$1,915 raised
·31 donations
Can't Stomach It! Surviving Gastric Cancer
Donation protected
On February 12th, 2019 at the age of 32 Telia was diagnosed with gastric cancer. The cancer was discovered while still in early stages thanks to the National Institutes of Health (NIH) and a clinical research trial study on the mutated CDH1 gene.
August 11th, 2018 Telia and I were bound together in a commitment ceremony before family and friends. Telia and I were unable to legally marry on that date as we had intended to due to learning just months before that when we marry her son, Zachary, would lose a large majority of his health coverage and many of the surgeries and procedures he needs would be uncovered through my insurance plan. For the sake of Zachary, we decided the best course of action was to keep moving forward with the celebration plans as a commitment ceremony to celebrate our love and vow our commitments to one another until the time comes in which we are able to legally marry. The ceremony was beautiful and love filled the air as we danced and sang into the night. We were full of joy, hope, and optimism for the future.
August 13th, 2018 we learned that Telia’s mother, April, had received the results from a recent genetic test she had gotten. The results reviled she has a mutation of the CDH1 gene which has been known to carry a high risk of gastric (stomach) and breast cancer as well as an elevated risk of colorectal cancer. As genetics are passed from parent to child this meant that it was possible Telia would have the gene mutation as well and needed to be tested. In September Telia got a genetic test herself and received her results October 10th, 2018, while we were with Zachary in the hospital after he had spinal surgery two days prior. The results showed that Telia has the CDH1 gene mutation and was at risk for cancer due to the mutation. Due to CDH1, it is highly recommended that those with the mutation undergo a prophylactic total gastrectomy to remove the stomach and double mastectomy to remove the breasts to best mitigate the risk of cancer.
Through research on the CDH1 gene mutation, April learned of a clinical research trial being done at the NIH in Bethesda, Maryland. Both April and Telia were approved for the trial and were sent to the NIH to undergo a stomach mapping procedure which would take 88+ biopsies from the stomach to be tested. April was first to go for the procedure and after weeks of waiting for the results came back as positive for signet ring cell carcinoma stomach cancer and has recently had her total gastrectomy.
January 24th, 2019 Telia underwent the stomach mapping procedure and received the results of the biopsies on February 12th, 2019. The results reviled that two areas of her stomach, the posterior and lesser fundus, were positive for signet ring cell carcinoma. Signet ring cell carcinoma is a rare form of highly malignant adenocarcinoma. The total number of tumors will be determined upon a full investigation of the stomach post removal. At the time of the gastrectomy, the surrounding lymph nodes will also be removed and biopsied. If there is no evidence the cancer has spread to the lymph nodes no chemotherapy or radiation will be needed.
Telia’s total gastrectomy is scheduled for May 2nd, 2019 at the NIH in Bethesda, Maryland. She will be in Bethesda for approximately 2 weeks. During that time I must take time off work and remain in Omaha to care for both of the children, Pamila, 13, and Zachary who turns 6 in April. Because of the fact that Telia and I are not legally married and neither one of the kids are biologically or legally mine I do not qualify for FMLA at work and must take an unpaid personal leave of absence.
We are lucky that Telia is in the NIH clinical trial as a large majority of medical expenses are paid through the trial however not everything is covered by the trial. For example, after the gastrectomy walking is a very large part of recovery but in order to increase her ability to do so prior to the gastrectomy, Telia must undergo ankle surgery (Telia has osteochondritis, tarsal tunnel and arthritis in both ankles). These ankle surgeries would not be covered as part of the trial. Telia will be needing to go back and forth between Omaha, NE and Bethesda, MD multiple times throughout the trial. Each time she is not going for a procedure she will not be admitted into the hospital and would be required to get her own hotel and travel arrangements within Bethesda (car rental/Uber). In addition, any family member who travels with Telia would be responsible for their own arrangements each and every trip.
I am a stubborn man and asking for help is one of my greatest weaknesses but help is what I need. I need help to take time off of work to care for our kids while Telia is gone and help to take care of her right after she returns. I need help to be with her when I can. During the two weeks she is gone for surgery there is a small chance that I may be able to see her and be there for her while she is in the hospital but I need help. I need help to keep a roof over our heads and food on the table while out of work. Telia is unable to work and therefore I am the sole income for our family of four.
I know not everyone will be able to help financially but every dollar is one less dollar to worry about during this time of stress and need. Each dollar makes a difference as our family fights the truest form of evil in this world, cancer. From the bottom of our hearts Telia, Pamila, Zachary and I extend our deepest and most sincere thanks and appreciation for everything each and every one of you have done for us. Please continue to keep us in your thoughts and prayers as we fight alongside Telia as she fights this cancer and battles through the journey on the road to recovery.
