Go gold!

September is childhood cancer awareness month, did you know? Did you know that the gold ribbon is for childhood cancer? I see a lot of breast cancer awareness, pink ribbons everywhere, especially with October around the corner...but I have yet to see a single gold ribbon. It's disheartening as a parent to a child with cancer how little awareness there is for such a life challenging disease.

Now that it is September, it really makes my mind drift to nearly 2 years ago. I've met families that are new to this world, they are scared, uncomfortable and overwhelmed. I remember feeling like that, I understand the struggle and the heartache they feel, and every once in a while, on a day Brinley is feeling particularly rotten those memories, doubts, and fears some rushing back. It's easy to become complacent in your day to day routine, where cancer is the norm, check ups, clinic visits, spouting off prescriptions  allergies, doses, and blood counts. To be honest I don't really remember what life was like before cancer. Most kids get bruises, aches, pains, sore limbs, but if Brinley ends up with any of these typical ailments, my mind races, "does she need a CBC?" "maybe her platelets are low" what if, what if. I have no idea what it's like to brush it off to, "oh she's just being a kid" and I'm not sure for the next 5 years if that feeling will return.

With Brinley entering kindergarten, my anxieties and fears become magnified, am I too protective? Maybe I'm giving her a complex, and she will become the kid that worries all the time, It's a struggle, I'm trying to find a comfortable middle ground, but there is a voice in the back of my mind saying, "you can never protect her enough".

Speaking of Brinley and kindergarten, she's loving it, she's made great friends, and has become the social butterfly. I couldn't be happier with her school and teacher, they have really gone above and beyond to ensure Brinley is in a safe place. The first week in she caught a bad cough, and we had a croup scare, but she turned out to be ok, and managed to kick the virus all on her own!

Since we've been out of the hospital in May, Brin still isn't on her full chemo dose, they say her body can't tolerate it, every time the doctors increase her dosage, her counts plummet, and the main focus is to keep her cancer free and out of the hospital. We're managing the cancer free bit, but making sure her ANC stabilizes, and she remains fever free has been a challenge.

In other news we have 2 more lumbar punctures to go, oh boy how far we've come.

first day of school!

helping the Dr. administer anesthetic

Hopefully I can stop neglecting this poor sad blog, but truth be told, with school, sports, extra activities, at the end of the day I'm lucky if I can get out a coherent thought.

waking up

beads to date

first d-backs game!

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.

Hives!

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!!

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.

Cancer never sleeps.

What a weekend!!

A few months ago, Blake caught wind of a cancer relay here in Arizona, in Phoenix to be exact.  So he signed up and the ball started rolling.  He was lucky enough to have some of our friends and family sign up on his team, since the race is 12 hours, and one person from the team has to be on the track at all times...he would have been walking a full 12 hours solo if it wasn't for them.  The lovely big shock to me, was that in the past few months, Blake and my girlfriends from Edmonton have been working on a surprise.  Little did I know that they had planned a trip down here to take part in this relay with Blake, So when I got a phone call from Jill, Kelly and Colleen asking me to join them for a beer...in the CITY...I was totally shocked and caught off guard!   Needless to say I quickly threw some over night gear into a bag and ran out the door to join them.  The night kicked off with drinks and dinner, drinks and a dueling piano bar, drinks and a club where we stuck out like a few sore thumbs, and of course lots and lots of laughs.  Needless to say, Saturday morning came hard and fast, taking aim for my brain, I felt like mother of the year, sitting among the Mormon folk of Queen Creek, ice cold water bottle firmly pressed to my forehead nursing a hangover.  After the game ended we ran home so Blake could sleep a bit, since the walk was from 6pm-6am (because cancer never sleeps), he needed a few hours as a buffer.  I won't lie, I fell asleep for a bit too...much needed! 

The relay was amazing, Brinley was the youngest survivor taking part that they had ever had.  Needless to say she became a celebrity among the crowd. She had picture requests with other teams, high school students, and comity members alike.  She was brought on stage during the opening ceremonies to personally meet Sparky, the ASU mascot (he was a little scary for her). She also took lead during the survivor walk which was particularly emotional for me. You see, Brinley had to kick the survivor lap off, but she wanted to do it by herself, she didn't want mom and dad's help...however she was a little taken back by the crowd lining the track, clapping for her.  So Carter, being the amazing little man that he is, ran around the inside of the track, just in view of Brinley, shadowing her the whole time, and yelling out encouragement.  It was phenomenal.  Here is my 6 year old little man, taking it upon himself to comfort and encourage his baby sister to run around the track, making it look as if she was doing it alone...but he was right there with her, every step of the way. I still get choked up just typing the words.

