Wayne's dead, let's get Todd. - Ben's Cancer Story
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Many of you following Ben's Cancer blog story, but just to recap, here's a summary (you can also read more details on his blog: https://benfightstodd.blogspot.com/):
In March of 2019, after several months of debilitating back pain, Ben had an MRI that showed a 5 cm tumor in his kidney and an 8 cm tumor in his spine. Later PET scans showed TWO separate, unrelated cancers: Un-staged renal cell carcinoma (kidney) (we named that cancer Wayne), and what was initially diagnosed as Stage IV classic Hodgkin's Lymphoma. Because lymphoma is more aggressive than kidney cancer and requires a much different regimen, treatment for the renal cancer was put on hold. Ben went through 6 rounds of aggressive ABVD chemotherapy, with only a partial response, and later discovered that he had been misdiagnosed. What had originally been the "good cancer to have" turned out to be a very rare, harder to treat, form of Non-Hodgkin's lymphoma: Diffuse Large B-Cell Non-Hodgkin's Lymphoma, Unclassified, or the simpler "Grey-Zone" Lymphoma (we named this jerk, Todd).
New PET scans showed that the cancer had spread to his lung, liver, bones, spleen and additional lymph nodes. Ben's oncologist decided the best chance Ben had for long-term survival would be a Stem Cell Transplant (what used to be called Bone Marrow Transplant). But first, the pesky renal cancer had to be dealt with, so in September, Ben had his right kidney removed. The surgery was tough, but successful, and Ben's team is confident that they got all the cancer! So he's now down to just one cancer!
After a brief period of recovery, Ben began salvage chemo to prepare for transplant. After two months of that chemo (with a week long hospital stay for complications), Ben was deemed well enough to move to transplant! He is scheduled to be admitted January 15th(ish) and will be inpatient for about a month. There he will receive very high doses of chemo to kill all his bone marrow, receive healthy new stem cells, and regrow his new immune system from scratch. Finally, after all that, he will have three weeks of daily radiation to kill any remaining cancer cells. Ben will be done with treatment almost a year to the day he was diagnosed.
Luckily Ben and Aimee have been blessed with good health insurance that have helped cover a lot of medical costs, but there are several other costs that are racking up that are unrelated to their health bills. Some of these include:
-- Custom port shirts needed for easy access to his port during his procedures and recovery.
-- Comfortable clothes for Ben to wear during the transplant
-- Gas money for Aimee as she travels back and forth from Salt Lake
-- Hotel money for the weekend so Evie can spend time with her dad (she won't be able see him at all during the weekdays because of school)
-- Meals while they are in Salt Lake (since the hospital only provides Ben's meals)
-- Professional deep cleaning of their house before Ben comes home because he will be very susceptible to mold, bacteria, and the nasty stuff in dust
-- Converting the master bedroom into a "clean/safe room" with new blinds, linens, hypoallergenic mattress covers, antibacterial paint, new carpet, etc.
-- High particulate filters for their water and furnace
-- Supplemental income since Ben is receiving a reduced salary while on short term disability
-- Plus, it is January and their deductible has reset, so any additional help with medical bills would be extremely appreciated!!
We are hoping to raise money to help offset some of the financial burden that these various expenses are creating. We know Ben and Aimee have a lot of people who care a lot about them. If you are able to donate to this fund, it is extremely appreciated. If you can't right now, we understand that too, but please continue to keep him in your thoughts and prayers, especially in these upcoming weeks with the transplant! Thank you for the love and generosity you have shown.
Sincerely,
Ben and Aimee's family
In March of 2019, after several months of debilitating back pain, Ben had an MRI that showed a 5 cm tumor in his kidney and an 8 cm tumor in his spine. Later PET scans showed TWO separate, unrelated cancers: Un-staged renal cell carcinoma (kidney) (we named that cancer Wayne), and what was initially diagnosed as Stage IV classic Hodgkin's Lymphoma. Because lymphoma is more aggressive than kidney cancer and requires a much different regimen, treatment for the renal cancer was put on hold. Ben went through 6 rounds of aggressive ABVD chemotherapy, with only a partial response, and later discovered that he had been misdiagnosed. What had originally been the "good cancer to have" turned out to be a very rare, harder to treat, form of Non-Hodgkin's lymphoma: Diffuse Large B-Cell Non-Hodgkin's Lymphoma, Unclassified, or the simpler "Grey-Zone" Lymphoma (we named this jerk, Todd).
New PET scans showed that the cancer had spread to his lung, liver, bones, spleen and additional lymph nodes. Ben's oncologist decided the best chance Ben had for long-term survival would be a Stem Cell Transplant (what used to be called Bone Marrow Transplant). But first, the pesky renal cancer had to be dealt with, so in September, Ben had his right kidney removed. The surgery was tough, but successful, and Ben's team is confident that they got all the cancer! So he's now down to just one cancer!
After a brief period of recovery, Ben began salvage chemo to prepare for transplant. After two months of that chemo (with a week long hospital stay for complications), Ben was deemed well enough to move to transplant! He is scheduled to be admitted January 15th(ish) and will be inpatient for about a month. There he will receive very high doses of chemo to kill all his bone marrow, receive healthy new stem cells, and regrow his new immune system from scratch. Finally, after all that, he will have three weeks of daily radiation to kill any remaining cancer cells. Ben will be done with treatment almost a year to the day he was diagnosed.
Luckily Ben and Aimee have been blessed with good health insurance that have helped cover a lot of medical costs, but there are several other costs that are racking up that are unrelated to their health bills. Some of these include:
-- Custom port shirts needed for easy access to his port during his procedures and recovery.
-- Comfortable clothes for Ben to wear during the transplant
-- Gas money for Aimee as she travels back and forth from Salt Lake
-- Hotel money for the weekend so Evie can spend time with her dad (she won't be able see him at all during the weekdays because of school)
-- Meals while they are in Salt Lake (since the hospital only provides Ben's meals)
-- Professional deep cleaning of their house before Ben comes home because he will be very susceptible to mold, bacteria, and the nasty stuff in dust
-- Converting the master bedroom into a "clean/safe room" with new blinds, linens, hypoallergenic mattress covers, antibacterial paint, new carpet, etc.
-- High particulate filters for their water and furnace
-- Supplemental income since Ben is receiving a reduced salary while on short term disability
-- Plus, it is January and their deductible has reset, so any additional help with medical bills would be extremely appreciated!!
We are hoping to raise money to help offset some of the financial burden that these various expenses are creating. We know Ben and Aimee have a lot of people who care a lot about them. If you are able to donate to this fund, it is extremely appreciated. If you can't right now, we understand that too, but please continue to keep him in your thoughts and prayers, especially in these upcoming weeks with the transplant! Thank you for the love and generosity you have shown.
Sincerely,
Ben and Aimee's family
Organizer and beneficiary
Lora Cooper Collins
Organizer
Provo, UT
Aimee Hopkin
Beneficiary