Clinic Update - 4 Years Out of Treatment

Kennedy and Dr. Sarvida

September is childhood cancer awareness month.  My community is adorned with Gold ribbons, a nagging reminder that some are still facing the nightmare we went through. 

We often forget what Kennedy (we all) experienced during those 2.5 years.  To me, she is my shining, beautiful and goofy 11-year-old princess.  Normal. As if cancer never invaded our lives.

But cancer did knock on our door and we will never be the same.  Every fever, growing pain, headache and bruise is a concern.  Kennedy marked 4 years out of treatment this September.  Now it is Kennedy that asks, “what if the cancer comes back?”  We tell her it won’t.  Life has no guarantees but I know “it won’t” is the right answer.  Maybe she sees our reaction every time she doesn’t feel well.  Was it that trip to the ER for a migraine that got her concerned?  As parents, we strive to do better.

We are frequently asked by friends and family how Kennedy is doing.  We answer, “fine, she’s dancing, doing great in school – she’s a typical tween”. It’s true, she’s doing great but not unscathed.

The chemo did create some nuances in Kennedy’s development.  Her executive function, working memory and processing speed is developing slower than expected.  Although she scores straight A’s, she has to work harder and longer than her peers.  Her hands and feet also shake and she is prone to frequent migraines.

Kennedy’s chemotherapy protocol was heavy in Methotrexate, which included IV flushes, spinal infusions and oral medication.  Methotrexate in children is known to cause neurocognitive delays and Vincristine is known to cause neuropathy.  

We went for our annual visit today, thus this entry.  We recently switched hospitals to Hope Children’s Hospital in Oak Lawn because they have an incredible survivorship program and magnificent doctors (Ricarchito Manera and Ellen Sarvita). We met with a nutritionist, educational specialist and survivorship nurse – it was a long day for us with a lot to learn.  Kennedy was also seen by one of her favorite doctors – Dr. Sarvida; her smiling face and loving demeanor made the hour ride worth it.  

Overall, everything is good.  Kennedy will continue to be monitored each year and I will do my best to keep everyone posted as she continues to thrive.

One final note – this year’s Santa Hustle 5K and Kids Run at Soldier Field on December 2 will benefit Bear Necessities Pediatric Cancer Foundation.  Come run with us and save $7 off admission with code: KENNEDY.  Participants get a hoodie, hat, beard and finisher medal.  Register at www.santahustle.com

Until I blog again – cheers!

With love,

Edan