Some more notes from Fern 7/7 - 7/9. . . .
For several days, Annie has been suffering
from terrible muscular pain in her lower back/flank muscles. She has
cried in pain more from this than anything here to date! The first night
the pain was so severe they gave her a very low dose of valium (I wanted some
too) and that let her sleep comfortably. The pain continued the next day
and we were told that sometimes leukemia patents suffer small fractures in their vertebrae as a side effect of some of the meds, so the doctors ordered an X-ray. Thankfully, it came back normal so diagnosis was muscular pain, likely caused by a combination of laying down in a
bed a lot and the steroids. Most 4 year olds don't sit in bed all day, day after day. So the last few days with the back pain she was pretty unhappy. She is often demanding a "heat pack' now along
with food, her latest craving, corn on the cobb from home (thanks to the food train families who've made it for us!). She told me
"I have to walk like an old lady" because she walks hunched over (
kind of cute and funny that I had to laugh and she got mad and said to stop
making fun of her). Dad did same thing, but didn't get the hint when Annie told him off.
The good news of the week seems to outweigh the bad though
(at least in her parents eyes).
First is that the test for the MRD - (Minimal
Residual Disease) came back with NO leukemia. The
MRD is able to detect the disease at significantly smaller level than a
microscope. This is great news. The REAL great news we are hoping
for however will come on Day 29 (which is July 22). That's when the doctors will do another
bone marrow draw and do the MRD of the actual bone marrow. If it is
clear, that means phase one of treatment (called INDUCTION) will be over and
she will be in remission (which doesn't mean treatment is over, just that we
can move onto the next phase of treatment).
The other good signs are that she has not had a fever since
the first day ("every day with no fever is a good one" - common quote
around this floor. Additionally, after bottoming out at a low of
40, her ANC starting climbing today and was at 60 (just so you know for a
leukemia patient they are very pleased with an ANC of 500- 1000 (an average
person has an ANC of I think something like 5000). We are just happy that
she was going in the up direction. Also, her platelets more than doubled
from Thursday to Friday and her hemoglobin and WBC went up as well.
She had chemo today (which incidentally is an IV that lasts
15 minutes - again - very anticlimactic) so the numbers may drop again... but at
least she was starting to trend up on her own - another good sign. She
had minimal side effects to the chemo today as well, she was a little nauseous
about an hour after but seemed to be fine after that until she started to have
back pain again and screamed for a heat pack.
Thanks for everyone who helped out with Lindsay's birthday and getting her "bedroom reveal" ready (she watches a lot of HGTV). She seemed to have a great day despite having her 10th birthday cake in the hospital (there was a much conjecture about can we light the candles or not - went on for a several minutes until we realized no one had matches or a lighter - so it was a moot point).
- last night, just before I left hospital, the nurses noticed and then confirmed that Annie was running a fever. a little disconcerting that the 4 or 5 readings they did were all over the board - "not a perfect science" they say. but, the high reading was around 102. remember - regular person gets a fever, just a sign that there's some virus or bacterial infection that their body is fighting - minor stuff. not so, for someone with virtually no WBC -
- so, all hands on deck - residents were called in to examine her, two blood tests, and a nasal swab. these things are done to determine whether viral or bacterial and what kind. viral tests are quick and bacterial take up to 48 hours.
- she also was immediately put on two different antibiotics (again, thankful for the pharmacy that I could probably hit with a spit wad if our room door was open)- one for pneumonia, and one is a sort of catchall antibiotic.
- fever quickly subsided and later we found out that all of the viral tests were negative. still weighting on bacterial cultures.
- Oliver had a soccer tourney in PA this weekend, so I did a lot of driving back and forth and when not at the hospital, Fern kept me updated with calls and texts. fever stayed at bay all day today and the doctor set us at ease by reminding us that part of the reason she's kept in hospital is to tackle this kind of bump in the road as soon as it presents itself.
- on way home from PA this afternoon, I was reminded that I had to bring Annie macaroni and cheese, "the orange one, Daddy, not the white one". this will go on for a few days and then she'll be on to something else. don't have to tell you all that - you know her deal. . . . .
- Annie's hair is falling out. we thought this would be a challenge to deal with down the road - 5-7 months from now. so much for that. she always used to tell me, "daddy you need to get hair - you have no hair. you only have it on your body". thank God I always told her I didn't mind and that hair was overrated. now, maybe I sound a little credible when I tell her that. tonight, we were taking out her braids and she was looking in her little hands in between her fingers and said, "dad, my hair is falling off". I told her "who cares"? she said she didn't want to be bald. said it was okay for dads to be bald but she's a girl. I told her I like her with hair and will like her without hair. laughed a little at her and told her we could be bald together. she wasn't crazy about the ribbing, but then reminded me that she wanted to get a haircut. I told her we'd talk to mommy about what kind of haircut to get and she was okay with that. whew - narrow escape. how come she has to notice her hair is falling out when I"M STAYING AT HOSPITAL????
- she's now falling asleep asking me if we can get her "coffee drops" tomorrow. I got her some life savers the other day to help with the cough and told her I'd get her some real cough drops at the drug store. guess she's a bad listener. now she thinks she's getting coffee in a candy form. keeps asking me what color they are. . . .
- good night.
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