Family, school, and fitness after a stem cell transplant: 14 year old Alex's story

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welcome to the second episode of the patient experience team podcast my name is Billy and I am the patient and family

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officer here Anthony Nolan

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This series of podcasts we hope to bring your insight and support into the experience of having a bone marrow or stem cell

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transplant will be looking at what life before during and after transplant can be like talking to health professionals for

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tips and advice and patients have been there themselves will be sharing their stories with you.

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Today I am joined by 14-year old transplant recipient Alex and his mum Lou and his dad Dave to talk about how they each

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round the transplant experience and what life is now as a family.

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Alex had his bone marrow transplant when he was 9 years old to treat his genetic condition CJD when he was diagnosed with

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it at just 5 years old. Hi guys. Thank you for joining me today.

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Can I start with you Alex Alex can you tell me what it was like having CJD when you were younger? Can you just let the

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listeners know a bit about it and what your symptoms?

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having

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granulomatous disorder kind of sucked because

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You when you have this condition it weakens your immune system so you're not able to fight off bacteria or fungus.

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So I can do things such as the outside when the grass is being or even being near a building site.

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And that made me feel.

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weird and left out

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difficult was

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What was it like when Alex was diagnosed? I mean had to had an idea.

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Something definitely because it's a genetic condition.

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Baby tummy upset that was supposed to the door.

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the time

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Being a new mum.

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so

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Very very very sick.

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So for me the diagnosis was a relief in in some way because I knew there wasn't imagining it anymore.

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To find that it was something.

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To go from being on a ventilator.

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And really fighting for his life to being told that it was something that could be treated and managed with a relief. So

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when did they tell you that a bone marrow treatment options?

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That diagnosis exactly what's wrong with him this time.

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The Cure

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transparent

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Do you go for it or two?

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Manage over the overtime see how it goes.

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the time

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chances of survival then

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So how long did you guys wait to manage it before?

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Then decided to go home.

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didn't way we manage Alexa

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The older adults and much more intervention, there was a lot more periods in hospital and not been well.

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specialist advisors to go and readdress

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Ok.

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But we had a huge surprise when we went to.

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Madison moved on so much in the two three years.

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the Edit finally become

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Not just an option.

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Very good option.

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And so did you read a little bit about the process or how did you get information with appropriate everything I think?

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And I'm very well because they gave us.

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Information and I think we were switched on enough not to go looking on the internet. Ok, because there's an awful. Lot

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out there on the Internet that's not help.

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particularly

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The stuff from the US does not apply to the treatments that are available here listen to the information.

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And how about you? Alexa are you nervous about having transferred you understand? What was going on?

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I wasn't really nervous about going into the transfer because I asked the doctors.

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Everything about it. I asked them whether there was a chance of die.

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Yes, I'm one of those which they also answered. Yes, so.

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And I want to know as much as I could about it.

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I do think I fully understood what was happening because

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to me

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I felt like if this happened. I would be a normal kid again.

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Not again, but I'll be a normal kid.

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What's the weather going to give you the opportunity?

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the things that you were able to before

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What if we got to a point where the balance?

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between manager and Alex's condition

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In living in normal.

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life was too hard to balance and Alex felt very strongly even though he was actually on the A12

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big advocates

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full Disclosure

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and we found a family that's worked because

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Alex knew that we would always tell the truth good or bad.

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So that you could make decisions for yourself, yeah.

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I was only nervous really on the

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Day before we came in because it's a big operation that you never know what's going to have.

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the all the things that could

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Just momentarily worrying about.

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So, what was it like on day 0?

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it was really like any other day in the hospital because

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Having brought and put into your system.

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it's just

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getting another bag of fluid hooked up to an IV

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the only reason it was different with all the nurse and all the doctor's on the

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Really excited into my room in the morning saying it here. It's arrived like Stamford

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Climax when they brought in.

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And it was just.

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Small pouch of fluid that look like orange Capri-Sun that they just looked on.

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TK Maxx and did you have to wait a long time to find a donor?

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What was that like?

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initial diagnosis of dementia

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There was a potential donor.

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And then we visited we still have time.

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Just before the transplant with you Alex picked up her an issue with cmv, cancel that that was discounted outside to start

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again.

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And how long are you in hospital for Alex how long were you in isolation?

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For 6-weeks and I'm actually my family made a bet.

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On when I would come out of hospital. I won the bet.

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really flew by because

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you're very busy on the ward with all the medicine and

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cleaning and dressing being removed and taken on

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and also

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You have a lot of distractions around you so you haven't you can read you can play video games going to ask you how to do

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a muse your self in there. Yeah, I had my Nintendo Wii and I had a PS3 for also.

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Nearing the end of my stay.

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On yellow which means I can leave my room.

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Also, I have my Flybe and we'll it down in my dressing gown but also I'm next door.

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What is another way CJ who is having his transplant and we?

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Used to hang out because we both on yellow at the same time so we used to go to the playroom and play board games.

