Ways to help the Stenson Family
My sweet niece, Charlie, who is now 4 years old, was diagnosed with cancer the week before last Thanksgiving almost a year to the day, shortly after her 3rd birthday. She has had tummy and digestive issues for some time now and has been seen quite a few times to try and find the cause (check out this Instagram post with a more detailed timeline), each time resulting in a different theory. On November 20th, 2022, after having a fever for a few days and not acting like herself, Emily and Derek (Charlie’s parents) decided to trust their gut and take her to the emergency room in hopes of finding some answers. After multiple tests, scans, and hospitals, they finally received the devastating news that Charlie has stage 4 cancer. They found a tumor that was about 5 inches long (the size of an iPhone) in her abdomen and that the cancer had spread to her liver.
They did two biopsies on the tumor, the first was non-invasive with just a needle to extract some of the mass, but a few days later they did a more invasive procedure where they did a 3" incision on her abdomen, removed 6-8 small tumors from the liver, as well as her omentum which had a large tumor on it as well. They were not able to remove the very large tumor at that time but needed to wait for an official diagnosis before they could make any decisions. The biopsy came back and they received the diagnosis on 12/2 that it may be a Sacrococcygeal Teratoma (I say "may" because at the time they were unsure where the origin point of the tumor began: ovary, rectum, coccyx, etc.). It has since been confirmed that it was attached to the coccyx which was removed during her March surgery.
Sacrococcygeal teratoma (SCT) is a tumor that forms on a fetus' tailbone, also called the coccyx. The tumors are usually not cancerous (benign) but can be life-threatening if not treated. The frustrating thing is that they did find this tumor when my sister-in-law (Emily) was 20 weeks pregnant. They monitored her during pregnancy, thinking it may have been either feces or a tumor, and ended up not seeing it on some scans in the early days after Charlie was born and said that it was most likely just poop.
While it's a rare tumor, only about 100 kids a year get this type of cancer, it's treatable. However, while treatable, they are still dealing with a rare tumor that doesn't have a certain treatment plan, and it feels a lot like they are building the plane hile flying it
Here is a brief overview of what their cancer journey has looked like so far, starting with diagnosis day!
November 20th: Derek and Emily took Charlie to the hospital after she battled constipation, lethargy, and fever. Their local hospital did bloodwork and a CT scan and transferred Charlie to Mary Bridge where they found out she had stage IV cancer. This was one of the worst calls I had ever received.
December 2nd: biopsy results came back indicating it MAY be a germ cell tumor called a Sacrococcygeal Teratoma, but they were unsure of the origin of the tumor because they couldn't clearly see her reproductive organs, rectum, or coccyx.
December 5th: Charlie had surgery to put in her Port Catheter for easier medication and chemo administration.
December 6th: Charlie began her first round (of four rounds) of chemo
December 22nd: Charlie's hair had started to fall out and it was getting all over the food and things, so they decided to take charge and give her a little bob haircut, she looked so sweet with her new 'do, and then a couple of days later on Christmas Eve, they decided to just shave it all off since it had started to fall out even more. This was the first day her hair went on vacation
February 10th: Charlie's final day of chemo (or so we thought)
February 28th: They had a CT scan, their first since diagnosis day, to see how much the chemo had shrunk the tumor. It was a significant change, however, it was not quite as much of a difference as they had hoped. It was still a positive though.
March 2nd: they heard more about the results of their scan and ultimately their team decided to do a PET scan to scan Charlie's body. They found some cancer cells present but they were unsure if that was accurate so they planned to biopsy the tumor tissue after surgery.
March 24th: Charlie had a MASSIVE surgery where they were unsure of the exact path they were going to take until they actually got in there and had eyes on the tumor. First, they made a large incision on her abdomen to figure out the origin point of the tumor, as well as get biopsies of the mass as well as the liver tumors. Once they determined that the large abdominal tumor was no longer cancerous, they found the origin to be the coccyx (there was concern that it was on an ovary, her rectum, etc). They flipped her over during surgery, made an incision on her lower back, and removed her coccyx entirely, as well as the very larger tumor. They also removed as many liver tumors as possible but were not able to resect them all. The liver tumors were sent off to be biopsied. It was an 8-hour surgery. She is a tough girl are recovered very quickly and was out of there in only a few days, rather than the initial 10 days the doctors anticipated.
March 30: they received the devastating news that Charlie still had cancer. The liver tumors were not fully free of cancerous tissue. They were faced with several options which ultimately led to them switching from Mary Bridge to Seattle Children's. They loved their Mary Bridge team but were pleased to find out that found out their new oncologist at Seattle Children's specialized in germ cell tumors as well as fertility preservation.
April 25th: Charlie had surgery to remove her Port and put in a Hickman line because this next phase of treatment will require stem cell transplants and a different line is required for those. They also removed one of her ovaries to cryofreeze for future family planning one day! They wanted to limit the effects that chemo can have on fertility and removing an ovary for preservation is a new way to go.
April 27th: They started chemo again for Charlie, this time a high-dose regimen with the intention of eliminating the cancer cells that are still currently in her liver. This was the first of 5 cycles
May 10th: they did a stem cell harvest (she is hooked up to a machine for 5 hours that removes her blood, spins it to remove the stem cells, adds calcium back in then puts her blood back in her body)
May 13th: started cycle 2 of their 5 rounds of chemo. Her stem cell harvest was "unsuccessful" meaning they had to do another harvest shortly after several rounds of shots to boost up her stem cell production
They had to relocate to Seattle to be closer to the hospital while Charlies immune system was so low and vulnerable, they needed to be able to get to the hospital quickly.
