Monday, August 12, 2013

Meeting the COO/Calling 911

I realized that I've been posting a lot of updates on Facebook but not posting on the blog as much.  It's still really important for me to let you all know what's going on so I'm doing my best to schedule time for updates!  We have been so incredibly busy and trying to find our "balance".  I think we are tipping the scale the other way and making up for lost time.  We do have our rest days but we are having a great time "living it up".  The family time has been precious and I've been working hard to keep my phone tucked away.  I know I got in the habit of keeping my phone in immediate access just in case I got the fever/ED visit call.  It's definitely been a conscious effort to put it away for periods of time especially when the girls aren't with me.  But I'm still keeping it close by when they are at school or at a friends house.  I'm hoping this is just a mom thing and not a cancer mom thing.

G will be starting kindergarden school...16 days in fact (I'm so not ready for this) and we want to suck up every ounce of time before this happens.  Her hair is growing back beautifully and she has these wonderful blond tips.  Lately we've been getting so many compliments about how cute her "hair cut" is and I've been asked if I frost the tips.  Really?  It's actually amusing and if I'm in the mood, I let them know. The tips are actually blonde because of the affects of the chemotherapy.  It's slightly fried on the ends and I can only imagine what it did to her little body.  The healthy hair is growing in strong which is an indicator that she is healing and getting healthy.  Sometimes, I've been to tired to strike up another conversation of childhood cancer (I have plenty of these) but let Gabriella know that she can talk about it if she chooses.  At some point, I'm sure she will get tired of hearing about cancer and I've made sure to tell her it's ok to let me know.

I just can't believe that G will be starting school.  Did I mention that I'm not ready for this just yet?  I'm really not counting down either ;-).   Thinking back of all the time we spent in the hospital and not at school makes me feel like cancer robbed us of this innocent time.  But looking at the positives, we all got to bond and grow in incredible strength as a family and for that I am grateful.  I just wish it wasn't cancer that made us stronger.

As for Bridget, she is such a fun and amazing little person.  I'm just in awe of her extraordinary giving capabilities and her kindness.  Trust me, she definitely has her moments and she won't go unnoticed in this family.  When she wants to be heard, she WILL be heard.  When she's tired, she gets frustrated very easily especially when I can't understand what she's saying.  Mostly side effects of the "me" pacifier and years of talking with this thing in her mouth...but we are working on this.  Bridget just started gymnastics and is pretty excited about it.  When she walks in to her class, she is ready to go.  Not really worried or shy about it.  She just enjoys it.  It's quite a difference from my little shy Gabriella but that has changed dramatically since her journey.  Both girls are in swimming and doing amazing.  Bridgy has had a couple of moments when the teacher was turned the other way and she decided to brave the waters on her own.  I'm hoping to instill a healthy respect for the water.

Gabriella is also taking a Spanish class with her friend Campbell.  She wasn't totally sure about it at first but is so excited to be able to hang out with her buddy.  Both of them light up when they see each other.  It's really sweet.  And they are learning a good amount of Spanish! 

COO Meeting

So a couple of weeks ago we got the pleasure of meeting with the COO of Lucile Packard Anne McCune.  What an outstanding lady.  She had a lot of wonderful information to share with us about her extensive involvement as a facilitator of many programs to better the relationship between patient and hospital.  She willingly and compassionately listened to the trials of our journey through Packard.  It was a great meeting and ended with a vow to continue the support of patients and their families.
We also gave her a Team G Foundation brochure.  She ended up buying 12 "Hope Totes" for us to distribute in our general donation.

Calling 911

The other night shortly after our Team G board meeting, I got a panicked call from Adam telling me that G couldn't breathe.  G had a small cold which Bridget got as well but it didn't seem like anything to worry about.  Apparently she woke up from a dead sleep and was struggling to pass air through her lungs.  When Adam called me,  I could hear weird sounds and G going from a short cry to a gasp for air.  Never have I gotten from Aptos to Scotts Valley so quickly.  5 minutes later, Adam called again asking where I was.  For a moment I thought, what am I going to do when I got there.  I didn't have a magic medicine to make her instantly better.  So I said to Adam, "Call 911 and I'll be there in less than 5".  He said, "Oh yeah, good idea.  I'll call now".  It just goes to show that even after being a medic and working in the field, all bets are off when it comes to your own child.  You never feel so helpless in your life and out of control when your kid is hurting.  I got home before the fire department but they arrived shortly after.  Our friend Dennis along with the SVFD crew came in and started her on a breathing treatment.  She settled down and her airway opened up.  The neighbors even called and stopped by because they saw the fire engine with all the lights on in front of our house.  Always a sight for inquisition.  Ends up our neighbor Toby could hear G wheezing from their bedroom...and our houses aren't that close.  We made sure to keep an eye on her for a few hours as she slept.  She still sounded pretty coarse but her airway was open.  For a moment we were debating on taking her into the ED but after the couple of treatments from the fire department, we felt comfortable watching her and calling if G needed it.  Geez, as if we haven't had enough excitement and panic in our lives.  

The cold lingered on for about another week but it's on the very tale end...and she still has a ton of energy.  

Even though our treatments are over, this journey is far from over.   We're living out each amazing moment as they come and doing our best to plan for an incredible future.  

On we go!

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