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On January 4th 2020 my wife Kayleigh, an otherwise healthy and normal 31 year old woman, went to the emergency room for persistent back pain and swollen lymph nodes that plagued her over the Christmas holidays. After waiting in the emergency room to be admitted for 5 days Kayleigh stopped being able to breathe on her own as her whole body swelled with fluid and she was rushed into the ICU for emergency procedures to keep her breathing. Her liver, spleen, lungs and digestive system shut down as her lymphatic system slowed, her body swelled, and she had to be put into a medical coma with a breathing and feeding tube for life support, along with an array of other tubes to continuously drain the excess fluid in her chest and abdominal cavities. This was a terrifying experience for us, our families, and friends as things had escalated so quickly and there was no clear explanation as to what was suddenly killing her.
Kayleigh was unconscious on life support for 9 days and in intensive care for 12 days while her body battled what we now know was a very rapidly growing cancer of her lymphatic system that had spread throughout her body and progressed to stage 4 cancer within a few short weeks. On day 6 of her coma she was diagnosed with a rare non-hodgkins T-Cell lymphoma (systemic ALCL alk+) and was treated as soon as possible with chemotherapy in hopes it would save her life. The cancer seemed to respond well to the treatment and after a day or two her tumors shrank, the excess swelling reduced, and although she is severely debilitated from this attack (too weak to move her body), Kayleigh has shown amazing strength and resilience. After 12 days in intensive care she is now out of the ICU and in the cancer care hospital ward slowly recovering since January 21. She has begun an aggressive lymphoma treatment regiment called CHOP which will take 15 weeks of intense and difficult chemotherapy before she is reassessed for remaining signs of the cancer.
This type of non-hodgkins lymphoma (NHL), called anaplastic large T-cell lymphoma, is quite rare, occurring in less than 1% of all NHL and therefore does not have a lot of dedicated research associated with treatment and cures. The challenge with stage 4 lymphoma is that the cancer cells are widely distributed throughout her body and within her bone marrow where blood cells are produced. At this stage there are higher chances that the cancer may return after chemotherapy, and with such an aggressive expression it may be more difficult to treat a second time.
The good news is there are new medical diagnostic technologies called next-generation sequencing (NGS) services that can analyze the genetics of her tumor cells to understand the specific mechanisms of the mutations that cause the cancer to grow. This information enables the use of more targeted and effective chemo drugs and opens up the possibility of getting Kayleigh into clinical trials that are designed to explore the use of new immunotherapy technologies such as CAR-T, essentially an engineered immune system that will fight her cancer without harming the rest of her body like traditional chemotherapy drugs. This will significantly improve her long term odds of beating this kind of rare and dangerous cancer.
We are raising money to help cover the cost of these NGS medical tests and services that will help Kayleigh get enrolled in next generation therapies specifically to target and cure her of her cancer. These services cost between $10,000 to $20,000 for the DNA sequencing and analysis, and the advanced treatments can cost hundreds of thousands of dollars. Her doctors are confident that Kayleigh is young and healthy enough to win this long battle with the right medical expertise, strength and determination, and a whole village of support. Let's help Kayleigh kick cancer's ass and progress the clinical research and science of ALCL treatment to help save or improve the lives of others with similar conditions for years to come.
For more information on the kind of medical testing we are funding and the importance of integrating these methods into the Canadian medical system see here:
https://current-oncology.com/index.php/oncology/article/view/4731/3547
For more information on her specific cancer see here:
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