This is one of those moments where there's not a lot to say, and yet there is so much to say. Yet, the words don't seem to want to come out of me. I haven't written on my blog for awhile, but that doesn't mean there hasn't been anything to write about. I just don't know how to put my thoughts and feelings into words. It's strange for me, a master of rhetoric.
I started writing this blog because one day, a glass broke in my kitchen and God spoke to me, saying "Your life is going to be like this broken glass. Can you put it back together again?" My response was, "No, God." Then God said, "You can't, but I can."
Well, the glass has hit the floor. It has definitely shattered.
The week before school started, I was running around (like crazy) getting the kids shots updated, sports physicals, paperwork, registrations...etc. Our youngest son has been fighting a bad case of cradle cap (usually found on babies) since he was born. We found out that it's seborrheic dermatitis and we have tried numerous treatments and they have all have failed to eradicate the problem. When starting kindergarten this year in a public school, we were told that the doctor would have to give instructions and information about this problem to the school nurse. We had a follow-up appointment already scheduled and we went to talk about his "cradle cap"...again.
During the time we had been on vacation this summer, my son's doctor left the area and we were set up to see a new doctor. I hate seeing new doctors with a child who has multiple problems because I always feel like we have to start all over and talk about everything ALL OVER AGAIN. However, when we met this doctor, amazingly, he had already reviewed my son's entire chart and he began asking some very different questions than we ever heard before. My son has been diagnosed with seborrheic dermatitis, eczema, asthma, anemia, muscular weakness in his eye, sun-sensitivity and has already had two surgeries by the age of 5. There is not a day in his life when he is not struggling with some physical ailment.
I realize some children just need more medical attention and he just didn't "luck out" when it came to bodies working the way they should.
This appointment was different. The questions the doctor started asking seemed random and I didn't understand the purpose of the questioning. At first, the answers were "no" to many of the questions and then finally, he asked a question to which I gave a resounding "YES!"
He asked, "Is your son thirsty...a lot?"
Now, truth be told, my son can drink more fluids than most adults. He is like a camel. We're not sure where all the fluids go, except he does pee A LOT. We've had him tested for Diabetes and the tests were all negative.
This one answer of "yes" seemed to spark a whole new line of questioning. To which I answered "yes" to all the questions the doctor asked. I knew we were heading somewhere, but I was afraid to know WHERE.
The doctor turns to me and spits out a long name LANGERHANS CELL HISTIOCYTOSIS.
The doctor asks, "Have you ever heard this name before?"
I stared back at him and said, "No...I would remember. I have definitely not heard that name before."
The doctor says, "Well...it seems that your son will need to see a new specialist."
Me..."What kind of specialist?"
(Silence...)
Doctor: "Well, I'm not going to say right now. I need to make a few calls."
At that moment, a word popped into my mind--ONCOLOGIST.
NO!!!!!!!!!!!! (I screamed silently inside myself)
No. No. No. No.
The doctor hands me a small piece of paper with that name written on it.
He says, "Just keep this so you'll become acquainted with this name."
He then tells me (while I am dazed) that my son will need blood tests and a urine test...TODAY.
I gather my things and my other two kids (who were present through all of this) and walk out of the room toward the Lab. I feel like I'm in a shocked daze, like a dream that I want to wake up from, but maybe a bad dream...WHAT did the doctor just say to me?
We got the blood test done while I held down a screaming 5 year old. We got the urine test done--not the easiest task with a 5 year old. Then, we wait...
We had results within 24 hours. His monocytes are elevated and his platelet count is high, along with another number being somewhat high (but I don't know what it means). I'm fighting back continual moments of wanting to just burst into tears spontaneously. Oh wait, I'm starting my counseling internship at an inpatient psychiatric hospital in just a few days....STRESS--FUL. My sister in law is a nurse practitioner and was wonderful with looking at the numbers I showed her and telling me it could be various different things. We are trying our best to just take things as they come, not think too much about the future, and not worry about things until we have something TO worry about. So far, we know things are going wrong in his body, we're just not sure WHAT or HOW MUCH.
