Clara began maintenance chemo on Dec 27, 2022. Maintenance chemo consists of two oral chemos, one that she takes everyday for 18 months, and one that she takes every Tuesday for 18 months. While it still sounds like a lot of chemo, our appointments at Children’s Mercy went from weekly to monthly, so in many ways we truly got a lot of our life back— well, at least our time.  At Clara’s monthly appointments, they always draw lab work and adjust her oral chemo dosing to ensure they keep her ANC low enough that cancer can’t grow back and high enough that she’s not neutropenic and needs to be isolated. Some of those monthly appointments also include IV chemo and her “back pokes” (lumbar punctures with chemo that goes into her spinal fluid.) But IV chemo is no longer weekly! And our “back pokes” are spacing out, which Clara greatly appreciates!

In Mar 2023, her port-a-cath stopped working and had to be replaced, so that was a bit disappointing. Clara had to undergo a minor outpatient surgery to remove and replace the port, and as always, she was a champ! Our new port works like a charm, so praying this one lasts us until next summer!

Clara “graduated” from 4th grade with flying colors and we headed into summer with some newfound energy, ready to make up for lost time last summer. We visited our “Happy Place” in SC, and soaked up all the sun and beach and family and food we could in a week. Clara also went to her first sleep-away camp at Camp Quality, a beautiful and safe experience where she was in camp with all kids either with cancer or survivors of cancer. The staff were nurses and caregivers from local hospitals, many from Children’s Mercy. And of course, Clara’s nurse Sherry, was among the many angels we left our girl with. Clara had her own personal counselor, Molly (who happens to be Sherry’s daughter) who spent the week doing everything Clara loves. It’s such a cool concept to put all these kids with cancer together for a week. Clara came home talking about her new friends journeys, their ports, who took chemo and who was done… it normalized her whole experience to meet others going through similar things.  And talk about being spoiled— these kids get gifts upon gifts all week, all the toys and candy from the camp store, and play so many games and activities— the fun was real and certainly filled her cup after the year prior.

On the last day of camp, Clara had to leave early, as she was invited to be one of the first riders on World of Fun’s Zambezi Zinger.  I’m not sure she ever appreciated the nostalgia that came with this ride for Mom and Dad, but she’s an adrenaline junky and she loves all roller coasters. What a fun ride!

The rest of the summer in many ways looked a lot like yours likely. Clara did dive team, went to the pool, joined a soccer team, played with her friends, played with her siblings, fought with her siblings, and played more again, etc.  But I’d be lying if I left out the other very real parts of our summer… the tears when everyone else can get in the lake and she can’t… the 12-18 hours of nausea every Wed as she recovers from her methotrexate taken on Tues night… the “almost fevers” which require us to monitor for hours to make sure we don’t go over 100.4 for an ER visit… the re-emergence  of migraines for which we are now seeing neurology. And that’s not mentioning the significant grieving and processing that this new, “easier” phase has allowed us all to do.  My silence on this caring bridge certainly doesn’t mean we’re done with this journey. We are very very much still living with cancer, just not in such a crisis-mode as 2022. 2023 has proven to be full of a lot of emotional work that certainly has drained these parents most of all.  

That being said, Aug has now arrived and Clara begins her second school year as a cancer survivor and a 5th grader! She is trying to go to school at least 4 full days— so far it’s only kind of working— but we will get there! (Unfortunately, mornings are still a struggle and she just doesn’t wake up feeling well many days.)

Clara’s also filling her time in her role as the LLS Light the Night Pediatric Hero. She was on TV in May and has shared her story at a few events this summer. She is back at it, raising money for LLS with an even loftier goal of $35,000! I’ve joked with her that she needs some corporate sponsors with these goals, because our people (namely, her parents) are running out of money for her lemonade stands!  But I’m so proud of her desire to do something for kids with cancer. This whole experience has clearly changed her, and we do love seeing the beauty that’s coming from it all.  If you’re interested in supporting her, I can share the link for her site.

Thank you for asking about Clara and our family and for remembering us in your thoughts and prayers. You continue to sustain us, and fill us with overwhelming joy, comfort, and strength in ways we can’t begin to describe. Less than 1 year to go… end date for chemo is June 2024!