A few weeks ago, I heard through the swim circle about one of the swimmers I had met from our old swim team had relapsed with cancer. If I remember correctly she was diagnosed the summer of 2011. I tie this around swim events that I recollect. She was one of the high school swimmers and from what I hear an amazing wrestler. I only had a few opportunities to interact with her personally, but I loved the influence she had on my daughter. Her name is Lauren. I loved her sparkle and spunk. I loved so much that she had the courage and passion to participate in a sport that had few women participating in. She was also an amazing swimmer and just an all around great athlete. As a mother of a daughter, I couldn't wish for a better role model. Unfortunately, her first diagnosis removed her from swimming and we would only hear about her progress through the swim social circle. But she has NEVER been forgotten and she and her family have always remained in our thoughts.
I heard that she relapsed with Ewing Sarcoma and this time around it's more aggressive. Having spent three years in pediatric oncology with my own small child I know this is not good. I recollect those years in the pediatric oncology life and can't help but wonder why so many of our beautiful children with such amazing spirits, have to be struck with such aggressive diseases. I believe that all children have potential to do and be amazing, but some just have that something extra special about them. These young lives with such bright sparks of life seem to be struck more often than those who are unkind, mean spirited, and cruel to others. Don't get me wrong I do not wish this diagnosis on anyone. It's just an observation. That suffering does not typically come to those who, I hate to say it, actually, could use a little suffering for the suffering they inflicted upon others. There I said it. And in my mind, it's unfair to rob these amazing individuals of the wonder lives they deserve.
Since hearing about Lauren's relapse. Not only are my thoughts on her and how she must deal with her own illness, but on her parents and her brother. It's a personal tragedy for each one of them. They all love her so. C is deeply bothered and saddened for Lauren. C never got to meet her own sister who was another amazing person even if her life was very short. C said I think Lauren is going to be a miracle surprise. She's going to be like F and live a very long time. She will show the doctors. I hope so. I really do.
Lauren started a blog of her own. She has such grace. If you would like to be moved and inspired here is the link.
http://thenotdyinggirl.com
In the grand scheme of life, my problems and worries are so small in comparison. What we do today does matter and it matters most to those we love.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Sunday, July 7, 2013
Wednesday, March 14, 2012
My Baby was Born with Cancer
It's come to that point where it's time to talk about Cienna, my first daughter. The little sweet girl who came into our lives at just the right time to give our lives some new perspective. I can remember being quite focused on F and all of his issues, baggage, complications... call it whatever you like he wasn't a normal healthy baby and I was in constant crisis mode with him. Then this sweet baby girl came into our lives and we were introduced to a couple of things. The first, what it was like to have a baby that had normal motor function. The second, babies can be born with cancer. Yes, born with cancer.
Cienna was born on January 18, 1995. I remember the morning very well. R had a doctor's appointment prior to the scheduled Cesarean. As soon as we were done we walked over to the hospital and checked in for her scheduled delivery. I can't remember if R's mom was caring for F or if we'd made arrangements for hm to stay at the Rotary House (a local respite facility for special needs children or children with health needs). Cienna had a normal Cesarean delivery. She weighed 8 pounds 5 ounces. She was so beautiful.
We took her home and everything seemed to be going well. We adjusted to our new family. My mother-in-law stayed to help me with F because I was unable to lift him. I can remember this day as if it was yesterday. My mother-in-law says to me "I noticed Cienan's eye has a funny look to it in certain light." Then she showed me what she saw. In just the right light you could see the light bounce off the inside of Cienna's eye and shimmer in a weird pink reflective way. It was almost like when a cat or dog's eyes reflects light, except a different color.
