Please stop staring at Mac's head. It's freakishly large. I know.
I was harassed on Facebook today. That's right. Harassed. Taunted. Goaded. Apparently I'm not updating the blog enough to suit some of my readers. Or my sister. And do you know what I have to say about that?
You're absolutely right.
But my beefy, mobile, curious, and destructive 10 month old is taking it out of me. He is a one man wrecking crew. And by the time Jay gets home in the evenings, I'm ready to head upstairs to bed. It's actually very similar to how I felt when I was pregnant with him. Only now he's trying to play in the litter box instead of kicking my spine.
I'm not sure which I prefer?
I'm not sure which I prefer?
I think we'll let the pictures do the talking and make this short and sweet. Is that OK with you?
Lois made it for 2 weeks without a single neutrophil, and just when we knew she was turning the corner, she got a fever. It had been a really rough weekend. She wasn't sleeping. She was doing a lot of crying. The doctors thought perhaps it was the steroids still left in her system from that delightful transfusion she had. But at Sunday night at 11pm, she busted out a fever of 101.3. I have to admit, we did a lot of hand wringing trying to figure out what we should do. Head to the ER on a Sunday night at almost midnight in the driving rain? Or wait until the morning and go to the clinic? We erred on the side of caution and I headed to the hospital with her. By the time we got there, the fever had dropped below the official "you need to come to the ER pronto" mark (100.5) but we were admitted anyway - and got stuck there for just shy of 48 hours even though her fever was never over 98.6 for the entire duration. I wanted to choke her.
I will spare you the gory details of those 2 days. They involve me being rude to a pediatric resident and refusing a transfusion of red blood cells. Don't worry. The oncology team was behind my decision. And the rudeness? I'm not a pleasant person at 4am. What can I say?
Lois has been here at home, happy, and healthy since then. Her protocol called for her third round of chemo to start last Friday, but her neutrophil count was still too low. We will go back tomorrow to check again. If it's 1,000 - we have a lumbar puncture to administer chemo in her spinal fluid and then start a 96 hour transfusion. If it's below 1000, we come back home for another week. I don't know what to hope for.
The hair on the back of her head randomly started falling out last week, and she's now the proud owner of a rather intimidating looking bald spot. She has enough hair on the top to do a spiffy little comb over, but I'm not sure what the future holds for her, follicly speaking. We took Mac to have his first hair cut this weekend and he went from a little boy to a big boy with a few snips of the scissors.

Handsome little devil, isn't he?
Handsome little devil, isn't he?
Check out that stance. And the size 6 double wide Stride Rites. He's a force to be reckoned with, I'm telling you.
They did a little work on Lois's hair too and she's now the proud owner of an "inverted bob." I don't really know what that means, but I know that I LOVE Lois's hair for the first time in her life. It's adorable. And of course, it's falling out.
The universe has quite the sense of humor.
What about Easter, you ask? Well, Easter didn't really happen here at Chez Hogan, and thankfully my sweet kids are too young to realize they didn't get a basket full of candy and toys. But there was this:

And this:

We did celebrate our April Fool's birthday with cake:
The universe has quite the sense of humor.
What about Easter, you ask? Well, Easter didn't really happen here at Chez Hogan, and thankfully my sweet kids are too young to realize they didn't get a basket full of candy and toys. But there was this:
And this:
We did celebrate our April Fool's birthday with cake:
his favorite meal:
and his two favorite kids:
And then this week we went to Flemming's Steak House to REALLY celebrate with expensive cuts of beef and a bucketful of Bearnaise sauce. Thanks for babysitting, Aunt Marpa.
And the rest of the time, we've been here. In the house. Watching Sesame Street. Doing laundry. And trying to keep Mac from eating cat poo, stabbing himself with scissors, using Daddy's potato chip bags as cymbals, smashing his fingers in the kitchen drawers, and chewing on the speaker wires. I'm a bit stir crazy. Aside from a trip to Target this week, we've stayed put hoping to keep Lois infection free.
Actually, Tuesday when both kids went down for a nap, Jay (who works from home on Tuesdays) let me run to JoAnn's' to buy some yarn. I picked up some yarn and needles I needed and headed to the register only to discover I had left my wallet at home.
And that about sums up my week.
Thanks for the harassment, Stacy. I needed it!
Before you ask, Lois fell in the playroom and scraped her nose across the shelves. That's the lovely red scab you'll see in the pictures. And no, Mac isn't wearing pants in the birthday photo with Jay. Frankly, by 7pm at night, I'm lucky I'm still wearing pants.
Thanks for the harassment, Stacy. I needed it!
Before you ask, Lois fell in the playroom and scraped her nose across the shelves. That's the lovely red scab you'll see in the pictures. And no, Mac isn't wearing pants in the birthday photo with Jay. Frankly, by 7pm at night, I'm lucky I'm still wearing pants.
9 comments:
Thanks for the update...and not to worry...I'll just keep checking back...you've got your hands more than just a little full...(love the pics!)
Great to get an update on everything that's going on. You do have alot on your plate, so I understand the lack of desire to blog. But Lois has been on my mind and I have been waiting to hear something, I was supposing it was simply a case of "no news is good news". Sorry to hear she is losing a bit of hair, but hey that#s all going to come back, probably even thicker! Otherwise she looks so great, and so well, and your little or rather big boy Mac he is looking so cute with his hair cut. Love love all the pics!
Thanks for the update! Nothing like family to get you moving!!
We always make fun of the size of my son's head too!
I'm praying her count is at 1000 and you can get on step closer to done!!
OH! And happy birthday to Jay!!!
The kids are just beautiful. You're all awesome. Happy belated birthday to Jay. I need to start plotting another road trip south. Love you.
Sorry for fb nudging! We don't need much to be satisfied...a mere nugget of what's happening at Chez Hogan. As Tina said, Lois is on my mind and I check back often to see if she is having another treatment and if so how it is going.
Love the pix. Mac looks so much older now!
Good luck with the daily battles of Macness, germs and neutrophils.
Remember it's ok to add more meal requests to the Lotshalpinghands page!
Thanks for an update! Happy to hear all goes as well as can be expected.
As for losing the hair...it grows back quickly. When Carly was Lois' age,(well a tad older, like 3 or 4 months) and diagnosed with leukemia, her hair was down almost to her waist. Talk about being shocked when the hair fell out. But,,,now Carly is 8 and her hair is once again to her waist. And beautiful, if I do say so myself!
Thanks for the pics of the kids. They are gorgeous. Oh...Mac's head fits his body perfectly!!!
BTW...I LOVE your blog. It's one of my absolute favorites. The way you write is fantastic.
A friend steered me here. I visit infrequently so hadn't noticed a lack of updates. You need more readers like me!
I had to comment today because I'm the mother of a five year old we used to call Big Head Paul. I laughed out loud when I read what you said about Mac! Thankfully
Paul has grown out of, or into, his big head. I'm also the mother of a 7 year old with DS who's a cancer survivor, but his head is of normal size (where's the fun in that?).
Give little Lois a squeeze from a momma who has watched her little one go through it too. Hang in there!
Ann Bremer
www.caringbridge.org/visit/johnbremer
You and Lois have been on my mind so I'm so glad you did a blog update. The pictures of your kids are just beautiful!
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