Emily's Bone Marrow Transplant-DBA
Donation protected
EMILY, AGE 19, HOPES FOR A BRIGHTER FUTURE AFTER HER BONE MARROW TRANSPLANT
Emily, our first grandchild is special. She celebrated her 19th birthday in June. Always curious, and smart, Emily gradually realized how her future would be impacted as she researched her illness: Diamond Blackfan Anemia (DBA). She was resolute in her decision to have a bone marrow transplant, assuring her family it was a good decision. Her physicians agreed it was time for a transplant. Emily knew the risks were greater with an unrelated stem cell transplant, but she felt ready. Watching her quietly, often privately, come to grips with her illness, deal with the side effects of treatments, and the emotional impact of living with DBA has been difficult to witness. Emily is part of the on-line DBA community; some of her on-line friends with DBA have died, often at a young age, and sometimes due to transplant complications.
Emily's transplant journey has been very difficult. Many are amazed that she is still alive. She was hospitalized for sixteen months, most of that time in Intensive Care. She was hospitalized at St Jude and Lebonheur Children's Hospital in Memphis for 11 months, and on May 31. 2016 transferred to Children's Hospital in St Louis, MO for pulmonary and cardiac rehabilitation. We had hoped she could transfer, when she is stable enough, to a pediatric rehab facility in St Louis for further rehab, and then return home. But after five additional months in the hospital at Children's Hospital in St Louis, Emily just wanted to go home. She got her wish on October 19th. She is still medically fragile, remains on a ventilator, with 2-4 hours a day on oxygen alone. While she is dependent on the ventilator, Emily will require on 24 hour care. Emily has been approved for 16 hours of nursing care a day, with her family providing the remaining eight hours of her care. She was able to continue her OT and PT at home. Those services have now ended.
Why Your Donations, Prayers and Support are Important
Emily was fortunate; she had her bone marrow transplant at St Jude Children's Research Hospital in Memphis on July 15, 2915. She entered St Jude on July 4th for a ten day regimen of four different chemo drugs prior to her transplant. Emily suffered all the normal, nasty side effects of the rigorous chemo and engraftment process. In addition, Emily has had several other, much more serious complications. Her first serious complication was a rare life-threating blood clot in the right atrium of her heart which required open heart surgery just 19 days post transplant. We had to wait two weeks for her to develop a minimal immune system. She was transfered to the local Memphis children's hospital, Lebonheur, for her heart surgery. After returning to St Jude's ICU, she had a brief episode of pneumonia, followed by a central line infection resulting in sepsis. It was necessary to intubate and sedated her, and place her on a ventilator. Following her bout with sepsis, she developed bilateral pneumonia, and then Acute Respiratory Distress Syndrome. She was again sedated and on a paralytic drug, and placed on a High Velocity Oscillating Ventilator. When that didn't work she was transferred again to LeBonheur Children's Hospital for placement on a potentially life saving device called ECMO, a machine that partially bypassed and supported her lungs, allowing them to rest and heal. Emily is the first BMT patient at St Jude to survive and return to St Jude after ECMO treatment.
Since Emily's return from heart surgery at LeBonheur, she spent many months in ICU both at St Jude and then at St Louis Children's hospital. She was finally transferred to a pulmonary unit but continued to need brief stays in ICU. Emily fought various viruses, bacterial and fungal infections, as well as graft vs host disease. She also needed gall bladder surgery to remove her gall bladder and passed a kidney stone. These complications, and the medicines used to treat them suppressed her bone marrow graft, leaving her with no immune system. Emily's first transplant graft failed due to all these complications.
Emily got a second boost of stem cells from her original donor and we are hopeful that this will lead to her recovery. No matter what the outcome of Emily's transplant journey, we will always be grateful to her donor for agreeing to donate cells twice. Her transplant journey has been frankly harrowing. One doctor told her, she is one tough kid. Emily fought hard to live and return home.
Already burdened financially before her transplant journey, Emily’s family faced many extra expenses that were not covered by insurance or St Jude. Initially, Emily and her mom were told to prepare to be in Memphis a minimum of six months for her unrelated stem cell transplant. Because of her need for open heart surgery and her many other complications she was hospitalized for sixteen months. Emily's dad and her younger sisters also wanted to visit Emily and her mom in Memphis and St Louis as often as possible. Dad tried to visit once a month, and thanks to his employer, when Emily's condition worsened.
Emily has come a long way since being bedridden for months; a long way since being strapped to a tilt board to gradually stand again. Emily worked hard, rarely complained, and she and her mom have been warriors together.
St Jude will monitor Emily for seven years. She will also receive monthly followup in St Louis. She now has a third medical team in Springfield, MO. Three separate medical teams! We estimated it will take her another 24 months or perhaps much longer to recover. This fundraising effort has helped and will continue to help Emily’s parents with the additional expenses they continue to face in the coming months; transportation two and from St Louis and Memphis, added living expenses, medical expenses, and to pay for the home alterations that were and still are needed to accommodate Emily for her recovery at home.
Who is Emily and How Diamond Blackfan Anemia has Impacted her Life?
