My name is Michael. Mikayla was diagnosed with AML on July 6. Symptoms only occurred 2 days before diagnosis. The hospital missed diagnosed her as having a urinary tract infection, but her pediatrician caught it right away. AML is a different beast than ALL, but our children's and families still face the same struggles. Biggest difference is the treatment. We do 3 to 4 rounds of chemo followed by a bone marrow transplant. We are struggling to achieve remission so we are currently experimenting with i think Bortex. It is risky, but not as risky as not giving it a try. We are separated as a family by about 200 miles. We have 4 children. 2 older children in school, Mikayla the sick child, and an infant that rotates between mom and dad as if we are divorced. We were hit hard in the beginning of discovery, but snapped back to reality within a few days. We have loads of ups and downs. Our philosophy has always been to maintain somewhat of a "normal" life. We no matter what break down in front of our children. Mikayla knows all of her problems and we tell her the truth about everything. She has become very brave in the face of adversity. She has taken a liking to the hospital. She knows how much medicine to take and the names. She knows how to flush her own lines. She is pretty bossy and lets the nurses know when they are making a mistake. Financially we have taken a beating. Our social worker is lack luster to say the least. We have a 90/10 insurance. The 10 is now covered by Medicaid, because we both chose to quit work to help keep the family in order. Creating our blog, which by the way I love yours, is the best thing to do. Updating people is the tuffest task we handle. I will read yours in a moment to fully understand what is happening with Nevaeh. You can talk with me or my wife at anytime. Our contact is mikaylasfight@yahoo.com
My name is Michael. Mikayla was diagnosed with AML on July 6. Symptoms only occurred 2 days before diagnosis. The hospital missed diagnosed her as having a urinary tract infection, but her pediatrician caught it right away. AML is a different beast than ALL, but our children's and families still face the same struggles. Biggest difference is the treatment. We do 3 to 4 rounds of chemo followed by a bone marrow transplant. We are struggling to achieve remission so we are currently experimenting with i think Bortex. It is risky, but not as risky as not giving it a try. We are separated as a family by about 200 miles. We have 4 children. 2 older children in school, Mikayla the sick child, and an infant that rotates between mom and dad as if we are divorced. We were hit hard in the beginning of discovery, but snapped back to reality within a few days. We have loads of ups and downs. Our philosophy has always been to maintain somewhat of a "normal" life. We no matter what break down in front of our children. Mikayla knows all of her problems and we tell her the truth about everything. She has become very brave in the face of adversity. She has taken a liking to the hospital. She knows how much medicine to take and the names. She knows how to flush her own lines. She is pretty bossy and lets the nurses know when they are making a mistake. Financially we have taken a beating. Our social worker is lack luster to say the least. We have a 90/10 insurance. The 10 is now covered by Medicaid, because we both chose to quit work to help keep the family in order. Creating our blog, which by the way I love yours, is the best thing to do. Updating people is the tuffest task we handle. I will read yours in a moment to fully understand what is happening with Nevaeh. You can talk with me or my wife at anytime. Our contact is mikaylasfight@yahoo.com
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