Happy Holidays to all!

As 2022 nears to an end, we would like to summarize Jadyn’s Healing Journey since her initial diagnosis of Stage 4 Adrenalcortical Carcinoma in September 2021 to the present and to lay out future goals.

Undoubtedly, it has been a long and bumpy road filled with highs and lows, but through it all, Jadyn has remained optimistic and determined to beat back the specter of this rare and insidious cancer.

Jadyn's path to wellness started with an initial dose of chemotherapy on September 20, 2021, in Anchorage, followed by a trip to the Seattle Cancer Care Alliance and the Fred Hutchinson Cancer Research Center where she met with an endocrinologist and an oncologist who specializes in adrenal cancers to provide counsel on the next steps and future treatment plans.

Since those initial meetings, Jadyn has met with several health professionals who have aided her in her quest to beat this illness. They include Dr. Webb, her primary oncologist in Anchorage, Dr. Harmon a naturopathic oncologist also in Anchorage, and most recently Dr. Del River,o an oncologist and endocrinologist specializing in ACC who works out of the NIH in Maryland. Along with others, they have formed a team that has done its best to get Jadyn to the goal of primary adrenal tumor shrinkage and onto the ultimate goal of surgical resection.

Looking back at the one-month anniversary of Jadyn's diagnosis, she met with the aforementioned Dr. Harmon, a naturopathic oncologist who spread positivity with his knowledge of recent advancements in Europe and the US. He confirmed that a Stage 4 diagnosis is not always as dire as it used to be. Jadyn took that knowledge and made it the cornerstone of her will to fight against this cancer at all costs. She was feeling strong, had an amazing attitude, and was experiencing tumor shrinkage and less pain than when first diagnosed.

In late November of 2021, Jadyn was doing well, well enough to work part-time. There was tumor site shrinkage, her immunity was strong, and her overall labs were good. Her lung CT also showed lung tumor shrinkage and no new metastases. At this time, she had completed her third round of chemotherapy out of a four to six-round series, and she was feeling healthy and able to return to some of the activities she loves such as piano lessons and skating.

Overall, 2021 ended well, but Jadyn had a rough start to 2022 — the lung tumors were now showing growth, and there was cancer metastasis to her liver. The original adrenal tumor however did not show any change. At this point, a decision was made to switch to immunotherapy which has often shown success in aggressive cancers such as ACC.

At the end of February 2022, Jadyn was hospitalized with sepsis. Fortunately, medicinal interventions were started quickly, and she started feeling better quickly. The overall news was not all positive — there was tumor progression in her lung and liver. The hope was that this was a phenomenon known as pseudo-progression caused by the start of the new immunotherapy treatment. At the suggestion of Dr. Harmon, plans were then made to consult with the Kleef Treatment Center in Budapest. After a much-anticipated Zoom meeting, however, it was determined that much of what they could offer was already readily available in Alaska.

A new treatment plan was started in Alaska doing targeted radiation aimed at her adrenal tumor consisting of ten appointments over the course of two weeks. Radiation, like her previous treatments, was not easy and it took its toll on Jadyn. The treatments are cumulative, so every added dose was exponentially tough on her body. Throughout the physical discomfort, nausea, fear, and anger, Jadyn somehow focused on peace, love, and remaining positive.

In April 2022, having restarted immunotherapy, Jadyn was feeling constant and unwavering nausea though on the 15th she received positive news that her labs were good. A new plan on how to take the immunotherapy was put in place to lessen nausea, and by April 22nd she was feeling well, attended the Bear Tooth employee party, and was in great spirits.

By July 2022 Jadyn was focused on enjoying her summer and taking breaks every few weeks for more immunotherapy treatments. She was regaining energy and strength and could even start serving part-time at the Spenard Roadhouse.

There was also some additional great news, the targeted adrenal tumor had shrunk drastically. The lung nodules were slightly bigger, but still barely a centimeter. There was no new metastasis found.

Jadyn started working to increase her daily immunotherapy dosage to try and get those lung nodules and other sites smaller. Her thyroid levels were down to completely normal and all the other levels were normalizing as well. She was gaining weight slowly but steadily, and feeling energized with the positive progress.

On August 10, 2022, Jadyn met with Dr. Del Rivero of the NIH, an endocrinologist and oncologist specializing in ACC. She was told she might have to go back on a different type of chemotherapy and might have to do radiation again. The goal was still to shrink the tumor enough to be able to do surgery.

Dr. Del Rivero and her team research ACC and are considered leading specialists. ACC is very rare, extremely aggressive, and difficult to treat because there is little information. The tumor itself produces hormones such as cortisol and testosterone. Abnormal levels of these hormones can be extremely problematic for cancer patients.

