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We need your help.
Our grandson, Parker, was diagnosed with Acute Lymphoblastic Leukemia (ALL), a fast-spreading and aggressive blood and bone marrow cancer, and Hemophagocytic Lympho Histiocytosis (HLH), a rare and usually fatal disease. Parker is unable to tolerate chemotherapy without severe side effects, and he needs access to a new immunotherapy drug called Blinatumomab. It is not covered by insurance.
Every year, 6,000 children in the United States are diagnosed with Acute Lymphoblastic Leukemia (ALL), a fast-spreading and aggressive blood and bone marrow cancer. Of those, six develop Hemophagocytic Lympho Histiocytosis (HLH), a rare and usually fatal condition in which the immune system damages tissues and organs. One of those children, one, or 0.017%, develops septic shock due to infection. This year, that child was Parker. In January, Parker was diagnosed with ALL and HLH.
Three weeks into Parker’s treatment, he developed a severe infection that led to sepsis and ultimately cardiac arrest, twice. Fortunately, CPR saved his life. But Parker’s chance of survival dipped to a mere 14%. Parker’s chemotherapy had to be discontinued to allow antibiotics to fight the infection.
Parker's risk of reoccurrence for both sepsis and HLH is extremely high. Parker’s best hope for survival is a new immunotherapy drug called Blinatumomab which is more than 98% effective in treating leukemia. Blinatumomab is a monoclonal antibody infusion that stimulates the body's immune system to fight cancer. Blinatumomab is more effective, less toxic and has less side effects than standard chemotherapy, which Parker is unable to tolerate without severe side effects. Parker was in a clinical trial for Blinatumomab, but because he missed a week of chemotherapy due to sepsis, he was dropped from the clinical trial. Blinatumomab is not covered by medical insurance and the only option to obtain this novel drug is to pay cash for the two doses that Parker needs at $178,000 per dose. His treatment will last at least two years.
In addition, medical insurance does not cover all of Parker’s medications or treatment. His medical team includes many specialists, some of whom are covered by insurance at only 50%. Parker’s parents are personally responsible for tens of thousands of dollars in medical bills. They are also caring for Parker and their two and half-year-old son, Harvey, who has a neurological disease and has special needs. Both children require 24-hour care. Neither parent can work for the foreseeable future.
Through all of this, Parker has remained incredibly brave. When he was told that there were "bad guys" inside his body hurting him, he covered his face and put his head in his lap for a few minutes. He then lifted his head, looked at his parents and said, "It's OK Mom and Dad, I'm not afraid of anything." That's our Parker.
We are asking for your help and support. Please consider making a financial donation to help Parker and his family. Every single dollar helps. We also ask that you donate blood to your local Red Cross. Parker, and all leukemia patients, will need blood transfusions and platelets throughout their treatment. Please share this post and keep Parker and his family in your thoughts and prayers. Thank you in advance for your support and your generosity.
Kristin & David Scott
Marne & Pete Weiler
Parker's Grandparents
Our grandson, Parker, was diagnosed with Acute Lymphoblastic Leukemia (ALL), a fast-spreading and aggressive blood and bone marrow cancer, and Hemophagocytic Lympho Histiocytosis (HLH), a rare and usually fatal disease. Parker is unable to tolerate chemotherapy without severe side effects, and he needs access to a new immunotherapy drug called Blinatumomab. It is not covered by insurance.
Every year, 6,000 children in the United States are diagnosed with Acute Lymphoblastic Leukemia (ALL), a fast-spreading and aggressive blood and bone marrow cancer. Of those, six develop Hemophagocytic Lympho Histiocytosis (HLH), a rare and usually fatal condition in which the immune system damages tissues and organs. One of those children, one, or 0.017%, develops septic shock due to infection. This year, that child was Parker. In January, Parker was diagnosed with ALL and HLH.
Three weeks into Parker’s treatment, he developed a severe infection that led to sepsis and ultimately cardiac arrest, twice. Fortunately, CPR saved his life. But Parker’s chance of survival dipped to a mere 14%. Parker’s chemotherapy had to be discontinued to allow antibiotics to fight the infection.
Parker's risk of reoccurrence for both sepsis and HLH is extremely high. Parker’s best hope for survival is a new immunotherapy drug called Blinatumomab which is more than 98% effective in treating leukemia. Blinatumomab is a monoclonal antibody infusion that stimulates the body's immune system to fight cancer. Blinatumomab is more effective, less toxic and has less side effects than standard chemotherapy, which Parker is unable to tolerate without severe side effects. Parker was in a clinical trial for Blinatumomab, but because he missed a week of chemotherapy due to sepsis, he was dropped from the clinical trial. Blinatumomab is not covered by medical insurance and the only option to obtain this novel drug is to pay cash for the two doses that Parker needs at $178,000 per dose. His treatment will last at least two years.
In addition, medical insurance does not cover all of Parker’s medications or treatment. His medical team includes many specialists, some of whom are covered by insurance at only 50%. Parker’s parents are personally responsible for tens of thousands of dollars in medical bills. They are also caring for Parker and their two and half-year-old son, Harvey, who has a neurological disease and has special needs. Both children require 24-hour care. Neither parent can work for the foreseeable future.
Through all of this, Parker has remained incredibly brave. When he was told that there were "bad guys" inside his body hurting him, he covered his face and put his head in his lap for a few minutes. He then lifted his head, looked at his parents and said, "It's OK Mom and Dad, I'm not afraid of anything." That's our Parker.
We are asking for your help and support. Please consider making a financial donation to help Parker and his family. Every single dollar helps. We also ask that you donate blood to your local Red Cross. Parker, and all leukemia patients, will need blood transfusions and platelets throughout their treatment. Please share this post and keep Parker and his family in your thoughts and prayers. Thank you in advance for your support and your generosity.
Kristin & David Scott
Marne & Pete Weiler
Parker's Grandparents