Emily was nine months old when she was diagnosed with Diamond Blackfan Anemia (DBA) a very rare blood disorder, characterized by bone marrow failure. Emily’s bone marrow malfunctioned and failed to produce enough red blood cells, which carry oxygen to the body’s tissues. This failure causes DBA sufferers to become severely anemic. Her low hemoglobin levels and medical treatments cause her to suffer from extreme fatigue, headaches, body pain, trouble breathing, edema, irregular heartbeat, inability to concentrate, and frequent illness, including a bout with chemical meningitis. DBA also makes her more susceptible to blood and bone cancers.
To raise her hemoglobin level, Emily was on steroid medication for 13 years, which suppressed her immune system, and caused her to suffer from bone loss. When she became steroid resistant, she began blood transfusions every 2 to 3 weeks. She has had over 170 transfusions (1-3 units) and she suffered from iron overload, which can lead to organ failure. She was on iron chelation therapy for two years. Prior to transplant she was on both oral and infused medications; which meant she had a port and was infused through a needle in her chest 20 hours a day, five or six days a week. This aggressive chelation treatment was necessary to prepare her for the transplant. Emily very rarely felt good on her chelation medications. But the aggressive treatment paid off, and her ferritin levels dropped allowing her to get a transplant. When Emily was taken off these medications...we celebrated. In addition to being horribly expensive ($40,000+ per month), these medications caused her platelet and white blood cell counts to fall.
Despite her health, Emily continued to strive and dream. Her school districts provided accommodations since kindergarten. For the last 3 years Emily was home schooled with five hours a week of instruction from the Nixa school district, and she maintained excellent grades. If necessary, she worked 12 hours a day to complete her school work, despite her symptoms. Emily hopes to finish her last semester of high school and continue her education, Emily’s talents are already apparent; she wants to work someday using her interest in medicine, art and technology. Life has not been easy because Emily has been tethered to medical treatment, and she yearns for a little adventure in her life. She wants to travel and continue her education. In a bold move, Emily cut off her beautiful hair, and dyed it black and purple in preparation for her hair loss. She loved it. Emily is shy, smart, strong, rarely complains and she meets life’s challenges with grace and courage.
Emily is concerned about her family, and knows they have sacrificed for years to accommodate her illness. Emily’s mom, dad and two sisters are her biggest champions; but there has been an emotional and financial toll. Our family will be very grateful for your donation. We ask for your continuing prayers for Emily’s recovery, and your support for this family who has faced separation and uncertainty for months and now adjusts to their new normal at home. We, her grandparents, think Emily and her family are remarkable, and resilient.
Emily, our first grandchild is special. She celebrated her 19th birthday in June. Always curious, and smart, Emily gradually realized how her future would be impacted as she researched her illness: Diamond Blackfan Anemia (DBA). She was resolute in her decision to have a bone marrow transplant, assuring her family it was a good decision. Her physicians agreed it was time for a transplant. Emily knew the risks were greater with an unrelated stem cell transplant, but she felt ready. Watching her quietly, often privately, come to grips with her illness, deal with the side effects of treatments, and the emotional impact of living with DBA has been difficult to witness. Emily is part of the on-line DBA community; some of her on-line friends with DBA have died, often at a young age, and sometimes due to transplant complications.
Emily's transplant journey has been very difficult. Many are amazed that she is still alive. She was hospitalized for sixteen months, most of that time in Intensive Care. She was hospitalized at St Jude and Lebonheur Children's Hospital in Memphis for 11 months, and on May 31. 2016 transferred to Children's Hospital in St Louis, MO for pulmonary and cardiac rehabilitation. We had hoped she could transfer, when she is stable enough, to a pediatric rehab facility in St Louis for further rehab, and then return home. But after five additional months in the hospital at Children's Hospital in St Louis, Emily just wanted to go home. She got her wish on October 19th. She is still medically fragile, remains on a ventilator, with 2-4 hours a day on oxygen alone. While she is dependent on the ventilator, Emily will require on 24 hour care. Emily has been approved for 16 hours of nursing care a day, with her family providing the remaining eight hours of her care. She was able to continue her OT and PT at home. Those services have now ended.
Why Your Donations, Prayers and Support are Important
Emily was fortunate; she had her bone marrow transplant at St Jude Children's Research Hospital in Memphis on July 15, 2915. She entered St Jude on July 4th for a ten day regimen of four different chemo drugs prior to her transplant. Emily suffered all the normal, nasty side effects of the rigorous chemo and engraftment process. In addition, Emily has had several other, much more serious complications. Her first serious complication was a rare life-threating blood clot in the right atrium of her heart which required open heart surgery just 19 days post transplant. We had to wait two weeks for her to develop a minimal immune system. She was transfered to the local Memphis children's hospital, Lebonheur, for her heart surgery. After returning to St Jude's ICU, she had a brief episode of pneumonia, followed by a central line infection resulting in sepsis. It was necessary to intubate and sedated her, and place her on a ventilator. Following her bout with sepsis, she developed bilateral pneumonia, and then Acute Respiratory Distress Syndrome. She was again sedated and on a paralytic drug, and placed on a High Velocity Oscillating Ventilator. When that didn't work she was transferred again to LeBonheur Children's Hospital for placement on a potentially life saving device called ECMO, a machine that partially bypassed and supported her lungs, allowing them to rest and heal. Emily is the first BMT patient at St Jude to survive and return to St Jude after ECMO treatment.
