ITP Patient Story - No Spleen Queen
Our ITP Stories

PATIENT STORY – Bruised but Unbroken: A teacher’s journey of hope and resilience

The story of a strong ITP Warrior who has been pushed to her limits and beyond as she navigates her journey from a school teacher, through numerous treatments and beyond.

Tap, tap, tap “Miss Danielle, I need to go to the toilet!”

Tap, tap, tap “Miss Danielle, my shoe fell off all by itself. Can you help me?”

Tap, tap, tap “Miss Danielle, he just licked my ear again!”

Tap, tap, tap were the little fingers in prep tapping on my skin to get my attention and help.

Tap, tap, tap probably happened 246 times a day in the prep classroom by cute little four and five-year-olds learning their way in big school for the first time.

ITP Patient Story - Danielle HodgesI was their teacher and had the best job in the world. I was teaching them to become independent and their own agents. We were working on raising hands in the classroom, but I honestly didn’t mind the tap, tap, tap, as it was usually followed with classic statements.

Tap, tap, tap “Miss Danielle, how did you get that GIANT black circle on your knee all the way down your leg? Woah, it’s all purple and black and hugetastic!”

For the first time that morning, I looked down, and I was perplexed at the size too. I hadn’t bumped into anything, tripped or fallen, and sure enough, I did have a massive pearler across my whole kneecap going down my whole shin.

“I’m not sure; let’s wash our hands and get ready to go out to morning tea.”

Washing my hands, I noticed other smaller bruises across my arms all over them, stone size. Dismissing it quickly, deciding I’d check them out in the shower that night, I went out to my class for morning tea, and we got on with our busy day.

I easily managed to be distracted with my class until story time that afternoon when I had them all gathered on the mat, hot, sweaty and tired and all at my feet, eager for a story before home time.

You could hear a pin drop in anticipation for which book I was going to read today, and I was warming up for my silly voices I put on to really get into character and deliver an award-winning performance (if I did say so myself!) when tap, tap, tap by a child at the front of my legs.

I was waiting for the usual, “Miss Danielle, why are your legs spikey?” comment that guilted me into shaving them on a constant basis; but instead, it was back to the bruise on my kneecap and leg.

“Woahhhhh Miss Danielle, what happened to your leg, that’s the biggest ouchie I’ve ever seen!”

I dismissed the comment and replied,

“It’s ok. It’s just a little bruise let’s get on with our story.”

But a huge bruise is hard to hide when you’re wearing a dress and sitting on a chair with 25 little people on the mat surrounding you.

“Where?!”

“I want to see it!”

“Show me!”

“Move your head guys in the front!”

ITP Patient Story - Danielle HodgesI had lost focus of the book as my little investigators were more fascinated with my leg now.

Still feeling perplexed, I remember quickly making up a story about how I must have got it from mopping my house that morning and slipping over like in the cartoons. Thankfully, the kids bought it after lots of comical laughter, and we got on with it.

The truth was, I felt too silly saying it was a bruise from nothing.

Driving home that afternoon, I decided to get a doctor’s appointment to ask for a blood test. I’d had trouble with low iron and being anaemic on and off over the years, which saw the odd bruise, so perhaps it was just that.

The next afternoon I got my appointment, and the following Friday morning before school, I stopped for a quick blood test on the way. I had noticed more bruises up my arms. Dark shiny bruises from the kid’s favourite, tap, tap, tap spots. They used their little fingers to tap my arm barely, plus I had been feeling run down with the start of a possible cold.

But it was Friday, and nothing was getting in the way of that!

That night I was enjoying a drink on my patio outside with my fiancé while he was cooking us a mean dinner on the BBQ when I heard my phone ring inside. Running in, I just missed it. Four missed calls. Three from a private number and one from my mum. I quickly phoned Mum back.

“Danielle, oh thank God, I’ll be quick. You need to ring this woman back from QML about your blood test this morning. She told me it’s urgent and couldn’t get onto you, so contacted your emergency contact – me but won’t tell me what it’s about!”

My heart skipped a beat, and my stomach started to feel weird. It was 6.30pm and outside business hours, so what could possibly be so ‘urgent’?

I quickly fumbled the number down from Mum and promised to keep her updated.

My heart started beating heavily in anticipation as I phoned the QML number back. The woman had a thick accent and spoke fairly quickly and urgently.

“Is that Danielle?”

“Yes, it’s Danielle.”

ITP Patient Story - Danielle Hodges“Danielle, it’s Maria* from the QML lab. I’ve been trying to get onto your doctor, but no luck this afternoon, and this can’t wait until tomorrow, unfortunately. How are you feeling?”

“Umm, ok? I think I’m getting a cold; my doctor gave me some antibiotics for sinusitis, but apart from that, I’m …”

“OK, well, I’m actually calling for another reason. Do you have a support person with you right now? You need someone at home who can drive you to ED at your closest hospital.”

