Cancer treatment, transportation, housing HELP!
Donation protected
Humbly, respectfully and with the utmost gratitude, I pray you will help my daughter, Erin, and myself so that I am able to continue to help Erin in the form of advocacy with doctors, insurance providers (appealing denials ), transportation providers, scientists and academics conducting clinical trials, legal services, social service providers and wish-granting agencies and ultimately in a care-taking comfort provider role.
I will share details of sweet Erin's most courageous, hopeful, and positive attitude story -- her rare and aggressive cancer below (which we do hope you will take the time to read through completely), but thought I should outline first what it is exactly we're asking this financial help for. Any funds donated will be used to investigate, obtain transportation to, and pay for any clinical trial or other uncovered treatment Erin may be a candidate for that her insurance (a Medicaid managed HMO) will not pay for, to help a very little bit cover my loss of income resulting from doing all of that research and advocacy, and hopefully with getting into better housing, and some medical personal care needs and healthier food items for Erin.
Erin's insurance approved our visit to Herbert Irving Comprehensive Care Center to discuss a clinical trial. This, like the aggressive chemos Erin has received, is a double-agent (two different medicines) combined treatment; only one of them is paid for by the researcher, the other agent as well as any testing, scans, labs, etcetera must be approved for and paid by insurance, and we are praying hers will but not guaranteed and may require more than one appeal if they deny. We also have an appointment at Dana Farber Cancer Institute on Thursday to discuss another clinical trial. As of this moment, transportation has been denied and her oncologist's office has told us they believe insurance for the visit itself will be denied because Dana Farber is not in her network of providers.
Erin's housing situation is very difficult for her (and frankly, me, too ) and getting more and more so for her as she is now suffering from edema from all the chemo and climbing the very steep and long set of stairs to her apartment is exhausting and painful for her. If I don't soon find some temporary housing while I'm here, I am going to be forced to leave, to return home to South Carolina and will be unable to advocate for Erin as I do and accompany her to trials. While the subject matter content of the types of proceedings I transcribe and my prior experience as a legal assistant and secretary at St. Peter's Hospice have given me the self-education and ability to communicate with doctors, lawyers, insurance agencies, etc., etc., it is barely a livable wage under normal circumstances and greatly decreased with the hours I spend in this advocate role, (which is my gift and contribution to helping Erin.) I literally had to borrow money at an exorbitant interest rate to buy a laptop computer to be able to work remotely while here with Erin. (And many know that the car my fiancé borrowed to purchase me broke down irreparably upon my arrival here and he was forced to borrow even more to purchase a replacement for me so I would have some means of transportation to get around here and to get me home.) Erin's place is tiny and "untenable" describes it well. We may use a portion of any donations as security deposit for more suitable housing; hopefully one on a first-floor or elevator for Erin, one with laundry facilities. No, there is no Section 8 or Public Housing available right now… Most lists are closed and have years-long waiting lists.
If Erin ends up enrolling in the trial in NYC, it will require going to New York once every three weeks and it is highly unlikely that her insurance, which is a Medicaid managed plan) will pay for that type of transportation routinely. Most likely, it will be train or bus (God willing, the trial works and she remains healthy enough to do that!!) Erin's significant other is truly working-class poor as am I; we all are and because of my work-from-home self-employment, I may be the only one able to accompany Erin to these NYC or Boston trials.
Erin could really use some more pairs of compression stockings she now needs for the edema she is suffering. Insurance only paid for one pair and out of pocket, the cost is $80.00 per pair. We have been looking on eBay but here we are on GoFundMe so things are very very tight to say the least. And imagine having only one pair of stockings you are required to wear every day, all day!
Erin does get FoodStamps but everyone knows how long those last and the unhealthy foods that are the cheapest folks end up consuming. She should be on a good anti-cancer, alkalizing diet and it is so difficult and disheartening when you go to the grocery store sick to stomach with anxiety for not having the money to eat properly when it can help save your daughter's life. So, hey, if any funds are left after all of the above, maybe we'll eat a little better! And now on to the disease story…
In August of 2018, my now 39-year-old daughter was diagnosed with leiomyosarcoma, a rare and very aggressive sarcoma occurring in only 6 in 1,000,000 women a year in the U.S. (https://rarediseases.info.nih.gov/diseases/6880/leiomyosarcoma ). It is an unpredictable, incurable with no one-stop treatment -- what works for one does not for another. Surgical removal is the best option for longest term survival, but Erin's largest mass is inoperable and, therefore, "they" will not perform surgery to remove anything.