Since Emily's return from heart surgery at LeBonheur, she spent many months in ICU both at St Jude and then at St Louis Children's hospital. She was finally transferred to a pulmonary unit but continued to need brief stays in ICU. Emily fought various viruses, bacterial and fungal infections, as well as graft vs host disease. She also needed gall bladder surgery to remove her gall bladder and passed a kidney stone. These complications, and the medicines used to treat them suppressed her bone marrow graft, leaving her with no immune system. Emily's first transplant graft failed due to all these complications.
Emily got a second boost of stem cells from her original donor and we are hopeful that this will lead to her recovery. No matter what the outcome of Emily's transplant journey, we will always be grateful to her donor for agreeing to donate cells twice. Her transplant journey has been frankly harrowing. One doctor told her, she is one tough kid. Emily fought hard to live and return home.
Already burdened financially before her transplant journey, Emily’s family faced many extra expenses that were not covered by insurance or St Jude. Initially, Emily and her mom were told to prepare to be in Memphis a minimum of six months for her unrelated stem cell transplant. Because of her need for open heart surgery and her many other complications she was hospitalized for sixteen months. Emily's dad and her younger sisters also wanted to visit Emily and her mom in Memphis and St Louis as often as possible. Dad tried to visit once a month, and thanks to his employer, when Emily's condition worsened.
Emily has come a long way since being bedridden for months; a long way since being strapped to a tilt board to gradually stand again. Emily worked hard, rarely complained, and she and her mom have been warriors together.
St Jude will monitor Emily for seven years. She will also receive monthly followup in St Louis. She now has a third medical team in Springfield, MO. Three separate medical teams! We estimated it will take her another 24 months or perhaps much longer to recover. This fundraising effort has helped and will continue to help Emily’s parents with the additional expenses they continue to face in the coming months; transportation two and from St Louis and Memphis, added living expenses, medical expenses, and to pay for the home alterations that were and still are needed to accommodate Emily for her recovery at home.
Who is Emily and How Diamond Blackfan Anemia has Impacted her Life?
Emily was nine months old when she was diagnosed with Diamond Blackfan Anemia (DBA) a very rare blood disorder, characterized by bone marrow failure. Emily’s bone marrow malfunctioned and failed to produce enough red blood cells, which carry oxygen to the body’s tissues. This failure causes DBA sufferers to become severely anemic. Her low hemoglobin levels and medical treatments cause her to suffer from extreme fatigue, headaches, body pain, trouble breathing, edema, irregular heartbeat, inability to concentrate, and frequent illness, including a bout with chemical meningitis. DBA also makes her more susceptible to blood and bone cancers.
To raise her hemoglobin level, Emily was on steroid medication for 13 years, which suppressed her immune system, and caused her to suffer from bone loss. When she became steroid resistant, she began blood transfusions every 2 to 3 weeks. She has had over 170 transfusions (1-3 units) and she suffered from iron overload, which can lead to organ failure. She was on iron chelation therapy for two years. Prior to transplant she was on both oral and infused medications; which meant she had a port and was infused through a needle in her chest 20 hours a day, five or six days a week. This aggressive chelation treatment was necessary to prepare her for the transplant. Emily very rarely felt good on her chelation medications. But the aggressive treatment paid off, and her ferritin levels dropped allowing her to get a transplant. When Emily was taken off these medications...we celebrated. In addition to being horribly expensive ($40,000+ per month), these medications caused her platelet and white blood cell counts to fall.
Despite her health, Emily continued to strive and dream. Her school districts provided accommodations since kindergarten. For the last 3 years Emily was home schooled with five hours a week of instruction from the Nixa school district, and she maintained excellent grades. If necessary, she worked 12 hours a day to complete her school work, despite her symptoms. Emily hopes to finish her last semester of high school and continue her education, Emily’s talents are already apparent; she wants to work someday using her interest in medicine, art and technology. Life has not been easy because Emily has been tethered to medical treatment, and she yearns for a little adventure in her life. She wants to travel and continue her education. In a bold move, Emily cut off her beautiful hair, and dyed it black and purple in preparation for her hair loss. She loved it. Emily is shy, smart, strong, rarely complains and she meets life’s challenges with grace and courage.
Emily is concerned about her family, and knows they have sacrificed for years to accommodate her illness. Emily’s mom, dad and two sisters are her biggest champions; but there has been an emotional and financial toll. Our family will be very grateful for your donation. We ask for your continuing prayers for Emily’s recovery, and your support for this family who has faced separation and uncertainty for months and now adjusts to their new normal at home. We, her grandparents, think Emily and her family are remarkable, and resilient.
Organizer
Barbara Jacobsen
Organizer
Nixa, MO