Monday morning I call the pediatricians office. I made an appointment for the following day. The next day is Valentines Day. R and I take her to the pediatrician and I show her exactly what my mother-in-law saw. Cienna's red reflex was normal, but the eye had that reflective glow. Our pediatrician says to us it could be a congenital detached retina or this "one really rare thing called retinoblastoma, but it's so rare a pediatrician may never ever see a case of it in their entire career." We leave the appointment knowing we will be referred to a pediatric opthamologist who we already knew because she was F's doctor.
I can remember going to dinner and a movie with R that night. I don't remember what we saw or even if we talked about what happened at the pediatrician's office that morning. I just remember neither of us could or would be prepared to deal with what was to come.
The phone rang at about 9 am. It was the ophthalmologist's office. They were calling to find out how soon we could get Cienna into the office. You'd think that I'd have really thought about this call and what it meant, the urgency of it. I was naive and had no clue. R and I arrive at the appointment and we wait and wait. They are literally squeezing us in. The doctor comes in does her initial evaluation and then she needs to dilate Cienna's eyes so we wait some more. Eventually, we've been there long enough that R needs to leave for work. Finally, the time comes when the doctor comes in for the detailed exam of Cienna's eyes. They put these little metal things on her eyelids to force them to stay open and it was HORRIBLE. Cienna was crying and crying. It was very unpleasant. After my new baby girl is done being tortured, the doctor looks right at me and says "She has retinoblastoma in both eyes. The right eye's tumor is very large. I'm going to immediately send you to Children's for an MRI. I will refer you to UCSF or Children's Hospital Los Angeles." What? My head is spinning. I'm not really sure I'm grasping the situation at this moment.
I call R and his mom. R leaves work early or his mom comes to get us. I can't really remember. We head to the local children's hospital for the MRI. We run into my favorite doctor, Dr. Hutch. F's neurologist. He is shocked to see us. We explain what's happening. His look should have told me a lot, but again CLUELESS! The ophthalmologist calls us on the hospital phone to give us the results. Cienna's right eye is 98 percent tumor and needs to be removed IMMEDIATELY! We are told she will call us later in the evening to tell us which hospital we are going to be referred to. Our heads are spinning!
The phone finally rings. We are told that arrangements have been made with the Dr. in Los Angeles. We need to leave the next morning. It's Thursday. The surgery is scheduled for Friday. We are in shock.
We get up and leave the house as early as possible. We arrive with the MRI films and we are waiting in the eye clinic. The doctor comes in and tells us the procedure to remove the eye is very simple. All aspects are covered and the recovery process. Then he proceeds to tell us that she will be referred to hematology oncology and they will put together her treatment plan for her CHEMOTHERAPY. R and I look right at each other.
The room is spinning. "What? Chemotherapy You say?"
Doctor "Yes, chemotherapy that is how we treat retinoblastoma in conjunction with laser therapy..." more things are said, but at that moment. My head is spinning and my heart is broken into a million pieces once again.
Me "You mean this is cancer."
Doctor, "Yes, retinoblastoma is a rare children's cancer that affects the eyes. She has the bilateral version..." then he goes into the blah, blahs about the genetic aspect of the disease.
I don't think we were really listening anymore because we were just told that our daughter had been BORN with cancer. Cancer grew in that right eye all through her in-utero development.
**Their Newsletter just arrived in my inbox. If I can figure out how to imbed or attach it I will. For now here is the link:
Retinoblastoma International
Cienna was born on January 18, 1995. I remember the morning very well. R had a doctor's appointment prior to the scheduled Cesarean. As soon as we were done we walked over to the hospital and checked in for her scheduled delivery. I can't remember if R's mom was caring for F or if we'd made arrangements for hm to stay at the Rotary House (a local respite facility for special needs children or children with health needs). Cienna had a normal Cesarean delivery. She weighed 8 pounds 5 ounces. She was so beautiful.
We took her home and everything seemed to be going well. We adjusted to our new family. My mother-in-law stayed to help me with F because I was unable to lift him. I can remember this day as if it was yesterday. My mother-in-law says to me "I noticed Cienan's eye has a funny look to it in certain light." Then she showed me what she saw. In just the right light you could see the light bounce off the inside of Cienna's eye and shimmer in a weird pink reflective way. It was almost like when a cat or dog's eyes reflects light, except a different color.
