Wednesday, April 9, 2014

An Unexpected Triathalon

On October 23rd 2013 I signed up for  and began a Triathalon. I hadn't even trained for it or prepared for it mentally in any way. I didn't know it was a Triathalon at the time it started either. This race has changed it's course several times now. The terrain and elements fight back. I take it one step and a time.  It's the Unexpected Retinoblastoma Triathalon. 

In October, Mike and I started the "Swim" portion of the event. We received Ania's diagnosis of cancer and just dove right in to the trepid water. No wet suit. no goggles. No lifeguard to save us from drowning- other than faith. Our friends and family have become our spectators and cheerleaders. We dove right in to this scary water and immersed ourselves in the knowledge of becoming parents of a child with cancer. The biggest fear of any parent's life. Sink or swim. We swam through the diagnosis and got ourselves to a plan of action. We started Intra arterial chemotherapy in hopes of saving her life, her eye and her vision. We eventually caught our stride and felt comfortable in the water- felt like it was going to be ok and that she would be perfectly fine. After 4 months if "swimming" the water got choppy again. It was time to get out and start a new leg of the event. She was no longer responding to the intra arterial chemotherapy. She was totally blind in that eye. Our course outlook was dramatically changing.

We started the "cycle" portion in late February 2014. So many ups and downs.  Our journey was destined to Philadelphia to meet with a new specialist that maybe could give us new answers or new hope that Ania could finally be cancer free. Our minds and bodies were weary, tired and again fearful of the unknown. What steep mountain climbs were ahead? Whatever it took for us to get to the top and save our daughter, we would overcome and make the right choice to save her. That choice was to remove her beautiful eye. Cut out the cancer to save her. We would surely win this "event" by cutting it out of her life right? Not so fast..... There are warning signs of spread beyond her eye....

The 3rd leg has begun. The marathon run. We are running the longest distance and right now our lungs are burning and our legs feel heavy. We are building up our stamina and conditioning for the long haul. The next 6 months of systemic chemotherapy are going to be the hardest part of this  "race". It will be so hard to watch as our daughter shows any signs of sickness. As she loses her appetite and loses her hair... It will devistate us at times. Sometimes I will be the weak one and will rely on Mike to carry me on his back. Sometimes I will carry him. Sometimes only the cheers of our "spectators" & prayers will be enough to keep us going-encouraging us onward. The entire time, our warrior daughter will be enduring more agony and pain than either of us. She however, will still keep her beautiful outlook in life through it all. She is the toughest champion of all. She will continue to to motivate and inspire us and others even long after this Triathalon is over. 

Ania, our Dainty Warrior, will be the champion.... In time. 

Now, time to keep running. There is still a long road ahead. Keep the faith going. Keep the strength going. Keep the support going. Onward. 

God Bless,



  1. Erica I read this and think of the passion that is in your heart for your dainty little warrior and then moments I feel like I've gone back in time and I'm reading my sons words are my words. My heart breaks at the thought that they are not my words are my son, they are your words, your heart, your husband's heart, your moms....oh all are in my prayers and my heart consistently. It is so strange.....the timing in all of this...with our Josiah's passing and the changes for your precious Ania...I can only come to think find peace knowing that the connection was made by God, between Josiah and Ania, as their lives intensely changed....that Josiah could now be your Ania's Angel to be with her and watch over her....I thank you for all your prayers, blessings and support from both you and your Mom...even in my own grief and knowing, all I can offer is love and prayers...the greatest of all is prayers for healing and peace. God bless you and your precious family,
    Jean and family

  2. my apologies for the typos in that last post. It was being done on my phone and obviously, done poorly. It was a voice to text post which I don't know why I use it because it does this all the time. When I get on a computer I will see if I can edit it so that it is presentable and worthy of being your blog. In my heart thoughts and prayers, Jean