Run for Geelong's Kids - Molly's Journey

Run for Geelong's Kids - Molly's Journey

Molly Baker is a current patient of the Victorian Paediatric Rehabilitation Service based at Barwon Health's  McKellar Centre.Run for Geelong Kids on Sunday november 18 is aiming to assist Barwon Health Foundation with their goal of raising $3 million for a brand new Kids Rehabilitation Centre.

Here is Molly's story told by her Mum Rebecca.

In December 2016 Molly had started to become quite fatigued, losing weight etc. We had gone to and from the doctor, Dr Das had run blood tests to check if anything would show up but nothing. Over the course of Christmas and New Years, Molly was barely eating and drinking and wanted to sleep constantly.

Then small headache’sstarted, so back to the doctor we went on the Saturday 7th January and he had ordered a CT scan to be on the safe side. The next day Molly was very dehydrated, no energy and vomiting. So we took her up to the emergency department, all obs were coming up fine but the headaches were getting stronger and lasting longer. They weighed her and she had dropped down to 41 kgs and we then realised she had lost around 6kgs over the last few weeks. Pain relief was given and they ran a drip over the day and night.

Molly had her CT the next day, we knew deep down there was something that was going to show up as by this stage she was constantly vomiting. In that moment we were taken straight back to the emergency department and informed Molly had a 4x4 cm Mass in the centre of her brain. In that moment my heart was completely broken, how and why was this happening. We were flown by the air ambulance straight to the RCH. Molly went in for an hour and a half MRI, the neurosurgeon informed us Molly had a tumour, which had had a small bleed already, and it must be operated on once they could get the swelling down and the blood to clot from the bleed. The problem being from where the tumour was located there could be serious problems with the Left hand side of her body and to what extent of weakness was unknown.

So the steroids, pain relief, drips etc were all started on Monday the 9th January in the hope to reduce the swelling and pain and planned to operate the following Monday. Except it didn’t work if anything the pain and weakness was getting worse every day.

By Saturday Molly’s left side was all weak to the extent of her left leg dragging, and her left side of her face was stooped. They had ordered a pain relief she could press herself and was to be put on, shaved spots on her head to head off for another MRI to see what was going on.

But she never got that far, Molly suffered a seizure which she came out of herself but within a minute she had suffered another big one with the result being both her eyes had blown and loss in consciousness. We were informed they needed to do and emergency operation and they said they didn’t know what they were going to do all they knew is they had to relive the pressure within her brain, they done a CT scan and the mass had doubled in size from the bleed.

We were told to go and see Molly and say what we needed to say. It was the longest 9 hours of our life. I along with everyone else prayed for our daughter. The operation went well, it turned out it was a brain AVM (not a tumour) which had ruptured. Molly has also suffered Left Peripheral Vision in both eyes due to the haemorrhage.

The impact this had on our family and Molly was huge. We have two other daughters, being separated from them whilst being in Melbourne was so very hard, as our home is in a little country town called Portland over 400k away from the hospital. Scott and I are so proud of our girls and the way they have handled it all as it’s been extremely hard on everyone. We are a very close family and are never apart from each other. The support we had/have was incredible, from family, friends and the hospital.

What a lucky country we are to have such incredible medical services here, we are forever grateful for all the people whom have been involved in this journey, from the neurosurgeon’s, nurses, care teams, Physio, OT, Speech Therapists, even little things like the music therapy, Ronald Mac housing etc. They think of everything that could possibly be needed for the children to make their journey that bit more easier and the starlight room wow amazing to be able to go to a place in the hospital where the kids can just forget about why they are their even for that little while. Molly was also entitled to The Ronald Mac Learning Program for 12 months due to missing out on so much schooling. Which has been an absolute blessing to have the one on one tutor.

When we left the RCH on the 16th February we were handed over to VPRS in Geelong. I honestly didn’t know what to expect as we were informed they would be helping with everything Molly had needed form neuro assessments to physio, speech therapy, OT, schooling etc.

Our family would be lost if it wasn’t for these guys. Therese has been amazing, weekly phone calls to see how things were going and help in anyways that needed. I don’t know how many times I broke down on the phone and Therese would be there giving advice and support no matter what. Having VPRS by our side has made this journey of ours that bit easier. Meetings with Molly’s school to help her learn the best she can by implementing strategies etc. We take Molly down to Geelong to have her assessments and they make you feel completely comfortable and at home.

Even to have little cottages we can stay in which makes a huge difference especially financially as I quit my job to care for our daughter, so to go down to one income even has impacted us. Therese even put in an application to see if Molly could receive a starlight wish, and yes it was granted and we all went on a family holiday to Queensland. This was truly incredible and we will cherish the memories we have made forever. To get away from it all and just forget about it all for that little while and to spend precious time together was a much needed break for us all. Molly has just been accepted for NDIS and thanks again to VPRS for helping make this happen. Overall I think we would truly be lost without all the services we have been and continue to be given through VPRS. Truly forever grateful.

Molly is improving every day, she has come such a long way. She is a very strong and brave girl whom has never given up and pushes herself to the most she can. Molly has a lot of her Left sided body strength back and you can barely notice it. Molly’s main issues now is her speed processing, working memory, schooling etc. Molly still suffers with fatigue especially after a big day.

Her cheekiness is slowly coming back more and more each day, before this happened she was very outgoing, loud and proud. This has changed her in many ways, but in saying that she has grown in so many ways also. We are so proud she is even starting to stand up for herself now whereas not so long ago she would get quite upset very easily and be too scared to speak up. Molly is now virtually at school full time now as of last term which is an absolute awesome feeling for her and us also.

A children’s only rehab centre will be incredible. As it is hard for a teenager going to a rehab centre with adults and older people. The centred care just for kids will be a huge benefit for all children and families involved.

Click here to sign up for Run for Geelong's Kids and help kids just like Molly.