Monday morning I call the pediatricians office. I made an appointment for the following day. The next day is Valentines Day. R and I take her to the pediatrician and I show her exactly what my mother-in-law saw. Cienna's red reflex was normal, but the eye had that reflective glow. Our pediatrician says to us it could be a congenital detached retina or this "one really rare thing called retinoblastoma, but it's so rare a pediatrician may never ever see a case of it in their entire career." We leave the appointment knowing we will be referred to a pediatric opthamologist who we already knew because she was F's doctor.
I can remember going to dinner and a movie with R that night. I don't remember what we saw or even if we talked about what happened at the pediatrician's office that morning. I just remember neither of us could or would be prepared to deal with what was to come.
The phone rang at about 9 am. It was the ophthalmologist's office. They were calling to find out how soon we could get Cienna into the office. You'd think that I'd have really thought about this call and what it meant, the urgency of it. I was naive and had no clue. R and I arrive at the appointment and we wait and wait. They are literally squeezing us in. The doctor comes in does her initial evaluation and then she needs to dilate Cienna's eyes so we wait some more. Eventually, we've been there long enough that R needs to leave for work. Finally, the time comes when the doctor comes in for the detailed exam of Cienna's eyes. They put these little metal things on her eyelids to force them to stay open and it was HORRIBLE. Cienna was crying and crying. It was very unpleasant. After my new baby girl is done being tortured, the doctor looks right at me and says "She has retinoblastoma in both eyes. The right eye's tumor is very large. I'm going to immediately send you to Children's for an MRI. I will refer you to UCSF or Children's Hospital Los Angeles." What? My head is spinning. I'm not really sure I'm grasping the situation at this moment.
I call R and his mom. R leaves work early or his mom comes to get us. I can't really remember. We head to the local children's hospital for the MRI. We run into my favorite doctor, Dr. Hutch. F's neurologist. He is shocked to see us. We explain what's happening. His look should have told me a lot, but again CLUELESS! The ophthalmologist calls us on the hospital phone to give us the results. Cienna's right eye is 98 percent tumor and needs to be removed IMMEDIATELY! We are told she will call us later in the evening to tell us which hospital we are going to be referred to. Our heads are spinning!
The phone finally rings. We are told that arrangements have been made with the Dr. in Los Angeles. We need to leave the next morning. It's Thursday. The surgery is scheduled for Friday. We are in shock.
We get up and leave the house as early as possible. We arrive with the MRI films and we are waiting in the eye clinic. The doctor comes in and tells us the procedure to remove the eye is very simple. All aspects are covered and the recovery process. Then he proceeds to tell us that she will be referred to hematology oncology and they will put together her treatment plan for her CHEMOTHERAPY. R and I look right at each other.
The room is spinning. "What? Chemotherapy You say?"
Doctor "Yes, chemotherapy that is how we treat retinoblastoma in conjunction with laser therapy..." more things are said, but at that moment. My head is spinning and my heart is broken into a million pieces once again.
Me "You mean this is cancer."
Doctor, "Yes, retinoblastoma is a rare children's cancer that affects the eyes. She has the bilateral version..." then he goes into the blah, blahs about the genetic aspect of the disease.
I don't think we were really listening anymore because we were just told that our daughter had been BORN with cancer. Cancer grew in that right eye all through her in-utero development.
**Their Newsletter just arrived in my inbox. If I can figure out how to imbed or attach it I will. For now here is the link:
Retinoblastoma International
Saturday, February 11, 2012
Death Can Be a Beautiful Thing
Many people do not like to think about death. It's rarely a part of their life unless they work in a profession where they are exposed to it. I'm talking about the average person. They would hardly give death a thought unless they are faced with a situation that brings it to mind. Situations like a cancer diagnosis, another catastrophic illness, an elderly family member in declining health, etc. I think about death often.
