Firstly, for those of you who might not know, today is Amelie's 3rd Birthday. I kinda want to shout it from the rooftops, to let everyone know. I think that's mostly to both celebrate that she's still here a year after that wackadoodle crazy diagnosis that no one in their right mind can ever really be ready for...but also because I find myself so frustrated and angry that she's going through this process and she's in limbo.
There's such a different story unfolding with these rounds of chemo. When we had the first diagnosis, they laid out a plan of attack in our first meeting in October after the brain surgery. They told us exactly what would happen, for how long it would last, and then followed that plan. They had slight deviations, but it was the same plan the entire time.
Now? It seems (to me, a not-so-humble observer) that we're off into much more uncharted territory. Every conversation we have with the Oncologist team is filled with lots of "we'll see what happens...", and "we'll make that decision when...". To me, that's what happens when I cook. I keep throwing things at a recipe until I get to a point where it's either good, or tolerable, and then I eat it. For me, that works great, but Shelley says I have broken taste buds. For Amie? It scares the hell out of me.
"Throwing spaghetti at the wall to see what sticks" is another analogy that I might use to describe her treatment. I don't mean to say that they don't know what they are doing, but they are definitely just trying things out to see if it will work. There's 0% certainty anymore, and that was really reassuring last time.
Anyway, today is her birthday, and Shelley is doing her absolute best to make it special. We bought her breadsticks (Jet's Bread) last night for dinner, they're going to the pool to swim today, and then heading to Mott for chemotherapy. They'll be there until 5:30p, head home, eat her "volcano cake" which is a pile of creatively frozen ice cream, read some stories and then go to bed. She'll be wiped.
So it's another lost thing for a little girl who doesn't know what she's lost, losing nor might lose. It's a bit sad for me, but the important thing is to make sure things are completely happy and explosively fun for her. I can do that. That's my best present for her today.
Monday, October 7, 2013
Ahhh, so what's been going on in the last three weeks?
Shelley and Amie did the first 4 days in the infusion clinic, and I did the 5th. They were all very long days, but that's to be expected. You have to be ready for this kind of day. (Except for mine, which was a Saturday and easy).
It's long. Like... mindbendingly long. Drop Anya off at 8:10. Then you have to drive to Ann Arbor down 23 in the morning traffic (45m drive becomes 1:15). Then parking, getting to the clinic around 9:30. Wait in the clinic waiting room until 11am, possibly longer. Get called back to the infusion room. First they have to give her anti-nausea meds, and wait an hour. Then an oral chemo, then they wait an hour. They hang the chemo, and that takes another hour or so. All the while, if the nurse who is taking care of you has another patient has a rough day, the entire process slows down more. Once all that is done, they deaccess Amie and send them home. Shelley walked out of the hospital each day no earlier than 3:00pm. Drive home, again an hour and walk into the house at 4p. Or 6:30p the first day.
It challenges the soul if you aren't girded with patience.
...and here's the thing, I don't have to deal with much of it. My job is to go to McBride Middle School and rock that out of the park. 95% of my students really enjoy being in my classroom, and really try to be the best version of themselves. They are giving me great feedback, and filling my bucket on a daily basis.
Shelley? She's kind of adrift right now. She's giving her all to the kids, and then filling every spare second of the day with SOMETHING to not think about what's going on.
We put the kids to bed each night between 6p and 7p, because the kids are just done by then. Once that process is done, it's 7p-8p, depending on when we start. We have virtually no energy at that point, and usually watch some bit of television, if we have a show waiting. (We don't have cable, and watch a few shows on Hulu, Amazon or Netflix). But we're just empty shells at that point most nights.
Not sure how Shelley's staying afloat, but she is, and it's amazing. :)
So that was week 1 of chemotherapy.
We had a week with nothing, so we decided to try to teach Amelie to swallow pills. Ever tried to do that? Yeah, it's about that easy. We started with Mini M&M's and she did great. We moved on to the candy bits of the candy necklaces. Once again, she aced it. We asked her to swallow the Accutane pills that are the exact same size as my Nexium and she.....REFUSED!
Big shocker eh?
So what do we have to do? Use needle-nosed pliers and squeeze the ever loving crap out of the pill, after we pierce it's surface, into a spoon. We mix in a bit of chocolate syrup (Midnight Moo from Trader Joe's is the fav right now), and she takes it down no problem. I bet we're getting 98% of the dose, so it's not really an issue, but seriously...just swallow the pill. (Dreaming, I know).
We're in the middle of that protocol right now. We end that protocol on the 15th, and then immediately start back with IV Chemo the same day.
Want to know the best part? Amie gets to spend her 3rd birthday on IV chemo!
<Insert sounds of Crickets as no one is cheering here>
Yeah, her 3rd birthday is Friday October 18th. Mine is the 19th, but I'm opting out of the birthday thing this year.
How is Amie handling all this? With the grace and derring-do of a superstar. She really is. Not sure if this lower dose/longer duration chemo is easier on her body, or she's just getting more stamina towards it...but she's really doing great. She has tons of energy, and really wants to move and play. She stops eating during IV chemo, her GI tract goes bezonkers for a while, and she has her low days...but compared to the hospitalizations last year when she refused to get out of bed, she's doing amazingly well.
That's enough day to day for now....
Home Depot did a great day last Saturday, where they did a home safety day with lots and lots of activities for kids. The girls absolutely loved it.
I show you this picture not for any quality of the picture, but only to showcase the "Sprouts". Amie loves her "Sprouts" as she calls her little hair nubbins. (Should they remind me of Miley's hair nubbins? Why do they? I don't know) When she takes them out, they produce this completely obnoxious explosion of hair at the back of her head.
She is not at a "cute" place with her hair. But she is enormously cute.
This is the current state of Amie's smile. Her eyes are sort of committed to it. Her mouth? IT'S A VAULT! NO SHOWING OF TEETH!
But I really think she's trying to smile, and am willing to give her a 7.5 on the smile. Russian judge? 4.3? Whatever!
Ok y'all. Time for me to sleep. I'm out!