Friday, November 30, 2012

End of the year update:

Hello to All our Friends and Family,

I keep forgetting to remember to post updates on here :)  We are not much further then we were in my last post.  Cooper is still receiving Remicade Infusion every 4 weeks at Texas Children's Hospital and we go to the Katy location which is much closer and more convenient. 

We have tried to extend the time between treatments to 5 weeks, but Cooper's symptoms are too strong.  I have just finished writing an appeal to our insurance company who denied a claim for $2500 claiming it was "experimental".  The claim was a blood test we had done right before Cooper received his September infusion to determine how much Remicade was still in his system since his symptoms would begin at 3.5 weeks.  It's results would tell us if we needed to up his Remicade dosage or start looking into different treatment methods.  Does that sound experimental???!!!

Anyways, we have begun to move towards a gluten free diet.  I must suggest that if it is not necessary, don't try it.  It's not fun and very little is tasty, especially to a 5 year old!!

Cooper and Clyde are in school together at Waller Christian Academy and they love it as well as Kirby and I.  Cooper is only in kindergarten and he is beginning to read, tell time, do math, and so much more!!  I am amazed at how much he is learning.  Clyde is so proud to go to school with his big brother and he is so smart and tries so hard at all of his school work!

Hattie Mae is 7 months and awesome!  We are not sleeping through the night yet, but her cuteness makes up for the loss of sleep :)  And Cooper is such a proud big brother to her!  He has to tell her Good Morning everyday and give her a kiss.

Thanks for taking a moment to catch up with The Cannons!!

Love,
Kirby, Summer, Cooper, Clyde, and Hattie

Wednesday, May 23, 2012

Crohn's and CRMO for the unforeseeable future

Hello Friends and Family!!

It has been awhile  since my last post so I just wanted to send a brief update.

We are still on the Remicade infusions and the hardest part is the initial placing of the IV.  There is no calming him down or talking him through it.  We just have to hold him down and get the IV started as fast as possible.  The nurses still try to calm him by talking him through the injection, but he already knows what is going to happen, that's why he is so upset to begin with.

A little over a month ago I felt like a horrible mother.  I had been holding off on Cooper's Remicade infusion since I was convinced in my own mind that he did not have Crohn's Disease and we only needed to be treating him for the CRMO.  After about 6 weeks his Crohn's symptoms came back and came back strong.  I noticed them on a Thursday and could not get an appointment for the next Remicade Infusion until the next Tuesday.  He felt terrible all weekend and was complaining of stomach pain and would not eat.  I felt like such a shitty Mom, 1. because my son was in so much pain and it was my fault and 2. because my instincts were wrong and he does have Crohn's Disease. Luckily the infusion offers almost immediate relief.

So after this new revelation and my acceptance that he does in fact have Crohn's Disease, we saw his rheumatologist who has spoke with his GI doctor and they have determined Coopers main disease is Crohn's with the CRMO being symptomatic of the Crohn's.  We will be treating him with Remicade for an indefinite period maybe for the rest of his life.  We just received our most recent bill form his last Remicade infusion and our out of pocket cost each time he goes is $1,045.  and right now we are going every 4 weeks.  Anyone want to buy a kidney? LOL!!  Just kidding.

Cooper is doing great on the Remicade.  He is eating great, his walking and leg strength is the best it has ever been,  he has lots of energy and seems to be and over all happier kid.  I couldn't ask for more.  So we are taking it day by day, infusion by infusion  and this looks like our course in life for the unforeseeable future.

Thank you all for taking the time to read our blog and for caring for Cooper.

Love and God Bless,
The Cannon Family

Thursday, February 16, 2012

Remicade is our new journey.

Dear God,

It's me again.  LOL.  This is how it feels sometimes when me and God have our talks.  I know he has a plan and I trust him and the path he has for me and my family.  Our path is just starting to look like Kansas during crop season.  Nothing but the same thing for miles and miles, never knowing if and when the scenery will change.  There's that part of me that doesn't want the scenery to change, because I know there could always be something worse up ahead.

Cooper took his last Remicade infusions on January 13th.  We then went for a follow up appointment with his Rheumatology doctor.  The appointment went great and the doctor said Cooper was doing really well.  The she said something that really caught me off guard.  She asked me "Have we registered Cooper for the Make a Wish Foundation, yet?"  I was shocked for 2 reasons, one I thought the appointment went really well and Cooper showed much improvement since the last time they saw him, and 2 I did not think his condition was a Make a Wish qualifying condition.  So of course I asked "I thought that was more for people with terminal illness."  To which the doctor replied "Cooper condition is considered incurable and life threatening."  This came as such a shock to me all I could answer was "OK".  So that kind of rocked my foundation a little bit.