With Love,
Kai
August 11th, 2018 Telia and I were bound together in a commitment ceremony before family and friends. Telia and I were unable to legally marry on that date as we had intended to due to learning just months before that when we marry her son, Zachary, would lose a large majority of his health coverage and many of the surgeries and procedures he needs would be uncovered through my insurance plan. For the sake of Zachary, we decided the best course of action was to keep moving forward with the celebration plans as a commitment ceremony to celebrate our love and vow our commitments to one another until the time comes in which we are able to legally marry. The ceremony was beautiful and love filled the air as we danced and sang into the night. We were full of joy, hope, and optimism for the future.
August 13th, 2018 we learned that Telia’s mother, April, had received the results from a recent genetic test she had gotten. The results reviled she has a mutation of the CDH1 gene which has been known to carry a high risk of gastric (stomach) and breast cancer as well as an elevated risk of colorectal cancer. As genetics are passed from parent to child this meant that it was possible Telia would have the gene mutation as well and needed to be tested. In September Telia got a genetic test herself and received her results October 10th, 2018, while we were with Zachary in the hospital after he had spinal surgery two days prior. The results showed that Telia has the CDH1 gene mutation and was at risk for cancer due to the mutation. Due to CDH1, it is highly recommended that those with the mutation undergo a prophylactic total gastrectomy to remove the stomach and double mastectomy to remove the breasts to best mitigate the risk of cancer.
Through research on the CDH1 gene mutation, April learned of a clinical research trial being done at the NIH in Bethesda, Maryland. Both April and Telia were approved for the trial and were sent to the NIH to undergo a stomach mapping procedure which would take 88+ biopsies from the stomach to be tested. April was first to go for the procedure and after weeks of waiting for the results came back as positive for signet ring cell carcinoma stomach cancer and has recently had her total gastrectomy.
January 24th, 2019 Telia underwent the stomach mapping procedure and received the results of the biopsies on February 12th, 2019. The results reviled that two areas of her stomach, the posterior and lesser fundus, were positive for signet ring cell carcinoma. Signet ring cell carcinoma is a rare form of highly malignant adenocarcinoma. The total number of tumors will be determined upon a full investigation of the stomach post removal. At the time of the gastrectomy, the surrounding lymph nodes will also be removed and biopsied. If there is no evidence the cancer has spread to the lymph nodes no chemotherapy or radiation will be needed.
Telia’s total gastrectomy is scheduled for May 2nd, 2019 at the NIH in Bethesda, Maryland. She will be in Bethesda for approximately 2 weeks. During that time I must take time off work and remain in Omaha to care for both of the children, Pamila, 13, and Zachary who turns 6 in April. Because of the fact that Telia and I are not legally married and neither one of the kids are biologically or legally mine I do not qualify for FMLA at work and must take an unpaid personal leave of absence.
We are lucky that Telia is in the NIH clinical trial as a large majority of medical expenses are paid through the trial however not everything is covered by the trial. For example, after the gastrectomy walking is a very large part of recovery but in order to increase her ability to do so prior to the gastrectomy, Telia must undergo ankle surgery (Telia has osteochondritis, tarsal tunnel and arthritis in both ankles). These ankle surgeries would not be covered as part of the trial. Telia will be needing to go back and forth between Omaha, NE and Bethesda, MD multiple times throughout the trial. Each time she is not going for a procedure she will not be admitted into the hospital and would be required to get her own hotel and travel arrangements within Bethesda (car rental/Uber). In addition, any family member who travels with Telia would be responsible for their own arrangements each and every trip.
I am a stubborn man and asking for help is one of my greatest weaknesses but help is what I need. I need help to take time off of work to care for our kids while Telia is gone and help to take care of her right after she returns. I need help to be with her when I can. During the two weeks she is gone for surgery there is a small chance that I may be able to see her and be there for her while she is in the hospital but I need help. I need help to keep a roof over our heads and food on the table while out of work. Telia is unable to work and therefore I am the sole income for our family of four.
I know not everyone will be able to help financially but every dollar is one less dollar to worry about during this time of stress and need. Each dollar makes a difference as our family fights the truest form of evil in this world, cancer. From the bottom of our hearts Telia, Pamila, Zachary and I extend our deepest and most sincere thanks and appreciation for everything each and every one of you have done for us. Please continue to keep us in your thoughts and prayers as we fight alongside Telia as she fights this cancer and battles through the journey on the road to recovery.
With Love,
Kai
Donations
Co-organizers (2)
Kai Clemen
Organizer
Bellevue, NE
Telia Colbert
Co-organizer