Kathleen's dream to a reality!

Kathleen Perry’s Journey and Final Dream!

I am starting a GoFundMe for my sister Kat who has terminal cancer. She has been fighting this disease for over 13 years now and anyone that knows her or knows her story, knows how incredibly hard the last few years have been for both her and her family.

Kathleen Perry was first diagnosed with Acute Myeloid Leukemia in 2010, when she was 27 years old. Most people with this disease only live for up to 8 weeks after symptoms start without treatment, yet she wasn’t diagnosed until nearly 12 weeks after her initial symptoms. She was throwing up most of Christmas of 2009, which is what prompted her to go to the hospital a few days later. Her children at the time were 2, 5 and 8 years old.

She spent the next 6 months going through intensive chemotherapy (losing all of her hair in the process, which would happen each time she had to do intensive chemotherapy), as well as radiation therapy and eventually received a stem cell transplant from her brother Rick in May of 2010 at the Seattle Cancer Care Alliance (SCCA). She was very lucky to have a matched donor as a sibling, as many Leukemia patients do not. During her 1 year follow up after her stem cell transplant, her bone marrow biopsy indicated that the disease had returned.

Because her original stem cell transplant was a t-cell (lymphocyte) depleted transplant, her doctors informed her that while removing t-cells from transplants was helping with reducing a severe side effect known as Graft Vs. Host Disease (GVHD), it was also reducing the effectiveness of the transplant, and something called Graft Vs. Luekemia (GVL). So they decided the next thing to do would be a Donor Lymphocyte Infusion, or DLI. This is similar to a stem cell transplant, however only the donor lymphocytes are given. This again was proceeded with several months of chemotherapy. After her DLI, she had a severe GVHD reaction which primarily attacked her liver. She was put on high dose steroids to treat the GVHD, it seemed that the DLI had worked, as it put her in remission for over 7 years. Her doctors as well as most online medical journals state that if you are in remission for longer than 5 years, the chances of it coming back are less than 1%. She thought she had put it all behind her.

While working as a Certified Nursing Assistant (CNA) in December of 2018, she noticed that her arm was swollen and warm, and her supervisor insisted that she go down to the ER to get it checked out. She had a clot in her arm and was also told that the disease had returned.

After consulting the doctors again at the SCCA, they determined that because she had such a good result from her first stem cell transplant (with the DLI), they would do another transplant, this time including the t-cells. Again, she went through intensive chemotherapy and radiation, and received a second transplant in April of 2019. This transplant was not as a smooth as the first, as she was older and her body had already been through so much treatment, which can have a cumulative effect. She had kidney, lung and heart issues that arose as part of the treatment with something called organizing pneumonia, which required her to be put on oxygen for some time.

Roughly a year and some months later, she again began to notice symptoms and was hospitalized several times due to random blood clots. In late July of 2020, she was informed that the Leukemia had returned, not just in her bone marrow and blood, but also as soft tissue tumors all over her body, called extramedullary disease, or Myeloid Sarcoma (MS). Because of everything she had already been through, the Doctors did not think that another transplant would be effective or even safe for her, as she had already reached the limit they considered safe for radiation therapy, which is required in order to do a transplant. Instead they suggested that she could still get more intensive chemotherapy, which could allow her body time for her new graft to start fighting the disease. She went through another 4-5 rounds of chemotherapy, in which time she was hospitalized several times for infections, a head injury while her platelets were low, as well as a couple of trips to the ICU, one for a large pericardial effusion (fluid build up near her heart) that caused her blood pressure and heart beat to drop dangerously low and then had to be drained surgically, as well as for a heart attack caused by a spasm. The doctors believed that these were most likely caused by the significant amount of one of the chemotherapy drugs she had received called cytarabine. Because of this, and the fact that she was in remission, they decided to hold off on any more treatments and just monitor things for a while. Her bone marrow was having a hard time making cells, and she was dealing with skin GVHD causing sclerosis so she had to continue going back and forth to Seattle for transfusions and treatment for the GVHD from July through December of 2022. In late December of 2022, right after her 40th birthday, the doctors again saw Leukemic blasts (cells) in her blood work.

At this time, they let her know that unfortunately intensive chemotherapy is no longer an options due to all of her complications. They presented her with only a couple of options, one being to do nothing, to maximize the time she has left with her family and friends, the other option was a less intensive treatment that they normally reserve for elderly patients or those not healthy enough to get intensive therapy. They let her know that this could give her some more time, but there was almost zero chance that this would put her in a complete remission again. While going through this treatment, she developed a kidney stone that blocked her right kidney’s ability to drain, and she had one of her MS tumors that was putting pressure on the other kidney which wasn’t allowing that one to drain either. She started to reach kidney failure, which required an emergency surgery to put stents in both of her ureters to allow them to drain. She is currently awaiting surgery to remove the kidney stone and replace one of the stents. Her doctors have decided to hold off on any treatment until at least after the surgery. Over the last week or 2 of being off the treatment, she again has leukemic blasts in her peripheral blood. Her doctors are also not sure how effective this less intensive treatment will be at treating her extramedullary disease and have a PET scanned scheduled next week to review its progression.

While she was in remission several years ago, she had the amazing opportunity to go to Kauai, Hawaii with her mother-in-law, but due to financial and work reasons, her husband (who is active-duty Army) and 3 children were not able to go with her. It was always her dream to go back and bring her family with her. I want to help make her dream come true. She is one of the most caring, kindest people in this world and doesn’t deserve the years of physical and emotional pain this disease has put her through. Please help me with whatever you can spare to give this amazing girl and her family some memories that they can always treasure.