This has been a long journey, over two and half years. At the start of it I was inexperienced and uneducated about childhood cancer. The years have hardened me but more importantly educated me. I am more knowledgeable now about its many faces, not just from experiencing John’s journey but also from witnessing the journey of others. In addition, I immerse myself in materials written by Leukemia doctors at St. Jude and other prominent doctors around the country. If there is something I don’t understand, I always seek out the answer – there is no excuse for being naïve in this community. But, knowledge isn’t power in this instance. Cancer has the power, I can only use knowledge to guide my reaction to destruction it presents me, I can’t control it and this has left me tortured and broken with little room for HOPE.
The numbers or percentages published regarding childhood cancer statistics, Leukemia in particular, doesn’t sway me; they have never enabled me to fully believe. If it’s not a 100% cure rate (by that I mean long term, event free survival not the measly 5 year survival rate) then that means someone’s child has succumbed to this horrible disease. I have always feared that child could be mine.
Before John’s relapse, as we were nearing the finish line, for a brief time, I allowed myself to find happiness. I was dreaming. I let myself envision his end of treatment celebration, his first day of high school and even trips around the world. I imagined hearing a house full of laughter. It felt good to let HOPE sneak into my heart, but now, having felt it’s sweet embrace, I am left even more broken-hearted. I am struggling to find the purpose in allowing it in again. It proves safer for my heart to reside in the grips of doubt; its disappointment doesn’t hurt as badly. But, I hate feeling the pressure of its grasp and I am longing to make room for HOPE once again.
Fear and HOPE need to coexist - I can’t let go of fear and I have to make room for HOPE to survive this journey. Fear protects me and fuels my passion to fight this awful disease and HOPE liberates me. I think only by continuing to add faith to the mix; I can finally exist with fear and hope intertwined.
Rich is much more silent than I am regarding his feelings surrounding John’s diagnosis and relapse. Yet, he has always outwardly displayed HOPE. He believes that fear doesn’t change our path and HOPE makes it easier to travel on.
Bella is bursting with HOPE. She is always quick to point out the bright side of every hurdle we jump over. She makes me laugh when all I want to do is cry and she reminds me that together we are stronger than we are apart. She is a survivor too and I don’t acknowledge her journey often enough. This fight has given her compassion and bestowed upon her grace. I am so proud of her strength and resolve.
John is filled with HOPE too. I am astonished with his unwavering ability to believe. It has left him hurt before yet, he continues to trust in those fighting for him. He finds peace in HOPE.
His body is showing signs of recovery – he is no longer dependent on blood products and his counts are steadily improving. Our tentative plan is to test for MRD (minimal residual disease) early this week. Please continue to pray that he is MRD NEGATIVE (0.00% cancer)! If he is MRD NEGATIVE we start the road the transplant. If not, we regroup. As I mentioned in an earlier post, entering transplant cancer free exponentially increases the odds of a successful, curative transplant. I’ll keep you posted!
John is continuing to build his Star Wars fleet! It’s incredible to watch him get lost in the moment, forgetting everything around him. It’s just him and his Legos. Thank you all for sending along the Legos on his Wish List! http://amzn.com/w/24WYP211BEIRB
I asked Bella to make a Wish List too :) http://smile.amazon.com/registry/wishlist/NF3I3T9K0O5
We have really appreciated the gift-cards to Whole Foods, Fresh Market or Starbucks! With our busy hospital schedules it helps make mealtime/snack-time easier (and healthier) for our family.
The St. Jude Evening of Hope event website is up and running! I hope you will consider supporting Childhood Cancer research by attending this year’s event and/or supporting it through sponsorship or a personal donation. www.stjude.org/eveningofhope
“No child should die in the dawn of life." ~ Danny Thomas
Thank you all for your love and support. We feel blessed to have you all walking this journey with us.