Thursday, December 16, 2010

12/14/2010 CT Scan with Biopsy

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

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
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 :)

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

Monday, November 29, 2010

11/29/2010 - Orthopedic Surgeon

Hello All!

We went to see an orthopedic surgeon today at Texas Children's per our Neurologist request.  I think this was a precautionary doctors visit, to make sure she checks out every possibility.  Dr Phillips had looked over all of our previous MRI's and X-rays and his conclusion is that what ever Cooper has going on it is not an orthopedic problem. 

He believes that if Cooper's problem remained only in his foot or leg, it might have been an orthopedic problem.  However, since there are several other symptoms he believes there is something else going on. 

As we were leaving Texas Children's today we received a call from the Neurosurgeons office, and they are free to see us on Thursday!!!  We were originally told that the doctor would not be available until January, but our wonderful neurologist has been diligent in helping us to find a solution!!!

One possibility that has been suggested to us is Langerhans Cell Histocitosis.  The long and short of it is the body is producing too many of a type of call know as a Langerhans Cell and these cell then attach themselves to the areas on the spine and neck which will create inflammation.  This may explain whatever it is they see on his spine.....

We had a wonderful Thanksgiving here at the Cannon household.  Aunt Shannon came in and spoiled her nephews rotten!! 

We hope everyone had a great Thanksgiving and are enjoying the Holiday season.  Don't forget that Jesus is Reason for the Season!!!

Kirby, Summer, Cooper, and Clyde

Wednesday, November 24, 2010

How it all began 12/25/2009

Hello All,

I have decided to use this blog to document and keep anyone interested upated in all that has been happening with Cooper.  I will use this first blog to start from the beginning, so this will be a very long post.

On Christmas day last year we had all eaten Christmas dinner and I had put Cooper and Clyde down for a nap.  Cooper was leaving with his Dad that afternoon and Uncle Clint and Paw-Paw to go to the new ranch in Colorado.  So I wanted him to get some rest in.  When he woke up from his nap he had a slight limp.  Nothing major, but enough of one to notice.  I called Kirby in and when looked at his knees and ankles for swelling and pushed and twisted on his legs.  He showed no signs of pain or discomfort from us doing this.  I assumed he had twisted his ankle while playing and it was maybe a little tender to pressure, but that was all.  While he went with Kirby to Colorado he developed a small cold.  Kirby treated him with cold medicine and advil and Cooper was fine by the time he returned.  However he still had the limp.

He continued to have this limp for two weeks and I was noticing it becoming more and more noticeable.  So I took him to see his pediatrician.  The doctor did not think it was anything serious but wanted us to get an xray and ordered some bloodwork.  That afternoon he called me and said the xrays looked normal, but his white blood count was very high and wanted us to go immediatly to Texas Childrens Emergency room and have ourselves admitted.  While there they did some more xrays and an MRI of his leg.  Upon no discovery they released us.  I of course asked them about the bloodwork, and they asked if I wanted them to check it again?!?! So I said yes, and they released us before gaining any results. 

So we saw an orthopedic after this who took some more xrays and discovered nothing.  We were being told that kids obtain small fractures all fo the time that can not be seen on xrays and that we just need to give it time and he will heal himself.  Fortunatly our pediatrician was not satisfied with that answer either.  So them we saw a neuologist who scheduled a MRI of Cooper's spine and brain.  We made an appointment for a week later and he said that Cooper MAY have a tethered spinal cord and recommended us to a neurosurgeon. 

Side Note:  Cooper's limp is getting more and more prgressive, he can no longer walk on stairs without assistance and can not run at all.  He walks with his left foot curled under and his right foot turned outward with his toes flaired up.

We walk into the neurosurgeons office and he watches Cooper walk a few feet and says that it is not a tethered spinal cord but something else.  Once he finds out that his SED rate has been more than triple the normal rate he immediatly schedules another MRI.  He believes that Cooper has an epidural abcess which is an infection is his spine.

We complete The MRI that night and the neurosurgeon somes in and says he sees the abcess and immediately admits us into ICU at Memorial Hermann stating that Cooper spine has suffered a stroke and that he might have another one at any moment and be paralyzed.  We end up spending 24 hours in ICU and the dotors them tells us that the radiologist feel that there is nothing in his spine more strongly then he feels there is.  So they send us to the regular hospital rooms at Memorial Hermann.

We spent a total of 6 days at memorial Hermann and after countless testing an orthopedic THINKS he sees where Cooper had and avulsion fracture in his knee.  With that neurology signs off on him and orthopedics proceeds to cast little Cooper from foot to hip and sends us home.

The cast is removed 2 weeks later and we are old he should return to normal shortly.  Of course he does not, and we go to see the original orthopedic who says that he has never seen an avulsion fracture in any of he xrays.  And he sticks to his orignial diagnosis that nothing is wrong and Cooper will correct his walking on his own.

We continue with follow ups with our pediatrician and Coopers walking gets worse.  Then one morning he wakes up and can't crawl out of bed.  "I stuck. I stuck, Mom" he proceeds to tell me.  So i carry him to the living room and sit him in his chair then immediatly call his pediatrician.  The doctor consults the original neurologist and they then consult with the rheumatology department  Texas Chilldrens.  The rheumatology department believes that Cooper mioght have arthritis and schedules and appointment.  Meanwhile, that day our doctor prescribes Naproxen for Cooper. I start him on it that day.  Within two days we see an improvement.  He is walking better and has a better appetite.

Side Note:  During this time, Cooper has been eating next to nothing, not gaining a pound and and lethatgic.  Hi limp has transformed from the outward flared toes to the an inward club foot while his left foot has straighted out.

Rheumatology then sees Cooper and they see inflammation in his knees, and hands.  We are eccstatic because we feel we have a solution.  Not so much.  After a few monthes of treating Cooper they notice the arthritis is under control and he should be regaining mobility and function.  Which he is not.  The rheumatolgy doctors start to belive there is something else going on.  They refer us to genetics as wel as rhuematology.  Genetics reveals nothing.

On November 10th we see Neurology.  After a 2 hour and several doctor examination, and once they realize this has been going on for 11 months, the neurology doctor believes there is something very serious going on but they have never seen anything like it before.  They notice that Cooper has a weakness in his legs, but it is obvious it is not in his muscles. 

The ask us to schedule appointments with  their auditory department to check his ears, their neurosugery department, their optomolgy department, speech and language, and physical therapy.

I received a call last Friday from the neurology doctor asking us to have another spine and brain MRI on Sunday.  She called me Monday witht he results.

They can clearly see there is something on Coopers F1 vertebrae.  This is the the part of the spine at his butt crack.  However they are having a hard time determining exactly what it is.  She is consulting with neurosugery and they will soon be ordering a cat scan to try and see if they can get a more clear picture of what is on this spine.  If the cat scan does not work they will then go in and do a biopsy.  In the mean time we are scheduled to see another orthopedic at Texas Childrens on Monday November 29th.

So this is where we are today.  We Thank everyone for all of the wonderful owrds of encouragement and prayers.  I will try to keep this blog up to date.  We love you all and hope you have a wonderful Thanksgiving!!!

Kirby, Summer, Cooper, and Clyde