Hello Again,
I know that I said I was going to post about Cooper's CT Scan yesterday, but time slipped away from me.
We went on Tuesday for the CT Scan with the biopsy. They asked us to be there at 6:30am to prepare for the 8 am scheduled time. As we were waiting they then informed us that they had a brna dnew Ct machine and given Cooper's mysterious problems they would like for him to be the first to use it. However, it would not be ready until noon...........Well after assuring me they would be able to perform the procedure accuartly on a new machine and there was no chance of needing a re do, I agreed to use the new ct scanner. so to kill time, me and daddy loaded Cooper up and took him to the Houston Museum of Natural Science to look at dinosaurs.
We came back and they sedated Cooper for his scan and biopsy. With the biopsy they cut a small hole in his back, inserted a needle, guided by the ct scanner, and drew samples of bone out of his s1 vertebrea on his back. They also drew a few extra samples for the hemotologists research study. They said the results should be back in a bout 72 hours. So now we wait.
Today we had a check up with the rheumatologist as well as saw the audiology department to check his ears. Again the rheumatologist see no active signs of arthritis and he has been off of the medicine since October.
The hearing test went really well. Cooper cooperated with teverything and they said that his hearing is great.
I apologize if this blog is not very detailed. I am fighting a cold myself these days and am trying my best to recover from it.
Love Always,
The Cannon's
Thursday, December 16, 2010
Friday, December 10, 2010
12/10/2010 - Speech Therapy and the Hemotologist
Merry Christmas,
We have finally made it to Friday and what a week it has been!!!
Yesterday we went to the speech therapist and to make a long story short, Cooper is about a year behind in his speeh and lanuage and they are recommending us to speech therapy. I will follow up on this, but would like to wait and see the overall diagnosis on him before commiting to a speech therapy program.
Last night my heart was broken into a million pieces. As we were winding down from the day, the boys had eaten their dinner and were watching cartoons and playing through out the house. Clyde was especially wound up and was just running all over the house. He was running around the coffee table, into the playroom, back through the living room and into the kitchen. He was doing this for about 20 minutes and showing no signs of slowing down. Cooper saw what fun his bubba was having, so he dicided to get up and runn around with him. As he was trying to chase after Clyde he realized he could not keep up and sat on the floor in the middle of the living room. He then looked at me and said "Ma, I can't run." This was the first time he has acknowledged that he can't run. Before he was always trying to run and tells me how fast he is. He has now realized he can not keep up with his brother. But don't you worry, because Momma scooped him up and started running around chasing Clyde and jumping over things, and Cooper was just laughing his head off. I don't care if he's 25, I will still figure out a way to run with him!!
Today was the appointment with the hemotologist. He siad that the bone scan came back negative, which means they did not find anything. This is good news. He asked me several questions about Cooper's developement. He asked me about skin problems and if Cooper has cradel cap. I said yes, and he asked me how long, and I know that he had cradel cap up to 9 months, if not longer. Come to find out this is an indicator for Langerhans Cell Histocytosis (LCH).
(Copied from childrenshospital.org)
Langerhans cell histiocytosis is a rare disorder that occurs when there are too many of a type of white blood cell called a Langerhans cell (named for a German scientist). These cells normally reside in the skin and help fight infections and destroy certain foreign substances in the body. In LCH, these cells accumulate on bones and other parts of the body, particularly the head and neck, causing a wide range of problems. LCH can also be found in the ribs, sternum, long bones of the arms and legs, vertebra of the spine, and the pelvis. Although LCH can occur in people of all ages, a majority of cases occur in children under 10 years old.
We do not know a diagnosis, but LCH is at the top of our list as possiblities at this point. We will have a CT scan with a biopsy on Tuesday, but they believe that they will probably have to obtain a larger sample and will ultimatly do surgery to get it.
So we are still in the waiting phase. The good but scary thing is that we seem to be getting very close to a diagnosis. Something that we can start treating.
We will keep you posted as we find more out.
Love Always,
Summer and Cooper
We have finally made it to Friday and what a week it has been!!!
Yesterday we went to the speech therapist and to make a long story short, Cooper is about a year behind in his speeh and lanuage and they are recommending us to speech therapy. I will follow up on this, but would like to wait and see the overall diagnosis on him before commiting to a speech therapy program.
Last night my heart was broken into a million pieces. As we were winding down from the day, the boys had eaten their dinner and were watching cartoons and playing through out the house. Clyde was especially wound up and was just running all over the house. He was running around the coffee table, into the playroom, back through the living room and into the kitchen. He was doing this for about 20 minutes and showing no signs of slowing down. Cooper saw what fun his bubba was having, so he dicided to get up and runn around with him. As he was trying to chase after Clyde he realized he could not keep up and sat on the floor in the middle of the living room. He then looked at me and said "Ma, I can't run." This was the first time he has acknowledged that he can't run. Before he was always trying to run and tells me how fast he is. He has now realized he can not keep up with his brother. But don't you worry, because Momma scooped him up and started running around chasing Clyde and jumping over things, and Cooper was just laughing his head off. I don't care if he's 25, I will still figure out a way to run with him!!