I think about death, first, because Cienna had died at such a young age. Second, because my son is almost 19 years old. Many of the families that I know who had children with conditions similar to his died before their teen years. I often wonder what is it about him that keeps him here so long. I'm often told it's because he gets good care. I like to believe it's because he has a purpose along with a strong will and spirit.
This post isn't about my son, it's about death. This past year my very dear friend, Tam, died. She was like a foster mom to me. I had known her since she my neighbor in 1998, the year my daughter died. My own mother absent most of my adult life was never there to support me in many of the years when I could have used a mother's hug or wisdom. Tam was family to all of us. A grandmother to my daughter. Tam was diagnosed early last year with cancer. She had become a breast cancer surviver many years before we met. Cancer had returned and she had resolved herself to enjoying her last days. She had been there done that with chemo and radiation. I understood and respected that decision. I knew because I had been there and done that when Cienna had cancer.
Choosing quality over quantity of life is a hard decision for many. Many people want to hang on to their loved ones. They hang on out of love and fear of not having them. Sometimes they forget that one more day of pain and discomfort is not quality of life. I'm not saying it's a bad decision to go to great lengths or measures when you know you are faced with death. That is a personal choice. I'm saying that for Cienna, and for Tam, the choice to enjoy the last days without the extra invasive measures needed to hopefully prolong life would have brought discomfort. We had previous knowledge and experience of what those measures took from a body. Cancer treatment is hard. If you are a cancer surviver or going through treatment you know this. Each time cancer recurs it is harder to treat. It requires harsher and harsher treatments if any are available. It can rob you of precious minutes to be spent away from a clinic or hospital enjoying those you love and the world. The decision not to fight with invasive treatments is not easy. When denying invasive treatments it does not mean you are giving up either. There is fight and hope until the very end.
Dying is a process. It has many stages. It can, however, be a very beautiful thing. To help care for someone during their last days is a gift to you and to them. It is a very special time. If someone chooses to die at home, as we did for Cienna, and as Tam did for herself, there are resources to assist you. There is hospice. They are a fabulous team of people. There job is not easy, but it's necessary and it takes special people to be a part of that special time. They can assist in preparing you for each stage of the process.
Something that I learned while going through the dying process is that each individual chooses the moment and circumstance at which they will take their last breath. I really believe this. I've talked to many individuals who have experienced the dying process and I am not the only one who feels this way. I believe that there is a reason and a plan to the last moment. There are times when loved ones miss that last breath. It is not for us to understand.
If you are faced with that hard decision of quantity versus quality, or have been asked by a loved one to help care for them, please know that although as frightening as it may be this is a beautiful time. There is no one who will care for a loved one in their last days like you can. Nurses and care providers will come and go, but you are a constant in your loved ones life. You presence and your touch bring them comfort and love. You will have self doubt about being able to care for them, but you will find the strength when you need it most. The human spirit is a mighty thing.
I think about death, first, because Cienna had died at such a young age. Second, because my son is almost 19 years old. Many of the families that I know who had children with conditions similar to his died before their teen years. I often wonder what is it about him that keeps him here so long. I'm often told it's because he gets good care. I like to believe it's because he has a purpose along with a strong will and spirit.
This post isn't about my son, it's about death. This past year my very dear friend, Tam, died. She was like a foster mom to me. I had known her since she my neighbor in 1998, the year my daughter died. My own mother absent most of my adult life was never there to support me in many of the years when I could have used a mother's hug or wisdom. Tam was family to all of us. A grandmother to my daughter. Tam was diagnosed early last year with cancer. She had become a breast cancer surviver many years before we met. Cancer had returned and she had resolved herself to enjoying her last days. She had been there done that with chemo and radiation. I understood and respected that decision. I knew because I had been there and done that when Cienna had cancer.
