This is my cancer journey. A no holds barred, raw and raucous portrait of my search for enlightenment while I journal my way through cancer treatment. If you want an honest depiction of the ugly truths along with the lighter side of cancer treatment, then I welcome you to join me on my journey!
August 30, 2013
The End of the Battle, A Clean Bill of Health & 17 Years Cancer Free: Part 2 by guest blogger, Amy
I’ll try not to make everyone cry with this entry. This is a success story and I’m happy to share it with you. Linda asked me to write my blog entry in two parts, so here is part 2. :)
While writing part 1, I told myself I wasn’t going to pull out Zach’s binder, but tonight I did. 17 years ago when Zach was diagnosed, they didn’t have EMR’s (Electronic Medical Records). We were handed a three ring binder, and you filled it up over the course of treatment. The first thing I looked at were his protocol sheets. They listed out each day of each chemo cycle and listed what drug was given on each day. The header of the page read “CCG-1882 Poor Prognosis A.L.L.” “Poor Prognosis” were two words I had crossed out on every page. That was just too hard to look at every day. This binder is where I kept all the info on the meds he was given, every single blood count record, and meticulous notes along the way. I’m sure I missed a few things, but tonight I counted 81 entries on blood counts alone! Zach’s last treatment day was November 16, 1999.
We were SO looking forward to a fresh start with the new millennium!
It’s the weirdest feeling when your child completes treatment. During treatment your child and your family have the continuous support of the care team. You rely on the drugs to beat the cancer. Then as quickly as it started, it’s done. The care team essentially says, “Bye, have a nice life!”, and off you go. You’ve developed a “new normal” with the treatment process that you have grown accustomed to. Now you have to create another “new normal.”
It’s a whirlwind of emotions. You’re so incredibly thankful to be where you are, yet you’re scared. Previously the drugs kept the cancer away, now his little body has to do all the work. Will it work? I’ve recently learned that studies are showing that often times parents of childhood cancer patients experience PTSD (Post Traumatic Stress Disorder). Oh yeah. It took several years to get to the point where every cough or sniffle from one of the kids was not a cancer concern in our eyes. I KNOW I was overprotective. Find me a cancer mom who had the rug pulled out from under her with her child’s cancer diagnosis who ISN’T overprotective. Don’t mess with Mama Bear… :)
I remember wishing there was someone I could talk to who had walked this same path. There were some family volunteers at the hospital, and they were great, but if their child didn’t have the same type of cancer as yours, it was difficult to relate. I recently met two women who have started their own nonprofit organization intended to provide that “mom support” that’s needed throughout the whole crazy cancer process. They named the organization Momcology -- so cool, right? Check it out, you can follow them on Facebook, or check out their website, www.momcology.org. You can join/follow and choose to join based on geography and/or diagnosis. Boy, do I wish this was in place when we were there. For those of you reading this who may know someone who is a pediatric cancer parent, please tell them to check this out.
Zach, my rock star, completed treatment and went on with his business like any other 8 almost 9 year old. Except, he was falling behind in school. Reading was difficult. His processing speed was much slower than it used to be. Math was a challenge. Social cues were missed.
Latent effects -- now we had to learn about this. You see, when Zach was diagnosed, medical teams were thrilled to tell you the long term survival rate for ALL (acute lymphoblastic leukemia) was 80%. They didn’t know, the latent effects of the treatment.
Zach developed severe learning disabilities. Thankfully, we had AWESOME teachers and case workers who watched out for great opportunities for him. We were so grateful for our dedicated team, and we let them know it. A little gratitude goes a long way.
Zach worked hard in school. He was determined to fit in socially - you know the whole stigma about being the “special ed kid.” To this day, Zach has two really great friends, who have stood by him through it all. J & J (you know who you are), we all are so thankful for you!
Zach was on an IEP throughout school. He graduated from high school in 2010. God kept his promise! Tom and I couldn’t hold our smiles back when he walked across that stage at graduation! Next, he attended a program for young adults with disabilities, working to refine his reading and math skills and learning independent living skills. He also worked with an organization that provides work experiences for adults with disabilities. This lead to a work experience at a cabinet making facility in a town near us. This lead to a full time job!
Last summer, Zach got his driver’s license and is working full time at the cabinet making company. He is a successful, productive, happy person. Every parent’s dream!
The three Stooges - Zach, Cory & Hannah
Just last week we recognized his 17 year cancer free anniversary. We had a tradition of going out dinner every year to celebrate the day. Last year Zach said, “You know, we don’t need to do this any more.” I guess he was ready to move on… So, no dinner celebrations, just a quiet feeling of deep gratitude. God is Good - All the Time!
Thank you to Linda for inviting me share my story. I look forward to day when you can write your blog entries telling of your cancer journey in the past tense.
Love to you,
Thank you, Amy, for taking time to share your joyous ending with us! Your story will be a great inspiration to many, I am sure!! It has also been very helpful to have you as a guest blogger since I've had a horrible chemo week - I've been in bed 5 days now.
I'll keep fighting the fight like we all do!
XOXO ~ Linda ツ