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!!

Tuesday, May 8, 2012

House Arrest

There is nothing I hate more than the feeling of having the rug swept up from under me. I've never been keen on surprises, and I've never been overly patient.  So this week has really been testing my own ability to cope, HA! and it's only Tuesday. It's going to be a long 2 weeks...

Yesterday Brinley had her scheduled blood work pre-surgical yaddd yadda.  Last month her counts were great, the talk of increasing chemo was breached, and put off until this month. So of course we stroll in thinking her counts will be great and we can continue on this lovely little path she's been on.  WRONG.  Her counts have tanked, not bottomed out, but they suck and she's neutropenic (thanks to a cough and ear infection).  So we've been instructed to withhold her oral chemo and we have to come in for another CBC in 2 weeks. That also means 2 weeks house arrest, nobody in, and certainly no Brinleys out.  I can deal with the fact it kind of screws up another anniversary for Blake and I (last year I was stuck in isolation with Brinley for 2 weeks) we can always take a rain check. Mother's Day holds the same feelings, rain check we can play catch up later, it's just not that important.  However I'll have to miss my son's last 2 baseball games of the season. I have yet to miss a practise or a game this year, and the last two big games I have to sit at home and silently cheer.  The guilt is overwhelming, I understand that Brinley has missed out on a lot, she's the sick kid and I feel for her, but Carter isn't the sick one, and I feel he still gets the short end of the stick.  Whatever Brin misses out on, she's made to feel cherished through the hospital staff, friends and family. Carter gets to have his mom explain why AGAIN she can't be there for him. I'm entirely grateful that he handles it so well, but it destroys me that he even HAS TO.

...Not to mention week one of lock down is steroid week? What kind of cruel and unusual punishment is this?

Today Brinley had her lumbar puncture, she was the only one slotted for today so instead of pacing the waiting room, the nurses were kind enough to let me pace the recovery room. They even offered up a few sympathetic looks and small talk. Guess I wear my anxiety all over my face.  After the LP is done and over with they wheel Brin out on her bed with the oxygen mask strapped to her face. This is a first for me, I've always been there once she's either been fully awake, or stirring a little, so to see her out cold and involuntarily jerking scared the shit out of me.  Yes jerking, I can tell by the look of horror that must have been on my face the anesthesiologist says, "she's still out and she's trying to cough that's why she's moving like that". I swear I aged 10 years right then. It took me back to the time where my father in law was on life support, and the machine was forcing air into his lungs, and his body to jerk slightly at the force. Oh cancer you never fail to send me reeling down the rabbit hole.