My heart plummeted into my stomach.

“The ED?” As in hospital? But I’ve never been to the hospital. Why? Is this for real?”

My brain was spinning, trying to not only keep up with Maria’s accent but also comprehend the conversation properly.

“Yes, Danielle, basically, your platelets in your blood test have come back at 29”

What I wouldn’t give for those numbers now!

“A normal person’s platelets should range between a minimum of 150 to 400.”

“Sorry Maria, my, what now?”

“OK, I’m trying not to alarm you too much, but basically, a person’s platelets are their ability to form blood clots. You have hardly any, which means if you had a fall at home tonight and bumped your head or had any kind of internal bleeding, you could die.”

“I mean, hopefully, it doesn’t get to that for you, but we haven’t seen someone’s platelets in the lab this low for a long while, so it’s my duty to urgently let you know the risk and inform you to get to an emergency department right away!”

All I remember thinking was, ‘but an emergency department at a hospital is for broken bones or REALLY unwell people. All I have is some bruising and my head cold, but … it was just that, right?’

“OK, what do I say when I get there, please?” I managed to stammer.

I was already feeling very uncomfortable and embarrassed at rocking up at emergency at 7pm on a Friday night with a head cold and bruising but otherwise looking well.

Maria was good. She asked what was my closest hospital, phoned ahead for me, and told me to simply not pack or waste time but get in the car and get there and tell them my name when I arrived.

Little did I know this would be the first of 45933 (gross estimate, but I’d scarily be close) visits to the hospital because my whole life had just changed that night when after many hours of waiting, steroids and an overnight stay, I was finally diagnosed with immune thrombocytopenia (ITP).

NOW:

ITP Patient Story - Danielle HodgesFast forward three years, I have had to resign from my job as the hospital visits became too frequent towards the end of 2020 when my ITP got worse and worse. I’m now on my 12th or more line of treatment.

I had my spleen out early on when evidence back then suggested if the spleen was removed in younger patients (I’m 34) earlier on, there was more chance of success rate.

Boy, were they wrong.

My platelets didn’t go up at all. In fact, they plummeted even more!

We’ve tried steroids, Romiplostim, IVIg and every time I had IVIg I contracted aseptic meningitis so that’s a big no-no for me now. Then there was  rituximab, cyclosporin, various rounds of different types of intravenous and oral chemotherapy treatments and we’re still trying to find a combination to gain me some stability as I have been so low for so long it’s quite unbelievable.

My body is just so stubborn with a production AND destruction problem.  I have the best haematologist in the country (if I do say so myself!) who called me a unicorn. Just in this instance, I don’t want to be. He has presented my case to interstate colleagues and even internationally for advice. A few things worked in the beginning, but I just ended up becoming refractory to them all. So, as he said, we’re well and truly out of any textbooks or journal articles or research for my condition and are riding the big waves weekly with trial and error (and his many years of experience in the field).

All I’d love is for my platelets to stabilise to DOUBLE DIGITS so I can reduce the cocktail of medication I’m on and start to build up some of the stamina I’ve lost over the three years.

There’s so much more I could tell you, but we’d be here forever! 

My longest hospital stay so far has been 47 days in a row with platelets in single digits. But after a meeting with my medical team, we decided that there was no way of living for someone my age.

I can feel the changes in my body and mostly manage myself at home with lots of bed rest and an emotional support dog while my husband is at work! I still come to the hospital weekly for blood tests.

I think it’s important to recognise stress and mental health are just as important in the ITP journey. It’s quite isolating having a rare blood disease, but I set up a ‘The no spleen Queen blog page’ on Facebook for family and friends, and it was initially to let them all know at once when platelets were up or down or if I am back in hospital etc, but it has also become therapeutic sort of documenting my journey.

I am so lucky to have the support network I do, and I want to thank my amazing family, my amazing haematologist, Danielle Boyle and Patricia from ITP Australia, for not only providing me with information but checking in on me and also my friends and any of the beautiful hospital nurses or staff that have been so compassionate towards me.

That’s what’s kept me going. And helped me remain slightly hopeful. After all, if we don’t have hope – what do we have?

ITP Patient Story - Danielle HodgesSo, my story is far from over, but I do have some hope of getting better. I think if you have ITP, it’s okay to say you’re not ok and need help, I’ve learnt that finally.

And am thankful for my support network cheering me on to keep on going even when it’s one step forward and two steps back. It’s now a new year, and my platelets have finally gone into triple digits with a combination of a low-dose steroid, romiplostim weekly injections and Sirolimus (usually known as a transplant drug). This has been the best news since I was basically first diagnosed, and so I have started some rehab and pool hydrotherapy to start to build some of the stamina I lost over the last three years.

If you got this far reading, thank you! And My story isn’t over yet!

Danielle AKA The No Spleen Queen