Quadrisomy 21

Lois on her way to surgery today.
Don't cry Yaya. I know she looks pathetic, but she's OK.

It's 1:30. My little bean is somewhere in this hospital with her Daddy waiting to go into surgery for a portacath, a spinal tap, and an injection of a chemotherapy drug into her spinal fluid. Jay is pale, has the shivers, and isn't talking - he needs a doctor almost worse than Lois right now. But he's refusing to leave until she's in surgery. Mac, who is in Pennsylvania with YaYa has a doctor's appointment at 3:30pm because he has a cough that starts at his toes and a drippy nose. And I am compulsively eating Cheetos against my better judgement. (Too many Cheetos can cause hallucinations. It's true. Ask Auntie Gina.) The universe has a sense of humor. However, today, I do not. Today I feel like someone needs to give the Hogan family a freakin break. Especially the cop who ticketed us for the expired inspection sticker. That was the cherry on top of our shit sundae.

I was too tired to update the blog last night and put the laptop away early in favor of sleep. Nice try, Momma. Last night was my shift in the hospital and it was approximately 4am before Lois and I both finally got to sleep. For a whopping total of 2 hours. Lois can't sleep because of the incessant racket of babies crying and industrial floor cleaners happening outside our door. She can't sleep because every 20 minutes the alarm goes off on her IV to tell us the line is occluded when really, it isn't. She can't sleep because there are helicopters landing on the roof. I have no visual confirmation of this, but I have experience with this phenomenon (thank you CRMH NICU) and I swear it sounds the same. And she can't sleep because part of her sweet self has to know that something is rotten in Denmark.



By the way, things aren't as rotten as we thought. Would you believe me if I told you Lois actually does NOT have leukemia? She doesn't. She has myelodysplastic syndrome. If you make the unfortunate choice to google those words, make sure you're wearing full coverage underpants because the information you find may cause you to #$%^ yourself. It's not a pretty illness in anyone except a sweet 2 year old with Down Syndrome. It is essentially a pre-leukemia. Lois has abnormal cells that just haven't quite made it into full blown leukemia cells yet. Knowing Lois, this is mildly amusing. Even at the cellular level, my girl is a lazy slug.

Unfortunately, myelodysplasia is treated the same way you would treat a child with full blown AML. She'll have the exact same treatment she would have had if those lazy cells had gotten their acts together and gone all leukomoid on us. Chances are good that it hasn't found it's way into her spinal fluid which we will find out later today. That's good, as Lois will require less spinal taps - and less chemo administered into the spinal fluid.

I got full details on her treatment yesterday and oddly enough, each of the 6 are slightly different. This month's treatment is the full 96 hours. Next month she'll be admitted for 2 days of chemo the first week and the 2 days the next week. Lovely. Then the next month we're back to 96 hours again. The final two treatments are marathon 168 hour continuous infusions of chemo.

I know. We thought 96 hours was bad. Sheesh.

She'll get a nasty drug called daunorubicin that will more than likely take that thick thatch of unruly hair from her head. When her hair goes, Daddy plans to shave his, too. Can't wait for that photo opportunity. I guess I need to invest in some hats for the bean. Some non girly hats. I wonder if they make baseball caps small enough for her little head?

Here's an interesting tidbit. They examined the chromosomes in Lois's bone marrow. Did you know they can differ from the chromosomes in the rest of your body? Oddly enough, Lois has 4 copies of her 21st chromosome in her bone marrow and 4 copies of her 8th chromosome. What's that make her? Quadrisomy 21? I don't really understand why, but apparently those extra copies of #21 confirmed that this is a leukemoid situation - which makes me wonder why all DS kids don't have their marrow tested to see if they have extra copies? Wouldn't that be a predictor for those that will someday develop leukemia? I'm going to ask my new friend - Lois's Oncologist. Not Dr. Hem and Haw. This is another Doctor from the group and we LOVE her. She went to UVA. Her husband's sister went to high school with Jay.

It's a small world.

Butter Bean's Brigade is now 50 members strong and growing by the day. Would you believe we have members from as far away as Spain and Panama? Even if you aren't local to Richmond, please join the brigade. We're working on some ways for all of you to show Lois that you are thinking about her and are leary of publishing our home address on the blog. That information will only go out to brigade members so please consider signing up. We're hoping to collect well wishes forLois from all 50 states and maybe a few foreign countries. Something tells me I can count on my old friend Vicki for a postcard or two from Spain. More on that later, but please go here to join:

www.butterbeansbrigade.org

Thanks, Mikey. So kind of you to create that site for us - Jay is impressed - from one computer guy to another.)

Our friend Beth, Miss Kate's mother, made us a home cooked meal and delivered it to the hospital last night complete with salad, muffins for breakfast, and a homemade get well card for Lois from Hannah. Can't tell you how nice it was NOT to eat McDonald's or ChickFilA! My sister dropped off a care package to beat all care packages this morning and we now have enough food to plan an intimate cocktail party for the staff of the 7th floor - minus the cocktails, of course. She is responsible for the Cheetos. I'm going to have to have Auntie Gina talk to her about that later. She also stopped by our house and let our dogs out midday, saving us a trip home. And I think she folded some laundry when she was there which was UNNECESSARY!


I'm just saying.

We had visits from Miss Jessica and my cousin Phyllis yesterday which really helped break up the monotony of being here. When we were in the clinic on Tuesday morning waiting (and waiting and waiting) for the pathology report, we struck up a conversation with Emily - whose son has ALL. We learned more from 20 minutes with her than in most of our conversations with Dr. Hem and Haw. She found Lois's blog through google and has since become a member of the brigade. Thanks for walking with us on this journey, Emily.

Please don't stay up tonight worrying about this (because I'll be doing that for you and at least one of us should get some sleep) , but did you know that on Lois's floor of the hospital, only about 50% of the kids have parents staying with them? Tiny babies here alone. They cry at night. I have to believe that the parents of these children want to be here, but there are circumstances in their lives that prevent them from doing so. That's doubly heart breaking. Those children give me perspective on how lucky I am to have 1 amazing sister who loves my children like her own:



and 1 Yaya and a Pops who would move heaven and earth for me, their son-in-law, and their grandchildren:






and 1 husband who loves his daughter to the ends of the earth. and his son. and especially his wife.


We're blessed beyond reason. But if the universe could clear up the snotty noses and allow the cops to not notice our expired sticker for the next few weeks, that would be great.

Lois is out of surgery now and in recovery and we're looking forward to seeing her back here in the room. She doesn't have to start chemo until the morning - so Momma can look forward to a good night's sleep at home tonight while Jay pulls uncomfortable chair bed duty at the hospital.

We'd love to see you if you'd like to visit - assuming Lois doesn't get really sick from chemo. Send us an email if you'd like to stop by.

xoxoxoxo

C