Matilda’s story

In November 2017, at just six years old, Matilda was diagnosed with B Cell Acute Lymphoblastic Leukeamia.

Matilda’s journey began in October when she started showing virus type symptoms and a few weeks later developed a sore and swollen ankle, a sore stomach, and a fever.  Super excited to be participating in her first-ever dance concert, Matilda insisted on attending rehearsal but unfortunately, her symptoms started to worsen and the next day, mum Louise, took her to the GP. The GP sent her straight to hospital where Matilda was admitted for tests.  Initially, her bloods were fine, but there was a swelling in her ankle joint, so she was sent home with medication for juvenile arthritis.

After just one weekend at home and no improvement with the pain, Matilda now also had extreme pain in her knee as well as her ankle.  Louise, and dad Gary, knew there was something wrong and took her straight back to hospital.

Following two further MRI’s, on her knee and hip, the family received the devastating diagnoses no family wants to hear.

Treatment started quickly, with Matilda in surgery for her first lumber puncture and intrathecal chemotherapy the following day.  That evening she was started on an assortment of medication and given her first IV chemotherapy.    Just a day later, further surgery to insert her temporary PICC line.

“It felt as though someone had pulled the rug out from underneath us.  It was overwhelming as there was no time to take in the diagnosis with treatment having to start immediately.  So much information to take in, decisions to be made, other children to consider” Louise said.

While Matilda has had to spend a lot of time in hospital, the family has been lucky that the majority have been short stays with just a couple of longer in-patient visits.  Matilda has had a lot of illnesses throughout her treatment but most of it has not been too complicated and could be dealt with at home.

During her time as an in-patient Matilda and her family say they have had some amazing experiences with the services provided by the Children’s Hospital Foundation.  The whole family has attended and enjoyed many events, saying that they are always welcoming, engaging, and varied.

“Matilda loves it when the therapy dogs visit and enjoyed music therapy when she was in the emergency department.  The Book Bunker is great, especially when we haven’t packed enough activity to occupy her time whilst in hospital, she loves choosing books to read.

The bedside play volunteers are amazing.  They have helped change her mindset many times.  I think she got tired of just the two of us in the hospital room, so we would both enjoy the interaction she had.  It always cheered her up and gave her a moment to enjoy a game or laugh with someone else, someone who isn’t expecting her to take her disgusting medicine” added Louise.

One of Matilda’s favourite activities is Juiced TV, Louise said “Juiced TV is next level amazing, Matilda loves the opportunity to participate”.

Matilda’s final chemotherapy session took place on 11 January 2020 and her oncologist check-ups are now every six weeks.  Matilda is excited to go into year three in school and the family has big plans for a well-deserved, first family holiday overseas.  A holiday that was planned in 2017 but got delayed when Matilda became sick.

“This isn’t a recent holiday but an up and coming one – it will be so exciting when we get to go.  We never said the holiday was cancelled, just delayed” Louise said.