Hi Polly, thanks for coming onto my blog today. Polly is my neighbor. She lives two doors up with her Mum & Dad, Julie & Danny Upfal, and her three gorgeous older sisters, Daisy, Isobel and Harriet. Polly is eight years old and she loves to run and play basketball. She also has a rare hip condition called Perthes Disease. She’s funny and feisty and brave. And this is Polly’s story…
1. Polly, can you tell me a little bit about Perthes Disease?
My hipbone is disintegrating and it’s come out of the socket and I need to stretch it back into the right position.
2. Now, you’ve had this before, when you were three years old, can you remember much about this?
No, not really.
I remember it well. You had hip surgery and were in a plaster cast for three months and then a brace for another 6 months. You used to visit me and take it off and then you’d get into trouble when you went home. Do you remember that?
I think I do actually.
3. Okay, when did you first feel that something was wrong with your ‘good’ hip?
Well, it was on a Tuesday. I was at school and we were playing tiggy. I fell over and banged my knee. My knee is attached to my hip and later that night my hip felt sore.
It got worse. It became sorer and sorer in the next few days. It got very sore. Mum wanted to take me to the Doctor but I just wanted to be able to play in my basketball Grand Final.
The basketball Grand Final came and when I got onto the court I just couldn’t run. It was really painful and my legs wouldn’t work. I found it really hard to breath. I kept trying but nothing would stop the pain.
Oh dear, did you win the Grand Final?
No, we lost 16 to 8. It was really bad as I’m the best player.
4. How did you feel when you found out you had Perthes again in the other hip?
Annoyed. Very annoyed!
I kept crying because my hip was hurting. I had to have x-rays. The nurse said it was serious so I got in to see the surgeon straight away.
5. What’s your surgeon’s name, what’s he like?
His name is Mark and he’s very serious.
6. Now, you’ve chosen a different type of treatment for Perthes this time, haven’t you?
Yep. Mum & Dad don’t want me to have the surgery. Mum’s talked to people who’ve tried other things and they’ve worked for other kids.
7. What are the other treatments?
8. And what do they do?
They make the bone go hard and grow again.
How do you take it?
Well, this is the bad part. It’s a needle.
Right…tell me more…
I go into the Children’s Hospital and there’s a lady there called Margaret and Margaret owns the bisphosphonate. You lie down on a chair and they stick a needle thing in your arm (it hurts) and the stuff goes inside your body.
Does a nurse do this?
Yes, the nurse is called Julie.
Same as your Mum.
8. And how did you react to the bisphosphonates?
Not too well. I was very sick.
I couldn’t sleep, I couldn’t eat. I was hot and then I was cold. I felt shivery. I thought my head was going to blow up I felt so hot. It was awful.
But this gets less and less with each treatment, doesn’t it?
Yep, that’s what Mum says.
How often do you have it?
I’m not sure.
(Once every four months)
And how do you feel now?
Mostly I don’t have any pain. It’s great.
Well, that’s good, isn’t it?
Yep, but I still can’t run.
9. No, but that’s the other part of the treatment isn’t it. You have to stay off your legs. Tell me what else do you have to do?
I can’t run, I can’t play, I can’t play basketball. When you have Perthes you can’t play any sport.
But you will Polly, this isn’t forever. Remember your new friend Charlie who had Perthes? He’s fifteen now and playing footy and lots of other sports.
Yeah, I know it just seems a long time. I feel like I’m going to be like this forever.
I’m sure it does. But it won’t be forever, you know that, don’t you?
10. Tell me about your ‘slings & springs’?
When I get home from school I lie on my bed and put my feet into slings that are held up by springs. They hold my legs apart and stretch them to get movement back into my legs. We measure from toe to toe or ankle to ankle. I started at 39cm and now I’m up to 50cm!
That’s fantastic, Polly. You sleep in ‘slings & springs’ too, don’t you?
Not anymore. I keep twisting around during the night and it isn’t the right angle for my hips.
11. How many hours a day are you in the ‘slings & springs’
I dunno, a lot. Mum says it needs to be at least 4 hours.
12. What else do you do as part of your treatment for Perthes?
Well, I use a wheelchair at school and at home I use crutches all the time. Never get the under arm crutches they rub your under arms raw. Get the forearm ones, they’re much better.
You had to move classrooms, is that right?
Yeah, my classroom was upstairs so I had to move downstairs.
How did that go?
I already knew the teacher; I’ve had her before. She’s really nice. I’ve made lots of new friends: Lara, Willow, Sophie T. and Abbey. But French is upstairs. Sometimes I fall over stuff kids have left on the ground.
Oh dear, that’s no good.
13. What else do you do as part of your treatment?
I swim four days a week.
I really hate cold pools.
Last week, I went to Harold Holt and little kid did a poop in the pool and we had to get out. That was really funny. But I really hate cold pools.
After swimming I get to eat Slightly Salted Popcorn. I also swim at Loretto and sometimes we have Frozen Yogurt. I have salted butterscotch on top.
13. So, how have you found things at school?
School’s okay. It’s just really annoying that kids ask me all the time “Why are you in a wheelchair?” And I say, I’ve got Perthes Disease and they’re like, “What’s that?” and I’m tired of telling people what it is. I feel like yelling STOP asking me!
I hate it when I want to walk and I can’t. When I see everyone running around, I really want to but I can’t.
It makes me so angry. When I get really angry I hold my breath. When I get really, really angry, I scratch my face.
Of course, you’re angry, you have every right to be angry Polly but please don’t scratch your face. Let’s find another way to let off steam okay?
Okay. What are we going to do?
We’ll talk later about this okay?
14. Is there anything at all that’s good about Perthes?
When you’re in a wheelchair, people are really, really nice to you. You get lots of attention.
And at home I get to go on the computer all the time.
That sounds pretty good.
It is. My family love me. They’re really good to me. And I love them too.
And if anyone else gets this Perthes Disease, you have to trust your parents. Believe in your parents. They’re only trying to help you get better.
Good advice, Polly.
15. I’ve heard you’re writing a book? Is this true?
Yes, silly, you’re helping me!
That’s right, of course I am! What are you going to call it?
‘STOP ASKING ME!’ by Polly Upfal
A very cool title, Polly, I can’t wait to help you write it.
Sweet Polly, thank you for coming onto my blog today. Did you know you inspire me? And I bet you inspire lots of other people too.
I wish you all the very best in your recovery from Perthes Disease. You’re doing an awesome job. You hang in there. Don’t ever forget how special and unique you are, there is no one else in the world like you.
Note to reader: I have taken very few liberties in editing Polly’s answers. I think she’s very articulate and clever, don’t you?
Stay tuned for my next blog post about helping unwell children cope with their pain, including a deep breathing meditation for children.
Some of the artwork above is for Polly’s book “Stop Asking Me!’. It’s watercolour and collage.