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Angie
Thursday, June 30, 2011
Tuesday, August 3, 2010
Finding Our Footing
Those first few weeks after Steven's diagnosis were incredibly stressful. Our minds were spinning with new information. Our hearts, souls and minds were trying to grasp dreadful information. Harry and I alternated staying overnight at the hospital. There was never a time when Steven was left alone. We were determined to create an atmosphere of calm for our son. Even though we were emotionally drained and full of anguish, we made every attempt to demonstrate logic and calm when in the presence of our son.
Sons Phil and Nick were in college. So their schedules were different than the rest of the us. Phil lived at home and Nick was away at school. Husband Harry worked during the day and in the evenings could be found either at the hospital with Steven, or home watching TV with Steven. I was either at the hospital with Steven or at home doing chores.
I would spend late nights on the internet searching for answers. Any possible information that would provide hope and a better understanding of our son's diagnosis was analyzed and file away. Statistical data was reviewed and file away for future questions to our oncologist.
Late nights were a time of quiet in our home. This time was used to sit in front of the computer and provide daily updates to family and friends. I hated fielding phone calls and providing the same information over and over again to well intentioned callers. Over time my email network began to grow. Co-workers, friends of family and friends of friends were now receiving my updates. It became pretty obvious that our story was being sent around the country and parts of the world.
We regularly met with our medical team. We sat down with Barb our clinical nurse practitioner to review the chemotherapy schedule. The "Family Information Folder" was starting to grow in volume as more and more information was being passed along to us. The folder contained a section for each topic related to pediatric cancer from "the medical team" to "medications" to "medical terms" to "educational issues" and so on. The folder was a step by step guide to assist us in our "journey". The folder gave us some helpful direction and resources, and for a while I found myself carrying it back and forth to medical appointments. Finally, it became too heavy and I removed the sections I needed (like the calendar of chemotherapy treatment and important phone numbers) and placed them in a light weight carrier.
In addition to the medical team I had to visit with Steven's high school teachers, school counselor and school psychologist to review his educational plan. Thank God his educational team was proactive (and Thank God I have the educational background to know my son's legal rights to an education regardless of medical issues). So Steven had a Educational Plan (called a 504 Plan) that included home tutoring. Home tutoring was incredibly helpful thanks to Steve's great guidance counselor.
Family and friends felt helpless. What could they do? Some suggested to bring dinner to our home. Which was wonderful, but after a month or two I started to gain weight. It seemed that as my son was loosing weight, I was putting on the pounds, which is my way of handling stress. Although the generosity of friends and family was filled with love and kindness, we needed to put a stop to the food deliveries. In fact at one point Steven commented "what is this a funeral?" In addition, our older sons (Phil and Nick) weren't always home to receive the dinners...it just came to be too much! We needed our own meals and style of cooking. Thank God, we all can cook!
It was about this time that my feeling a lack of control set in. Although I was able to manage my son's schedule, medications, injections, lack of appetite or unusual appetite, I began having panic attacks. Although they were small I felt like I was having a heart attack. What was happening to me? I really didn't identify the nature of my problem. I telephoned my physician and after a brief visit I was informed of my problem and placed on a low dose of Paxil. Now, not everyone can take medications for anxiety, but this worked for me. The drug lowered my blood pressure and heart rate (which was a good thing) and enabled me to take on each day with an increased sense of purpose and calm. I was able to manage my anxiety and put it on a shelf. There is no room for stress and anxiety when parenting a child with cancer. Steven needed a mom who had her act together!
As I began to create routine for myself, Steven and our family, I realized that there was something I needed to do: Ask God For Help!
Now from the beginning I asked everyone to pray for us. But within a very short period of time I knew that my current religious practices were insufficient. I knew that even though I went to Sunday School as a little girl, read the Holy Bible with my beloved mother, sang in the choir as a teenager, taught Sunday School when my children were young, and helped with our youth group, that wasn't enough! Something was missing in me! But what was it?
