February — Checking In
It’s been awhile, which must be a good thing as we haven’t had many updates to provide!
It’s been a little over 10 months since Carson’s diagnosis. Thinking back over the past 10 months makes our heads spin… seeing photos from our hospital stays and her progress through in-patient rehab brings all sorts of emotions. She has come so incredibly far yet thinking of the impact of this on her future is overwhelming (if we allow our minds to travel there). We continue to be amazed by God’s hand in this and the ongoing love and support by those keeping us held up and moving forward.
Carson had an MRI on Monday to check in on the status of her tumor. We received a call that night to let us know it is stable, which she said was good news. Cam and I are battling disappointment as we were hoping for continued shrinkage. The doctor shared that at some point tumors like this stop shrinking, so remaining stable is good news. Her oncologist shared awhile back that shrinkage from treatment, as evidenced by her previous MRI, significantly decreases the chance of the tumor growing again. Our prayer is for this to be true for Carson’s blob.
Carson is about to start her 3rd round of her chemotherapy maintenance cycle (4 weeks on, two weeks off/specialty appointments for a total of 8 cycles). She is such a trooper on chemo Mondays and we have figured out a good routine on these days. She has started to become more nauseous during and after treatment but thankfully is not bothered by throw up… and is quick to bounce back! These days have become special time with our girl. She even wanted to stay longer the other week to finish her craft and said she wasn’t ready to go home!
She’s continuing with her weekly outpatient physical and occupational therapies and we are excited to see her regain some strength in her right arm and right leg. The doctors cannot predict how much use of her right side she will be able to regain so the plan is to continue with therapies and see how her brain and body reacts and grows. We’re continuing to figure out ways to adapt things to give her more independence as she learns to navigate daily tasks in a new way.
Carson is loving school- which has been amazing to see and is a huge testament to her teacher, resource teachers, classmates, and the staff at the elementary school. She’s facing added challenges in learning as her brain heals from surgeries and as she misses days due to treatment and therapies but does not seem too bothered by it… we received a photo the other week of her leading a conga line during lunch, so I’d say school continues to be a hit!
Over the past few months we had wonderful time with our families at Kiawah Island (a local beach that is one of our favorites) over Thanksgiving and Christmas breaks. We are limited in travel due to Carson’s treatments and need to remain close to her hospital in case of complications. Charleston has proven to be a fantastic place to live if you need to stay put!
Carson landed her first ER visit/ hospital stay right before Christmas and handled it like a champ. She had a low grade fever one night after chemo which required her to be seen in the ER due to risk of infection of her port. Her temperature guidelines are quite strict, so we are thankful to be close to the hospital for times like this. She was admitted and treated for COVID, which was a surprise to us when Cam was home with the flu! Thankfully, she had minimal symptoms and we were able to experience what an unexpected ER/hospital stay while on chemo would look like. As much as I wish we didn’t have to experience that, it did take a lot of fear out of the unknown. We stayed entertained with spying on the city through binoculars and watching plenty of Mira Royal Detective!
Cam here. The other big news for our family this year has been the wrestling team dedicating their season to Carson. It all started with Coach Tucker, the head wrestling coach who I have coached with for the last 10 years, asked me if I could get Carson to draw the Summerville “S” logo in her own way. He then had t-shirts made with that S on it for the wrestlers and the fans, and designed pink singlets that had her S on the front and said Carson on the back. It was humbling and amazing seeing a bunch of high school guys and their families rally around Carson and use her story for motivation and strength. Our first home dual meet even the other team all warmed up in the Carson S Summerville shirts. Carson and her friends loved coming to the matches and cheering on the guys. We just finished our state run where we came up just short and lost in the state finals. It was a season that we will never forget. The girls now play the song we come out to (Never Sacred) on repeat at the house. Check out some pictures/videos of the singlets and some stories the local news did on us!
