My Bone Marrow Transplant & Recovery.

Hi, My name is Amber, I am 17yrs old and I have been battling with a brain tumor since I was 3 1/2 yrs old & I am partially deaf due to past chemotherapy.

Last May, I had a second biopsy of my brain tumor which showed that there was a gene that could be treated with a trial drug, so we decided that we would use the drug to control the tumor growth. This came with a whole crazy world of side effects and excruciating pain, We decided with Drs to stop the drug in February because my body just couldn't take any more, I had developed too many side effects.

This February, after a crazy week of migrane headaches, I was rushed into surgery to insert a VP Shunt to control fluid levels in my brain.

Since Sept last year, My Drs have been checking my blood and bone marrow when I showed constant signs of Aneamia, this has also shown that my blood is not working properly or clotting very well, which resulted in a bleed to my brain and this was the explanation for the headaches. I have been tolerating 30 sessions of Radiation therapy for the brain tumor growth before I start treatment for my blood disorder. This makes me so tired, not hungry and comes with some more headaches due to swelling on the brain while being treated.

My Specialists have now found that my past chemotherapy has given me a secondary disease called MDS, Myelodysplastic Syndrome.

That has put me on the Bone Marrow Transplant list.

None of my 3 siblings were a match for me unfortunately but we have found a donor & they are on standby.

I will be going into Sydney Childrens Hospital in June 2023, having extensive tests and consultations, then I will be admitted for pre BMT Chemotherapy in total isolation, then fighting for my life to keep hold of the Bone Marrow Transplant for an unknown period of time, approx 3-4 months, hopefully not rejecting it or picking up any infection that can keep me in hospital longer.

Oh and I will be turning 18 in hospital within my isolation room, away from all my family and friends, how awesome is that This doesn't help my anxiety and depression.

I have set up this GoFundMe page so that I can raise some money for my family, to be able to travel to the hospital either on a daily basis or find some accomodation nearby so they can be by my side every step of the way. My Mum quit her job so she could be by my side so far and my Step Dad is a long distance truck driver, so he is the sole provider for us at the moment.

I would love to be able to gift them some money to ask my Step Dad to have some time off work and be here for Me and my Mum, to relieve some financial pressure from him as he feels that he cannot stop working, to be able to pay the bills.

We are a family who wouldn't usually ask for anything but this is going to be so tough and we are asking for some help through this unimaginable & mentally fragile time.

Thankyou for any support, Donation or Share. 

It means so much to me.

Amber xx