Ways to help the Stenson Family
My sweet niece, Charlie, who is 3 years old, was diagnosed with cancer the week before last Thanksgiving. 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. 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 to find 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.).
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 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, and it's treatable.
Here is a brief overview of what their cancer journey had 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 plan to do a stem cell harvest and they she will begin cycle 2 of chemo the next day.
At the end of treatment, they will do a stem cell infusion, more details to come about that.
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! Please pray that this regimen of chemo treatment does the job and has Charlie celebrating her 4th birthday cancer-free in September. Pray that her side effects are minimal and she continues to have a sunny disposition the next few months. Its a tough road but she is a tough girl who does tough things!
GO FUND ME: With hospital stays and treatment also come bills, gas expenses, and additional food costs. If you are able to contribute monetarily on top of your prayers, please 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.***
MEAL TRAIN: Next up, they are going to need some help with nutritious meals over the next several days, weeks, and months. I have set up a Meal Train where you can sign up for specific days to bring meals, as well as ideas for gift cards etc. I will update the meal train as often as I can with their needs. Here is a blog post of freezer meal ideas!
MARY BRIDGE AMAZON WISHLIST: There is an incredible playroom at the hospital where Charlie had been receiving treatment and all of the toys and crafts are free for the kids to use in the playroom, bring back to their room, or take home with them. Mary Bridge has set up an Amazon Wishlist if you're interested in donating a toy or craft to the hospital in honor of Charlie.
If you have any other ideas on ways to help, please feel free to let me know!