C
CHCSurvivor
Guest
This is going to be dreadfully long, but I felt it was time to share my testimony with people. I realized that people who have known for years still do not know my full story. You all have become an online family so here goes the story of God's healing and miracles in my life. Let me just say, I've had a weird life so far from 1990! LOL.
I was born with a genetic disorder called Stickler's Syndrome. Stickler's Syndrome is a condition where my body does not create enough of a collagen-11 gene, if that makes any sense at all (most of the time it doesn't to me!). Basically, it causes arthritis in the joints, hearing loss, vision impairments, and cleft palates. My mother and I were both born with a cleft palate (my mother's was worse). So, when I was a year old, they repaired my cleft palate. Then, when I was 22 months old, I was taken to the doctor for what they thought was pneumonia or croup. I had a cough that sounded much like a raspy seal bark. After some tests, the doctor reccommended that my parents take me to a pulmonologist at Akron Children's Hospital here in Ohio, where I was diagnosed with a rare and aggressive form of childhood lung cancer called Pleuropulmonary Blastoma (PPB). This has affected 4 children in the state of Ohio and 750 total children in the past 20 years. I underwent extensive chemotherapy treatments for 15 months. I was diagnosed in June of 1992 and went into remission cancer-free in September of 1993. As of this September, I am hereby 18 years cancer-free, praise the Lord! Funny thing about this cancer, I was researching information online about it and came across the website of a little boy named Elijah who just lived an hour from me and was the 4th case of PPB at ACH. Long story short, his mother and I talked online, we met in person, now Elijah and his brother Isaiah are my Godsons - I am blessed! In 1994-1996, I had surgeries for ear tubes, a cataract in my right eye, and detached retina. Scar tissue occurred which took the sight completely in my right eyes, so I have been blind in the right side for the past 16 years.
My parents separated in 2000 and divorced in 2003 while my father moved in with my godmother; they got married in 2004 and my mother remarried to my stepfather in 2005. I had a long, hard road to come down as far as that's concerned but God has been working it all out and I'm slowly coming to where I can accept everything and work around it. My health adventures began again in 2003, when I was 13. I had noticed that I was having hot flashes at night, abnormal anger flare-ups, and things just didn't seem right. I don't remember the whole process, but I do remember spending a whole day up at Akron Children's being tested for this, that, and everything they could think of from hypothyroidism to early premenopause. It ended up being a tumor about the size of a baseball on my left ovary that was causing a hormonal imbalance, among other things. I was diagnosed with the tumor on November 23, 2003 and on November 25, 2003 I had the surgery to remove it. I remember those dates clearly because I was watching the Macy's Thanksgiving Parade over turkey and mashed potato in the hospital on the 26th, and I was released to go home the 27th. The tumor ended up being benign, which we were very thrilled about, and it was directly caused by the type of chemotherapy I had had from my cancer. Since then, things have gone back to normal and my system is on track for the most part.
Then, in late February 2004, I was sitting in my English classroom looking out the window (yes, I was daydreaming instead of listening to the teacher - LOL). I noticed that it seemed sort of cloudy outside. Normally, there was one telephone pole you could see out the window. That day, though, there were two! I kept watching, and things became cloudier and cloudier. I took off my glasses and made sure they were clean and things were still weird. I changed classes per my schedule and by the time I got to my math class, I couldn't see anything. It all happened within a matter of 15 minutes! I asked to be excused and I went to the office; I told them I could not see. The secretary did not understand what I meant and told me to wait until I got home to have Mom take me to an eye doctor. We lived in an apartment building on a busy street near the school so I walked to and from every day. Unfortunately, my mother does not drive therefore I had to walk home that day, too. My vision was to the point (by the time school let out) that I could only see fuzzy shapes in front of my face. To walk home I had to focus only on the white line on the side of the road; I knew if it was on my left I would fall into the ditch and if it was on my right I knew I would be in the way of traffic, so I did my best to keep it in the middle of my line of cloudiness. Mom took me to the eye doctor that day, and he said that my cataract had moved from peripheral (sp) over my eye in just that short amount of time. I was out of school from March 1st to April 7th, 2004 due to temporary blindness. They did the surgery to take off the cataract on March 23, 2004. The pressure shot up in my eye after surgery so I spent a day and a half in excruciating pain, sickness, and popping pain pills (my mom wouldn't let me but I wanted to sooo badly). Now, though, I have 20/20 vision with bifocals, praise the Lord!
Since 2004, my health has for the most part slowed down. I had surgery in 2005 to have a (this sound gross, I know) choroidal hamartoma removed from my nasal passages. That is basically bone and cartilege that had built up and made it impossible for me to breathe. You can imagine how exciting (and also bad) it was to regain my sense of smell and breathe through my nose after all those years (I earned an article in a medical journal and study at Mayo Clinic for that one!). Those, aside from seven teeth surgically extracted, were enough surgeries for me to last a lifetime! I was diagnosed officially with the Stickler's in 2006 and in 2009, I switched to my own primary doctor, who tested to make sure everything was as it should be. To this day, I am diagnosed with a 14% curvature of the spine for scoliosis, a schmorl's node in my thoractic spine (triangular vertabrae which causes a wedged disc), Stickler's Syndrome, Acid Reflux Disease, heart palpitations, and Carpal Tunnel. I also have undiagnosed short-term memory loss and a different form of ADD and OCD.
I say all this not to complain about my health issues but to praise the Lord. This is why I am starting a ministry, this is why I am reaching out to people, and this is why I have compassion, humility, and empathy for people going through trials in their lives. This is only the physical part of my testimony - I am still working on the spiritual and emotional part! God has been so good to me and I cannot wait to see what else He holds in store for me in my lifetime. There is still a slight fear on the very backburner of my brain that I will again one day have to live through a period of cancer, but I step in faith and believe in the Lord that that day will NEVER come. Hallelujah!
