We are humbled that you all continue to ask. The only thing we need help with right now is – finding a cure for cancer! That’s a big ask, I know, but you can be a part of finding cures and saving children – for kids like sweet John. This can only be done through research and research takes funding, a lot of funding. As I’ve mentioned in the past, less than 5% of the federal government’s total funding for cancer research is dedicated to childhood cancers each year. Pathetic! So, a great deal of the financial support required for new trials and protocols comes from fundraising through events like our annual St. Jude Evening of Hope.
This is how you can help! Every Wednesday I’m going to write a blog post/update (reflecting on my hopes, dreams and regrets) – it will include an “ask”, something specific to help make this year’s St. Jude event the most successful yet. My WISHLIST WEDNESDAY posts will hopefully inspire you to be an active participant in helping to fund better/less toxic treatment options and cures for childhood cancer.
I don’t want this series of posts to be the something you read every Wednesday then go on to yoga and carpool (harsh I know), I want these posts to provoke action, action needed to literally help save a child’s life! Step into my shoes, feel my heartache, cry for my child then help me end childhood cancer.
This week my WEDNESDAY WISH is for you to please go to the St. Jude Evening of Hope website www.stjude.org/eveningofhope, peruse the evening’s details (Food Networks Chefs!!!!, Live and Silent Auctions, Music and lots of fun, fun and fun) and purchase tickets to our awesome event and/or make a donation of any amount (located under – be a sponsor)!
Let’s start the season of gratitude and giving off right by providing hope to families like mine! Sometimes the HOPE of better treatment options and a cure is all we have but when we have it, we have everything! This belief is a powerful one and I witness it everyday here at St. Jude.
Update on John:
John’s MRD is remarkably stable considering he relapsed 22 weeks ago (and is not on therapy). Last Monday’s result was 0.065%. This is almost unheard of in the Acute Leukemia world, especially with such an aggressive subset as T-Cell ALL. There are two theories with regards to John’s persistent, low level MRD 1) His MRD is comprised of cells that are only driver cells (pre-leukemia), requiring a second insult to the cell needed to proliferate – the graft (his new immune system) is holding off the second insult. 2) His cells are in fact proliferating and my donor cells are continuing to see them as “other” and are fighting them with some serious mama bear fury. Unfortunately, there is no way to know. So, we are holding firm and not treating his Leukemia with further toxic chemotherapy, which would result in considerable suffering. As for cellular therapy, we are still looking for options that have little to no risk of reigniting his Guillian Barre Syndrome but have yet to find a treatment where the benefit outweighs the risk. Dr. Pui is literally searching around the world for options. We have consultant doctors in Singapore, Germany, England, France, and across the United States. We, especially John, continue to make quality of life the number one priority!
We are in the process of conducting John’s 1-year post-transplant workup. I can hardly believe on November 21st it will be one year. This has been the worst year of our lives. Going through the series of tests & scans, looking/hearing about all the damage to John’s organs and systems brings me to my knees. There aren’t enough tears to shed for my heartache. His body has been beaten and unfairly broken by years of treatment, his transplant & GBS. It’s not okay that these are our only options to save our children – it’s brutal and barbaric.
His GBS recovery is slow. It’s a long process and with immobility comes many complications: bone loss including 5 spinal fractures, contractures - shortening and hardening of his muscles & tendons and PAIN. GBS is a horrible disease and it is so cruel that John has to endure this on top everything else.
Physical Therapy is one of John’s least favorite things to do. It’s painful, even with a 24/7 pain-pump. He’s made so many advances since we’ve been back at The Jude but we still have a ways to go. He can sit up independently but is still unable to stand/walk. We continue to believe that John WILL walk again – he WILL.
Please continue to pray for our little family as we hold on to the HOPE that one day there will be a day where no child will suffer from cancer.