chemo daze…. **days
Carson’s now a month and a half into her weekly chemo treatments along with her outpatient therapy appointments and school as a first grader. She is handling it all like a CHAMP as we settle into this new routine.
Cam and I take turns making our way downtown on Monday mornings for chemo days. She RUNS each time down the walkway (without hesitation even though she knows that the day holds) from the parking garage into the hospital with Santa Pup in tow, hides in her favorite nook while we check in, then we head up to the top floor.
We normally wait for a bit before a nurse calls her in to take vitals and access her port. We apply numbing cream in the morning so that accessing her port is painless, but it is still a bit scary for her. The nurse draws blood then we settle into the shared treatment room with incredible ocean views while we wait 1–2 hours for the bloodwork to come back.
This process to see if her levels are still high enough to receive treatment. Each week that we hear that we can continue is a big relief. Some of her levels continue to fall as her immune system weakens due to the chemo, which is to be expected. If levels are too low in certain areas then she may need to be admitted to an in-patient room and hospital stay/ a blood transfusion. This is nerve wracking, but we are reminded of the Lord’s faithfulness in sustaining us all as well as the incredible medical team she has surrounding her.
Carson’s oncologist then comes by to talk with her and then gives the go ahead for the day’s treatment. We absolutely love Dr. Kuril and his wisdom, time spent talking with us weekly, and his kindness towards Carson!
Carson then receives her two types of chemo while she plays and hangs out. We like to slip new toys/activities from generous friends and family to pull out from her chemo backpack. I have a great stash to pull from the gifts that have been sent her way from the start of this journey!
The actual infusion takes about an hour and half. Once this is done, she heads back to the first room to de access her port and head on home! This whole process ends up taking up most of the day.
So far, we have not noticed many side effects, which is incredible. She did throw up one morning after treatment but rallied quickly and was fine the rest of the day. That night when putting her to bed, she said, “but Mommy…. What if I throw up again tomorrow?” I responded with, “then I’ll clean it up!” She said okay then rolled over to go to sleep unbothered and we haven’t heard worries since!
We were given a medical play kit that includes a central line, syringes, and other tools that look like the actual ones Carson sees at the hospital. The girls love to play “chemo” and Cam and I are their patients. These doctors are quite demanding!! It’s been so special to witness how Carson and Sullivan are processing through this version of play. We are thankful for the glimpses into their precious hearts and minds.
Carson is now set up with some amazing support at school to provide extra help as her brain continues to heal and adjust and her body grows stronger. The consensus among those who work with her there is that she does not like to receive special treatment and wants to figure things out with her new limitations. She told me she had to walk laps at recess for talking too much in class and I could have cried tears of joy… after reminding her to follow rules of course! Our girl is feeling safe and comfortable in class despite her surgery scars/ patches of hair regrowth that sometimes stick up/ leg brace/ physical limitations and is being held to the same expectations as the other students. Amazing! She’s also giving all of us heart attacks with her attempts at one handed cartwheels but we’ll just be thankful for her commitment to trying new things!
We’d love continued prayers that the treatment is working to shrink/kill the tumor, her health (remember all of the germs that pass through the 1st grade crew… and daycare germs from her sister… plus continued presence of *that virus* we don’t like to talk about?), and the emotions in our household. She has been such a trooper but emotions remain high and our patience runs thinner than we’d like to admit. Cam and I have to keep reminding ourselves that emotional outbursts may not necessarily be from the situation in front of us but from a build up of the new challenges she is facing/ realization of things she used to be able to do and be part of that are on hold right now… this goes for not only Carson, but Sullivan and us too!
Now off to prepare for another round tomorrow. Thank you for the continued prayers, love, and support on this journey.
💜🦄