Next came to luminaria  ceremony, which was absolutely beautiful.  We all followed a bag piper around the track, and the track was only lit with the hundreds of luminaria's.  Once the lap was complete, the names of the cancer victims, and survivors were read out loud while we all silently walked in the dark.  Then we each stood behind a luminaria, one per person and we were all handed blue glow sticks.  As the announcer then asked the everyone if we had lost a mother, father, sister brother...etc to cancer and if we had, we were to break the glow stick and walk around the track.  It was amazing to see these tiny lights break away from the pack, and walk the track. Needless to say it was an emotional moment where I kind of had to break away and walk alone for a bit to collect myself.

After that I took the kids to our friend's Nate and Natalie's house for the night for a sleep over. Much better solution than driving an hour and 20 mins to get home...much more fun too! Blake and Nate came home limping, raw, and so so sore.  I guess walking for 12 hours will do that to you.  Blake had huge sore blisters from his shoes, and stiff muscles.  But I'm so proud that he really didn't stop.  He said if he was to stop, his muscles would get cold and seize up, so to avoid added discomfort and pain, he just continued to walk.

To say this weekend was amazing wouldn't be enough. I can't put into words how much this all meant to me.  The visit from my friends, the treatment Brinely received, our friends and family's dedication to supporting the cause, and my husbands amazing effort to not only walk for cancer, but to surprise me.  It really means everything to me. Love you all!

The Luminaria we made for Brinley

carter and brin holding the "brin's cancer kickers' sign

Notes from the Clink

We're on day 5 of being holed up in the hospital. You would think that this is something I've grown use to due to the last two times being stuck in the cancer pit but that just isn't so.  After months of being free to roam about you tend to forget what it feels like to have to sit bed side to a sick child.  I always find that I enter the same patterns when we're admitted.  The first 2-3 days, I'm happy mom abiding by the hospital rules and regulations.  I happily sit in the play room, play "shopping" and do endless crafts that we cart off to our cell ..err room and hang on the walls. Then days start to run together, I find myself repeating questions, or having a conversation with Brinley's nurse, and pausing because I remember having the same conversation yesterday. By day 4, I want answers, answers that cannot be obtained by looking in a book, or hassling the doctors about.  These answers are in the blood work.  Every morning at 4am the nurse enters our room to draw blood, and every morning at 8am the results are in. I sit there waiting for the good, or bad news. Good news being that we can go home, her counts have picked up and we are FREE, but instead I get the bad news, "her counts are up but not enough" or, like this morning, "her counts have dropped, you're probably going to be here for a few more days" with each 8am crash, I beg the day to move by quickly so we can get to the next 8am news.

Today has been particularly rough because Brinley hasn't been feeling well.  Last night she had her IVIG transfusion where they checked vitals every 15 mins over the course of 4 hours to make sure she wasn't having a reaction.  This stretched into the early morning for us, so when 8am rolled around neither one of us was ready to wake up.  But the hope that her ANC was up to 200 forced us both to get ready for the day.  Only to have the nurse confirm that her counts actually dropped from 137 to 105...fuck (sorry mom).  To top that off, her mouth swab came back positive for a viral infection and we're now on "contact isolation" meaning we're on lock down.  No playroom, no walks, just sit and wait.  Of course even sitting and waiting can't go smoothly, nope not today.  Brinley is now suffering from migraines.  After a dose of Oxycontin she was still crying her eyes out in pain, so what the heck lets give her some morphine and see if that helps.  After sitting on her bed, holding her, and rocking her for a good hour, she pokes her little head up and says, "mom, put me down I have to puke".  Sure enough, she wretches enough to cover the floor, grabs her head and starts sobbing.  I'm scrambling now to ring the nurse, reassuring her that it's ok that she threw up on mommy's socks, and rushing her to the toilet before I get caught in the line of fire again. After getting her cleaned up she's given a dose of zofran and now she's passed out, for what I assume will be the rest of the night.

