Anyone?

May 26, 2010

Does anyone still bother to check this blog or have you completely given up on me? I'm handing over my "blogger" badge because I just haven't been earning it as of late. I've been keeping myself very busy by participating in an elaborate pity party. Sulking and bemoaning your fate can take up quite a few hours of the day. It's a full time job. But I've recently decided to give it all up and move onto healthier, more productive pursuits. So while I sit here unable to sleep in the hospital at 1:38am, I 'm going to add blogging to my list of productive pursuits and attempt to catch you up on Lois's treatment.

When I last bothered to update my blog, Lois had been scheduled to start her third chemo infusion but was turned away when she didn't have enough neutrophils. We tried again the following week and were still a no-go. I decided that my life was bringing a whole new meaning to the term "stir crazy" and we needed to find something special and eventful to do or my head just might explode - so we went to the Children's Museum of Richmond early on a Saturday morning to see Steve Songs.

That's right. Steve Songs. If you have preschoolers and watch a lot of PBS, you might know him as the guy in the red shirt who sings goofy songs in between Curious George and Sid the Science Kid on weekday mornings. If you don't have preschoolers, you might still be able to appreciate Mr. Steve because he is a bona fide cutie patootie who writes clever songs and is good with kids.

I celebrated being able to leave the house by putting a bow in Lois's hair.

(No. Lois is NOT balancing tupperware on her head. It just looks like it.)

That's right. You heard it here first. My daughter wore a bow in her hair.

Our friend (and cousin) Katie and her family won tickets to share a bagel and some juice with Mr. Steve before the concert. That would be the preschooler version of a backstage pass! I was jealous. After getting a good look at dreamy Mr. Steve, I was even more jealous.

Lois sat in the floor and clapped right along with Mr. Steve and the crowd. Every time he stopped singing, she'd start wildly waving to him. Apparently my kid and I share an affinity for dark headed men in red polo shirts. I sat close by with Mac and watched Lois enjoy a little bit of normal for a change. It was a breath of fresh air - literally and figuratively.

Our other cousin Elizabeth came, too - and we tried with little or no success to get a picture of the cousins after the concert.

Katie made the fatal mistake of putting her arm around Lois.

Lois would NOT close her mouth for love or goldfish crackers.

And Elizabeth? I'm not sure what our spunky little friend was up to.

But she sure is a cutie.

We toured the exhibits in the museum afterward which would be a lot more fun if ONE OF MY CHILDREN WOULD LEARN TO WALK. ( Seriously guys. Could one of you throw your Momma a bone, please?) One of my favorite parts of the museum is the giant screen full of butterflies. If you stand still in front of it, the butterflies land on your shadow.


Evelyn and Lois had a few land on their heads.

And then all the fun came to a crashing halt because Lois finally conjured up some neutrophils and was admitted for chemo infusion #3. Spending an hour in this hospital is too much for me. So knowing that we have several days of trying to keep Lois entertained within a crib/cage while she's pumped full of poison is just a stone cold drag. But Dr. M surprised us the day she was admitted by announcing that Lois would henceforth be receiving a 25% cut in her chemo dosage. Lois had very few blast cells in her bone marrow, and those that she did have cleared out shortly after her first chemo induction and they haven't seen any evidence of them since. So the biggest health risk Lois is facing is the risk of infection from being severely neutropenic for weeks on end. Children with Down syndrome are hit hard by chemo treatments, but it's believed this is part of the reason that chemotherapy is so successful with chromosomally enhanced children. So in order to "lessen the blow" Lois's four day infusion became a three day infusion - and Jay and I did a little celebratory dance in the hallways of the medical center.

One single hour is too long to be stuck in this medical prison. But three days instead of four sounded like nirvana.

Lois sailed through those three days like a champ yet again. No sickness. No intestinal trouble. Not a single indication that she didn't feel well. Our subsequent visits to the clinic to check her blood levels yielded more delightful results. Lois's neutrophils bottomed out at 500 (marking the first time Lois hasn't dropped the whole way to zero) and quickly starting rising again without any blood products. No platelets needed. No red blood cells (thank the heavens). So within a week and a half we were cut loose and told to report back for chemo in two weeks.

