Amanda Battles Rare Blood Cancer
Donation protected
Amanda has a rare cancer called Myelofibrosis
Amanda is a young and courageous single mother of 4 children who was blind-sided at the end of 2014 with the news that she is suffering from a rare cancer called myelofibrosis. This is a very rare form of bone marrow cancer that usually strikes people over age 60. It took doctors a long time to diagnose Amanda because she is not even 40 years old. This cancer strikes about 118,000 people a year in and the life expectancy is about 6 years. Doctors estimate that Amanda already had this for 2-3 years before feeling the symptoms.
A Bone Marrow Match is needed for Amanda. Please join "Be The Match" at www.bethematch.org
The only possible cure for this form of cancer is an allogeneic stem cell transplant. This will require finding a stranger in the bone marrow registry that matches her genetically as closely as possible and then hoping that her body accepts the stem cells and that they wipe out the cancer.
Her medical team has searched across the world to find a match, but have found no one who matches her. When Amanda was still feeling well enough, she organized many bone marrow donor events for Be The Match, not only to try and find her own match, but always generous of spirit, she wanted to raise awareness of the need and try to save the lives of others as well. She is still committed to this cause.
How Does Myelofibrosis make Amanda Feel?
The disease causes Amanda to be in an extreme amount of pain constantly. She is badly anemic, requiring frequent blood transfusions. The cancer has also caused her spleen to become very enlarged which presses on other organs including her stomach. She is unable to eat properly and cannot keep weight on and is, in fact, losing weight at an alarming rate. Even though she tries hard to eat, sometimes it is difficult to keep a sip of water down. She has very high fevers and extreme thirst. Sleep has become elusive due to the pain and emotional trauma.
The physical pain is far outweighed by the emotional pain she is suffering through, worrying about her 4 children and how they are coping with her illness, how to give them her attention when she often doesn't feel like rising from bed, and how to assure them and allay their fears when she doesn't know how to allay her own.
Amanda's Children
These children are Amanda's world:
Her oldest Ethan (18) just graduated from high school where he was an honor roll student, and a computer whiz.
Kristoph (13), born 2 months early with Down syndrome and a congenital heart defect that required open-heart surgery. He is her little fighter, a star swimmer in Special Olympics, the class clown, and gives the best hugs ever.
Grayson (12), her little smarty pants in the gifted magnet middle school for technology, loves to bury his nose in a book, and can kick her butt in chess.
Then there is the princess Natalie Grace (9), constantly twirling and planting hand stands all over the house, sassy and smart, loves anything that sparkles and there can never be too much pink.
Amanda was providing a good life for her kids, largely on her own, before being stricken with cancer. She put herself through nursing school and was working full time at a hospital as an RN. She loved caring for others and was just hitting her stride when she began to have physical issues. At first, she decided she was just overly tired from the heavy demands at home and work. But when Amanda could not hold her head up at work to chart for her patients, alarm bells went off with her supervisor, who encouraged her to have some medical testing done. She became very ill and was hospitalized at the time the diagnosis was discovered. In chronic pain, tired, and generally extremely ill, Amanda had to leave the job she so loved. With no income, she and her children had to leave their own home, and move in with her parents. She is grateful for the love of her family- putting a roof over her childrens' heads and helping to care for their needs and her own, but losing everything, your job, your financial security, your home, and your place as head of your childrens' lives is very difficult to swallow on top of such a dire diagnosis and constant physical pain.
Amanda Awaits Assistance from Social Security Disability
Amanda was a stay-at-home mother for many years before life's direction changed, leaving her a single parent. She decided to put herself though nursing school. She has been working full time as an RN at a hospital for a few years. She applied for Social Security Disability early this year, as quickly as she could after getting out of the hospital, but due to her short work history she was denied employment-based disability to cover her medical and personal bills, as you might expect. In fact, SHE STILL HAS NOT RECEIVED ANY ASSISTANCE. Her disability file was in the hands of the state for some time before she was told she would not qualify for work-based disability and her case would be referred to the needs-based offices for review which could take 6 more months. It has been months since she originally filed and, still, no one has approved her for assistance. It is making things much worse to deal with this frustration.
In the meantime, she has medical bill collectors calling constantly throughout the day and is in danger of losing her vehicle, car inurance, and all she owns in storage, because she is unable to work and pay the bills. Her parents help, but just feeding the family and paying household bills is all they can handle. Losing her car would be disastrous because she still takes her kids to school when she is able and it allows Amanda to retain some of her feeling of independence. Her medical bills have topped $35,000 so far.
Amanda, her children and loved ones need your help in Two Ways
1) As Amanda, her friends, family, and total strangers continue to hope and pray for a miracle donor to possibly save her life, her health has been on a steady decline. That does not mean that hope is lost. It is not. We still believe there is a donor in the world who will match Amanda. .
SO PLEASE consider becoming a bone marrow donor today and save her life or the life of another!!
Go to www.bethematch.org !!
2) Amanda could rest easier and use her daily energy to focus on her children instead of financial problems if we could raise enough money to catch up her bills and get the bill collector's off her back.
Some of the items your donations would help fund are:
Health insurance premiums
Deductibles/Co-Pays
Prescription Drugs
Gas/Parking/Incidentals at the Hospital
Daily Living Expenses
Extra Childcare
Clothing and other necessities for the kids
Bills such as car payment, car insurance, cell phone, storage unit, etc…
Please help her have some peace of mind!!!. Please hold them in your prayers as well. And Be The Match!!
Amanda shared, “I am extraordinarily impressed by the kindness of others and love that is surrounding my family and me during this time. It renews my belief in the goodness of humanity.”
