Monday, May 28, 2012

The Land of "not so great"

Its been pretty quiet since I last blogged, mainly because we spent the last 2 weeks locked inside the house. I unfortunately missed out on Carter's last baseball games, and party, but was proud of him and his team for going undefeated all year.

During the last 3 1/2 weeks, things with Brinley took a turn, I can't say a turn for the worst, because the worst is being dramatic...but it took a turn for the "not that great".  After our two week house arrest, Blake and I took Brinley into clinic for another blood draw, to see if she could come out of hiding. After all she was acting great during the weeks of being in the house, lots of energy, great mood etc. To our surprise Brinley's ANC went from 204, to 18, I assumed we'd go back to house arrest, but the oncologist at the time, said it was unneeded and to go about life as you normally would.  So we went to Best Buy and ran home. The whole time I question my last 2 weeks of being her under lock and key, since her ANC was better then, did I really miss out on my sons last games because I'm paranoid?  Saturday comes and we make plans to hit up the Tempe Marketplace (lovely outdoor mall area, because "outside is fine") I notice that Brinley is off today. She woke up with a tummy ache, and slept until 9am, she woke up watched TV for a while, and then requested a nap.  Nap requests are kind of a red flag for us when she's not:  a.) on steroids, or b.) coming off of a lumbar puncture or a dose of vincristine. I'm about to put her down for a little rest when I feel her head and she's hot, DAMN! I take her temperature, and she's 100.0, not exactly a fever, but an elevation, something to watch.  While she rests, I call the oncologist on call and let them know that Brin may be developing a fever, she tells me to let her sleep for an hour, and retake it, if her temp is 100.4 and over bring her into the main campus ER.  An hour goes by, and while the clock is running out, I'm running around the house packing, I will not get caught with 2 outfits like the last time, and worst case scenario I have to unpack...big deal.  I retake Brinley's temperature and she's 101.7, double damn and shit! Off to the ER we go.

Upon arriving the oncologist has called the ER to inform them that Brinley is on her way, and they have gone ahead to prep a room on the 7th floor of the Phoenix Children's Hospital. After all the formalities of the ER, height, weight, port access, blood draw for cultures, they start her on a round of antibiotics and we wait for the admitting paperwork.  In the meantime Brinley knows full well that we're sleeping here, and is rather excited to see her "room". Over the next 4 hours she's restless, and continues to look DIRECTLY at the nurse station, and in her loudest voice says, "MOM WHEN IS MY ROOM GOING TO BE READY!?" This girl knows how to get her way.

Once we're admitted, we get settled in our room, I begrudgingly unpack, and make up my bed. Say goodnight to Brinley and notice a little bump on her chin. I ask her, "what did you do to yourself?" and she says she fell on her chin getting food, not exactly a far fetched idea, but why have I just noticed this? Chalk it up to a long week being locked up and exhaustion. The next morning we rise and shine to a face full of hives! The nurses and residents hum over it and give her a dose of benadryl, clearly it's something that she had a reaction to prior to being admitted.  That afternoon, after her 3rd dose of antibiotics, gentamicin, and cefepime, she breaks out again, this time much worse.  The doctors again scratch their heads, and take away the gentamicin, because cefepime isn't something kids are really allergic to. The next day after her afternoon dose of cefepime she breaks out in hives, again, worse than the times before. More head scratching, they figure, the gentamicin is probably in her system still, so she's having little aftershock reactions, calm it down with benadryl and she'll be fine tomorrow. WRONG the morning comes and in hives and they are painful and itchy this time! The oncologist takes her off of the cefepime and replaces both gentamicin, and cefepime with an antibiotic called zosyn.  Well she's allergic to zosyn too.  From what I understand, those are 3 "big gun" antibiotics she's having reactions to, there are more antibiotics to use, but these seem to be their favorite. The next runner up is meropenem, if she's allergic to this we need to bring in a specialist.  Meropenem seem to be the winner for Brinley.

...Meanwhile, all this is going on and Brinley's ANC is a steady 0.  This leads them to their next worry.  Because her ANC has been 0 for 3 days in a row, they are worried that her bone marrow isn't making neutrophils. The oncologist warns us that he will give her 2 more days to put a number on the board or else they need to go in and draw bone marrow to rule out relapse. There's that word again, I hate that word, I especially hate it  when used in the same conversation about my daughters well being.  Instantly my legs feel wobbly and numb, I'm numb, I feel like I've been sucker punched.  I take a deep breath and call Blake to let him know whats going on.

This is one of many times I can truly appreciate my lovely husband, he has this amazing calming effect on me. He assures me that whatever it is, whatever they find, we'll tackle it and do our best to keep Brinley as healthy and happy as possible. Seriously. this man is amazing.

So after a very restless night, the nurse taps me on the shoulder early early in the morning and whispers, "hey mom, her ANC is 96". I want to cry, I'm so relieved. Of course I call Blake, and then my mom. Her bone marrow is recovering!!!

Sunday her numbers are amazing, ANC 375, lots of monocytes, lots of evidence that her ANC will continue to rise, and we are SENT HOME after a very long 8 days.

Brinley will go into clinic this week to have more blood work, to see if she's ready to continue chemo (she's been on hold since May 8th).  This Saturday Papa and Grandma will come for a 3 week stay and Brinley couldn't be more excited, to be OUT of the hospital, and then to see her favorite people?! What more could a girl ask for? Maybe some good blood counts!!

1 comment:

  1. More struggles for you all, I am so sorry to hear that. I was hoping that
    Brinley could stay out of hospitals now for a while. This illness seems to
    be throwing you a lot of curve balls, but you handle it head on and are all
    such troopers and such an inspiration to others. I do hope you can now
    enjoy your time with Mum and Dad, get a little more rest yourself Morgan,
    and hope Brinley continues to improve. Love and hugs....Auntie Pauline.