Princess Lizzy

It was a Tuesday when Dr Frank said it was time to bring this little one into the world.

It had been a VERY VERY long pregnancy. I had spent every day at the LGH with morning sickness and when my blood pressure went through the roof it was time. At 5.45pm  Elizabeth Joy Knox was born. Lizzy weighed 4 pounds 11 and was beautiful. She had all her 10 fingers and 10 toes and was/is the sunshine in our lives. A little sister for Meg and Matthew and a new Princess for Dave and I. 

We were all so happy and loving this new member of our wonderful family.

THEN on the Thursday a doctor came into our room, I remember it so well, Lizzy was dressed in pink and I was still in my nightie. She undressed Lizzy. What was she looking for?? Lizzy was perfect, yes she was little, but we grow them small in our house. The doctor asked what I thought Lizzy had? We were told at the 20 week scan that our baby might have a chromosome abnormality like Down syndrome or Williams syndrome. I said Down syndrome and then the world stopped. I could hear the words, see, feel the tears but it just stopped. THANKGOODNESS Dave came in.  We cried a river, we held that small little pink thing with love and then got on with it. We did as the caring nurses told us to do, we learnt things, we met amazing people like Joel and his mum Robyn, we made the most of being in the hospital for the next 6 weeks and then we took our Lizzy home. 

Speed humps were few and often. We were in and out of hospital, we had appointments at St Giles, Mumford Street Early Learning, Doctors, specialists, you name it/them we saw /did it. We met wonderful mums, we cried, we had the biggest fights, we made life long friends, we lost family and friends and made our family strong. We focussed on all the wonderful things we had/have. We loved each other and we cried and laughed and made it through. Matthew went to school, I went back to work, Dave became bike boy and Lizzy blossomed. She made it to the milestones, made it through all the childhood yucky things, sometimes in hospital and taking a lot longer to get over, but Liz did it. Lizzy started school, she made friends, she broke a leg or two and then started high school and life was good. Life was as it should be. YES sometimes it was crap (Lizzy's favourite word) but we made it. 

BUT… after an amazing holiday to Thailand Lizzy was pooped. It had been a busy wonderful year. Christmas was here, holidays were here, we could sleep in and take time to recharge. HAPPY 2014 came and Lizzy was still tired. Still looking pale and not the normal Liz. She spent a lot of time napping and having quite time.  I believe in feelings and I had that feeling so off to the LGH we went and after a nasty virus had cleared the doctors said Lizzy might need to go to Hobart for more tests. But we came home and yet that feeling was still there. That feeling that a parent gets when their baby isn't well.

Soooo back to the LGH and then on Saturday the 15th of February Lizzy and I were flown to The Royal Children's Hospital Melbourne…. Words like bone marrow, blood transfusions, anaemia, liver dysfunction we heard. Words that a mum, dad and big adoring brother shouldn't hear. Lizzy had a bone marrow aspiration and trephine and Dr Jordan told us Lizzy had a diagnosis of a myelodysplastic syndrome such as Refractory Anaemia of Childhood. Still words and things we didn't understand. 

We stayed a week and went back to our home. Our world had hit another speed hump and it seems like a nightmare. Lizzy, Dave and I left Matthew at home with the beautiful Ali and returned to Melbourne again in March for more tests, more words that terrified us and now under 3 teams. Lizzy now has a blood team, a Gastro team and an oncology team.

People living with Down syndrome have a higher chance of getting Acute Myeloid Leukaemia. A 85% higher chance soooo we are on the look and wait for that! 

Lizzy has a condition called Pancytopenia secondary to Myelodysplasia. 

I have set this blog up so we can share in the GOOD times, share in the bad times.

We are looking for support and not sympathy. We are hoping for a miracle and for life to be full and healthy and happy again...