My second daughter died from the same rare disease unexpectantly. After our first daughter died from Campomelic Dysplasia, we did everything we were told to do. It was not expected to happen again. We found out Addison had the same rare disease the day before Halloween in 2009. She died a week before Thanksgiving. We had our blood drawn. A tube of blood was lost somehow. Months and months went by. The unthinkable happened. In May, I diagnosis with breast cancer. They said we would never know who carried it. We went to the RE and none of the fertility saving procedures were covered by insurance. Our health insurance barely covered any of my breast cancer procedures. It was a bad economy back almost 6 years ago. My husband had to switch jobs quick to cover cancer bills. His bank was owned by a foreign bank who barely gave him time for his daughter’s death. They were giving him a hard time about time off for my breast cancer surgeries.
That year, we survived one day at a time. I had just lost my job, when I decided to go back to the hospital job. I was there one month, when I was diagnosis with breast cancer. The hospital helped me even through I had only been back a month. There was not time to think these things out. The family 11 months after the death of our daughter suffered another loss. My mother died. There was cancer treatment, work, kindergarten and our living daughter’s activities. We also lost two precious pets that year. When it was discovered our children were dying due to a dominant carrier, I was afraid for our living daughter’s future. I did not save eggs based on cost and genetic information.
I am not a trained geneticist by any means. I don’t want to get into long explanations that I am not qualified to give. I am to focus on our emotional responses mostly.
There were several events that lead to our decision to go for genetic counseling. My husband’s mother insisted she had NF2, which occurred a month prior to my breast cancer diagnosis. I noticed my husband lost his hearing. For years, I asked him to have it check. Finally he did last year. He tells me about this NF2 disease. I am reading and reading about this. I am seeing major health concerns for Hope. I was more frightened for our living daughter. Our new daughter was conceived by embryo donation so she had no known risks. I feared no one would marry Hope, our living daughter because of her being a possible carrier. I worried it was unclear if she would be a carrier. We struggled as a couple about getting this appointment.
I don’t have a good relationship with mother-in-law. My husband’s mother has now ignored me for years. In our year of multiple losses, I begged her for help. It wasn’t for me. It was for my husband and my daughter. She refused to take them for Thanksgiving, when Addison died because it would, “ruin her plans.” She refused to stay with us for my first chemo treatment. I got tried of the “nos.” She knew my mother had some form of dementia and couldn’t help. God bless my mother’s soul. My mother would try to keep handing me money for me to buy myself something nice. I couldn’t stop crying. The first chemo treatment, I did awesome for the first week. The oncologist was right. I was struck by sickness and I laid on the bathroom floor of my house without any help within two weeks of the first treatment. I literally did not know what to do. I didn’t want to wake my daughter who was in kindergarten. Somehow, I was able to get up and clean up after just sitting on the bathroom floor being ill. In the mist, Hope had lost a tooth. She woke up after it was clean up looking for the tooth fairy. Mysteriously, a strange breeze came and even in my sick state, we saw the tooth fairy come.
I get stuck in the anger of that year. Why weren’t you there! I spoke weekly to my in-laws. It feels like they choose their daughter over me. Her wife and the daughter had three beautiful children. Two were born as we had the same due date, but I lost the pregnancy. This has impacted my marriage in more ways than one. We are not close. I choose to peruse having a baby for me and Hope. Since our daughter Joy was born, we are trying to put the pieces back together.
The fears of all those years were discuss in one geneticist appointment. I did an outstanding job not crying. It ends up the dominant carrier can not pass this to our daughter. My mother-in-law still says she has NF2. My husband only describe one benign tumor, which is not constant with NF2. She would have more. I wept a good long time last week even with this good news for all those years of worry. The geneticist asked me to ask my oncologist about if I needed further genetic testing for breast cancer. I have been in genetic testing for years now. Honestly, I know our other daughter had to see a specialist and we have had a lot of illness in the house lately. A good day is doctor free. It’s the anniversary of the death of Avery. I don’t want to do it. Genetic testing has it’s own brand of grief. It’s such a social taboo. I worry about the mental health of people facing this crisis.
I officially decided to not take the new job. I am working with my two jobs to arrange a work schedule to do what I love for a living and to be with my girls. I haven’t told them yet. My in-laws are so involved in my husband’s sister’s divorce. It’s been months since they have said anything. I stay focused on the girls and meditation classes. I want functional peace. I may never be able to be close to them again, but I want functional peace. We have our good days and bad days. I am hopeful….