In the Orthodox Christian Faith there is a term called the "nous". The "nous" is the spiritual soul, the part of our humanity that connects us with God that has nothing to do with our mind. It is not logical. For some it might even be referred incorrectly as blind faith. But it isn't blind at all. It is the awareness that God exists in all of us and that the only way we can commune with Him is through constant prayer.It is the give and take that occurs when we reach within ourselves and find peace through constant prayer. I knew that if I was going to turn to God for help that I needed to communicate with Him.
I began to ask questions of my spiritual father. I read about the Saints and their sacrifices. I read the Bible and about the Orthodox Faith. The studied the prayers written to help people like me find a way closer to God. I went to confession. I asked God for forgiveness. I read the prayers and was overwhelmed by the beauty of the language and the obvious sincerity of the authors. For example many of the psalms were written to help us communicate with God and ask his forgiveness. Do know Psalm 142?
After a time, I felt better. I knew that my prayers were being heard and I began to experience HOPE.
A rational person knows that HOPE is vital to successfully fighting any cancer. HOPE is what gets you up in the morning and HOPE puts you to bed at night. If you don't believe that your child will recover, then it is likely that he will not survive. You must have HOPE. So we did. We had HOPE. But in order to Believe in that HOPE you need to pray and pray and pray. You need to have Faith that God is going to be by your side every step.
I cannot begin to tell you how transformed I felt. Although I knew the severity of my son's situation, I had
(and have) a Faith In God that will not be taken from me.
Do you recall when Jesus said "Get behind me Satan!" to his disciples? They doubted Him. Doubt is not welcomed in my life. When doubt enters the Jesus Prayer is said fervently. I am reminded of Who is in control: God.
Sons Phil and Nick were in college. So their schedules were different than the rest of the us. Phil lived at home and Nick was away at school. Husband Harry worked during the day and in the evenings could be found either at the hospital with Steven, or home watching TV with Steven. I was either at the hospital with Steven or at home doing chores.
I would spend late nights on the internet searching for answers. Any possible information that would provide hope and a better understanding of our son's diagnosis was analyzed and file away. Statistical data was reviewed and file away for future questions to our oncologist.
Late nights were a time of quiet in our home. This time was used to sit in front of the computer and provide daily updates to family and friends. I hated fielding phone calls and providing the same information over and over again to well intentioned callers. Over time my email network began to grow. Co-workers, friends of family and friends of friends were now receiving my updates. It became pretty obvious that our story was being sent around the country and parts of the world.
We regularly met with our medical team. We sat down with Barb our clinical nurse practitioner to review the chemotherapy schedule. The "Family Information Folder" was starting to grow in volume as more and more information was being passed along to us. The folder contained a section for each topic related to pediatric cancer from "the medical team" to "medications" to "medical terms" to "educational issues" and so on. The folder was a step by step guide to assist us in our "journey". The folder gave us some helpful direction and resources, and for a while I found myself carrying it back and forth to medical appointments. Finally, it became too heavy and I removed the sections I needed (like the calendar of chemotherapy treatment and important phone numbers) and placed them in a light weight carrier.
In addition to the medical team I had to visit with Steven's high school teachers, school counselor and school psychologist to review his educational plan. Thank God his educational team was proactive (and Thank God I have the educational background to know my son's legal rights to an education regardless of medical issues). So Steven had a Educational Plan (called a 504 Plan) that included home tutoring. Home tutoring was incredibly helpful thanks to Steve's great guidance counselor.
Family and friends felt helpless. What could they do? Some suggested to bring dinner to our home. Which was wonderful, but after a month or two I started to gain weight. It seemed that as my son was loosing weight, I was putting on the pounds, which is my way of handling stress. Although the generosity of friends and family was filled with love and kindness, we needed to put a stop to the food deliveries. In fact at one point Steven commented "what is this a funeral?" In addition, our older sons (Phil and Nick) weren't always home to receive the dinners...it just came to be too much! We needed our own meals and style of cooking. Thank God, we all can cook!
