Journal Entry

Monday, March 24, 2003

Tonight I write with great sadness and a heavy heart. It's extremely difficult to try to put what has happened into words. Throughout this ordeal, I've kept this journal with the hope that one day our family would sit out on the porch rereading all of the entries just before Christi's graduation. The years would have allowed us to forget the pain and we'd only remember the great goodness of people who have helped us along on this journey. Well, I must admit that now I'm losing hope of there ever being a graduation for our oldest daughter.

The results are back from last week's tests. Unfortunately, Christi does have refractory disease. (This means she no longer is responding to chemotherapy despite the many different high dose concoctions dished out.) The last four rounds of chemo have done nothing - except of course give her miserable, permanent and short term side effects. We were shell shocked and devastated to learn this today. Therefore, as soon as she can make it through surgery and recovery and CHOP has a space open for us, we're headed down to Philly for MiBG (internal radiation) therapy. This is not curative, and definitely not pleasant - but it does have a high chance of prolonging her life. I'm trying not to think of it as palliative care, but as a hope that it will rid her bone marrow of this nasty disease and therefore leave some other treatment options in our arsenal yet to try. Today was the biggest set back so far. I really don't know how much more I can take. I'm devastated, frustrated, angry, sad and shocked.

We received the horrible, gloomy news and then went outside across the street to the playground where Christi played with many other children in the bright, warm sunshine. Trying to let the news sink in, I just couldn't believe that she has a very slim chance of being a survivor. She seemed so happy and clueless playing in the sand and making us sand ice cream. Later we went with Mom and Aunt Marty to the Pottery Shop where the girls painted a platter for me. I wanted to get both of the girls hand prints on the dish before Shayla returns home.

Mom and Aunt Marty again cooked for us as their hotel room has a kitchenette. There's no medicine like Mom's home cooked food. Thanks, you guys! I love you!