Erin has now gone through two very aggressive double-agent chemotherapy treatments; one of the first can only be had 8 times in a lifetime due to its toxicity to the heart; after 5 cycles of her second-line aggressive double-agent chemo treatment and CT scans on August 9th, those scans showed significant progression. The items in "quotations" are excerpts from 8/9 scan. There are additional small masses now showing on the abdomen. The largest has now grown from 15 to 20 cms. "Enlarged periportal lymph nodes, now measuring up to 2.6 x 2.2 cm (#36, series 17), increased in size compared to prior exam. PERITONEUM-M ESENTERY: Peritoneal masses and nodules are again seen, which are increased in size compared to prior exam, see below for reference lesions. There is new peritoneal nodularity and stranding along the left pericolic gutter. (#53, series 17). Small volume free fluid in the pelvis, new. Large lobulated pelvic/lower abdominal mass (#94 17) 08/09/2019: 19.7 x 13.4 cm." There is a new "spot" on the tail of her pancreas as follows: "There is increased prominence of the pancreatic tail with possible but marginated pancreatic tail mass measuring 3.3 x 2.9 cm"; paratracheal and lung nodules: "LUNGS Persistent but decreased tiny tree-in-bud nodules in the right upper lobe and left lower lobe."
Erin remains the ever light-hearted, kind, sweet, patient, loving soul she has always been. She has suffered many losses and crises in her young life. I and all of her family, friends and many in the cancer world are so very proud and humbled by how she now faces this with such courage, positivity, hope and strength!! In light of the aggressiveness of this disease, the extreme toxicity of the two double-agent chemo treatments Erin has undergone so far, that she is doing as well as she is already makes her a miracle and she believes she will get the miracle of finding a next treatment, the right groundbreaking clinical trial.
But everybody knows how we will have to fight to get the best or get anything in some cases, while trying stay afloat and surviving every day. Everyone knows the amount of physical and mental energy all of the above requires, the anxiety-inducing stress this is and will continue to be, so I hope everyone knows how greatly needed, comforting, and deeply appreciated any little assistance you can provide will be, even if it's sharing this campaign with any friends or others who are in a position to assist. Cliché it is, but truly, from the bottom of our hearts, we love and thank you all! May God Bless and Watch Over You and Yours.
I will share details of sweet Erin's most courageous, hopeful, and positive attitude story -- her rare and aggressive cancer below (which we do hope you will take the time to read through completely), but thought I should outline first what it is exactly we're asking this financial help for. Any funds donated will be used to investigate, obtain transportation to, and pay for any clinical trial or other uncovered treatment Erin may be a candidate for that her insurance (a Medicaid managed HMO) will not pay for, to help a very little bit cover my loss of income resulting from doing all of that research and advocacy, and hopefully with getting into better housing, and some medical personal care needs and healthier food items for Erin.
Erin's insurance approved our visit to Herbert Irving Comprehensive Care Center to discuss a clinical trial. This, like the aggressive chemos Erin has received, is a double-agent (two different medicines) combined treatment; only one of them is paid for by the researcher, the other agent as well as any testing, scans, labs, etcetera must be approved for and paid by insurance, and we are praying hers will but not guaranteed and may require more than one appeal if they deny. We also have an appointment at Dana Farber Cancer Institute on Thursday to discuss another clinical trial. As of this moment, transportation has been denied and her oncologist's office has told us they believe insurance for the visit itself will be denied because Dana Farber is not in her network of providers.
Erin's housing situation is very difficult for her (and frankly, me, too ) and getting more and more so for her as she is now suffering from edema from all the chemo and climbing the very steep and long set of stairs to her apartment is exhausting and painful for her. If I don't soon find some temporary housing while I'm here, I am going to be forced to leave, to return home to South Carolina and will be unable to advocate for Erin as I do and accompany her to trials. While the subject matter content of the types of proceedings I transcribe and my prior experience as a legal assistant and secretary at St. Peter's Hospice have given me the self-education and ability to communicate with doctors, lawyers, insurance agencies, etc., etc., it is barely a livable wage under normal circumstances and greatly decreased with the hours I spend in this advocate role, (which is my gift and contribution to helping Erin.) I literally had to borrow money at an exorbitant interest rate to buy a laptop computer to be able to work remotely while here with Erin. (And many know that the car my fiancé borrowed to purchase me broke down irreparably upon my arrival here and he was forced to borrow even more to purchase a replacement for me so I would have some means of transportation to get around here and to get me home.) Erin's place is tiny and "untenable" describes it well. We may use a portion of any donations as security deposit for more suitable housing; hopefully one on a first-floor or elevator for Erin, one with laundry facilities. No, there is no Section 8 or Public Housing available right now… Most lists are closed and have years-long waiting lists.