We are told that a referral has been made to a hematologist-oncologist because Langerhans is an autoimmune disorder, but it still could be cancer. That dreaded "C-word," I would never want to say in the same sentence with someone's name, much less my child.
I know other parents have gone through. I try to comfort myself by praying and reading the Bible and just crying as I talk to God about it all. I believe in God 100% and trust that all His promises are "yes and amen" in Jesus Christ. Without Him, I would be lost right now.
We are still waiting for answers. The specialist's office is due to call us any day to make an appointment, but they said they need more information from the primary doctor. We are calling and checking, and praying the info. will get there right away. It's so hard to wait when your child's life and health is hanging in the balance.
Yesterday, while I was at work, I received a disturbing call. My husband said my son was taken out of the classroom to the nurse's office because he was having trouble concentrating, following very simple one sentence directions and he attempted to wash his hands in the bathroom with soap and no water and would not respond to calls from the teacher to use water. He was in a daze and not very responsive. The thing about Langerhans (if that's what this is) is that it can affect all systems of the body, or just one system, primarily the skin. He also has anemia and asthma and problems with his eyes. Now, he is showing signs of neurologic problems (possibly).
So...today, back to the doctor's office we go. This time, we are going to be talking about "new symptoms."
When our middle son was a baby, he was diagnosed with epilepsy and a host of other problems. He was never diagnosed with Langerhans, but he went through a lot as a small child. God healed his brain in a bonafide 100% miracle that the doctors could not even understand. We've seen God is a miracle worker with our middle son. Now, we need another miracle for our youngest son.
Prayers are very much appreciated. Pray for our son, but please also pray for his mom, dad, brother and sister. This is a very tough time for us all.
I am continuing to work at my internship doing counseling for acute adults and adolescents. Every day, I have the privilege of counseling people who either want to kill themselves, kill others, or have psychosis. I want to continue to work at this time, and so far, I've been able to separate my work from my home life. It's just a very tough time.
Thank you in advance for your thoughts and prayers. I will be writing more to keep everyone updated.
With greatest love in Jesus Christ...
I started writing this blog because one day, a glass broke in my kitchen and God spoke to me, saying "Your life is going to be like this broken glass. Can you put it back together again?" My response was, "No, God." Then God said, "You can't, but I can."
Well, the glass has hit the floor. It has definitely shattered.
The week before school started, I was running around (like crazy) getting the kids shots updated, sports physicals, paperwork, registrations...etc. Our youngest son has been fighting a bad case of cradle cap (usually found on babies) since he was born. We found out that it's seborrheic dermatitis and we have tried numerous treatments and they have all have failed to eradicate the problem. When starting kindergarten this year in a public school, we were told that the doctor would have to give instructions and information about this problem to the school nurse. We had a follow-up appointment already scheduled and we went to talk about his "cradle cap"...again.
During the time we had been on vacation this summer, my son's doctor left the area and we were set up to see a new doctor. I hate seeing new doctors with a child who has multiple problems because I always feel like we have to start all over and talk about everything ALL OVER AGAIN. However, when we met this doctor, amazingly, he had already reviewed my son's entire chart and he began asking some very different questions than we ever heard before. My son has been diagnosed with seborrheic dermatitis, eczema, asthma, anemia, muscular weakness in his eye, sun-sensitivity and has already had two surgeries by the age of 5. There is not a day in his life when he is not struggling with some physical ailment.
I realize some children just need more medical attention and he just didn't "luck out" when it came to bodies working the way they should.
This appointment was different. The questions the doctor started asking seemed random and I didn't understand the purpose of the questioning. At first, the answers were "no" to many of the questions and then finally, he asked a question to which I gave a resounding "YES!"
He asked, "Is your son thirsty...a lot?"
Now, truth be told, my son can drink more fluids than most adults. He is like a camel. We're not sure where all the fluids go, except he does pee A LOT. We've had him tested for Diabetes and the tests were all negative.
