart function due to all the chemo and is under a cardiology specialist. However it doesn’t stop her from being active and the karate seems to help.

She is still on six-monthly check ups with her oncologist consultant. She is very well at the moment and thoroughly enjoyed the day out at Weston-super-Mare.

(May 2017)

June 2019: Update from Erin’s Mum, Christina.

Erin continues to do well and is definitely getting stronger. She is still under the specialist cardiologist due to the extra chemotherapy she received – however it does not stop her. For half term we went to stay in the Yorkshire dales and Erin was out walking every day. The walks were amazing, across cow fields, up waterfalls and past ruins. It was a great family time together. Erin’s next check up is in August and I am sure it will be onward and upwards from there. We cannot thank Children with Cancer UK enough. The help and support from them is genuinely heart warming and very much appreciated. Thank you all.

April 2020 update

We are doing well at the moment, however Erin is struggling a bit with the lock down. She is having flashbacks to isolation in the hospital and having nightmares so not sleeping very much. She is very tearful and tired – I am trying to reassure her constantly and hopefully she will get some good nights rest soon. It is also her birthday in just over a week and she was supposed to have a couple of friends over for a sleepover which obviously is not going to happen now, so she is very upset about that too.

Along with no Easter eggs and no Easter egg hunt this year, she is finding things tough. But on the plus side health wise she is doing well and is not affected by Covid 19 so that is good.

She has been baking and made an Easter gingerbread house which was a lovely distraction, and kind of makes up for no eggs as she is going to smash it apart on Easter morning. The girls also decorated our front window at home – they wanted to make an Easter window to brighten up the road for everyone. On top of that the girls had a sort out of their books and put them on a shelf outside the front of the house for people to take for free to get them through the lock down. It is very popular and we have people passing by to take a new book for their children or for themselves. They really enjoy seeing other people taking the books and getting more use out of them.

Finally, Caitlyn and Erin have been painting stones in bright rainbow colours and we went for a walk into the woods to hide them.