Amanda is a young and courageous single mother of 4 children who was blind-sided at the end of 2014 with the news that she is suffering from a rare cancer called myelofibrosis. This is a very rare form of bone marrow cancer that usually strikes people over age 60. It took doctors a long time to diagnose Amanda because she is not even 40 years old. This cancer strikes about 118,000 people a year in and the life expectancy is about 6 years. Doctors estimate that Amanda already had this for 2-3 years before feeling the symptoms.
A Bone Marrow Match is needed for Amanda. Please join "Be The Match" at www.bethematch.org
The only possible cure for this form of cancer is an allogeneic stem cell transplant. This will require finding a stranger in the bone marrow registry that matches her genetically as closely as possible and then hoping that her body accepts the stem cells and that they wipe out the cancer.
Her medical team has searched across the world to find a match, but have found no one who matches her. When Amanda was still feeling well enough, she organized many bone marrow donor events for Be The Match, not only to try and find her own match, but always generous of spirit, she wanted to raise awareness of the need and try to save the lives of others as well. She is still committed to this cause.
How Does Myelofibrosis make Amanda Feel?
The disease causes Amanda to be in an extreme amount of pain constantly. She is badly anemic, requiring frequent blood transfusions. The cancer has also caused her spleen to become very enlarged which presses on other organs including her stomach. She is unable to eat properly and cannot keep weight on and is, in fact, losing weight at an alarming rate. Even though she tries hard to eat, sometimes it is difficult to keep a sip of water down. She has very high fevers and extreme thirst. Sleep has become elusive due to the pain and emotional trauma.
The physical pain is far outweighed by the emotional pain she is suffering through, worrying about her 4 children and how they are coping with her illness, how to give them her attention when she often doesn't feel like rising from bed, and how to assure them and allay their fears when she doesn't know how to allay her own.
Amanda's Children
These children are Amanda's world:
Her oldest Ethan (18) just graduated from high school where he was an honor roll student, and a computer whiz.
Kristoph (13), born 2 months early with Down syndrome and a congenital heart defect that required open-heart surgery. He is her little fighter, a star swimmer in Special Olympics, the class clown, and gives the best hugs ever.
Grayson (12), her little smarty pants in the gifted magnet middle school for technology, loves to bury his nose in a book, and can kick her butt in chess.
Then there is the princess Natalie Grace (9), constantly twirling and planting hand stands all over the house, sassy and smart, loves anything that sparkles and there can never be too much pink.
Amanda was providing a good life for her kids, largely on her own, before being stricken with cancer. She put herself through nursing school and was working full time at a hospital as an RN. She loved caring for others and was just hitting her stride when she began to have physical issues. At first, she decided she was just overly tired from the heavy demands at home and work. But when Amanda could not hold her head up at work to chart for her patients, alarm bells went off with her supervisor, who encouraged her to have some medical testing done. She became very ill and was hospitalized at the time the diagnosis was discovered. In chronic pain, tired, and generally extremely ill, Amanda had to leave the job she so loved. With no income, she and her children had to leave their own home, and move in with her parents. She is grateful for the love of her family- putting a roof over her childrens' heads and helping to care for their needs and her own, but losing everything, your job, your financial security, your home, and your place as head of your childrens' lives is very difficult to swallow on top of such a dire diagnosis and constant physical pain.
Amanda Awaits Assistance from Social Security Disability
Amanda was a stay-at-home mother for many years before life's direction changed, leaving her a single parent. She decided to put herself though nursing school. She has been working full time as an RN at a hospital for a few years. She applied for Social Security Disability early this year, as quickly as she could after getting out of the hospital, but due to her short work history she was denied employment-based disability to cover her medical and personal bills, as you might expect. In fact, SHE STILL HAS NOT RECEIVED ANY ASSISTANCE. Her disability file was in the hands of the state for some time before she was told she would not qualify for work-based disability and her case would be referred to the needs-based offices for review which could take 6 more months. It has been months since she originally filed and, still, no one has approved her for assistance. It is making things much worse to deal with this frustration.
In the meantime, she has medical bill collectors calling constantly throughout the day and is in danger of losing her vehicle, car inurance, and all she owns in storage, because she is unable to work and pay the bills. Her parents help, but just feeding the family and paying household bills is all they can handle. Losing her car would be disastrous because she still takes her kids to school when she is able and it allows Amanda to retain some of her feeling of independence. Her medical bills have topped $35,000 so far.
Amanda, her children and loved ones need your help in Two Ways
1) As Amanda, her friends, family, and total strangers continue to hope and pray for a miracle donor to possibly save her life, her health has been on a steady decline. That does not mean that hope is lost. It is not. We still believe there is a donor in the world who will match Amanda. .
SO PLEASE consider becoming a bone marrow donor today and save her life or the life of another!!
Go to www.bethematch.org !!
2) Amanda could rest easier and use her daily energy to focus on her children instead of financial problems if we could raise enough money to catch up her bills and get the bill collector's off her back.
Some of the items your donations would help fund are:
Health insurance premiums
Deductibles/Co-Pays
Prescription Drugs
Gas/Parking/Incidentals at the Hospital
Daily Living Expenses
Extra Childcare
Clothing and other necessities for the kids
Bills such as car payment, car insurance, cell phone, storage unit, etc…
Please help her have some peace of mind!!!. Please hold them in your prayers as well. And Be The Match!!
Amanda shared, “I am extraordinarily impressed by the kindness of others and love that is surrounding my family and me during this time. It renews my belief in the goodness of humanity.”
Organizer and beneficiary
Amanda Paffe
Organizer
Jacksonville, FL
Elaine Mosley
Beneficiary