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some company

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experiments and do things up if you want to be a Millionaire

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Someone from the water.

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I was so excited and then obviously.

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I'm sure voice.

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Boys my age listen to this all relate to this.

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I didn't really like the food. I was very pleased that I could come home have mom's home cooking but most of all.

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I was pleased I could have McDonald's on the way home mom's home cooking. Are you excited to be back?

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did you miss your friends and I really did miss my

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my friends in year 5

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Came round to the house one day while I was at home isolation.

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And they all stood at the door and ask me questions and post it through little.

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was a girl called Jennifer

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To the window and asked me.

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I was bold.

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Because I haven't seen you for yeah.

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What was going on?

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Did Alex have any late effects post-transplant housing manager?

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a few issues at TV

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Alex is a slightly.

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Unique recovery and it was very very slow.

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condition

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It's very different to the recovery from my other.

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compatibility of blood type

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play Netflix

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is now Abo

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underestimated

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infection and

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And that was all.

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learning to fly

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Going out and living your life and still just keeping one eye on.

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you know it still slightly more than

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How do you remember the first time you played outside when you go further so when I got home because we live really close

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to the beach make my mum and my dad.

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Always used to go on walks down to the beach.

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And but the first time I remember actually playing outside.

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when my mum went out and got me the little Yorkie Poo called maximus in for my 10th birthday and

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So since then.

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I spent every day in the garden playing with them which was loads.

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So nice and how long was it before you went back to school does it feel like starting again?

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so

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I didn't go back to school for about 18 months and I had a home tutor but that was only for an hour and a quarter a day

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so.

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Really I didn't feel like school.

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and

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I was so looking forward to go back to school. I miss school so much.

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I felt really excited and also going into Year 7 it.

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I was even more excited.

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I guess

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Go to school when it fell.

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so great because I'm a structurally because

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It was like having a perpetual summer holiday.

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Once you've done most of the things you can do.

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gone to see all the sights once you play 18 round of Mini Golf

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You kind of miss the structure of a really good friends.

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And where Alexa school supportive did they give you?

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the rest of the children in the class did a blog and a video

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When he was in hospital.

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And the teachers allowed the children in his class to watch some of these videos actually really good because I running.

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I was on the ward so although.

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Kids Easter post jokes for me ok?

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the provision could have been much better generally Alice

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Skype into lessons

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and things like that, but the technology wasn't there and

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the local authority

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Could be way more supportive.

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Children with serious health condition ok, there's very much to focus.

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Providing for children that have behavioural issues or attendance issues.

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No, I'm you know to my knowledge? It's still not really the provision is minimal.

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Ok.

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It's not the same as it. No it could be much much better so

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Do you think that you guys have got closer as a family after all you guys?

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definitely

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Your mum and dad most of most of the time you kind.

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Have to be survive if me and my mum.

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I don't think I'll be talking to you today.

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you

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the things that we come through

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I think we have to develop.

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strong sense of humour

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Just getting older.

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You have to go together and do it because you know and when.

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As long as we were obviously.

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You have to go back to work and living on the light.

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little home

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Speaking of teens you've just recently competed at the transplant games fancy. Tell me a bit about that. How was that was?

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completing a transfer games was probably

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what is the best experiences I've ever had in my life because

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So supportive because this year was my first time really playing sport before my transplant.

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I can get even the smallest Potter house, I would.

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Died and I didn't have the opportunity.

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And I got tired of these later this time really.

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Last time please.

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And I really surprised myself and how well I did.

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I got

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Quarter final table tennis I can fit overall in badminton, and both muscle better swim.

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really proud of what was it like to be able to see Allah

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competing in sports

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Dad's dream to their son compete in the sport and the trust I gave you the first time with you at 18.

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compete

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Competition as well as he did.

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fantastic

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encouragement

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Enjoy yourself so much.

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amazing experience

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So my last question for you Alex is about your future. What would you like to be when you're older?

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Is a very difficult question I would like to be multiple.

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live on the actor lawyer doctor

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dolphin trainer at Seaworld

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I suppose the one thing that sticks in my mind is intact.

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I recently took part.

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My schools production of Guys and Dolls Adelaide nice and Mercy Johnson I love saying Sit down You're Rocking the Boat it

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was the best thing but one of the best things I've done.

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And once when I was on that stage.

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pause

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I'm taking my bowels I felt that really was what I wanted to do with my life.

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Thank you all for sharing your experience with me today. It's been great to have you here and thank you to our listeners

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to listening to the second episode of our podcast.

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If you found it useful, please share it on Facebook and Twitter or with other transplant recipients you think might find

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it insightful. We really want to reach as many patients as possible to let them know about.

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services near Anthony Nolan

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You can contact us at patient info anthonynolan.org with your ideas of what you'd like to hear in future episodes of the

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podcast and you can also speak to a member of the patient experience team at this address if you need support or have

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questions anytime for more information on stem cell Transplants and recovery as well as free resources that you can

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download an order you can visit our website anthonynolan.org and take a look at our patient page.