In case your ears haven’t been burned off recently by the new smash hit kids song “Baby Shark”, now is your chance. Yes, this video has 2+ Billion views, but only half of those have been done by us. Here is Maggie teaching the dance moves to ever-patient Dr. Prasad.
So, Laney loves cooking. She routinely helps me make Mommy’s coffee in the morning (which is very labor intensive the way we do it.) And here she is cooking fajitas. The pan is scalding hot, but Laney is fearless, even when occasionally singed: a sous-chef’s right of passage. I was derided for this hairdo that I still think looks fantastic.
My mother bought a Rubik’s cube for Kaya for Christmas, and I have become obsessed with it. It’s a wonderful quick puzzle to solve that gets me thinking and helps me reset between tasks at work. I like it so much that I got another one that moves faster so I can solve it for time. Why is this so addictive?
A great story of Columbian resourcefulness led to this little toy truck. The woman on the left is Doña Aydee, she keeps our floors squeaky clean for our rug rats. (Mila, our Aupair, is on the right, of course.) Mila is from Colombia, and so is Aydee. Aydee went to visit family over the holidays, and ran into Mila’s uncle, who said oh hey, I thought you might be here, so I brought Mila’s Christmas present here in case you would be willing to deliver it back to her. So she did. Amazing! (And, she also brought us a little toy truck.) Discovering this type of family connection is something that American’s could never do.
The little truck is called a Chiva, which apparently is an intensely cultural Colombian artifact. Thank you!
Some scary, and exciting news. On the heels of Maggie’s adenovirus positive test, one of the possible treatments is to ramp up her immune system. (She pretty much has a complete immune system from a cellular standpoint, it’s just not working because the drug Cyclosporine keeps it in check.) When facing the threat of adenovirus, one possible option is to let the immune system out of the bullpen to go after it.
So, that’s what we’re doing.
What was originally planned as a ramp from 9mo post-transplant to 12 months post-transplant has now been rescheduled for now until 4 weeks-from-now. The correct reaction to that is yoinks!
If we can go earlier than planned, why not always do that? The protocol for children her age calls for the taper to begin between 6 and 9 months. Usually, they start at the back of the range for caution’s sake. You want the new immune system to have plenty of time to get to know the body. Why rush it, right? Let’s all get friendly for a few months. Maggie is now at 7 months, so she’s in the acceptable range to go full throttle. With the adeno out there, it suddenly doesn’t make sense to wait. Let’s rock-and-roll.
That’s why this is scary and exciting at the same time. During the ramp is when we find out how her new immune system and her body will get along together. Will it be ‘happy happy new BFFs for life!’ or will it be more ‘I called the chair by the TV, so get out.’
We’re going to learn the answer to that question sooner than I had emotionally prepared for, which is scary. On the other hand, perhaps we’ll be able to enjoy some of the springtime outside. Screw you fungus.
All is well right now, but we had a bit of a scare. Maggie came down with adenovirus, which is potentially a big deal for kids getting bone marrow transplants. Luckily, kinda, adenovirus is one of her main doctors’ areas of specialty. He is/was the primary investigator in several trials of a promising drug for treating adenovirus.
This is a good thing because the typical treatment for adenovirus is a drug called Cidofovir which has some pretty serious toxicity. Instead, we were lucky to start on a trial for a drug cleverly called Brin-cidofovir. Brin, I have learned refers to the small radiating blade of a fan, which is appropriate because Brin-cidofovir has only one known side effect: wicked diarrhea.
Anyhow, we started on that drug, and the adenovirus is now undetectable, at least in serum. Yay!
We’ve been trying to get a coordinated pajamas photo together for 2-weeks now, and we finally pulled it off.
Happy new year from the Rose clan! Here’s a picture of K&L ringing in the new year from Great Aunt Kim and Great Uncle Rich’s hot tub in PA. They’re selling the house this year, so this is the last hurrah. Here’s to 2019.