Thursday, July 5, 2012

all good things to report

The boys were so good yesterday.  They sported their red, white and blue and even allowed us to go to a pool party that was being hosted by some wonderful neighbors in our development.  It was 90+ degrees outside so we couldn't stay too long, but Ty was such a good sport.  Even when his cheeks were cherry red and his face dripping with sweat, he smiled at our jokes. 

Last night our neighbors had a tremendous fireworks display in their yard (which is essentially a large open area).  It was the same show we took Ty and Gavin to last year.  This year Ty was too tired to go and he complained that the fireworks would be "too wowd (loud)" so Lou stayed home with Ty and I headed over there with Gavin.  It was totally awesome.  Gavin loved it and he kept clapping "more fireworks" after every one.  Thank you, John and Ginger, for this vision of Gavin that I will cherish forever.  I'm so glad he still got to enjoy himself in the pool this afternoon, and that he got to see the fireworks.  Sometimes Gavin gets gypped out of a lot of normal kid stuff and it makes me happy to see him enjoying himself like that.

This morning we returned to oxygen therapy.  Ty had a wonderful night's sleep (not even a whimper) and he woke up so happy.  During the hour-long commute, we played "I spy" and Ty was being so funny.  He just cracks himself up. 

Me:  I spy with my little eye, something yellow.  They were growing in the ground on the side of the road.  They're really pretty, they have petals, and I wish I could pick some and put them in a vase at home.
Ty:  Ummmm.  The sun!
Me:  Ty, no, you're not even paying attention.
Ty:  Ummmmm.  A stweet sign?
Me:  No...(I repeat my entire clue).  These come in all different colors.  Not just yellow.  They can be pink, purple, red, white...
Ty:  I know!  CANDY!  <insert absolute hysterical laughter here>
Me:  What!!  Candy?  Nooo.  C'mon, you know the answer.
Ty:  I know!  BALLOONS!  <insert more hysterics>

And so on....  He's such a clown.  This is how Ty remains the happy little boy that he is.  He laughs at his own silly jokes.  He teases everyone.  He keeps on keeping on despite all the sadness that has been forced on him.  He's amazing.  That's why we call him SuperTy :)

Today will be our second to last day at Blythedale.  Next week his at-home therapy begins.  His speech therapist and feeding therapist at Blythedale are both out for the rest of the week, so we already said our goodbyes.  Today we will just stop in for PT and OT, then we can cut out of there nice and early.  I can't wait, I already feel so FREE :)  I usually don't pull into the driveway at home until 4 or 5PM, but today I may be home as early as noon!  I will have the whole day ahead of me to enjoy Ty and Gavin.  This is such a treat, I hope Ty feels well. 

As most of you noticed, I've been feeling blue lately.  Our rigorous schedule was taking a toll on me, and Ty's situation simply gets depressing sometimes.  He has been off his daily chemo for two weeks since the last surgery, and we were supposed to start it up again on Tuesday.  I stalled until Wednesday.  Then, yesterday, Lou and I were like, "well, it's the holiday, let's give him off today, too."  This morning he woke up so wonderful.  He was lifting his hands beautifully and trying to reach across to hit Daddy.  "See, this is why I hate to put him back on the chemo.  He feels so much better and looks so much stronger without it."  His appetite has been decent, too. 

I hesitated this morning.  I held the syringe filled with his chemo and I struggled with the decision.  Should I just go ahead and give it to him?  Is this really even doing anything?  Sometimes I worry that we are just filling him up with poison when the bottom line is... if this evil cancer is planning on coming back - this isn't going to stop it.  But then, what if it did come back on a day that I decided to skip a dose.  The guilt!  The what-if!  What if there is one measly cancer cell floating around in that head of his and this little syringe will catch it before it spreads.  I hate having this in my hands.  For now, we will continue the course.  But, the decision to hold treatment is always one that Lou and I struggle with.  Some day we will have to stop, wait and see because he can't be on this treatment forever.  It will stunt his growth.  It's already ruined his teeth.  He doesn't eat well on treatment and the chemo itself can cause different cancer.  Not.  Fun.  That's why new treatment options on the horizon are our greatest hope.  I am going to repost the details for the 5K at the end of this post.  So many of you have made such generous donations, and I am SO EXCITED to see a bunch of you there, running alongside me.  Thank you for joining the team!

  
Here is the information on how to join Team SuperTy as a runner:
  • Visit http://www.braintumorevents.org/newyorkcity2012
  • On the upper left hand side, there is a gray button that reads Register Here. Click it.
  • Scroll down on the waiver and hit "I agree"
  • On the next page, select "Join a team" then select "SuperTy". Hit "Continue"
  • Fill out the form and create an account with a unique username and password
  • Complete payment for the $25 registration fee (and any kick-off donation you want to make) by including a credit card and submitting for payment
  • You are all set! Now you can edit your page, add photos or videos and start an email campaign to solicit donations. It is all pretty easy to navigate.

If you can't attend the event but still wish to make a donation to our team:
  • Visit http://www.braintumorevents.org/newyorkcity2012
  • On the upper left hand side, there is a red button that reads Donate to Participant. Click it.
  • Enter "Cindy Campbell" in the search fields (or any of our team members, right now I'm the only one registered.
  • Click on my name when it appears (Pawling, NY)
  • When my page comes up, you will see a button on the upper right hand side that reads "Give Now". Click it and follow the prompts from there
  • If you don't wish to donate online, there will be a link to print out a form as well.

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