I was born with a genetic disorder called Stickler's Syndrome. Stickler's Syndrome is a condition where my body does not create enough of a collagen-11 gene, if that makes any sense at all (most of the time it doesn't to me!). Basically, it causes arthritis in the joints, hearing loss, vision impairments, and cleft palates. My mother and I were both born with a cleft palate (my mother's was worse). So, when I was a year old, they repaired my cleft palate. Then, when I was 22 months old, I was taken to the doctor for what they thought was pneumonia or croup. I had a cough that sounded much like a raspy seal bark. After some tests, the doctor reccommended that my parents take me to a pulmonologist at Akron Children's Hospital here in Ohio, where I was diagnosed with a rare and aggressive form of childhood lung cancer called Pleuropulmonary Blastoma (PPB). This has affected 4 children in the state of Ohio and 750 total children in the past 20 years. I underwent extensive chemotherapy treatments for 15 months. I was diagnosed in June of 1992 and went into remission cancer-free in September of 1993. As of this September, I am hereby 18 years cancer-free, praise the Lord! Funny thing about this cancer, I was researching information online about it and came across the website of a little boy named Elijah who just lived an hour from me and was the 4th case of PPB at ACH. Long story short, his mother and I talked online, we met in person, now Elijah and his brother Isaiah are my Godsons - I am blessed! In 1994-1996, I had surgeries for ear tubes, a cataract in my right eye, and detached retina. Scar tissue occurred which took the sight completely in my right eyes, so I have been blind in the right side for the past 16 years.
My parents separated in 2000 and divorced in 2003 while my father moved in with my godmother; they got married in 2004 and my mother remarried to my stepfather in 2005. I had a long, hard road to come down as far as that's concerned but God has been working it all out and I'm slowly coming to where I can accept everything and work around it. My health adventures began again in 2003, when I was 13. I had noticed that I was having hot flashes at night, abnormal anger flare-ups, and things just didn't seem right. I don't remember the whole process, but I do remember spending a whole day up at Akron Children's being tested for this, that, and everything they could think of from hypothyroidism to early premenopause. It ended up being a tumor about the size of a baseball on my left ovary that was causing a hormonal imbalance, among other things. I was diagnosed with the tumor on November 23, 2003 and on November 25, 2003 I had the surgery to remove it. I remember those dates clearly because I was watching the Macy's Thanksgiving Parade over turkey and mashed potato in the hospital on the 26th, and I was released to go home the 27th. The tumor ended up being benign, which we were very thrilled about, and it was directly caused by the type of chemotherapy I had had from my cancer. Since then, things have gone back to normal and my system is on track for the most part.
Then, in late February 2004, I was sitting in my English classroom looking out the window (yes, I was daydreaming instead of listening to the teacher - LOL). I noticed that it seemed sort of cloudy outside. Normally, there was one telephone pole you could see out the window. That day, though, there were two! I kept watching, and things became cloudier and cloudier. I took off my glasses and made sure they were clean and things were still weird. I changed classes per my schedule and by the time I got to my math class, I couldn't see anything. It all happened within a matter of 15 minutes! I asked to be excused and I went to the office; I told them I could not see. The secretary did not understand what I meant and told me to wait until I got home to have Mom take me to an eye doctor. We lived in an apartment building on a busy street near the school so I walked to and from every day. Unfortunately, my mother does not drive therefore I had to walk home that day, too. My vision was to the point (by the time school let out) that I could only see fuzzy shapes in front of my face. To walk home I had to focus only on the white line on the side of the road; I knew if it was on my left I would fall into the ditch and if it was on my right I knew I would be in the way of traffic, so I did my best to keep it in the middle of my line of cloudiness. Mom took me to the eye doctor that day, and he said that my cataract had moved from peripheral (sp) over my eye in just that short amount of time. I was out of school from March 1st to April 7th, 2004 due to temporary blindness. They did the surgery to take off the cataract on March 23, 2004. The pressure shot up in my eye after surgery so I spent a day and a half in excruciating pain, sickness, and popping pain pills (my mom wouldn't let me but I wanted to sooo badly). Now, though, I have 20/20 vision with bifocals, praise the Lord!
Since 2004, my health has for the most part slowed down. I had surgery in 2005 to have a (this sound gross, I know) choroidal hamartoma removed from my nasal passages. That is basically bone and cartilege that had built up and made it impossible for me to breathe. You can imagine how exciting (and also bad) it was to regain my sense of smell and breathe through my nose after all those years (I earned an article in a medical journal and study at Mayo Clinic for that one!). Those, aside from seven teeth surgically extracted, were enough surgeries for me to last a lifetime! I was diagnosed officially with the Stickler's in 2006 and in 2009, I switched to my own primary doctor, who tested to make sure everything was as it should be. To this day, I am diagnosed with a 14% curvature of the spine for scoliosis, a schmorl's node in my thoractic spine (triangular vertabrae which causes a wedged disc), Stickler's Syndrome, Acid Reflux Disease, heart palpitations, and Carpal Tunnel. I also have undiagnosed short-term memory loss and a different form of ADD and OCD.
I say all this not to complain about my health issues but to praise the Lord. This is why I am starting a ministry, this is why I am reaching out to people, and this is why I have compassion, humility, and empathy for people going through trials in their lives. This is only the physical part of my testimony - I am still working on the spiritual and emotional part! God has been so good to me and I cannot wait to see what else He holds in store for me in my lifetime. There is still a slight fear on the very backburner of my brain that I will again one day have to live through a period of cancer, but I step in faith and believe in the Lord that that day will NEVER come. Hallelujah!