Jadyn‘s hormone levels were very high earlier in 2022. There had been progress in normalizing them; however, she still had too much cortisol in her system. Too much cortisol will dampen the immune response. Jadyn was on immunotherapy drugs which work to put her immune system in hyperdrive and having an excess of cortisol was potentially mitigating the effects of the immunotherapy. After going through extensive radiation treatments in March, coupled with immunotherapy, the adrenal mass shrunk significantly. The doctors now believed that the impact on the tumor was primarily due to the radiation because the immunotherapy was being stunted by excess cortisol.

The goal has always been to make surgical resection of the adrenal mass an option. To do that, the adrenal tumor needs to shrink more. The surgical oncologists need to be able to remove 100% of the tumor and as it stands they cannot. If they don’t remove all of it, the leftover pieces could proliferate exponentially while Jadyn recovers from the surgery (she wouldn’t be able to be on any treatments for that period of time). Dr. Del Rivero and her NIH team believe this is a possible scenario for Jadyn — 100% resection of the adrenal mass. This is the first team of doctors who have said this, everyone else said it was not an option.

To further shrink the adrenal mass, Jadyn started another round of chemotherapy in the beginning of September 2022, and the possibility of another radiation regimen was also discussed. She started working with the endocrinologist to reduce the cortisol levels so that the immunotherapy could be fully functional. Overall, it was a positive appointment. Dr. Del Rivero was kind, incredibly knowledgeable and she laid out the possibility of additional tools and options that could help Jadyn. She also began working in tandem with Dr. Webb, Jadyn’s Alaskan oncologist.

In August 2022, Jadyn took a trip to London, and it did not go according to plan. She spent almost the entirety of her trip in a hospital. She was there initially because she was nauseous and could not keep any food/water/meds down for over 24 hours. They believed it was an infection in her right lower lung and it morphed into pneumonia. They worked to stabilize her and send her home.

In September 2022, Jadyn made it home safely from London, but her fever and nausea symptoms returned rapidly. She was treated at Providence for significant occlusive pneumonia. New CT scans were taken, and the results were jarring. The plan was to throw everything at the lung infection to clear it up quickly so that Jadyn could resume chemotherapy. On September 8th, Jadyn went home from the hospital with antibiotics and a management plan for her symptoms. They were working to find a way to restart treatments while simultaneously eradicating pneumonia. Later in September, she was able to start a new chemotherapy regimen.

On September 14th, 2022, Jadyn reached the one-year anniversary of her ACC diagnosis. She was incredibly grateful and once again proved to herself and her doctors that she is a fighter.

On October 12th, 2022, the scan results showed that the majority of the tumors had grown since her last scan, but only by millimeters. One tumor however did get smaller. It was only a month since her previous scan and even less than a month since starting her new treatment, so there was still hope that in time the treatment would kick in and start to shrink the rest of her tumors.

Jadyn then traveled to visit dear friends in Seattle and Bozeman. While there, she did her best to enjoy her time, even catching a Modest Mouse concert. Unfortunately, she was also managing increased nausea and significant abdominal distention. Upon her return home, she experienced significant edema in her extremities as well as a significant and quick increase in abdominal distention. After an ER visit, they found that she did not have a blood clot (which is a concern with the swelling after a flight). Then on December 10th, 2022 , just a couple of days after that hospital trip, Jadyn’s oxygenation was low; she was pale, weak, swollen, and nauseous. She was put on oxygen, given antibiotics for suspected pneumonia, and admitted to Alaska Regional. She was also given a blood transfusion and morphine for the pain.

The doctors were extremely concerned — the disease burden is now exceedingly high, impacting multiple systems that were operating efficiently until recently and suspected the swelling and lack of oxygen were likely due to her rapidly growing tumors. In their view, the options for treatment are now minimal and not very powerful compared to the cancer. Despite the setbacks, Jadyn opted to get the new treatment, an oral form of chemotherapy, and have the support of palliative care to manage everything.

On December 14th, 2022 Jadyn was discharged with at-home oxygen and antibiotics. Since being back home, Jadyn has received some positive news. The Guardant360 Response™ test is the first blood-only test that enables doctors to view the molecular response, or changes in circulating tumor DNA (ctDNA) levels, from a simple blood draw to get an early indication of patient response to immunotherapy or targeted therapy. Jadyn’s team performed a new Guardant360, and found that her cancer cells are now producing a specific marker that may be targetable. This means that she may be eligible for a clinical trial currently conducted at MD Anderson in Houston or Columbia University in New York. Unfortunately, neither facility accepts her medical insurance, and so far, we have not received much follow-up regarding out-of-state financial aid options.

As we wait and hope that she will be accepted into these potentially life-saving studies, we find ourselves asking Jadyn’s incredibly supportive and loving community of family and friends for much-needed assistance. Can you find it in your heart to donate towards Jadyn’s new go-fund-me page? Jadyn’s original page raised enough funding to carry her through this last year, but now she is at a point where she is completely unable to work, and these donations will go directly to the expenses related to a much-needed clinical trial. Let’s, please try and get her 2023 off on a positive note. She and her family are forever grateful to all of you. You have truly made a difference.