A Final Note

Four years ago, today, Erica was diagnosed with Infant ALL Leukemia. Four years ago, today, our lives changed without warning. A few days later I started to blog about Erica’s journey and tonight, I will write the final entry.

Erica is doing beautifully, her last blood tests were taken just last week and the results were perfect. All of the scans and tests continue to show thriving organs and continued growth. The GVHD (graft versus host disease) stays at bay through daily medication and monitoring. She takes about seven medications and a nightly injection of growth hormone and sees her doctors every couple of months. That is status quo and it has been this way for over a year now.

I have reported on so many exciting events and milestones along the way; her birthdays and recitals, our family trips and the birth of her sister, Paige . . . Erica has had a great couple of years. My hope is that we get to continue this journey with great test results and exciting events. It is my prayer that this truly is my last blog entry.

Erica’s follow up care will continue but it was recently decided that her care would be transferred to UCSF. Her particular case, paired with the transplant and GVHD requires a pediatric BMT specialist and without Dr. Taylor, we need to go to UCSF. So, we will take her a few times per year for her follow up and, oh darn, we’ll spend a couple of days in San Francisco!

Erica will grow to learn about and manage her health; it will be a different reality for her than for other girls. As she matures and eventually lives on her own, her lifestyle, eating habits, exposure to sun, and activities will all be impacted by this journey. My prayer is that we teach her the sensibility to treasure her body and to never, never take her health for granted.

Sometimes I wonder if Erica is different because of this experience. If not for this particular journey, would she be as she is today? All I can say is that Erica is extremely happy, very compassionate, acutely aware of all that is going on around her and she seems wise beyond her years. Don’t get me wrong, she is very much a four year old, with temper tantrums and time-outs but all these other things exist too. For her 4th Birthday wish, she told us that she wished “that all the other kids with cancer would get better”. Those were HER words, unprompted. Not your typical 4 year old birthday wish. My prayer is that Erica use her special gifts in this world that so desperately needs wise, compassionate people.

As I considered writing this final blog I imagined writing a sort of reflection on this whole experience but now I feel that it has all been said, in real time. One statement that I wrote, early on, and has rung true over and over again is: “This has been the most painful experience of our life. It is also the most blessed. It is a life altering, priority aligning, uncontrollable journey.” I guess that says it all, sans reflection.

This blog has been a special place for me. It has served as a journal, it has served as a letter to Erica, and it has served as a road map though infant leukemia. I still come back to these entries and cry from time to time. The intention was to have a diary of this journey for Erica. I wanted it to contain the medical detail and the emotional truth. I wanted to keep record of the support and love that was poured out to us and I wanted Erica to know what she was able to do and accomplish in spite of it all. I think my intentions were fulfilled. In the meantime, I have been told that this story, for some, has also played a role in inspiring faith and rekindling hope. It is in my heart that this blog conclude, not that the journey is over but because the purpose has been served.

I am so appreciative to all those that have come to this blog; thank you for sharing your kind words of encouragement and prayer. In our darkest moments, your words gave us comfort and peace.

Erica, you are my sunshine. I am honored to be your mom. We are blessed, everyday, to see your smile, to have you with us . . . Thank you dear God.

Bob, my love, you made this journey work; there are not enough words to express my gratitude.

Merry Christmas!

In Memory of Sammie, Lilly, Stephan, Trevor, Ericka, Nikki and so many other children that earned their Angel Wings far too soon.