The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Sunday, June 19, 2011

The next adventure

Ah, I so hate what I am about to say... Adam is in hospital again, this time for a long time. This time is not a burn, or a heart op, or a bout of pneumonia, all of which he's had in the last 7 years. This time is much worse.

Yesterday Adam was diagnosed with Acute Lymphoblastic Leukaemia. It follows a period of several weeks that he's been having pain in his hips and frequent infections, but it was not what we expected to hear. And yet, we always knew that there was a risk, as up to 10% of children with Down Syndrome also have Leukaemia. The treatment is intense, with the most intensive part lasting the next 6 to 8 months and the total treatment probably the next three years. Yikes. I can't even comprehend the next week, let alone the next three years, let alone isolation, hair loss, sickness, chemotherapy, high risk of serious infection, missing school, etc.

We have had so much support from friends and family already that somehow I know, no matter what, we are blessed and we will come through this. How life will look three years from now I don't know, but that is not what matters. What matters is that today was good, today he laughed with his brother and sister, today he enjoyed watching Mr Tumble on his very own portable DVD player, today he said something unintelligible that had an obvious meaning to him, and it's my deepest desire to find out what it is!

I will keep writing as much as I can about Adam's new journey, and will post pictures where I can along the way. Adam is a star, and I am grateful for his strength and ability to focus on the present and will try to do the same myself.


Becky said...

Praying fervently, Steph.

Anonymous said...

Oh Stephanie & Brian! My heart is filled with worry and prayer for you and your beautiful Adam and your family.

Know that he's being prayed for and thought of on this of the pond too!