Cycle 3 of chemo was delayed, due in large part to a shortage of vital chemo meds: carboplatin and cisplatin. These are used for several types of cancer and Charlie was receiving carboplatin but was added to a "wait list" of sorts. We all took a few minutes to email our representatives to help bring awareness to the life-changing shortage.
Chemo ended (YAYYYY!!) at the beginning of August and they finished with a stem cell infusion
August 15th: she had a big post-chemo scan to determine if she was officially cancer-free. The results were not as conclusive as we had hoped, there were still 4-5 lesions on her liver which resulted in several options. The first of which was to re-scan in 6 weeks to see if the lesions grow, shrink, or stay the same. We wanted them to shrink.
September 25th: she had a few scans to check on the status of the lesions, they remained the same (which was good, not as great as iff they had continued to shrink or completely dissolve, but it also means they didn't grow which is good.
They consulted to top germ cell tumor and liver cancer surgeons in the country and opted to remove a large portion of her liver and attempt to remove the smaller lesions as well to mitigate the risk of the cancer returning.
October 27th: she had a long, 8+ hour surgery to remove the remaining lesions on her liver. This has so far been accommodated by a 9-day ICU stay post-op. She recently moved off the ICU floor into a recovery room
Her recovery from this most recent surgery was a bit tumultuous as one of the lesions had adhered to her diaphragm and upon removal, there was a hole in her diaphragm that they sewed up, however, bile still found its way into her chest cavity, making recovery more difficult and adding on additional procedures and monitoring.
After a wild 20 days in the hospital post-op, she was finally released to go home (with a liver stent) and reunite with her baby sister who she has barely seen all month.
November 20th, 2024 marked one year since diagnosis day
At the end of November, they received some big Charlie updates about what they found on the liver lesions that they removed October 27th: some of the lesions that came back were non-cancerous teratomas that matched brain cells, a few of the lesions came back as mature teratoma (non-cancerous but good tore move because they can grow/mutate), two of her lesions came back positive for cancer, one was in the large liver resection, the other was in the lesion on the left that they went into surgery not thinking they would be able to remove. It was a miracle they were able to remove it and thankfully they did.
December 8th: surgery to replace the stent
January 8th: scan to check her liver, check for signs of cancer, etc.
January 11th: they received the news that Charlie's scan showed NO EVIDENCE OF DISEASE. This was a huge milestone we have been praying for all year. However, the radiologist didn't get low enough to get clear scans of her pelvis, the origin site of the tumor, which everyone knows you need to check but not that radiologist (so freaking frustrating). Her liver looks amazing and huge in the best way.
January 30th: she had another scan, this time on her pelvis since they missed it on the last MRI. The doctors called to say there looked to be 3 small spots on the right side of Charlie's pelvis. You can imagine this is frustrating and anxiety-inducing news, as they need to have a biopsy to figure out exactly what these spots are. Could be an infection in the bone, could be swelling, or it could be more serious but we are praying HARD that it's the best-case scenario with the least invasive treatment plan. This means another procedure for this sweet girl. This auntie is still mad at the freakin radiologist.
In October got the go-ahead from her surgeons to take a last-minute family trip to Disneyland a few weeks before her October 27th surgery (literally planned everything for 20 people within 48 hours), which is amazing and Charlie's friends and family made it work so everyone enjoyed their time at the Happiest Place on Earth. We were all happy to have a bit of magic in her life as the last year has been overshadowed by her cancer journey. Her next magical trip will be her Make-A-Wish trip in a week and a half, and we are hoping her biopsy will take place as soon as possible in order to have some peace of mind heading the the Happiest Place on Earth.
We will continue to keep everyone as updated as possible as we learn more (please check out Emily Stenson's Instagram/Facebook stories for more updates in real-time: @emilyestenson). I know a lot of folks will be reaching out asking how they can help, here is a list of ways to help if you would like to:
PRAYERS: Please, first and foremost pray for Charlie and the Stenson family. This time is full of unknowns and anxieties, if you can pray for strength and courage for the family, especially Charlie, that is a good place to start. If you don't pray, please send all the healing and positive vibes her way! It's been a tough road but she is a tough girl who does tough things!
MEAL TRAIN: Over the last year, the meal train has been an amazing way to support the family as they spend time away from their kitchen, not able to make themselves healthy and nourishing meals, relying on fast food or hospital food. They haven't updated this but here is a link to their meal train if you are interested in contributing a meal though I am sure they would love that! They also spend a ton of time at the hospital Starbucks if you want to send something over to them (email email@example.com).
GO FUND ME: With hospital stays and treatment also come bills, gas expenses, and additional food costs. If you would like to contribute monetarily on top of your prayers, feel free to do so on their Go Fund Me. They are small business owners and that means dealing with their own insurance coverage, which can always be a nightmare.
VENMO: If you'd like to gift something directly to Derek and Emily to grab a coffee, snacks, etc from the hospital, Emily's Venmo is @emilyestenson (yes, that's an 'e' in between Emily & Stenson) ***Venmo will ask, but you do not need the last 4 digits of her phone number as long as you feel comfortable donating without that. Just make sure to double-check that it's the correct username.***
AMAZON WISHLIST: People continue to ask how they can help the Stenson Family, so one of Charlie & Annie's aunties put together an Amazon Wishlist for them so that people can have ideas of what they may want or need!
If you have any other ideas on ways to help, please feel free to let me know!