It was about this time that my feeling a lack of control set in. Although I was able to manage my son's schedule, medications, injections, lack of appetite or unusual appetite, I began having panic attacks. Although they were small I felt like I was having a heart attack. What was happening to me? I really didn't identify the nature of my problem. I telephoned my physician and after a brief visit I was informed of my problem and placed on a low dose of Paxil. Now, not everyone can take medications for anxiety, but this worked for me. The drug lowered my blood pressure and heart rate (which was a good thing) and enabled me to take on each day with an increased sense of purpose and calm. I was able to manage my anxiety and put it on a shelf. There is no room for stress and anxiety when parenting a child with cancer. Steven needed a mom who had her act together!
As I began to create routine for myself, Steven and our family, I realized that there was something I needed to do: Ask God For Help!
Now from the beginning I asked everyone to pray for us. But within a very short period of time I knew that my current religious practices were insufficient. I knew that even though I went to Sunday School as a little girl, read the Holy Bible with my beloved mother, sang in the choir as a teenager, taught Sunday School when my children were young, and helped with our youth group, that wasn't enough! Something was missing in me! But what was it?
In the Orthodox Christian Faith there is a term called the "nous". The "nous" is the spiritual soul, the part of our humanity that connects us with God that has nothing to do with our mind. It is not logical. For some it might even be referred incorrectly as blind faith. But it isn't blind at all. It is the awareness that God exists in all of us and that the only way we can commune with Him is through constant prayer.It is the give and take that occurs when we reach within ourselves and find peace through constant prayer. I knew that if I was going to turn to God for help that I needed to communicate with Him.
I began to ask questions of my spiritual father. I read about the Saints and their sacrifices. I read the Bible and about the Orthodox Faith. The studied the prayers written to help people like me find a way closer to God. I went to confession. I asked God for forgiveness. I read the prayers and was overwhelmed by the beauty of the language and the obvious sincerity of the authors. For example many of the psalms were written to help us communicate with God and ask his forgiveness. Do know Psalm 142?
"Lord, hear my prayer,
In your truth, give ear to my supplications;
in your righteousness, hear me.
And enter not into judgement
with your servant,
for no one living is justified in your sight,
For the enemy has pursued my soul;
he has crushed my life to the ground;
he has made me dwell in darkness,
like those who have long been dead,
and my spirit is overwhelmed within me;
my heart within me is distressed.
I remembered the days of old;
I meditated on all your works;
I pondered on the work of your hands.
I spread out my hands to you;
my soul longs for you like a thirsty land.
Lord, hear me quickly;
my spirit fails,
Turn not your face away from me,
lest I be like those who go down into the pit.
Let me hear your mercy in the morning,
for in you I have put my trust.
Lord, teach me to know
the way in which I should walk,
for I lift up my soul to you.
Rescue me, Lord, from my enemies;
to you have I fled for refuge.
Teach me to do your will,
for you are my God.
Your good Spirit shall lead me on a level path;
Lord, for your name's sake,
you shall preserve my life.
In your righteousness,
you shall bring my soul out of trouble,
and in your mercy,
you shall utterly destroy my enemies.
And you shall destroy all those who afflict my soul,
for I am your servant..."
Sometimes a prayer like Psalms 142 is hard to remember. There are briefer prayers. But one prayer is highly recommended for our daily and constant use. This prayer is called the "JESUS PRAYER".
Lord, Jesus Christ, Son of God, Have Mercy on Me a Sinner.
or simply
Lord, Jesus Christ Have Mercy On Me.
After a time, I felt better. I knew that my prayers were being heard and I began to experience HOPE.
A rational person knows that HOPE is vital to successfully fighting any cancer. HOPE is what gets you up in the morning and HOPE puts you to bed at night. If you don't believe that your child will recover, then it is likely that he will not survive. You must have HOPE. So we did. We had HOPE. But in order to Believe in that HOPE you need to pray and pray and pray. You need to have Faith that God is going to be by your side every step.
I cannot begin to tell you how transformed I felt. Although I knew the severity of my son's situation, I had
(and have) a Faith In God that will not be taken from me.
Do you recall when Jesus said "Get behind me Satan!" to his disciples? They doubted Him. Doubt is not welcomed in my life. When doubt enters the Jesus Prayer is said fervently. I am reminded of Who is in control: God.
