Pity Party

I'm trying not to have one, but it would be SO easy right now. I'm pooped, people. Pooped from a day spent doing nothing but waiting. Andrew would say it was just like the Army - hurry up and wait. I did a lot of waiting today. A LOT. And it's not like I was waiting for anything good. I wasn't waiting for a dozen Tollhouse cookies to come out of the oven. Oh no. I was waiting for the medical staff of VCU to come up with new and varied ways to torture my kid. They excel at this. Somewhere in that hospital right now they are working on tomorrow's plan for the mistreatment of Lois Hogan and her kind hearted parents.

So maybe I AM having that pity party. All they are trying to do is get my girl well - even though she isn't sick. At least not visibly sick. But give it a few days and they are going to have her good and sick - the evil bastards.

This post isn't going quite the way I intended.

So believe it or not, the lab report still isn't back. But the information that is trickling in is all pointing to AMKL or a precursory version of it. Do you really want me to go into greater detail on this? I hope not, because I'm not sure the blogger spell-checker knows how to spell some of the words I heard today. At this point, I think those lab results are irrelevant. My kid has cancer. She has leukemia. And they are going to make Lois's life - and mine - and Jay's - and Mac's a big pile of poop for the next 6 months in order to clean it up. What a drag. I know I'm being rather flippant about this, but my other alternative is to sit here and fill up Jay's keyboard with 2 liters of tears and I don't think that would do me much good.

It was a hard day. But we finally heard what we have to look forward to in the coming months. Lois will need 6 chemo treatments. It looks like most of them, if not all of them, will need to be administered while Lois is in the hospital. No outpatient chemo for us. Why? Because Lois will receive 96 hours of chemo at one time.

I know. Say all the curse words you want.

It does seem rather extreme, doesn't it? The good news is, that Lois's chemo will have a lot less strength than your typical chemo dose. Lois is getting off easy. And if what my new friend Heather tells me is true - then it probably won't make Lois very sick. Her daughter went through this exact same thing. And she knew lots of other bonus chromosome kids who have endured chemo and they weren't that sick, either. I've always said that extra chromosomes have their privileges. I just never imagined this would be one of them.

Just to be clear - because my Facebook post seems to have many of you wallowing in a deep depression - AS I WOULD BE - if Lois had to spend the next 6 months in a hospital - She will be in the hospital for those 96 hours and then will hopefully be released to spend the next 3-4 weeks at home. Dr. Hem and Haw (did you really expect me NOT to give her a name?) said Lois can even attend school during those weeks if she feels up to it. Happy, happy news for Lois.

Will she lose her hair? I don't know. But after all the complaining I've done about it, it will probably stay right where it is. Hanging in her eyes and growing straight forward from the back of her head. Oh how you taunt me, you tricksy follicles!!! Honestly, her hair isn't a big consideration for me. Neither is the scar or placement of her portacath. Battle scars, people. Lois can someday be very proud of the storm she's going to weather. And with or without hair and with or without visible scars, she is beautiful inside and out.

That last line was so treacly sweet, I'm shocked it came out of my mouth.

But it's true.

OK. I saved the best news for last. It's what I will allow to linger in my thoughts as I drift off to sleep tonight.

The course of treatment that Lois has been prescribed is called a protocol. It was developed by a large group of pediatric oncologists from some of the most progressive children's hospitals in the world - including St. Jude's. (That $25.00 a month IS going to benefit Lois, Yaya!) A group of doctors did a study involving a group of children with DS who were suffering from AMKL and who had MPD as infants and were being treated using this protocol. They had a 100% survival rate.

The irony is - an extra chromosome made Lois more likely to develop leukemia, but it's also going to allow her to survive it. Gotta love that extra 21, folks.

Lois got a special gift from her buddy Jackson and his family today. I got a lovely email message from our dear Miss Judy (They say it takes a village to raise a child? Well Miss Judy is the chief of Lois's village as far as I'm concerned.) and one from Lois's teacher at school. We're hoping to see Lois's head cheerleader Miss Jessica tomorrow who has rallied Lois's entire preschool behind her. My favorite Veteran has been trying to call me and not catching me at a good time. Send me an email, boyfriend - and congrats on becoming an Uncle. We love you.

We've set up a website called Butter Bean's Brigade - it's a way to help us coordinate the hundreds of offers of help we're receiving. If you are interested in becoming a member of the brigade, please follow this link:

http://www.lotsahelpinghands.com/c/622228/

Fill out the right hand side of the form which is a Request to Join the Community. Once you've done this, Jay and I approve your request and you'll be added to the community. Once you are a member, you will be sent instructions via email for setting a password and signing in. It sounds complicated, but it really isn't. We'll be adding things to the calendar as Lois's treatment progresses and we can more easily anticipate our needs.

More tomorrow from the land of unnecessary needlesticks.....