Phenon Updates archive

Date : May 2012 (1)

Constant Vigilance!

by Julie
Published on: May 12, 2012
Comments: 1 Comment

After talking to Em for a while about all of the things Phenon’s docs have been telling us to be on the alert for, she said this image came to mind.  It seems a perfect encapsulation of where we’re at!

For those who are not Harry Potter fans (is there such a person?), Mad-Eye Moody is a character who was constantly on the alert, looking for evidence of the return of evil.

Phenon is now totally done with her treatments.  The last CT scan is finished, and they like the looks of it.  It is unchanged from the end of chemo, but that’s what they expected.  Radiation often doesn’t shrink the remaining mass, just kills it.  So, she has a remaining mass that is between 3 and 4 inches in diameter in her lung.  It will likely shrink as the dead cells are sloughed away and the supporting structure of blood vessels, etc. figures out it’s not needed. She has also gotten 90% of the way through her follow-up scans and measures.  The only two things left are happening soon – pulmonary function test to check on what damage, if any, has been done to her lungs by the chemo and radiation, and surgery to remove her port.  Surgery is scheduled for this Monday, May 14th, so she’s almost done!  Remember when Nurse Chris said that getting his port out was the day he knew the ordeal was all over?  Well, she’s almost there.  Hooray!

At the same time, every doctor we go to is giving us a list of things to check for every single day, since she won’t be going to the hospital or being seen by the specialists for 3 months.  It’s very reassuring.  We only need to rush her to the hospital if she seems irritable, tired, or resistant to exercise.  WTF?!?  So, if she acts like a teenager, we have to rush her to the hospital?  Gulp.  Thank goodness for Shana, who started laughing hysterically as Tim read her the list the other doctors had given us to be vigilant for (they actually used the word vigilance!!).  She said we can relax a little, and just make note of any changes.  That we don’t have to follow her around evaluating her every step (which would make her irritable for sure!).  We do, however, have to regularly look for more unusual things on the vigilance list, like swelling of her ankles, a blue tinge in her fingernails or toenails, swelling in her neck, any cough at all, etc.  All of those could indicate the return of the tumor or impending heart failure.  So, you know, relax!

To be sane in this transition to what is the new normal, I’ve decided to run a half marathon. (I know that may not sound sane.  But it’s better than me following the kid all over the house checking the responsiveness of her toenails!)  I’ve got to transfer this vigilance to something that won’t make my kid irritable (which would then, obviously, make me rush her to the hospital!).  I decided I needed a new way to kick cancer in the teeth and to try to kick its butt permanently.  So, I’m doing this combination fundraising/training thing through the Leukemia & Lymphoma Society’s Team in Training.  If you are able to donate even $5 ($10 this morning would round me up to a nice even number, and I’d love that!!), it would be awesome.  Must fund those fighting against the rise of evil!  Click here to get to my half marathon page!  I need to raise $1800 to be able to compete in the race on October 13 (almost the one-year anniversary of Phenon’s diagnosis).

In the meantime, much else has happened.  My parents took us to Disney World and we got to go to Harry Potter world at Universal Studios.  (Thank you, again, SO much, Mom and Dad!)

That's Hogwarts behind us!

Thanks (so, so much thanks!!) to Tim’s friend Kathleen, we were able to get a behind the scenes meet-and-greet with some of the animal actors at Universal.  Here’s a clip from that experience, where Ruby and Phenon got to do a little cuddling.  Priceless!!!

Back home, Phenon’s musical (the Musical Adventures of Oliver Twist) opened on Thursday night.  Tonight is her last performance, and she’s amazing, if we do say so ourselves.  And, her Musical Theater Conservatory ended for the season.  This was Phenon and Zach’s duet on the last night of class.

And that, I believe, is all of the most important stuff.  Summer, it seems, is about to begin.

P.S.  I got over the $1500 mark before I left the kick-off event for the LLS training season!  Thank you, thank you, thank you!  But, while I was there, I heard memorials for several amazing people who died over the past year from a blood cancer.  If you haven’t already contributed, if you could donate anything at all to keep these hideous diseases from agonzing other families, I would be so incredibly grateful.  Thanks!  Click here.

 

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