Sunday, June 24, 2012

Farewell for now...

Long Beach, June 23, 2012

We spent the last two weeks in an old, very dated but adorable little beach bungalow.  It had none of the luxuries the boys enjoy at home, like a pile of toys, a DVD player or cable TV, yet they had more fun over the past two weeks than they’ve had in a long time.  It feels like we spent months in Long Beach instead of two weeks.  We visited our old church several times, we spent time with people we love and miss so much, and we all had a lot of time at the ocean.  The beach is the most freeing place in the world.  God is everywhere you look and in the air you breathe.  It feels wonderful there.  I was sad to leave this morning on such a beautiful day.

When we were driving away, Ty told me that he really loves our new home.  I told him I was so glad, but that we were leaving and going back to our real home now.  Our big house upstate with all of his toys and his super hero room.  He thought about that for a minute and then he said “I still like this house, bedda.”  I was so happy, because that just proves that he really enjoyed himself on this much needed vacation.  Of course he will feel so good to be home, too.  It was the perfect amount of time to be away but I am ready to be home and resume with oxygen treatments and therapy because I was getting anxious about losing time (Ty probably feels otherwise about that part of being home).

We visited with Ty’s best friend Eva the other night.  She was so sweet, at one point she brought him over a cake she “baked” in her play kitchen, complete with candles.  There were three candles so Lou, Ty and I each had a wish.  We blew out the candle and joked about how we need to keep our wishes secret if we want them to come true.  When it was Ty’s turn, his face turned very serious and almost sad.   Lou and I looked at one another with concern.   How sad we would be if he wished for no more cancer, or if he wished to walk again.  He shouldn’t have to make such a serious and scary wish when playing around – or on his real birthday for that matter.  Keep him confident, keep him optimistic, keep him innocent to the horrors of what his cancer did to him.  Let Lou and I make those wishes.  After a little suspense, he flashed us his famous cheeky grin and yelled “I wished for candy!”  Phew. 

Reflecting on one year ago:
Exactly one year ago, Ty had two large tumors removed from his Cerrabellum via his second craniotomy.  He was in the PICU for a long time.  We were told he had recurrent brain cancer and that the likelihood of him surviving long-term is pretty much zero.  His neurosurgeon's exact words when we chose to move forward with surgery regardless were, “I want to give him a good summer.”  Here we are at the beginning of our second summer and although things aren't as we hoped, we are still living every day happy because we have Ty with us.  He keeps us smiling and grounded.  He is so special. 

When I went running to St. Catherine’s church one year ago, the priest who comforted me advised me that all I can do for Ty is continue being his mother, to walk him to the gates of heaven and to let him go.  One year later we are all still fighting and we are never gonna stop.  Lou and I celebrated his one year anniversary of the post-surgical MRI because it marks 365 without evidence of disease.  Here's the photo of Ty that I posted the day after his third major surgery/tumor resection.  He had been extubated just minutes earlier.  He's nothing short of miraculous.  SuperTy indeed.

Ty Campbell - June 22, 2011

Reflecting on two years ago
I looked up my photos from mid-June 2010 and can't believe how different our lives were.  Here is Ty in the backyard of our old house in Long Beach.  He's doing 3-D sidewalk chalk that I'm sure annoyed Lou a little when he got home from work.  It was always such a mess.  I used to try and wash down the concrete soon after.  Today I would pay anything for a slab of that sidewalk with Ty's chalk drawings to display in my home as if it were a world-renowned, priceless work of art. 


More muddy puddles await
We realize that Ty's physical progression has been slowing down.  I don't have much new to report. But that doesn't mean we’ll ever give up on his full physical recovery. We have so much confidence that we will see him doing this again, as a big boy.

Ty Campbell - July 4, 2009
Goodnight everyone. Thank you so much for your endless love and prayers. 

P.S. to Jenny:  I am so happy I saw you and that you got to see Ty.  It meant more than you know, I only wish we had more time to catch up.  You are a person that carries pure good and kindness on your shoulders.  You and your brother are in my prayers. 

3 comments:

  1. As always and along with so many others, Ty and your family are in my prayers. I have been following your story for quite some time now. I am a single mother of 3 children and I cannot imagine what you must be going through. It makes my struggles seem silly and inconsequential. God has blessed you and your family through all of this and will continue to do so. Keep believing. We all do.
    God bless you and Super Ty!

    Diane

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  2. Cindy, all of your photos are breath taking! thankyou so much for sharing! Like most following your blog I check in several times a day. What a special person you are to share your journey with so many. (I can not imagine the strength it takes to write)You, Ty, Gavin and Lou are very special to a million strangers. Thank you for sharing your love.

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  3. Hi Cindy,

    I was reading an article that made me think of poor Ty and his problems with his shunt. Just an FYI:

    http://the-scientist.com/2012/06/26/ipad-affects-shunt-settings/

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