...and now I will quietly sit and wait for 8am

Burning out

Today was yet another milestone.  One I'm kind of takingg in quietly because I'm stuck in my own head lately. In a year from today, Brinley will be OT (off treatment.) The idea of off treatment worries me, it gives me crazy anxiety, and I literally feel sick.  I suppose I should be excited about not having to hit up the hospital every month, I should probably be at ease that treatment is over and we can resume what most would consider a normal life?  However off treatment takes on a whole new role inside my brain.  OT for me means no monthly check ups, and no blood counts to see how her body is responding or, isn't responding.  Again, I enter the world of unknown, and "what if"  it's a place I don't do well in. 

I have to admit, I was doing really good up until today.  Brin's appointment started off well, and when I was worried about her hemoglobin being down, I was surprised that it can actually went up! First time in 5 months since it's been over 9!(below 8 calls for a transfusion) What I wasn't prepared for was that her ANC dropped from 2400 to 516.  Which means in 2 weeks time we'll have to head back to the hospital for another CBC, and fingers crossed it'll go back up.  Hopefully before she catches something from herself..or someone else.  These are the days I spend worried and beating myself up, especially if something goes wrong. "Why did I let her play outside?" "I shouldn't have taken her to the movies" "maybe she caught something from the restaurant we had dinner at."  At the same time she might just float through and be just fine.  But I've been in this situation before, and it ended with 10 days of isolation in the hospital.  To add to the mess, Brinley has been battling a cold on and off for 5 months now, which has spurred her doctor into checking her immunoglobulin count (her IgG to be exact) to see if she even has the ability to fight this off once and for all.

So there is it, I'm totally running out of steam.  I'm so sick of dealing, and coping.  I realize I have no other choice in the matter, but I wish I did.  As my husband always says..."If you don't like it, fix it.  If you can't fix it, find a way to cope". I just feel like my coping abilities are wearing very thin...

2011 won't be missed.

As they say, out with the old and in with the new.  Personally I'd like to punt 2011 out, and slam the door.  You won't be missed 2011, not one bit.  Although it wasn't 100% bad and terrible, we had some amazing moments and made some beautiful memories, but unfortunately most of it was outweighed by the sorrow, anger, and endless sleepless nights. 

In 2011 we hit the most intense part of Brinley's cancer treatment.  This of course, went hand in hand with vomiting, headaches, tummy aches, burning bones, hair loss, hospitalization, fevers, steroid rages, endless eating, and the big bad world of  nadir.  Countless hours spent pacing the hallways of the Children's Hospital, silently telling yourself everything will be ok, blowing through boxes of Kleenex because try as you may, the tears just won't stop. Early morning appointments fighting with a very sick and grumpy Brin, begging her not to eat because, again has to go for a "big sleep" even though she had one last week, and the week before.  Days helping Brinley navigate the house without hurting herself because the nerves in her legs don't respond so quickly, and she's so doped up on her synthetic marijuana to keep her appetite up and prevent her from vomiting.  These are just a few things 2011 had in store for us, and I hate to sound like a broken record so I'll stop with the gore.

2011 also held some amazing moments for us as well.  My lovely friends got together and threw us a fundraiser, to this day I cannot wrap my brain around, and then on top of it, a garage sale.  These girls really saved a lot of my sanity, and I'll never forget, and will always be grateful for their friendship.
We also had a trip of a lifetime to Disneyworld.  I love hearing the kids talk about it to this day.  I love hearing over and over again the best moments they had in Florida.  Feeding the dolphins, princess and pirate makeovers, teacups, space mountain, and oddly enough, putting on their swimsuits and splashing in the Florida down pours.  And of course the move! I'm still not sure if I'd call it "amazing" but instead maybe a bit frightening. It's one thing to uproot your family and move, forget a new home, new location, but we're dealing with a new country, new medical system, new doctors, new new new, different different different.  I do love living here though, I love the weather, and I love seeing old friends and their new families.  I'm still getting use to the medical system and all of the lingo that goes with it.  But given this last year, I've proven to myself that I can handle new words, terminology, and change.  Change is the inevitable, change forces you to move forward and evolve.

So here's to hoping 2012 is boring, and if it has to be anything other than boring, let it be positive.