Caring for Carissa

Caring for Carissa

From Mary Pottenburgh

My siblings and I are raising funds for our sister to help pay for medical costs related to her recent cancer diagnosis and treatment.

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Mary Pottenburgh posted a new update:
about 1 month ago

Update #5

Thank you for your patience as Carissa and Christine sought second opinions on treatment options. Your continued prayers and support have not gone unnoticed. Most recently, Carissa and Christine met with Mayo Clinic. Unfortunately, Mayo Clinic did not have any other treatment recommendations to offer other than the regularly recommended protocol for continued chemotherapy. This recommendation came even though cancer cells grew and spread exponentially while Carissa was receiving chemotherapy. In addition, Mayo does not have any clinical trials to offer at this time. An appointment was scheduled at Sloan Kettering but was later canceled on their part. A recent blood biopsy and additional genetic tumor testing were conducted to examine Carissa’s genetics. Those results came back showing two additional genetic markers that are causing cancer progression. To our dismay, they found no treatment plans. They did find three clinical trials in different states but all are Stage 1 trials. At this point, Stage 1 trials would not be in Carissa’s best interest.

That being said, our mother, Christine was made aware of a promising new drug FDA approved for compassionate use for some no-option cancer patients. So far, they have seen great success with this cancer drug. An out-of-state clinic is beginning to utilize the drug under compassionate use and right-to-try protocol. We do not know as of yet if she will qualify for its use but we are hopeful. The cost of the clinic is steep. Blood tests, which are the most extensive they have seen, can range from $8,000 to $16,000, and treatments can range anywhere from $40,000 to $120,000, higher or lower depending on the patient’s diagnosis, treatment required, and patient’s response. Carissa’s is a very rare cancer type. The costs involved with this clinic are entirely out-of-pocket. Carissa and Christine will be traveling to this clinic next week. We are asking once again for prayers and donations to make this possible.

Additionally, Carissa and Christine recently went to the Cathedral of St. Mary of the Immaculate Conception where the tomb of Venerable Archbishop Fulton J Sheen is located to ask for his intercession. So we continue to ask Our Lady and Venerable Archbishop Fulton J Sheen for their intercession in the upcoming weeks and months as Carissa and Christine pursue this clinical option. We will keep you updated in the weeks to come. Our whole family sincerely thanks each one of you for your support. May God bless you all and may He hold you in the palm of His hand and give you His peace.

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Mary Pottenburgh posted a new update:
3 months ago

Update #3

Thank you everyone for your prayers, support, and patience for an update on Carissa. There has been a lot going on and a lot for Carissa and my mom to process and discern the last few weeks. Carissa did not go through with the third round of chemotherapy. MRI scans done on May 6th before the third round was to start showed prior tumors growing while on the chemo and they were spreading in the retroperitoneal area. So the protocol she was on failed to help. So her current provider agreed that the third round should be halted while this was reviewed by their tumor board and another plan was discussed. Carissa’s cancer is a High-Grade Undifferentiated Spindle Cell Sarcoma, which is a recalcitrant (stubbornly resistant) cancer.

Where my sister is currently being treated the tumor board has taken surgery off the table meaning that my mom and sister are looking elsewhere for treatment options. Pathology reports have indicated that there are multiple genetic factors in addition to Li Fraumeni Syndrome that are making Carissa’s body resistant to chemotherapy. Therefore, further in-depth genetic testing is being recommended in order to pinpoint specific treatment options that will be effective with Carissa’s genetics. Memorial Sloan Kettering is one option currently being pursued as well as Mayo Clinic. In the meantime, Carissa is continuing with IV therapies at the naturopathic oncology clinic in the area.

The sharing of this Fundly page and the donations received have been invaluable to my sister and mom. This page has provided my mom and sister with connections to knowledgeable doctors in various parts of the country who are trying to help. These connections may not have happened otherwise. We cannot express our gratitude enough for every share and donation. We thank you all and continue to ask for your prayers and support for Carissa.

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Mary Pottenburgh posted a new update:
4 months ago

Update #2

Thank you everyone for your prayers and support for Carissa and our family. We are grateful and humbled by your generosity.

Carissa has completed her second round of chemotherapy. The second five-day round of chemotherapy started the day after Easter. Unfortunately, this second round brought more nausea and fatigue for Carissa. Chemotherapy has attacked her hemoglobin and caused anemia, which adds to the fatigue and makes completing simple daily tasks difficult. However, her attitude is amazing! Our mother, Christine has been focused on helping Carissa stay nourished while maintaining numerous weekly doctor appointments, lab visits, follow-up tests, scans, and IV therapy.

On a different note, Carissa will be graduating from college this Thursday! She has worked tirelessly on her school work despite treatment and its effects on her. We are so very proud of her and can’t wait for her to walk across that stage to receive her diploma!

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