Today was the appointment with the hemotologist. He siad that the bone scan came back negative, which means they did not find anything. This is good news. He asked me several questions about Cooper's developement. He asked me about skin problems and if Cooper has cradel cap. I said yes, and he asked me how long, and I know that he had cradel cap up to 9 months, if not longer. Come to find out this is an indicator for Langerhans Cell Histocytosis (LCH).
(Copied from childrenshospital.org)
Langerhans cell histiocytosis is a rare disorder that occurs when there are too many of a type of white blood cell called a Langerhans cell (named for a German scientist). These cells normally reside in the skin and help fight infections and destroy certain foreign substances in the body. In LCH, these cells accumulate on bones and other parts of the body, particularly the head and neck, causing a wide range of problems. LCH can also be found in the ribs, sternum, long bones of the arms and legs, vertebra of the spine, and the pelvis. Although LCH can occur in people of all ages, a majority of cases occur in children under 10 years old.
We do not know a diagnosis, but LCH is at the top of our list as possiblities at this point. We will have a CT scan with a biopsy on Tuesday, but they believe that they will probably have to obtain a larger sample and will ultimatly do surgery to get it.
So we are still in the waiting phase. The good but scary thing is that we seem to be getting very close to a diagnosis. Something that we can start treating.
We will keep you posted as we find more out.
Love Always,
Summer and Cooper
Wednesday, December 8, 2010
12/7/2010 Bone Scan Day
Well Pearl Harbor day was a long day for us this year.
We were scheduled for a Bone Scan and CT Scan with biopsy on December 30th. They went ahead and moved the bone scan to the 7th. I tried to get them to do both but they could not get them both on the same day.
If anyone is not familiar with a bone, I am just copying and pasting an explanation I found on another website :
A bone scan is a nuclear scanning test that identifies new areas of bone growth or breakdown. It can be done to evaluate damage to the bones, find cancer that has spread (metastasized) to the bones, and monitor conditions that can affect the bones (including infection and trauma). A bone scan can often find a problem days to months earlier than a regular X-ray test.
For a bone scan, a radioactive tracer substance is injected into a vein in the arm. The tracer then travels through the bloodstream and into the bones. This process may take several hours. A special camera (gamma) takes pictures of the tracer in the bones. This helps show cell activity and function in the bones. Areas that absorb little or no amount of tracer appear as dark or "cold" spots, which may indicate a lack of blood supply to the bone (bone infarction) or the presence of certain types of cancer. Areas of rapid bone growth or repair absorb increased amounts of the tracer and show up as bright or "hot" spots in the pictures. Hot spots may indicate problems such as arthritis, the presence of a tumor, a fracture, or an infection.
A bone scan may be done on the entire body or just a part of it.
What we were lookign for specifically is any lesions that may be occuring on his bones that are associated woth Langerhans Cell Histcytosis. I would go into more detail as to what that is, however we still do not know what he has, and I do not want anyone to think we have a diagnosis. This is just a possiblity we are testing for.
So we first had to check in and head to the basement of Texas Children's. They did not do the first IV correctly, so they had to re-stick him, and he was screaming bloody murder. Poor Baby. We then had to wait for the radioactive injection to circulate through out his body, and we waited and waited and waited. Finally they called us in and sedated him for the test. The whole test took about an hour, as it was a full body test.
When the procedure was finally complete and he he was monitored in recovery they let us go home. This was at 4:50pm, so we then had the joy of rush hour traffic. We finally made it home after this long long day and I was nice enough to then close the car door on little Cooper's fingers. Luckily, ther ewas no severe damage, just some squished fingers.
Today he woke up in a great mood and crawled in bed with me. He is happy and active.
Our week is not over. The doctors believe Cooper is behind in his speech and laguage, so we go to speech therapy on Thursday to assess is abilities and determine if there is a physical problem as to why he may be behind. On Friday we will be seeing the hemotologist. I suspect we will hear the results of the bone scan any day, howver, if we do not, I know the hemotologist will be able to tell us whether they saw anything or not.
So that's where we are at today. Who knows where we will be tomorrow :)
XOXO,
Summer and Cooper
We were scheduled for a Bone Scan and CT Scan with biopsy on December 30th. They went ahead and moved the bone scan to the 7th. I tried to get them to do both but they could not get them both on the same day.
If anyone is not familiar with a bone, I am just copying and pasting an explanation I found on another website :
A bone scan is a nuclear scanning test that identifies new areas of bone growth or breakdown. It can be done to evaluate damage to the bones, find cancer that has spread (metastasized) to the bones, and monitor conditions that can affect the bones (including infection and trauma). A bone scan can often find a problem days to months earlier than a regular X-ray test.