Sunday, August 1, 2010
Getting Started
So, I always wanted to create a blog. In fact over the last four years I have thought about putting my thoughts out there...and I did...but not in this format.
Over the last four years I have shared my son's story with family and friends as he went through diagnosis, treatment, remission, life, another diagnoses, more treatment, and (Thank God) remission.
There is nothing light about his story. In fact it is excrutiatingly alive, painful, beautiful, sad, poignant, and miraculous.
Four years ago our 15 year old son, Steven was diagnosed with Stage Four Osteosarcoma. He had a softball sized tumor in the L (lumbar) 4 region of his spine. The tumor had grown out of his spine and around his sciatic nerve (which was when the pain and cancer revealed itself to him). His pain was excrutiating and he was unable to sit in one spot. In fact he missed about two to three weeks of high school while being unsuccessfully treated with pain medicines and physical therapy (which didn't work!).
During the "waiting period" with pain meds and physial therapy that Aweful tumor was growing in his body and the cells from the tumor metasized into his lungs. To be more precise he had around 30-40 cancer cells in his lungs, plus bloodclots. When we were informed of the nature of his cancer, we were completely overwhelmed and shocked. Our world came to a complete halt. Osteosarcoma? Wasn't that the disease that Ted Kennedy's son had? Don't people die from Osteosarcoma? Didn't I have a cousin that died of that disease? My dad and grandfather died from lung cancer, is there a relationship?
This couldn't be happening to my son!
Our little baby had been diagnosed with a horrendous disease. All we could think about was "were we going to loose our son?" We were beside ourselves.
As we sat in our son's hospital room, my husband Harry and I took turns running into the bathroom to cry and agonize, then throw water on our face, and return to Steven's side with a "calm" expression (joke). As we alternated running to the bathroom, Steven's oncologist would appear and reappear with information and a plan of action. Nurses would enter to ask questions. Residents would enter to ask questions while they examined Steven. Everyone had serious yet friendly expression. We looked into their eyes for answers. I just wanted someone to say to me that our son we would be okay. No one would. They just kept saying they would do everything in their power to help our son. Although I didn't find a great deal of comfort in that, Steven did. (Later, I found that leap of faith on the part of a 15 year old very heartening.)
Although we were impressed with our oncologists knowledge and professionalism, we were unable to truely appreciate it until later. At that moment in time, we were too shocked to appreciate much of anything. Fortunately the care Steve received was first rate, we were confident in our physicians and the hospital we had selected for our son's treatment. (Rainbow Babies and Children's Hospital of Cleveland).
Those first few days were filled with Steven being biopsied, radiated to shrink the painful tumor enough for him to be comfortable, and then drugged with pain meds. During those first few days he had a mediport installed into his chest. (Oh my God, my baby had a port for chemotherepy in his chest!)
All I could think about was the Star Trek episode where unwilling prisoners were be implanted by the Borg. My son now had plastic and metal protruding from his chest just like Borg drone!
The upside of that mediport was that Steven's pain meds could be injected into the port for immediate gratification. Which, as difficult it was to see him medicated with morphine, was a relief to see him relax. A catch-22, if you know what I mean.
During this time I met our assigned clinical nurse practitioner, Barb. Such a wonderful person. Although I really didn't know she was wonderful at the time. All I could remember of our initial meeting was the review of the "family information folder"and the everlasting statement she made to me that will forever ring in my ears: "From this day forward, your life will never be the same." (All I could think of at that time was "but I don't want my life to change, I like my life.")
So, within 30 hours of our son's initial diagnoses of cancer, we knew the type of cancer, the level of severity (very severe and life threatening), that he was eligible for Make-A-Wish, that he would be hospitalized during chemotherapy treatments for 5 - 7 days at a time for the next 10 months, probably have spine surgery, would have radiation, and God Willing at the end of treatment would be cancer free. And oh by the way, he had 20-30 % chance of survival.
So, the day after his initial diagnoses, I called my employer and quit my job. Thank God my husband's employment situation permitted me to do so.