This one answer of "yes" seemed to spark a whole new line of questioning. To which I answered "yes" to all the questions the doctor asked. I knew we were heading somewhere, but I was afraid to know WHERE.
The doctor turns to me and spits out a long name LANGERHANS CELL HISTIOCYTOSIS.
The doctor asks, "Have you ever heard this name before?"
I stared back at him and said, "No...I would remember. I have definitely not heard that name before."
The doctor says, "Well...it seems that your son will need to see a new specialist."
Me..."What kind of specialist?"
(Silence...)
Doctor: "Well, I'm not going to say right now. I need to make a few calls."
At that moment, a word popped into my mind--ONCOLOGIST.
NO!!!!!!!!!!!! (I screamed silently inside myself)
No. No. No. No.
The doctor hands me a small piece of paper with that name written on it.
He says, "Just keep this so you'll become acquainted with this name."
He then tells me (while I am dazed) that my son will need blood tests and a urine test...TODAY.
I gather my things and my other two kids (who were present through all of this) and walk out of the room toward the Lab. I feel like I'm in a shocked daze, like a dream that I want to wake up from, but maybe a bad dream...WHAT did the doctor just say to me?
We got the blood test done while I held down a screaming 5 year old. We got the urine test done--not the easiest task with a 5 year old. Then, we wait...
We had results within 24 hours. His monocytes are elevated and his platelet count is high, along with another number being somewhat high (but I don't know what it means). I'm fighting back continual moments of wanting to just burst into tears spontaneously. Oh wait, I'm starting my counseling internship at an inpatient psychiatric hospital in just a few days....STRESS--FUL. My sister in law is a nurse practitioner and was wonderful with looking at the numbers I showed her and telling me it could be various different things. We are trying our best to just take things as they come, not think too much about the future, and not worry about things until we have something TO worry about. So far, we know things are going wrong in his body, we're just not sure WHAT or HOW MUCH.
We are told that a referral has been made to a hematologist-oncologist because Langerhans is an autoimmune disorder, but it still could be cancer. That dreaded "C-word," I would never want to say in the same sentence with someone's name, much less my child.
I know other parents have gone through. I try to comfort myself by praying and reading the Bible and just crying as I talk to God about it all. I believe in God 100% and trust that all His promises are "yes and amen" in Jesus Christ. Without Him, I would be lost right now.
We are still waiting for answers. The specialist's office is due to call us any day to make an appointment, but they said they need more information from the primary doctor. We are calling and checking, and praying the info. will get there right away. It's so hard to wait when your child's life and health is hanging in the balance.
Yesterday, while I was at work, I received a disturbing call. My husband said my son was taken out of the classroom to the nurse's office because he was having trouble concentrating, following very simple one sentence directions and he attempted to wash his hands in the bathroom with soap and no water and would not respond to calls from the teacher to use water. He was in a daze and not very responsive. The thing about Langerhans (if that's what this is) is that it can affect all systems of the body, or just one system, primarily the skin. He also has anemia and asthma and problems with his eyes. Now, he is showing signs of neurologic problems (possibly).
So...today, back to the doctor's office we go. This time, we are going to be talking about "new symptoms."
When our middle son was a baby, he was diagnosed with epilepsy and a host of other problems. He was never diagnosed with Langerhans, but he went through a lot as a small child. God healed his brain in a bonafide 100% miracle that the doctors could not even understand. We've seen God is a miracle worker with our middle son. Now, we need another miracle for our youngest son.
Prayers are very much appreciated. Pray for our son, but please also pray for his mom, dad, brother and sister. This is a very tough time for us all.
I am continuing to work at my internship doing counseling for acute adults and adolescents. Every day, I have the privilege of counseling people who either want to kill themselves, kill others, or have psychosis. I want to continue to work at this time, and so far, I've been able to separate my work from my home life. It's just a very tough time.
Thank you in advance for your thoughts and prayers. I will be writing more to keep everyone updated.
With greatest love in Jesus Christ...
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