Tuesday, January 14, 2014

Time to write

I wrote this a few weeks ago...
I've been feeling very compelled to write an update the blog the last few months but as always, time has escaped me.  Keeping up on the blog always kept me up late into the night.  This is when the house is quiet and I can do my best thinking.  Of course the night time hours are when I get my best work done but there are so many other things that have needed my attention.  The emotions and words to describe our story aren't coming to me as easily.   I'm sure it was due to feeling much more vulnerable during G's treatment and I was just able to let it out.   Excepting them was what I needed to get us through.  But sharing these things now just puts me back into that vulnerable position...and I'm not liking the vulnerable feeling.

I often read blogs of other mom's and the journey they are on with their own child.  I know where it comes from...the ability to just write freely about your situation, your feelings and your child.  You don't have your child's health anymore, the one important fact that everyone asks you when you are pregnant..."what do you want?"  I just wanted a healthy baby.  So, what have you got to loose by writing?  I got bored of saying the same thing over and over again and hearing myself say it.  Childhood cancer sucks.  Let me rephrase that...childhood cancer SUCKS.  But it needs to be heard over and over again.  Until we can better this world for children fighting cancer, it needs to be heard.  Some of these stories and blogs are so incredibly painful to read. It just never seems to end for some kids and the battle they fight every day just has to continue.  It's incredibly heartbreaking to read especially for the kids who aren't given a chance.  Can you imagine?  The day your child is diagnosed is the day that you learn you will have to bury your child...your own child.  Sometimes I just can't stand it.  It's not fair.  And every day I look at my girls, my two precious girls...my survivor and my sibling survivor, I am so thankful for our story.  This is then where some of the mommy guilt kicks in.  Am I not playing with my kids enough?  Do they need more from me and am I too busy trying to save all the other children while on my laptop?  I don't know.  There are constant questions and always a better answer to them.  I just know that I'm doing the best I can.  But I will always try and do better.  

There are constant reminders of the emotional and traumatic year we went through.  During the year we put our head to the grindstone and did whatever we could to get our family through it.  I can only imagine it's like being a bull in a China shop. But the adrenaline is starting to wear off and I finally started to let my guard down just a little every day (except for scan days).  It's a good thing and it's a hard thing and something that's very hard to describe.  We didn't give ourselves much of a chance to be emotional and think about what we were actually putting our daughter through... and those things are trying to come up.  The thoughts are very real and very painful.  They don't come all at once because I feel if they did I wouldn't want to get out of bed.  They mostly come through when we look at past pictures of Gabriella during treatment.  They come when I look at the scars on her body, the little tips of her hair fried and bleached from chemo, or when she has an "owie" that can throw us into a panic questioning if the cancer could possibly return.  It also comes up when I'm at work, for obvious reasons.  Whenever I hear that my patients have cancer....or anything really... it just reminds me.  Of course, there are so many similarities.  I do my best to realize where its coming from but sometimes I'm not able to separate it.  The other day, I had to draw blood from a power port.  I had so much anxiety about it...and it wasn't even the actual procedure that was making me spin but the flashbacks that I've associated with this procedure. Twice a week, sometimes more, G would get her port accessed for blood work, chemo or anesthesia. I watched every single move her nurses would make and make sure they were doing it correctly....it had to be the right amount of time for scrubbing her port so she wouldn't get an infection, the right dose of medication and the right chemo...all the way to the right flush with no air bubbles. I'd watch the end of that port like a hawk and make sure it didn't touch anything. If it did, they would need to scrub it for 10-15 more seconds.  All while I was trying to get through the simple task of drawing this patients blood brought me back to those draining days in the hospital.  

I've decided that worrying never did anyone any good and NEVER changed the outcome. So, I've decided to do the best I can to plan for the actual day...the logistics...and let the rest just be.  But I can't help but worry.  

I know she's going to be fine. She is just the picture of beauty and strength. 

This past week, the hospital has kept us busy with the usual...Adam spent hours on the phone making call after call talking with the manager of radiology, the anesthesia department, and our new sarcoma doctor from St. Jude's (since Dr. Marina is having family health to deal with and Dr. Aftandillian is on maternity leave) to make sure things were going to happen when they needed to and how they needed to and jumping to management to ask for the appropriate changes.  It's actually been better, thanks to Adam.  He is so dedicated to straightening these major stressors and inconveniences out so hopefully all families can benefit from a better system.  The "schedulers" basically hand over the phone to their superiors when Adam calls and once again, the answer, "that can't be done" has changed into something that could be worked out.  

The issue this time is to keep Gabriella from needing general anesthesia and coaching her to hold completely still in an MRI machine for about 30 minutes.  She has amazed us this whole time and we have no doubt that she will be able to do it.  BUT, just in case, our doctor planned for anesthesia to standby just in case she couldn't.  We would put her under right away and get the scans done.  This sounded like to ultimate plan, right?  Well, not according to these schedulers...whoever they are.  Anesthesia doesn't "standby" on any cases.  They either do the anesthesia or they don't and this is what we were told along with a cold "sorry" to follow.  If she can't do it without, we will have to come back in 10 days (just because that is the next available day) to have her scanned under anesthesia.  My G is so compliant and I know she will be awesome.  Fingers crossed.

Back to the blog.....

All the thinking and processing made me come to a realization that writing in this blog has been amazingly powerful through this whole experience.  I miss it when I'm not writing but appreciate the fact that life is "more normal".  I know we're "out of the storm" so to say, but this journey is a lifetime.  It doesn't come to an end.   I sometimes wonder who is still out there and I'm so grateful for the messages every so often letting me know that you are still engaged...still following our journey.  I am so thankful for all of the support that surrounds us especially in the stressful moments.  Trust me, I appreciate it all of the time but I'll take it whenever someone remembers the struggles and takes time to acknowledge those.  I just hope I can do the same for others and hope that our words can help someone else in a difficult time.  There is so much more I want to say.  But for now, I must sleep and get read for the day's events.

More to come....

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