The cost of surviving cancer is her liver...
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The cost of surviving cancer is her liver…
This is my 22-year-old daughter Skye , pictured at 18 & 2 ½ years old. In April 2019 we found out that she is in the beginning stages of liver failure. She was advised by her Internist that she needs to be on the liver transplant list. We had our first meeting with the Cleveland Clinic at the beginning of May to assess her liver damage and begin the testing required to have Skye added to the transplant list.
How did we get here?
In September 1999, Skye was diagnosed with Acute Lymphoblastic Leukemia (ALL) at the age of 2 ½. After a summer of doctor visits and antibiotics for fevers, ear infections, flu symptoms and low energy we finally demanded blood work be done to look for a root cause of the multitude of illnesses she had the past several months.
When the results came in I was at the office with Skye and my other daughter (age 5). The doctor looked at me and asked, "do you know where Rainbow Babies and Children’s Hospital is?" I said no. He said that I needed to get her there right away and there wasn't enough time to call for an ambulance. My father-in-law picked us up and took us to the hospital. By the time my husband arrived they had already begun blood transfusions. Skye was admitted on a Saturday and had 7 transfusions by Monday with a diagnosis of either Mono or ALL. First thing Monday morning they did a bone marrow biopsy and determined she had leukemia. We were told that chemotherapy had to start that day.
The next thing we knew there was a group of Research Coordinators in our room asking if we were willing to put Skye in a research study. They talked with us for about an hour and left a ton of papers with us to review but they needed an answer the same day. Already feeling overwhelmed and trying to digest the news that our 2 ½ year old daughter had cancer, and that we'd almost lost her over the weekend we were faced with a decision that had to be made prior to beginning the chemotherapy that would ultimately save her life.
We entered Skye into the research study and she was randomly selected for trial B. We did not know at the time what the difference was between the two regimens being assessed in the study; all we knew was for her age and gender she would be on chemotherapy for 2 years. We would find out the impact of our decision about a year later.
In November 2000, Skye was pulled from the chemotherapy regimen she was on due to a drug in the trial called 6-MP (6-Mercaptopurine). The studies showed that a percentage of kids in the trial were in liver failure or had toxic liver disease due to the dosage of this drug used in the study. Skye had a liver biopsy and imaging test which concluded she had toxic liver disease.
Through the years Skye continued to develop additional complications due to her liver. She had portal hypertension, varices of the esophagus and stomach, an arteriovenous fistula causing reverse blood flow between her portal vein and artery as well as suppressed blood level counts. Regular imaging, endoscopies, liver biopsies, blood draws, and varices banding took place over the years to monitor and manage issues developed due to her toxic liver disease.
When Skye turned 18 she underwent a risky surgery to have her spleen removed. By this time her spleen was almost 3 times the average size. Removing the spleen immediately raised her blood level counts, however it started a new series of problems and the next day she needed emergency surgery to remove her gallbladder. Skye developed 3 large blood clots and a clotting disorder that will require daily medication for the rest of her life. She requires weekly blood draws and medication adjustments to maintain her clotting factor at a therapeutic level. She also developed conversion disorder during this timeframe which causes pseudo-seizures, loss of limb function and the ability to speak. Fortunately, this is not a continuous condition and only manifests when her mind or body are under severe stress.
Would we do the research study again? Absolutely! Without others before us participating in these types of studies the ALL survival rate would not have been at 85% when Skye was diagnosed. That number is up to 90% today.
Back to my original statement that the cost of surviving cancer is her liver. Skye has been cancer free for 19 years but now she needs a liver transplant due to the chemotherapy that saved her life.
This Go Fund me account will be used to assist with medical costs and cover Skye’s living expenses when she is unable to work after surgery. Any amount will help during the difficult road Skye has ahead of her.
Thank you all for your support! Please share this link!
This is my 22-year-old daughter Skye , pictured at 18 & 2 ½ years old. In April 2019 we found out that she is in the beginning stages of liver failure. She was advised by her Internist that she needs to be on the liver transplant list. We had our first meeting with the Cleveland Clinic at the beginning of May to assess her liver damage and begin the testing required to have Skye added to the transplant list.
How did we get here?
In September 1999, Skye was diagnosed with Acute Lymphoblastic Leukemia (ALL) at the age of 2 ½. After a summer of doctor visits and antibiotics for fevers, ear infections, flu symptoms and low energy we finally demanded blood work be done to look for a root cause of the multitude of illnesses she had the past several months.
When the results came in I was at the office with Skye and my other daughter (age 5). The doctor looked at me and asked, "do you know where Rainbow Babies and Children’s Hospital is?" I said no. He said that I needed to get her there right away and there wasn't enough time to call for an ambulance. My father-in-law picked us up and took us to the hospital. By the time my husband arrived they had already begun blood transfusions. Skye was admitted on a Saturday and had 7 transfusions by Monday with a diagnosis of either Mono or ALL. First thing Monday morning they did a bone marrow biopsy and determined she had leukemia. We were told that chemotherapy had to start that day.
The next thing we knew there was a group of Research Coordinators in our room asking if we were willing to put Skye in a research study. They talked with us for about an hour and left a ton of papers with us to review but they needed an answer the same day. Already feeling overwhelmed and trying to digest the news that our 2 ½ year old daughter had cancer, and that we'd almost lost her over the weekend we were faced with a decision that had to be made prior to beginning the chemotherapy that would ultimately save her life.
We entered Skye into the research study and she was randomly selected for trial B. We did not know at the time what the difference was between the two regimens being assessed in the study; all we knew was for her age and gender she would be on chemotherapy for 2 years. We would find out the impact of our decision about a year later.
In November 2000, Skye was pulled from the chemotherapy regimen she was on due to a drug in the trial called 6-MP (6-Mercaptopurine). The studies showed that a percentage of kids in the trial were in liver failure or had toxic liver disease due to the dosage of this drug used in the study. Skye had a liver biopsy and imaging test which concluded she had toxic liver disease.
Through the years Skye continued to develop additional complications due to her liver. She had portal hypertension, varices of the esophagus and stomach, an arteriovenous fistula causing reverse blood flow between her portal vein and artery as well as suppressed blood level counts. Regular imaging, endoscopies, liver biopsies, blood draws, and varices banding took place over the years to monitor and manage issues developed due to her toxic liver disease.
When Skye turned 18 she underwent a risky surgery to have her spleen removed. By this time her spleen was almost 3 times the average size. Removing the spleen immediately raised her blood level counts, however it started a new series of problems and the next day she needed emergency surgery to remove her gallbladder. Skye developed 3 large blood clots and a clotting disorder that will require daily medication for the rest of her life. She requires weekly blood draws and medication adjustments to maintain her clotting factor at a therapeutic level. She also developed conversion disorder during this timeframe which causes pseudo-seizures, loss of limb function and the ability to speak. Fortunately, this is not a continuous condition and only manifests when her mind or body are under severe stress.
Would we do the research study again? Absolutely! Without others before us participating in these types of studies the ALL survival rate would not have been at 85% when Skye was diagnosed. That number is up to 90% today.
Back to my original statement that the cost of surviving cancer is her liver. Skye has been cancer free for 19 years but now she needs a liver transplant due to the chemotherapy that saved her life.
This Go Fund me account will be used to assist with medical costs and cover Skye’s living expenses when she is unable to work after surgery. Any amount will help during the difficult road Skye has ahead of her.
Thank you all for your support! Please share this link!
Co-organizers (2)
Holly Rupnow
Organizer
Madison, OH
Dana Apfelblat
Co-organizer