Thursday, February 23, 2012


Pete and Mary, my cousin and his wife, will never be the same.  They are bereaved parents and they are broken.  Today would have been their baby Remy's first birthday.  Their situation is one that I can imagine more than most because I have come so close to being in their shoes so many times, and because I live in the constant fear of Ty suffering a relapse.  Bereaved parents suffer every single day of their lives from a throbbing wound that will never heal. 

When I have the rare opportunity to run to the supermarket or the pharmacy without Ty, I feel his absence the entire time.  There is a heavy, fearful awareness that the most important thing in the world to me is simply missing, even though I am perfectly sure that he is safe at home.  (Don't get me wrong, those feelings of absence occur in whispering nanoseconds that are quickly replaced with feelings of sheer freedom :)  ).

If I ever lost my Ty, I don't imagine I would ever stop looking for him in my rear view mirror. Ever.  Life would not "go on".  I would not recover.  I would be forced to live in a new, brutally painful reality.  I don't plan on ever going there, but that decision is out of my hands.   

I wish I could hug Pete and Mary right now, and every parent I know who lost a child.  Over the last 18 months I have gotten to know way too many parents who have gone on to lose their children to cancer.  So, so many.  It has to stop.  Pediatric cancer awareness needs to improve, drastically; and funding needs to improve, drastically.  There is so much tragedy and so many young lives lost due to accidents and illnesses.  It makes me so upset to think how the ugliest illness of all, cancer, hasn't been stopped yet.  WE HAVE TO STOP IT!  Lou and I will never stop asking for your support and we have some future fundraising activities in the works that we hope you can participate in  Even if the only support you can afford is prayers, positive energy and sharing Ty's story to spread awareness - we are eternally grateful beyond words. 

Here is the bereaved parent that I talk to every night.  During my most painful days I have felt her arms wrapped around me as I wept.  I really have.  I am so grateful because without talking to her, I don't know how I would have gotten through some of those days. 

Ty's continued improvement
Over the past few days, Ty has been eating really well.  We have had a lot of "fights" that are resulting in improved habits!  It hasn't been easy, but the tough love is paying off because he is now happily eating strawberries, noodles, buttered toast, chicken, turkey roll-ups, yogurt melts and yogurt smoothies.  He has slowed down on the apple juice, the cheese :( and the fruit snacks.  He is currently obsessed with blue raspberry Sour Patch Kids, but he only gets two of them as a reward every time he eats a substantial amount of real food.  I feel good about this.  He is getting stronger!  Lou is the one who decided it's time to get tough (I'm much more of a softie) and he was right.  The Etoposide doesn't seem to affect his taste as much at the reduced dose he is on, and Ty has proven that he is willing to reintroduce some new, healthier foods.  We are thrilled!

My friend Linda came all the way from Rhode Island for an overnight visit yesterday and she hasn't seen Ty since he was in the hospital in June.  She could NOT believe how well he was doing.  She couldn't stop talking about how strong he is, how well he played with Gavin and how he was able to mobilize around the house by "scooting" or holding my hand.  To see how blown away she was reminded me of just how amazing Ty is and what a long way he has come. 

The reason for her visit was to join me in accompanying one of our great friends (and one of Ty's biggest supporters) to an MRI in the city that evening.  I am not writing to share the medical details or anything... the reason I am sharing is just to reflect on how great it is to get together with friends.  It doesn't matter how much time goes by, I am always so comfortable and relieved to be in the company of people who know me best.  Sitting in a waiting room at the imaging center during our big night out in NYC proved to be absolutely hilarious.  We just talked and made each other laugh and it felt really, really good.  Thanks girls!!  Oh, and I finally got to see for myself what all the hype is about - Pinkberry truly is totally awesome. 

I also had an overnight visit earlier this week from my oldest, bestest friend, Dawn, and her twin baby girls.  I am so happy that we spent so much quality time together.  She is also my first cousin and Pete's sister, so naturally we talked a lot about the loss of her baby niece.  I hope I said the right things... there really are no words other than "I'm sorry."  My friends really come through for me and I am so grateful for all of them.  I hope I was able to return the favor a little bit this week.   

Ty hasn't been sleeping as well as I would like (eek! - the nerves) but I am feeling better about it since my last post because I did not suspect any head pain the past few nights.  He just seems a little uncomfortable at night and that could be anything.  As Lou said after Ty cried out last night, "We only have one more week of stress and anxiety, then we get six whole weeks of bliss before the prescan stress begins again."  To explain: Ty gets an MRI every two months.  This will go on for a year or more, until it gets pushed back to every three months, then every six, then annually.  

Goodnight everyone.  More to share tomorrow.  Thank you, as always, for keeping tabs on Ty and the rest of my family.  Kisses from SuperTy!  Love that face :)


  1. Our family is grieving the loss of a precious 13 year old girl (a classmate of my son's) who died after an epic and courageous battle against aplastic anemia. Shortly after she passed away, someone posted the following story (see separate post) on her CaringBridge site, and it has given us enormous peace by reminding us that even in our suffering, God has a plan for us and is there in the midst of our struggles. I hope that the story provides some comfort to you as you continue to wage your own epic battle to help Ty regain his full health and restores your spirits so you have the strength to continue to support and inspire all those with whom you come in contact with along your journey with Ty.
    The Schopfers
    Sherman, CT

  2. The Brave Little Soul
    By: John Alessi

    Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

    Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

    In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

  3. Omg that was so beautiful! Thanks for sharing