Day 57- The Journey Begins

Day 57

It is not getting easier. Every day without my Ashley is harder and harder. Her short life continues to flash before my eyes every day, multiple times a day. I keep going over and over in my head, that Ashley would still be here, if only I didn’t agree to give her that Gardasil vaccine. I am angry with myself, angry with her pediatrician. She insisted Ashley needed it. She insisted Ashley was at greater risk of developing this cancer. But what she didn’t tell me, is that the only way Ashley could get this cancer, was to develop HPV through sexual intercourse. Ashley was always with us. She wasn’t dating. There was no way she could even contract this HPV. If I would have known that, then I would have said no. But she played on my concern for the fact that Ashley already had cancer and insisted I give her this vaccine for her protection. You see, as the years went on and we went for normal office visits, I learned that our pediatrician’s daughter was a hand full from the things she told us. She once told us how her daughter would take her car in the middle of the night. So she assumed, that just because her daughter was that way, that Ashley was that way.  She had even run a pregnancy test on Ashley without asking permission. She was practicing medicine as if every teenage daughter was like hers. She once even said, “We don’t know what our children are doing behind our backs”. I told her that I knew my daughter very well. She said, “we like to think we do but we don’t.”  The more I think about it, the more I see how totally unprofessional she was and the fact that she allowed her daughter’s actions, to influence her opinion on other teenage girl’s and on how she practiced medicine, is messed up. Well maybe she needed to be a better mother and pay more attention to her children and be a parent to her child, instead of trying to parent everyone else’s children or assume everyone else was like her daughter.

I have to live with the fact that the Gardasil Vaccine is very likely the reason my daughter’s cancer came back the 2^nd time. I have to live with the fact that I failed my daughter, by allowing her pediatrician to play on my emotions, my concern for Ashley’s health and thus agreed to that vaccine instead of going with my gut and not giving it to her. But I also believe that she needs to live with that fact. So, I sent her a message telling her so. This vaccine was new to the United States. There was no way she knew the side effects it could have. She didn’t know enough to be pushing this vaccine, especially on someone like Ashley. There is no way her or the pharmaceutical companies knew the effects it could have on healthy children, let alone children who currently had or had cancer in the past. She just pushed it because the pharmaceutical companies said to. I know at on time, doctors would get incentives for pushing their drugs and vaccines. So, I asked her what her incentive was. I asked her what my daughter’s life was worth to her. I hope she loses sleep every night for the rest of her life. She needed to be made aware. So, I made her aware. She is unprofessional and quite frankly, in my opinion, as I sit here and write this, I believe she was being unethical as well. She didn’t know and still may not know, how to separate her personal life from her professional life. But like so many other’s in this world, it’s all about Money and Power.

I Miss My Beautiful Ashley More Each Day. She deserved to live the life she so wanted to live. She didn’t get that chance because so many people failed her. Her pediatrician, most of her doctors and her NP’s in Chicago. I even failed her. I failed her by not going with my gut. I failed her by trusting doctors. I have to live with that for the rest of my life and it eats me up every single day. But they need to live with it as well. So, I let them know that they failed her. I am sure that it will roll of their shoulders, after all, the cold heartiness I saw from many of them, was sickening. But not all of them were that way. She had some amazing residents. Some of the oncology doctors were great, Dr. Yu, her infectious disease doctor and his Fellow were amazing. Her 6^th floor Nurses were great and even her sedation and clinic nurses. But there was so much lack of knowledge in that ICU on how to care for a patient with no immune system, how to care for patients that had transplant. Same in the ER. That lay’s on the head of the man that is in charge of that hospital.

Dr.Yu and his Fellow Emily, were the only ones, of all of Ashley’s doctors, that took care of her through the last three years, that sent a card of sympathy. They genuinely cared about Ashley and you could see it. She wasn’t just a patient to them. She was a person. An Amazing Young Lady, that showed them that there is more to this than medicine. Someone who taught them so much. Dr. Yu once told Mike, “Us doctors like to think we know everything, but the truth is, we don’t. We are learning so much as we go.”

