Natalie Rose’s Story

Site created on November 30, 2009

Natalie was diagnosed with Langerhans Cell Histiocytosis (LCH – a very rare blood cell disorder) on 27th June 2008 when she was 6 months old.  She had various rashes from birth and we eventually saw a dermatologist who performed a skin biopsy and made the diagnosis straight away.  That same day we met her oncologist at Westmead Children’s Hospital.

After several blood tests, scans, and a bone marrow biopsy, her doctors confirmed the condition was only in her skin.  This was a huge relief for us all because it meant no chemotherapy was needed and we were sent home with some steroid cream and an appointment for a review in 3 months time.

The following week Natalie had her 6 month immunisations (we were told it was fine to do so).  From that same day, she was not well.  She had fevers, vomiting and was very pale, although we didn’t realise quite how pale she was until we looked at photo’s later on.  We had scheduled her christening so we went ahead and she was okay on the day, but two days later we took her to emergency as something just wasn’t right.

That afternoon, she had a blood and platelet transfusion and a number of tests.  We were admitted to the Oncology ward, and our world spiralled from there.

Over the coming days, the doctors repeated her blood tests, scans and bone marrow biopsy.  Results showed that the LCH had spread throughout her body.  She went to theatre to have a central line inserted and had a liver biopsy at the same time.  Tests revealed she now had LCH in her liver, spleen, and bone marrow (and later in her gastrointestinal tract).

 A possible link to her immunisations?  We will never know for sure, but we assume so.  The theory is that she already had an “altered” immune system, and the immunisations caused things to go haywire. 

On 7th August, Natalie had her first round of chemotherapy.  We will never forget the first moment it went in.  It seemed surreal.  Here she was, our first child. 6 months old.  On an oncology ward.  Undergoing chemotherapy.

They started her on the ‘LCH –lll’ protocol.  It was supposed to be 6 weeks of chemo, followed by maintenance chemo for a year. Her rash did disappear, but there was still LCH present in her bone marrow so they made some changes to her protocol and she commenced new chemo and steroids.

We were in and out of hospital....she had lots of fevers, and as soon as she spikes a temp it means she has to be admitted for IV antibiotics.  They rarely found a cause of the fevers....they are a part of LCH, but just in case it was due to an infection, she had to be admitted for antibiotics immediately.  The staff in emergency and on the ward got to know us very well. Camperdown ward soon became our second home.  Little did we know, we would spend more time there over the next year then we would at home. We would have to watch her be put to sleep over 20 times for procedures and surgeries, and she would have over 330 blood and platelet transfusions.

Please see journal entry dated 02/12/09 for part two of Natalie's story

Newest Update

Journal entry by Gemma Matheson

As we begin the school holidays I realised that I never actually posted about Natalie starting school! We are now three terms in and all is going very well. Miss moo has settled in very well and has made lots of new friends. She has a very experienced and dedicated teacher who has helped her come a long way in terms of her language skills, and she is also doing well with her reading and writing.

With the start of school came a reduction in all the early intervention therapy that has helped Nat get this far.  This also gave Alex some long awaited one on one time with his Mum! He coped very well with being cared for by his Nan and Pop or Aunties for the hundreds of appointments that we had over the past few years, but he is certainly enjoying having more time with me whilst Nat is at school.

We've recently re-commenced fortnightly speech therapy and occupational therapy just to give Nat a bit of a boost before we start the transition to mainstream school. We were pleasantly surprised at parent-teacher interview when we were told that Nat is doing so well that she can start at our local school one day per week from the start of term one next year! We've chosen the school and have started to talk to Nat about the transition. Exciting (and daunting) times ahead!

It's already almost the end of September and before we know it I'll be posting about end of year school activities and Christmas.  Before we get to that we have to get through November, our month of annual check ups which will involve a blood test and appointments with her oncologist, renal specialist and dental clinic.  Not looking forward to all of those appointments, but we are looking forward to reaching December when we can celebrate FIVE YEARS IN REMISSION! 

Hard to to believe isn't it?


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