January 22 my life changed.

No pictures today. No silly stories about the rigors of being at home with 2 kids under the age of 2. I'm not even sure I can make myself do this - but we have been totally overwhelmed with the kind words and thoughts and loving prayers of our friends far and wide - so I feel I owe you some details about what we found out today.

For those of you who are not our facebook friends, Lois was diagnosed with leukemia today.

Although I had felt for the past several weeks that Lois didn't seem herself, the truth of the matter is that a routine screening picked up some disturbing things in Lois's blood. Her white cells were low, her hemoglobin was low, her red blood cells were high, and her platelets were almost nonexistent. Dangerously low. We were immediately called to the pediatrician's office and shipped off to the Pediatric Oncologist this morning. Lois had a bone marrow aspiration, where a sample of Lois's bone marrow and an actual core sample of bone is removed.

Although that sample is currently undergoing more testing, we have a preliminary diagnosis of Acute megakaryoblastic leukemia (AMKL). The two most common forms of leukemia are ALL (Acute lymphoblastic leukemia) and AML (Acute Myeloid leukemia). Children with ALL are usually treated with monthly chemotherapy treatments for 3 years. It's the good kind of leukemia. (Is there such a thing?) Children with AML receive much more aggressive treatment and are usually hospitalized for most of it - but the duration of the treatment is much shorter. Usually 8 months.

The kind of leukemia that Lois has is very uncommon - and in the DS population is basically seen only in those children who had Transient Myeloproliferative Disorder in infancy. The survival rates are close to 90% for children with DS. Children without a bonus chromosome rarely get AMKL. Those that do have a rough time ahead. It can be deadly in the non-Trismony population. If you have a child with Down syndrome, and they have to have leukemia, you want them to have AMKL. Or at least that's what we heard today. Her treatment will be similar to ALL treatment in that it will be less aggressive, but similar to AML treatment in its shorter duration. The best of both worlds. Without an extra chromosome, this diagnosis would be devastating. Just another reason to thank the universe for blessing our girl with a little something extra.

Our new oncologist is a bit....how do I say this nicely?......odd. She's an odd bird. And although several times today I wanted to grab her by the throat and shake her till her sensible velcro shoes flew off her feet, I think we are in good hands. She has actually done research on myeloproliferative disorder and AMKL so I suppose I'll have to get my propensity for violence under control. But really, it's hard to have really positive vibes about the person who tells you your kid has cancer.

We're in a holding pattern until all of Lois's lab work comes back. Preliminarily we're hearing that Lois's cancer might be able to be treated on an outpatient basis. But we don't know any specifics at this point. She'll probably need to have a portacath implanted in her chest next week in order to avoid hundreds of needle sticks. And after our experience today, that sounds like a great idea. Your offers of help keep pouring in, and we appreciate them all so much. Mac is a major concern for us, but for now he's safe and sound with his Yaya. After our appointment on Tuesday, we'll try to make more definite future plans and we WILL let you know how you can help. Those of you who know me know I'm not one to ask for help - or willingly or graciously accept it. I may have to get past that - quickly.

To our friends in the DS community - your heartbreak and outrage is so very heartwarming. Jay and I met little Evie only one time, but her diagnosis and struggle were so very personal to us. She was a member of the club. She was one of us. We knew it could just as easily been Lois in that hospital room at UVA. So next week it will be Lois in a hospital room at VCU and I totally understand how you all are feeling about that. Take heart. Lois will show leukemia who is boss - just like she's been showing Jay and I for the past 2 years. We are honored to be part of the club and we definitely feel the love.

My sister has been by our side for the past two days - literally. She arrived with our McDonalds fries today just in time to see Lois waking up from her propofol sleep like a drunk on a weekend binge. Lois is so lucky to have her Aunt Marpa.

My sweet Dr. Meck/Atkinson called us late last night after I emailed her Lois's preliminary bloodwork. She prepared me well for what I was going to hear today and made sure I went in that office knowing what I was talking about. If only Dr. Meck could commute to Richmond to see my baby girl through this awful trial. She can't be Lois's doctor from 200 miles away, but she told me today she'd be my "advisor." We can't thank you enough, friend. We love you.

I promise to post again on Tuesday with whatever details we find out.

Love to you all - xoxoxoxox