Tuesday, June 28, 2011

Single Digits

For the last 2 months the kids and I have been counting down the big family trip.  On July 6th we will be traveling to Disney world with my parents. As the day draws closer we all get more and more excited for this vacation.  It's been over a year since Blake and I have been to a destination vacation, 2 years sicne we've taken the kids on a vacation to Arizona, and a good 6 years since my parents helped us move here from Arizona...so I'm not sure you can even call that a vacation!

Next week Brinley will go back to the hospital for her second round of chemo in maintenance. She'll have blood work done, and go for vincristine which is usually a 10 mins IV drip.  She also will be on those lovely little steroids once again, but only for a week.  The last time she was on DEX the mood swings hit her pretty hard around the 2nd day, the eating however didn't kick in until the week after, when she was off of the steroids.  So according to my calender, her mood swings should be tapering off the first few days we're in Disney world but then the eating will be full effect while we're there....lots of eating...in happiest place on earth.

I really hope this next dose won't put her out of commission for the week we're there.  She usually bounces back pretty good, I don't want this to be the time she doesn't.

I'm really trying to get back into the swing of things and back to frequent blogging.  For a while I just felt like a broken record, relaying how I was feeling, how treatment was effecting Brinley and everyone around her.  In part I just wanted it all to stop and go away.  I found as maintenance got closer, the more angry I became.  I know it sounds backwards, I should have been happy we're going into maintenance right?  And I was....but I was also on the tail end of hospital visits every week for nearly 7 months.  I started to resent it, I hated walking the same hall ways, seeing the same faces (even though they are the nicest kindest faces ever) I was angry about every part of taking Brinley to the hospital, and not at her, never at her...but angry at our reality.  Quiet days at home had changed to mornings rushing off to the hospital, IVAD pokes, chemo, lumbar punctures, and waiting.  Waiting to get to this place that is maintenance.  Waiting for peace, a sigh of relief, and the energy to refocus our life a little bit.  But we're here, and as much as I'd like to say "it was all worth it" I don't know if I feel that way right now, or if I ever will....guess time will tell.

I stole this from my friend Lisa, I hope she doesn't mind, but it's very fitting.

Susan Sontag in her work Illness as Metaphor said this:

Illness is the night-side of life, a more onerous citizenship.  Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.  Although we all prefer to use only the good passport, sooner or later each of us is obliged, at lease for a spell, to identify ourselves as citizens of that other place.

Tuesday, June 14, 2011

Stuck in the moment

Well, wow this is long over due.  I can't lie, I'm caught up in the world of maintenance right now and thoroughly enjoying every week that passes that we don't have to drive into the hospital.

The first week of maintenance is behind us and we're on to the second and things have been going well.  During the first week we had a bit of a battle with nausea and Brin had a hard time keeping food down.  We tried different forms of zofran, and have finally found that having her swallow a zofran melt away works best for Brin.  Last Thursday she had her methodrexate dose, which sent me running to the computer to look up side effects, as the days following were a bit rough.  Brin woke up Friday with a major headache and a pair of very very sore legs.  When she did walk around the house she would be on her very tippy toes again, trying to release some of the pain in her legs.  I gave her morphine and it helped a little bit, but she was still in a lot of pain.  She ended up sleeping most of the day away.  The days following she really picked up and bounced back pretty quick.  I haven't been letting her play soccer at all, mainly afraid of her "over -doing"  and getting sick.  Something I want to avoid since Disney world is 21 days away!

During this down time I've also had a few moments to sit, be still and really take in the last 7 months.  I've felt things that I've never imagined myself capable of feeling.  I've put my head in my hands and sobbed uncontrollably, I've had to pry myself away from my daughter, while her eyes close in a number of surgeries she's had.  I've had moments of overwhelming joy and sorrow.  I've celebrated milestones along the way, and I've cursed at the set backs.  I've felt completely helpless and lost, and I've had moments of strength and power.  The last 7 months have been a roller coaster, and the ride still isn't over, but each day I find more room to breathe.

So cheers to hair loss, hair growth, fewer hospital visits, and having the energy to run and play.  Hats off to those who have encouraged, supported, and helped along the way, even if you were an ear to listen to me rant, thank you, you've made cancer easier to deal with. 

Thursday, June 2, 2011


7 months and 2 weeks.  She's done it, she's in maintenance. Today I put my brave mommy face on, I smiled through the tears of joy and squeezed my baby tight, she has hit another milestone in this long journey.  I cannot believe that we're here, looking back I always knew we'd make it, but the reality is setting in and it's overwhelming.

I am so grateful for the people in my life, for the friends and family who have given us unconditional love and support from day one.  I am amazed by this little 4 year old girl, who has taught me more about life in 7 months, than I have learned in my full 28 years of life.  Brinley handles her reality with such ease and finesse that I'm often left speechless. 

Things I have learned:

1.  There is never enough pepperoni, spaghetti, hot dogs, or milk in our house when dealing with a 4 year old on steroids.

2. No milestone is too small

3. Cancer does not define Brinley

4. My daughter has to ingest medication that I have to wear gloves to handle

5. My son is a very compassionate protective human

6. lemonade from lemon's/silver linings do exist

7. Sometimes all you can do is laugh

8. I can learn, adapt and cope at the blink of an eye in means to keep positive.

9. My husband is a phenomenal man and father. He keeps me sane.

10. Cancer gives you perspective

I would love to be sitting here saying that Brinley's journey is over.  But it's far from over.  We have 2 years of maintenance left before she is off treatment.  However reaching maintenance is a huge success.  The brunt of the treatment is over, the lumbar punctures are now 3 months apart, and she will only get doses of vinecristine once a month.  There is oral chemo to be taken at home, as well as methotrexate, but we're down to the nice spaced out monthly visits. 

It couldn't have come at a more perfect time, summer is around the corner, Disneyworld is a bit over a month away, and I feel like I've had a piano lifted off my chest.  Time to regroup, refocus, and heal.