In late May of 2004 Amy and I found ourselves at a large conference table at Banner Desert accompanied by Drs. Panchoosingh and Abella, one of BDMC's social workers (Heidi), our Child Life specialist (Debbie), and I can't remember who else. Like many days since then it had been an emotional rollercoaster. Abby was still inpatient following her first surgery. We had not yet been to Washington D. C. to consult with Dr. Packer. Make-A-Wish was still something foreign to us. And chemotherapy and radiation therapy were still things that happened to "other people." I remember being extremely tired, hyper-alert, but still feeling like I was trapped in a surrealistic world as we heard Dr. Panchoosingh say the words "Atypical Teratoid-Rhabdoid Tumor." Whatever it was, I remember thinking, it didn't sound good. I asked the docs how long a typical ATRT victim survives and Dr. Abella replied "12 to 18 months is a good run."
That was 17 months and 1 week ago. Yesterday we reached a milestone we didn't think we would—Abby celebrated her 7th birthday. It was a day of much rejoicing, indeed a whole weekend of such. We traveled to Tucson late Friday afternoon for a baby shower in honor of little Sienna, new arrival to Rich and Laura (Amy's brother and sister-in-law). Saturday all our Tucson and Sierra Vista-based extended family converged on Amy's parents' place for our fall birthday party (Amber, Cheyenne, Daniel, Elizabeth, Fareez, Josiah, Kristin, Marcus, as well as Abby have birthdays in the fall, plus our new arrivals). Cousin Haley brought her new addition Caleb. Lots of baby-holding went on.
Sunday Abby was treated to a Princess Tea at Once Upon a Time as her birthday present from Aunt Taryn and cousins Amber and Cheyenne. And we topped that day off with what was probably the last swim of the season in Grandpa & Grandma's pool (oh my gosh was the water cold).
Sadly, our weekend wasn't without setbacks. Abby's headaches have returned--she is having them much more frequently and they are now accompanied with nausea and vomiting. We consulted with Dr. P today and decided to increase her Decadron to once a day instead of every other day in hopes of getting them under control. She made it to dance today, for which we are thankful.
We are also thankful for a growing maturity we have seen in her recently. She often relates current events in our family to Scripture that she has memorized (thanks to our church's AWANA program). This warms our hearts more than you can possibly imagine.
Though both Amy and I feel lots of pressure lately from many directions and I especially wrestle with depression much more often, we remain convinced that God does not forget us. He still answers prayers—He has answered us for each headache Abby has had recently by helping her overcome it. So we continue to pray.
And we humbly ask you to continue to pray for us. We are trying to decide if we should go visit my sister in California for Thanksgiving week--a foregone conclusion until this past Saturday when Abby's headaches returned so fiercely.
Thank you for persevering with us.
C. R. and Amy, God has led you through many difficult times, especially during the last year and a half. You are a wonderful example of faith in action. Our prayer is that the Holy Spirit will continue to guide and uplift you in the many hard decisions you are making and will give you confidence and peace. You are a blessing to us. We continue to pray for a miracle. Love, Mom and Dad
by Virginia Wiersma on 10/27/05
Well said, Mom. Ditto from all of us. Amy and C.R., you continue to show great faith and selflessness throughout this journey. You have successfully kept your family unity and routine (which I know is so important to you both), as well as your sanity. I admire your strengths - your ability to process all of this information coming your way, to make sound decisions, and to relay this information in such a way that the rest of us can understand it. We all love you guys very much.
by S Lingo on 10/27/05