For a bone scan, a radioactive tracer substance is injected into a vein in the arm. The tracer then travels through the bloodstream and into the bones. This process may take several hours. A special camera (gamma) takes pictures of the tracer in the bones. This helps show cell activity and function in the bones. Areas that absorb little or no amount of tracer appear as dark or "cold" spots, which may indicate a lack of blood supply to the bone (bone infarction) or the presence of certain types of cancer. Areas of rapid bone growth or repair absorb increased amounts of the tracer and show up as bright or "hot" spots in the pictures. Hot spots may indicate problems such as arthritis, the presence of a tumor, a fracture, or an infection.
A bone scan may be done on the entire body or just a part of it.
What we were lookign for specifically is any lesions that may be occuring on his bones that are associated woth Langerhans Cell Histcytosis. I would go into more detail as to what that is, however we still do not know what he has, and I do not want anyone to think we have a diagnosis. This is just a possiblity we are testing for.
So we first had to check in and head to the basement of Texas Children's. They did not do the first IV correctly, so they had to re-stick him, and he was screaming bloody murder. Poor Baby. We then had to wait for the radioactive injection to circulate through out his body, and we waited and waited and waited. Finally they called us in and sedated him for the test. The whole test took about an hour, as it was a full body test.
When the procedure was finally complete and he he was monitored in recovery they let us go home. This was at 4:50pm, so we then had the joy of rush hour traffic. We finally made it home after this long long day and I was nice enough to then close the car door on little Cooper's fingers. Luckily, ther ewas no severe damage, just some squished fingers.
Today he woke up in a great mood and crawled in bed with me. He is happy and active.
Our week is not over. The doctors believe Cooper is behind in his speech and laguage, so we go to speech therapy on Thursday to assess is abilities and determine if there is a physical problem as to why he may be behind. On Friday we will be seeing the hemotologist. I suspect we will hear the results of the bone scan any day, howver, if we do not, I know the hemotologist will be able to tell us whether they saw anything or not.
So that's where we are at today. Who knows where we will be tomorrow :)
XOXO,
Summer and Cooper
Friday, December 3, 2010
12/2/2010 The Neurosurgeon
Hello All,
We hope everyone is doing well. We are super busy with doctors appointments and testing these days, which is wonderful because we might actually get some answers.
On Thursday we went and saw the neurosurgeon. While in his office he pulled up the MRI images and showed us what they were looking at. They showed us his tail bone and how there was no connecting tissue, thus no tether spinal cord. Then they showed us how all his vertebra were one color, then his s1 vertebra was a completely different shade then all of the others. They believe this is possibly the problem.
They are scheduling us for a bone scan as well as a CT scan. Since Cooper will need to be sedated for these they are going to use the CT scan to take a biopsy of the vertebra. The neurosurgeon warned us that they may still need to do open surgery to get a larger portion of bone. But we will wait and see.
They would like all of these test to be complete be fore we go see the hematologist on Friday. The hematologist make look over all of the testing and have some sort of answers for us and we will not have to have the open surgery.
Hopefully this will all come to an end soon. Cooper has moments where he can not walk or stand for 15-20 minutes and it is so hard to hear him tell me his feet are "broke". But then an hour later be wrestling with his Bubba just fine.
We are keeping our prayers strong, and are a mix of excitment and nervousness for the answers that may soon come.
Thank you to everyone who has been following Cooper and praying. We could not ask for a better group of friends and family!!
Love Always,
Kirby, Summer, Cooper, and Clyde
We hope everyone is doing well. We are super busy with doctors appointments and testing these days, which is wonderful because we might actually get some answers.
On Thursday we went and saw the neurosurgeon. While in his office he pulled up the MRI images and showed us what they were looking at. They showed us his tail bone and how there was no connecting tissue, thus no tether spinal cord. Then they showed us how all his vertebra were one color, then his s1 vertebra was a completely different shade then all of the others. They believe this is possibly the problem.
They are scheduling us for a bone scan as well as a CT scan. Since Cooper will need to be sedated for these they are going to use the CT scan to take a biopsy of the vertebra. The neurosurgeon warned us that they may still need to do open surgery to get a larger portion of bone. But we will wait and see.
They would like all of these test to be complete be fore we go see the hematologist on Friday. The hematologist make look over all of the testing and have some sort of answers for us and we will not have to have the open surgery.
Hopefully this will all come to an end soon. Cooper has moments where he can not walk or stand for 15-20 minutes and it is so hard to hear him tell me his feet are "broke". But then an hour later be wrestling with his Bubba just fine.
We are keeping our prayers strong, and are a mix of excitment and nervousness for the answers that may soon come.
Thank you to everyone who has been following Cooper and praying. We could not ask for a better group of friends and family!!
Love Always,
Kirby, Summer, Cooper, and Clyde
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