Monday, March 28, 2011

4 down

Last Thursday I faced my anxiety and fear of the unknown as Brinley had her first go at s-DI (standard delayed intensification).  I was nervous the night before, and on the morning of, once we got there we went through the typical mundane task of having her accessed, blood drawn, doctor appointment etc.  I told the doctor how nervous I was about this next phase and he did tell me that it's a bit tough on some kids because of the steroids and the amount of chemo they have.  The steroids make them consume a large amount of food, and the chemo makes them best described as temporary bulimia? In any case, her blood work as good enough that she didn't need any platelets, or RBC, so she received her vinecristine and doxo before her lumbar puncture, and that went well for the time being.

Before she was about to head into surgery, the nurse had come up to me in the waiting room and said that the doctor wanted to speak to me alone in his office and that they would keep an eye on Brinley. The first thing that crosses my mind is "oh no, bad news" it's a feeling that is best described as revisited raw emotion.  I've felt this once before and it was after Carter was born and he had his first shot.  The way he cried was exactly like the first cry right after he was born, and without warning you're flooded with this raw emotion, the same emotions you had the first time. Anyways, while I was sitting alone in the doctors office I had that same feeling the day she was diagnosed, the fight or flight feeling, the absolutely terror and agony that the worst it around the corner. I felt like i was going to be sick, or pass out. The doctor came in after about 5 mins, or what had seemed like a lifetime to ask me if I wanted to take part in treatment research for leukemia....yes that was it.  If I didn't like our doctor I would have stormed out...but I do like him, he's amazing, so of course I sighed up.
                                                                                                                                                                                                                        The next day how Once I got Brinley home she was ok, not great, but ok.  She was a bit sluggish and eventually fell asleep ever she was in full blown effects, she threw up a few times and was very sleepy and groggy and just out of sorts.  We didn't venture out and after the 3rd time of being sick I decided to give her a bath and maybe that would help to bring her around.  I know when I feel not so hot, a shower makes me feel human again.  It seemed to have worked with Brinley too, she of course fought the idea, but once I got her into the warm water she was much happier. I even got to sneak a picture of her dancing after her bath! All of that dancing must have caught up to her  though because she was pretty sick Friday night and most of Saturday.

Saturday was an exciting day for Brinley as well because she got to meet with her wish team from the "make a wish foundation"  They brought her wings, a necklace, a barbie, a backpack, quilt, crown, and a special teddy bear. Fortunately she was a good burst of energy for the first 10 mins they were there, then she slowly crashed and ended up napping for a few hours.

Brinley and her "make a wish" barbie
Tomorrow Brinley will receive two PEG shots in her legs, one in each thigh. Basically all cells need a chemical called asparagine to stay alive. Normal cells can make this chemical for themselves, while cancer cells cannot.  Asparaginase breaks down asparagine in the body. Since the cancer cells cannot make more asparagine, they die.  Pegaspargase is a modified version of the enzyme asparaginase. Then on Thursday she will have more vincristine and doxo.  It looks like a very fun week is ahead of us.  To top it off it's spring break for Carter and unfortunately due to Brinley's counts being jeopardy we have to stay in, I did buy a few games, and crafts to do with Carter since Brin will be more than likely asleep this week.
4 down, 56 to go
"no more meds mom"

1 comment:

  1. Oh Morgan what trials you go through. As you were, in your own words "armed for battle" it sounds like it helped you and Brinley last week
    and hopefully will get you thru this week too.. Ahhh - the magic of
    warm water, and that little dance afterwards, that is priceless.

    Hope you and Carter get some crafts done, maybe perk Brinley up as
    well to lend a hand? Always thinking of you ....hugs...