Summary

I see I've had some new people checking out this blog - likely in response to a comment I posted on the blog written by the awesome father of a sweet little girl. She has just received a very troubling diagnosis - referred to by her dad as the C-word (I can relate - it was months after Malcolm was diagnosed before I could actually say that word in connection with him...). I posted a comment inviting him to check out Malcolm's blog in case she has the same type Malcolm did. For those who are not in the know, a quick summary...

I started this blog when Malcolm began treatment for AML, sometimes called MDS or AMKL, which is a type of leukemia that is much more common among young kids with Down syndrome than "typical" kids. If you go back to my early posts in 2010 you can read all about it. The posts are pretty factual in nature and were intended to keep family and friends in the loop on Malcolm's progress through treatment. His type of leukemia required intensive treatment for about six months. It meant he had to spend most of that time in hospital.

The other major type of leukemia, ALL, is also more common in kids with Ds than without. Treatment for it lasts about 2.5 0 3 years but it is usually primarily outpatient (barring complications). Kids with Ds and AML have a better than average survival rate - a whopping 90%. Kids with Ds and ALL have the same survival rate as all kids - around 70% (but improving all the time with advances in treatment and supportive care).

You can find some blogs of other kids with Ds and AML here - they were a great lifeline to me when I was in with Malcolm. Having your baby diagnosed with a life threatening disease is like nothing I can describe or ever wish to experience again. My thoughts and prayers are with Sarah and her family...

Mary Ellen