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Jasmine Storey-Robinson - Her Transplant Journey

May 23, 2008

Jasmine-348Jasmine is 11 years old and is coming up for her 10 year transplant anniversary in February 2009 - coinciding with Organ Donor Awareness week. Ten years! It just seems to fly by. And even now I can confidently say that I think the last 10 years of her life and health and happiness still feel shorter than the 15 months that Jasmine spent on the transplant waiting list! They say it is the not knowing that makes it feel so long. Not knowing if she will make it. Not knowing how long she will be able to fight. Not knowing if there will be a donor in time to save her life. So many questions - so few answers. And that time just drags, I can tell you!

It all started out with a very healthy and happy baby. Jasmine weighed in at 9lb2oz and glowing. She was very slightly jaundiced; not enough to go under lights, and came home on her second day. It just goes to show that you can’t always pick them! Who would’ve known that a few short weeks later she would be having a massive liver procedure in the Royal Children’s Hospital and recovering on life support in intensive care? Well, that was her Kasai procedure and, although it worked for a while, and most certainly bought her some time, it wasn’t a complete success and Jasmine’s liver condition deteriorated rapidly.

It was estimated that Jasmine would not survive her second birthday and we were strongly advised to buy a video camera and enjoy what we had left. She ended up on the *~*magical *~* Transplant Waiting List at the New Children’s Hospital at Westmead at only 11 months of age. She was 18 months old when we finally got the call. Thankfully a donor! Some one to save our little girl. To give us hope. We phoned all the relatives. We all said our goodbyes. But then we got another call - it was a false alarm! Did someone change their mind? Was there someone else in more urgent need? Was the donor liver not suitable? We will never know the answers. We only knew the pain. And that her chance at life had been taken away.

Jasmine was an amazing baby girl. So full of fun! She loved to dance and sing and play make believe. She brought all those smiles and happiness into our every day life. While we tried not to worry and to make every moment count, she was living life and loving it! She chased the birds in the hospital grounds, she smiled at everything and every one, always happy and seeing the great side to everything that happened in life!

She loved the hospital. The nurses were so nice! And she got lollies and stickers. She got to meet the Bandaged Bear and the Clown Doctors. She got to see Hi-5 live! Twice! And oh, how she just loved Hi-5! The dancing, the singing! She got her photo taken with Kathleen! It was all just part of the ride for her. Whenever we could, we got her out of the hospital on gate pass and we took her to the zoo, and to the shops, to the parks and playgrounds, we took her swimming and camping. Anything fun and exciting and good for a few laughs! She was great! But liver disease waits for no-one and as time went by, her arms got thinner and her tummy swelled more and each day was a ticking clock. In spite of her cheery outlook on everything and her insane fight for life, the damage eventually caught up with her.

Jasmine-(2)-348Jasmine stayed on the waiting list for almost another year, and yes, she survived her second birthday but I will never forget the day she gave up. The day I walked into that hospital room and she didn’t want to get up and play anymore. She lay there on the bed and looked into my eyes. And I just knew what she was saying to me. She was saying, Mummy please let me go. I don’t want to do this anymore. And even though it rips your heart out, you just know it was going to happen one day so you hold her hand and sit beside the bed with that quiet resignation of knowing. Knowing that this was the end, and there wasn’t long to go.

Her tummy swelled out of control, no amount of medication could contain it now. Her skin was almost orange like a pumpkin. Her arms, just fragile little twigs. The team of specialists came in to check on her, as they did every day by then. They were very quiet. As if they knew too. They looked at me like they were just trying to find the right way to tell me. The right words to use. I let them off the hook. I spoke first. “Please don’t say anything,” I said. “Unless you have a donor and you want me to get her ready for transplant, then please just don’t say anything at all anymore.” They nodded and left. This went on for several days. They came and looked. They nodded and left. The clock ticked.

Then they spoke. “A donor - a match.” Someone, whose family was willing to give, to save a life. We could hardly believe it. We had waited such a long time. It was almost too late. Could it really be? We all cried and as I carried Jasmine into theatre in the early hours of the morning and kissed her one last kiss and helped them put her to sleep, I just knew that there was nothing more I could have done.

Twelve hours later she was back! Alive and well, and recovering in intensive care. Her recovery was nothing short of miraculous! We played tapes of her beloved Teletubbies and while she was still heavily sedated and on life support you just had to love her - she was trying to press the buttons on her Teletubbies toy just so she could hear La La sing! The good old Jasmine was back and just to have her reaching out her hand to me was so special and amazing and just such a relief! Within 9 days they had all the tubes out! She was wheeled out of intensive care, sitting up in bed with absolutely no tubes, no drips, no ventilator, no central line and she really just has never looked back. She was discharged from hospital within a month, having doubled her body weight. Just check out those arms! The liver transplant Clancy ward had a little party for her when she left and, except to pop in and say high and show off her dancing skills, she’s never gone back.