Monday, February 21, 2011

Alyssa Update

Hi Friends, I had a few spare minutes so thought I'd check in and say hi and give you an update on Alyssa.

To all of you continuing to check my blog and send messages of support - THANK YOU. It really does help all of us to know we are in your thoughts.

For those who don't know the background, early in November, she suddenly became gravely ill. Over the next few days, her condition deteriorated rapidly and she was transferred to ICU. After numerous tests including a kidney biopsy, "GoodPasture Syndrome" was diagnosed - an extremely rare condition. Alyssa has spent a lot of time in the Intensive Care Unit, and is undergoing numerous treatments including Total Plasma Exchange, Chemotherapy, and Haemodialysis. She is often hooked up to various machines for 10-12 hours a day.

Initially we were assured she would make a full recovery, but the disease was much more aggresive than first thought. She went into full renal failure in late December.

After two months in hospital, we came home early in January, and continue to go into the hospital every second day for her treatments. This has made a world of difference to her - getting to sleep in her own bed and spend time with her brothers.

Her kidneys are currently functioning at about 15%, but this is expected to decline over the next few months. Unfortunately due to the nature of the disease possibly spiking again, she will not be considered for a transplant for twelve months. Alyssa still has a very long road ahead, but we remain positive.

Alyssa has said I can post some photos of her journey over the last few months.

* Undergoing one of her treatments in ICU.

* Her favourite ICU nurse, Paul, who has been such an amazing strength for us all.

* Another ICU favourite, Prue, with Prue-Bear, the oncology teddy.

With Mel in the High Dependency Unit.

* In our room with my "bed" in the background.

* Just a few of the beautiful gifts and cards.

* With Nurse Amy who painted her toe-nails purple.
* Talking to Daddy on MSN.

* Undergoing treatment in ICU after one of her surgeries.
* Teddy was sick too.

* Batman and Supergirl visited on Party Day.

* I organised for her favourite radio personality, Camilla, to visit as well. This was the first smile we had seen in days.

* Of course, a visit from Santa was a must.

* Playing "cross-eyes" with big brother, Joshua.

* On one of her home visits, all she wanted to do was cook. Here she is with other big brother, Christopher.

I would just like to say that Alyssa has been an absolute inspiration to all of us who have spent time with her over the last few months. She has coped with this situation amazingly well - never once complaining or getting upset. She is an incredible, beautiful, and very brave young lady.
Thanks again for your wishes.
With love,
Tereesa & Alyssa.