Our journey into the world of cancer had begun. We were now members of a new elite membership. Not a membership that one seeks out, but once a member always a member. Parents of a child with cancer.
Over the last four years I have shared my son's story with family and friends as he went through diagnosis, treatment, remission, life, another diagnoses, more treatment, and (Thank God) remission.
There is nothing light about his story. In fact it is excrutiatingly alive, painful, beautiful, sad, poignant, and miraculous.
Four years ago our 15 year old son, Steven was diagnosed with Stage Four Osteosarcoma. He had a softball sized tumor in the L (lumbar) 4 region of his spine. The tumor had grown out of his spine and around his sciatic nerve (which was when the pain and cancer revealed itself to him). His pain was excrutiating and he was unable to sit in one spot. In fact he missed about two to three weeks of high school while being unsuccessfully treated with pain medicines and physical therapy (which didn't work!).
During the "waiting period" with pain meds and physial therapy that Aweful tumor was growing in his body and the cells from the tumor metasized into his lungs. To be more precise he had around 30-40 cancer cells in his lungs, plus bloodclots. When we were informed of the nature of his cancer, we were completely overwhelmed and shocked. Our world came to a complete halt. Osteosarcoma? Wasn't that the disease that Ted Kennedy's son had? Don't people die from Osteosarcoma? Didn't I have a cousin that died of that disease? My dad and grandfather died from lung cancer, is there a relationship?
This couldn't be happening to my son!
Our little baby had been diagnosed with a horrendous disease. All we could think about was "were we going to loose our son?" We were beside ourselves.
As we sat in our son's hospital room, my husband Harry and I took turns running into the bathroom to cry and agonize, then throw water on our face, and return to Steven's side with a "calm" expression (joke). As we alternated running to the bathroom, Steven's oncologist would appear and reappear with information and a plan of action. Nurses would enter to ask questions. Residents would enter to ask questions while they examined Steven. Everyone had serious yet friendly expression. We looked into their eyes for answers. I just wanted someone to say to me that our son we would be okay. No one would. They just kept saying they would do everything in their power to help our son. Although I didn't find a great deal of comfort in that, Steven did. (Later, I found that leap of faith on the part of a 15 year old very heartening.)
Although we were impressed with our oncologists knowledge and professionalism, we were unable to truely appreciate it until later. At that moment in time, we were too shocked to appreciate much of anything. Fortunately the care Steve received was first rate, we were confident in our physicians and the hospital we had selected for our son's treatment. (Rainbow Babies and Children's Hospital of Cleveland).
Those first few days were filled with Steven being biopsied, radiated to shrink the painful tumor enough for him to be comfortable, and then drugged with pain meds. During those first few days he had a mediport installed into his chest. (Oh my God, my baby had a port for chemotherepy in his chest!)
All I could think about was the Star Trek episode where unwilling prisoners were be implanted by the Borg. My son now had plastic and metal protruding from his chest just like Borg drone!
The upside of that mediport was that Steven's pain meds could be injected into the port for immediate gratification. Which, as difficult it was to see him medicated with morphine, was a relief to see him relax. A catch-22, if you know what I mean.
During this time I met our assigned clinical nurse practitioner, Barb. Such a wonderful person. Although I really didn't know she was wonderful at the time. All I could remember of our initial meeting was the review of the "family information folder"and the everlasting statement she made to me that will forever ring in my ears: "From this day forward, your life will never be the same." (All I could think of at that time was "but I don't want my life to change, I like my life.")
So, within 30 hours of our son's initial diagnoses of cancer, we knew the type of cancer, the level of severity (very severe and life threatening), that he was eligible for Make-A-Wish, that he would be hospitalized during chemotherapy treatments for 5 - 7 days at a time for the next 10 months, probably have spine surgery, would have radiation, and God Willing at the end of treatment would be cancer free. And oh by the way, he had 20-30 % chance of survival.
So, the day after his initial diagnoses, I called my employer and quit my job. Thank God my husband's employment situation permitted me to do so.
Our journey into the world of cancer had begun. We were now members of a new elite membership. Not a membership that one seeks out, but once a member always a member. Parents of a child with cancer.
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