I wish that after we were referred to St. Jude, that we would have just kept all her cancer care there. Dr. Merchant never failed Our Ashley. St. Jude, never failed our daughter. I had heard from doctors and nurses, when we complained about all the inadequacies at U of C, that you will find this everywhere. Well, in 16 years, we never saw it a St. Jude.   I also wish I would have just kept my children’s pediatrician up north. All of my mistakes, will haunt me till the day I die.

The Past:

I have been contemplating for years, where exactly to start this story. It is after all Ashley’s story. I guess I need to start with me, since my faith plays a major role in our lives.

Both my grandmothers were very religious. The prayed every day. I think my Grandma Mary was a little more religious, as she was a faithful church goer. They had a big influence in my life, as I can remember back to being very little and having conversations with God. My mom thought that I had an imaginary friend and that I would go in the closet to talk to my friend. But I was talking to God. I would talk to him often, as something inside me, always new that life was not going to be easy. There was no doubt in my mind that God Existed. Those doubts didn’t come till much later in life.

When I was about 8, I remember my parent’s arguing a lot. I must have learned or heard of divorce somehow, because I remember I would go in the bathroom and pray to God and ask him not to let my parent’s get a divorce. I begged him. I thought for sure he was answering my prayers, as we ended up going on a family vacation to Disney World. Little did I know at the time, that it would be our first and last family vacation. That is exactly what it was intended for. To try and make the divorce a little easier. Several months later, we were at Grandma’s house, like we usually were on Sunday’s, but Mom didn’t come with this time. When we got home that evening, Mom wasn’t there. Dad sat us down at the table and told us that Mom had moved out. He told us about the divorce and that we would be living with him.

I couldn’t understand why God didn’t answer my prayers. I was so upset. I thought I must have done something bad that God would do this. But I never lost my belief or faith in God.

In the beginning, we would see Mom every other weekend and a day or two during the week for a couple hours. Not too long afterwards this woman, whom we had met once at Marquette Park, came into our Dad’s life. Our lives too, because see ended up eventually moving in. Mom ended up getting remarried to the man who became the most amazing step father to walk this earth. I liked him from the minute I met him. Dad got married a month later, to that woman, that would end up creating so much pain in our lives for years to come. She had her moments, mostly when dad was around. She did cooked dinner every day, I will give her that, but she was not very motherly and it was clear that she was not a fan of mine or my brother Pat’s.  But through her marriage to my Dad, we did get an amazing step brother who treated us so very good.

I was 9 when my parents got divorced and 10 when they both got remarried. Before the divorce, Mom always took care of us and everything around the house. We were just responsible for picking up our toys and not destroying our bedrooms or the house. As I said I was 10, my Sister Julie was 6 and my brothers were 11 and 12. We didn’t know how to do laundry, or clean bathrooms and living rooms and kitchens. But we were about to learn how. My Dads wife made the 4 of us clean the house and do our own laundry. At 10 years old I was smart enough to know that we were a little young to be doing that and that Julie, at 6, was definitely too young. I thought to myself, “who makes a 6-year-old do laundry and clean a bathroom. A toilet. A Tub. A Sink.” I told Julie to put a whole can of comet in the tub and just make a big mess of the bathroom. My intention was for the step monster to stop making Julie clean the bathroom and make one of us do it. It worked. She got angry and must have realized that a 6-year-old was maybe a little too young to be cleaning bathrooms. She gave the job to me.

I would do all of Julie’s jobs because I didn’t think a 6-year-old should be doing those things. I did her laundry, I cleaned our room, I cleaned the bathroom, I helped her get ready for school. I comforted her  at night when she was crying because she missed our mom. I became a Mom to my little sister at 10 years old. I guess you can say that my youth prepared me for what I was going to face later in life. I learned how important a Mom is in the lives of their children. I knew that if I ever had children, I was going to try to be the best mom I could possibly be and take the best care of my kids that I could. I learned a lot from my Mom on how to be a Mom. I learned how NOT to be a Mom, from the step monster. I guess I owe her credit for that. But I think that most of my understanding of what it meant to be a Mom, stems from always wanting to take care of other’s, because that is what our God wanted us to do. I believed that we must live our lives as God wanted us to. So, I became a nurturer.

More later………..