Full circle

We have been back and forth between home and the hospital since Monday.  On Monday we were here for an MRI and to prepare for radiation.  On Tuesday evening, we rushed off to "Urgent Care" because Ty's face was very swollen and the site where his VP shunt was very red.  Luckily the neuro team said he did not have an infection and we were back home by 1AM.  Exactly 24 hours later, the phone rang and we were told that his blood cultures from Tuesday night grew a "gram positive" which means his mediport may have become infected when they accessed him on Monday.  It never ends.  

We were told we had to come back in the middle of the night last night, and now I am sitting in the same hospital room where we stayed on our very first night at Memorial Sloan Kettering.  It is so surreal to think of all that has happened since that day.  I remember how it felt to watch the nurse hang his very first bag of Chemo.  I was sick with worry and high on hope at the same time.  Lou took this picture at some point during that hospital stay.

Just recently, I was walking in a public place and I heard little footsteps running toward me from behind... and for a split second I thought it was Ty.  I have been replaying that moment in my mind over and over again, trying to recapture and hold onto those few seconds where it was as if none of this had happened.  The moment where I had forgotten Ty can't walk anymore.  I torture myself by looking back at pictures of him and screaming "WHY, WHY, WHY?" over and over in my mind.  Just look at this beautiful picture that was taken a couple of weeks before diagnosis.  I want to jump inside and go back to this place. 

Despite the fairly rough week, Ty is really doing well and he is surprising the doctors left and right with how strong he is.  He has even gained two pounds!  His legs are looking delicious again as he puts some meat back on those bones :)  His new favorites include bacon, blueberries and happy meals.

The attending doctor said he would try and get us home today or tomorrow, because we can administer the IV meds on our own.  If we don't get home by early tomorrow, we will be stuck in the hospital through the weekend due to the holiday, but I don't expect that to happen.  I'm trying to stay positive. 

The radiaton and oncology teams are still debating whether or not we will begin radiation therapy next week (for many complicated reasons that I will explain once I have more clarity).  I will keep you all posted on that.  In the meantime, thanks to all of you who have reached out with ideas for housing in the city, you have been such a help.

I didn't send holiday greetings this year, but I did have some beautiful photos taken recently.  Enjoy!





Happy New Year.  XOXO from the Campbell's

Comments

  1. I have been following your blog since learning about Ty and his fight from my sister in law (Tina Treiber). Every night since then I have been saying prayers for Ty and for you and your family. When people in the past asked me who my hero was, I never had an answer. Now I do and his name is Ty.
    KEEP UP THE FIGHT BIG GUY!

    ReplyDelete
  2. Well, 2010 is a goner.
    Let's thank him, for the good
    and the not so good.
    Because every day is a chance to show our love to one another. Smile at one another, hug one another.
    All of you show me with every day that LOVE IS the BEST medicine!
    Enjoy every second and we hope that with the coming year, good news arise.
    I BELIEVE IN MIRACLES! I BELIEVE IN MIRACLES!
    I BELIEVE IN LOVE!

    Remember:
    "Don't judge each day by the harvest you reap but by the seeds that you plant." Robert Louis Stevenson

    ReplyDelete
  3. I remember meeting you for coffee in the MSKCC lobby during Ty's first chemo treatment -- you surpised me then with your resolute strength and ability to smile so warmly despite everything and you continue to blow me away with your strength and positivity. Happy New Year Cindy, Lou, Ty and Gavin! Love, Juliet

    ReplyDelete
  4. You are truly amazing parents, and an inspiration to all of us. We, as a family,pray for Ty all the time. you remind us that life is precious, and that we need to live in the day, good or bad. And if the boy wants a bagel with no crust, well, then, we should give him a bagel with no crust :) sending plenty of hugs, kisses and love your way. And praying for that miracle that we all want to see happen.

    ReplyDelete
  5. Wow, Ty has such a great smile! These are beautiful photos of two very handsome boys.

    ReplyDelete
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  7. La familia es muy armonioso, es una familia sustituta de Dios, por lo que debemos estar agradecidos.

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