If Erin ends up enrolling in the trial in NYC, it will require going to New York once every three weeks and it is highly unlikely that her insurance, which is a Medicaid managed plan) will pay for that type of transportation routinely. Most likely, it will be train or bus (God willing, the trial works and she remains healthy enough to do that!!) Erin's significant other is truly working-class poor as am I; we all are and because of my work-from-home self-employment, I may be the only one able to accompany Erin to these NYC or Boston trials.
Erin could really use some more pairs of compression stockings she now needs for the edema she is suffering. Insurance only paid for one pair and out of pocket, the cost is $80.00 per pair. We have been looking on eBay but here we are on GoFundMe so things are very very tight to say the least. And imagine having only one pair of stockings you are required to wear every day, all day!
Erin does get FoodStamps but everyone knows how long those last and the unhealthy foods that are the cheapest folks end up consuming. She should be on a good anti-cancer, alkalizing diet and it is so difficult and disheartening when you go to the grocery store sick to stomach with anxiety for not having the money to eat properly when it can help save your daughter's life. So, hey, if any funds are left after all of the above, maybe we'll eat a little better! And now on to the disease story…
In August of 2018, my now 39-year-old daughter was diagnosed with leiomyosarcoma, a rare and very aggressive sarcoma occurring in only 6 in 1,000,000 women a year in the U.S. (https://rarediseases.info.nih.gov/diseases/6880/leiomyosarcoma ). It is an unpredictable, incurable with no one-stop treatment -- what works for one does not for another. Surgical removal is the best option for longest term survival, but Erin's largest mass is inoperable and, therefore, "they" will not perform surgery to remove anything.
Erin has now gone through two very aggressive double-agent chemotherapy treatments; one of the first can only be had 8 times in a lifetime due to its toxicity to the heart; after 5 cycles of her second-line aggressive double-agent chemo treatment and CT scans on August 9th, those scans showed significant progression. The items in "quotations" are excerpts from 8/9 scan. There are additional small masses now showing on the abdomen. The largest has now grown from 15 to 20 cms. "Enlarged periportal lymph nodes, now measuring up to 2.6 x 2.2 cm (#36, series 17), increased in size compared to prior exam. PERITONEUM-M ESENTERY: Peritoneal masses and nodules are again seen, which are increased in size compared to prior exam, see below for reference lesions. There is new peritoneal nodularity and stranding along the left pericolic gutter. (#53, series 17). Small volume free fluid in the pelvis, new. Large lobulated pelvic/lower abdominal mass (#94 17) 08/09/2019: 19.7 x 13.4 cm." There is a new "spot" on the tail of her pancreas as follows: "There is increased prominence of the pancreatic tail with possible but marginated pancreatic tail mass measuring 3.3 x 2.9 cm"; paratracheal and lung nodules: "LUNGS Persistent but decreased tiny tree-in-bud nodules in the right upper lobe and left lower lobe."
Erin remains the ever light-hearted, kind, sweet, patient, loving soul she has always been. She has suffered many losses and crises in her young life. I and all of her family, friends and many in the cancer world are so very proud and humbled by how she now faces this with such courage, positivity, hope and strength!! In light of the aggressiveness of this disease, the extreme toxicity of the two double-agent chemo treatments Erin has undergone so far, that she is doing as well as she is already makes her a miracle and she believes she will get the miracle of finding a next treatment, the right groundbreaking clinical trial.
But everybody knows how we will have to fight to get the best or get anything in some cases, while trying stay afloat and surviving every day. Everyone knows the amount of physical and mental energy all of the above requires, the anxiety-inducing stress this is and will continue to be, so I hope everyone knows how greatly needed, comforting, and deeply appreciated any little assistance you can provide will be, even if it's sharing this campaign with any friends or others who are in a position to assist. Cliché it is, but truly, from the bottom of our hearts, we love and thank you all! May God Bless and Watch Over You and Yours.
Organizer
Lucy Pearl
Organizer
Conway, SC