Choosing quality over quantity of life is a hard decision for many. Many people want to hang on to their loved ones. They hang on out of love and fear of not having them. Sometimes they forget that one more day of pain and discomfort is not quality of life. I'm not saying it's a bad decision to go to great lengths or measures when you know you are faced with death. That is a personal choice. I'm saying that for Cienna, and for Tam, the choice to enjoy the last days without the extra invasive measures needed to hopefully prolong life would have brought discomfort. We had previous knowledge and experience of what those measures took from a body. Cancer treatment is hard. If you are a cancer surviver or going through treatment you know this. Each time cancer recurs it is harder to treat. It requires harsher and harsher treatments if any are available. It can rob you of precious minutes to be spent away from a clinic or hospital enjoying those you love and the world. The decision not to fight with invasive treatments is not easy. When denying invasive treatments it does not mean you are giving up either. There is fight and hope until the very end.
Dying is a process. It has many stages. It can, however, be a very beautiful thing. To help care for someone during their last days is a gift to you and to them. It is a very special time. If someone chooses to die at home, as we did for Cienna, and as Tam did for herself, there are resources to assist you. There is hospice. They are a fabulous team of people. There job is not easy, but it's necessary and it takes special people to be a part of that special time. They can assist in preparing you for each stage of the process.
Something that I learned while going through the dying process is that each individual chooses the moment and circumstance at which they will take their last breath. I really believe this. I've talked to many individuals who have experienced the dying process and I am not the only one who feels this way. I believe that there is a reason and a plan to the last moment. There are times when loved ones miss that last breath. It is not for us to understand.
If you are faced with that hard decision of quantity versus quality, or have been asked by a loved one to help care for them, please know that although as frightening as it may be this is a beautiful time. There is no one who will care for a loved one in their last days like you can. Nurses and care providers will come and go, but you are a constant in your loved ones life. You presence and your touch bring them comfort and love. You will have self doubt about being able to care for them, but you will find the strength when you need it most. The human spirit is a mighty thing.
Wednesday, February 1, 2012
Introduction
It starts with the title. I've been given a lot of lemons. There are times when I feel a whole truck load has been dropped off at my house. I've had to make a lot of lemonade. I feel like I am constantly making the best of things. Porcupine because advocating for my son has resulted in me becoming outright prickly to get things accomplished. Professionals talk a good talk. If I am not careful I can head down a path that I don't want to be on. It can be distracting from my goal. It becomes a matter of focus.
I'm in my early 40's. I have two children. I have had three. I've been married to my husband for 25 years. Although my husband and I have stayed married our relationship, for many, many reasons has been up and down and very rocky. At times, I'll admit almost at complete meltdown almost beyond repair. We've lived apart for periods of time throughout our relationship, but have managed many times to pull it together. We have had more than our fair share of heartbreak, heartache, and tragedy together and it hasn't always made us stronger... but we are working on it.
In 1993, our first child was born healthy and suffered an illness shortly after birth. This illness forever changed the course of our lives. Our son F, had encephalitis as a newborn resulting in severe brain damage and disabilities. In 1995, our second child, Cienna, was born healthy and shortly after her birth, three weeks to be exact, she was diagnosed with bilateral retinoblastoma. A rare children's cancer of the eye. She would only live to the age of three years and eighteen days.
Losing Cienna to cancer was and still is my greatest tragedy. I think I can speak for my son and husband and say it was for them as well. Cienna was our joy. She helped put F's disabilities into perspective. Losing her caused all three of us to lose a part of ourselves. It would be a long time before we stopped just going through the motions of life.
Then after two years of grief, we stepped back into living again. It began on February 22, 2000, when our daughter, C, was born. From the very first day she came into our lives she was a ball of energy, vibrant, and full of life... and HEALTHY! LIfe has been a whirlwind journey ever since.
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