Three days of chemo instead of four was a whole new world. I liked it. I liked it a lot.

During our time in between treatments we stay at home in order to lessen Lois's risk of infection. Mac, Lois, and I are total couch potatoes. If they could talk (*sigh) I'm sure they'd tell you that they are bored to tears. Me? I feel like a houseplant that is being kept in the dark and denied water. I'm wilting, people. This is the root of my pity party problems as of late. I'm good with the whole leukemia thing. I'm just horribly in need of human companionship.

Now don't go blaming my husband for allowing his little plant to wilt. There's only so much one man can do. Things have been easing up a bit with his job, so we've been holding down the couch together at night watching the first season of Heroes on DVD. But I go to bed dreading the next day's inactivity. The guilt of putting in yet another Elmo DVD while I sit on the couch and knit. There is only so much playdough and shape sorting one woman can do. I should know. I've reached the limit.

So I realize that what I need from the brigade, instead of your delicious home cooked meals, is your companionship. Would you be willing to come hang out and have a cup of coffee with me some morning? It's really what I need, and I've been too embarrassed to ask. Please don't come with recommendations for therapists. I promise that my cheese is firmly attached to my cracker. I just need a little break in the monotony. I'll make coffee cake? Muffins?

I digress.

So we spent the majority of the month in solitary confinement in the living room except for a little family get together to celebrate the 11th birthday of this butt face:


It's a term of endearment. Honest.


I made the cake. A Hershey Bar poundcake with an entire box of Hershey bars melted into the batter. You can't see it in this picture, but my dogs - once again - managed to get their teeth into the cake while it cooled. It didn't seem to stop anyone from eating it.

Although Lois was more interested in eating her plate.


And Mac was interested in eating anything that would sit still long enough for him to get it into his mouth. That's just how he rolls.


Maggie was there too , to wish her big brother a Happy Birthday. She's growing her bangs out, much to the Yaya's chagrin. I'm pretty sure Yaya has offered everything up to and including an all expenses paid trip to Disney World if Maggie would just get them cut off. (If it were up to Yaya, all little girls would have Dorothy Hammill haircuts.) It should come as no surprise to you that thus far, Maggie and her bangs aren't to be dissuaded. That girl is like a dog with a bone.





We visited the park a few times and did some swinging.


We acted like a couple of rednecks and stripped our kids down to their diapers and let them play with the new water table Pops and Yaya bought them. In the living room. With a table cloth spread out underneath them. It was raining, people. Ok? I would have loved to have let them play with this toy outside. But it was raining! Quit judging! (This means YOU Auntie Gina!) Sheesh.


It's a great toy. They even like playing with it without any water in it. Score!

The only real bad news I have to report since my last update is that the Yaya fell in the bathtub and broke her leg. Or her knee. Depends on who you ask. And does it really matter? Poor Yaya is being forced to lie about in her bed and be waited on hand and foot by the Pops. It sounds like my dream vacation at the moment. But believe me - the Yaya AINT happy about this little turn of events. And neither is my fat man who has spent the past two days at the Goddard school while Lois undergoes chemo treatment #4 instead of in his Yaya's loving arms. We're making it work, but we miss having Yaya here and I know she misses being here. We were able to make a quick trip up the interstate this past weekend so everyone could get their Yaya fix - and she could get her Lois and Mac fix - and Jay and Auntie Gina and I could get our casino fix. So much fun! What a drag to come home and report to the hospital.

But alas! We are 2/3 finished with this nonsense. And thankfully, this infusion was reduced by 25% as well which means we are only captives here for 3 days instead of 4. Our last two infusions are scheduled to be SEVEN DAYS long. I've been told that will be reduced, but by how much, I don't know. Yaya swears she and Pops will be here for the next one and I hope she's right. It's not just that Mac needs her. I need her, too. Get well, Yaya.

In one short week my big boy will be a year old. Can you believe that? I'm already feeling the itch to add a third baby Hogan to our brood, but I think it's an itch best left unscratched. Jay agrees. If only we were younger.....

Thanks for sticking with me. I do promise to try earn my "blogger" badge back. Keep your eyes peeled for a butterbeansbrigade email with details about a coffee visit with us!!