Cooper was doing well until a two weeks ago, when Kirby and I noticed he was starting to walk with a limp again, his appetite began waning, and he started scratching at his face and arms leaving these scabs.  These are typical behaviors for when he is starting to have a "flare up".  So we saw his gastrointestinal doctor on February 8th and explained his stomach and bowels have been normal, but these CRMO problems had started showing again.  GI and Rheumatology have several patients together and often confer over them, so she spoke with our other doctors and rather than put Cooper on another medicine, we will just increase the frequency of his Remicade infusions.  So we went yesterday for another infusion.

Side note:  Bless Coopers heart, but every time we have the infusions, it is getting harder and harder for them to find a good vein.  They poked him 3 times yesterday before they finally used an ultrasound machine to help them find a good vein and guide the needle through it.

So we will see how he is doing with the Remicade and have another Rheumatology appointment on March 8th.  Remicade is an overwhelming drug, because although it does help with the inflammation, he is so much more susceptible to the common cold and the flu, and they are much harder on him, because his immune system is not strong enough to fight them off.

So please keep praying for Cooper and that he can stay healthy during the cold and flu season.  Also, pray that the doctors can think of another drug or return back to the Enbrel so Cooper does not have to have so many IV's in his little veins.

Thanks you and God Bless.
The Cannon Family

Wednesday, January 11, 2012

We're still trucking along...

It's been about 6 months since my last post.  I would say not a lot has happened, but that may be because this has become such a part of our everyday lives, that it would feel wrong not to have so many doctors visits, tests, and medications...

Cooper is still diagnosed with CRMO (chronic recurrent multi focal osteomyelitis)  and has been doing really good on the steroids and Enbrel shots.  Then at the beginning of October he developed extreme bloody diarrhea.  I took him to his pediatrician who placed him on antibiotics.  It took a full week of treatment, but it seemed to work.  Then about 3 weeks later, the bloody diarrhea came back.  I knew that something more was wrong, so I contacted his rheumatologist and she recommended us to Texas Children's Gastrointestinal team. 

We met with the GI doctor who felt that Cooper just had a bacteria that needed to be cleaned up.  We took blood and stool samples which all came back good.  So then we scheduled a colonoscopy and EGD.  Meanwhile, Cooper still has bloody diarrhea.  Immediately after the colonoscopy the doctor told us his colon was so inflamed they could not complete the procedure because any slight movement caused bleeding and further damage.  Late November we received the results that not only Cooper's colon was inflamed, but his stomach and duodenum was as well.  This lead to a diagnosis of Crohn's Disease.  Along with the inflammation, they discovered a bacteria in his stomach called H-Pylori.  This is a bacteria most of us have however, it was over reactive in Cooper.  They also discovered some allergen cells inside his throat.  So we will be test for allergies later.

To clear up the bacteria in his stomach they placed on strong antibiotics.  Because he was so inflamed in his colon and stomach they prescribed us for a 4 week treatment of steroids through an IV.  We're not sure which one worked, but Cooper's stomach problems have been cleared up and have not come back since.

Since Crohns Disease and CRMO are both inflammation problems they both can be treated with a biologic drug such as Enbrel.  However, Enbrel is helpful for the CRMO, but not as much with the Crohn's.  So we have been switched to Remicade which Cooper is given through an IV every other week.  We have gone through 2 treatments and will have another one this Friday.  Then he gets a 2 month break between treatments. 

So far, he is doing well.  Just this week he has begun complaining that his legs hurt again, but I'm hoping the treatment on Friday will help.  I give his Children's Tylenol for pain, hoping it is easier on his system then the steroids were.

The good news is that Cooper is walking the best he has been in the last 2 years.  I still worry that we have not reached the right diagnosis yet, but all I can do is follow my gut first then the doctors second. 

Thank you to everyone who has followed us on this long and very stressful journey.  Support of friends and family helps us to make it. 

We are raffling off a night at Rodeo Houston with Cooper's uncle Clint Cannon, to help with medical cost.  Thank you to everyone who enters and Good Luck to you!!

Love Always,
Kirby, Summer, Clyde, and especially Cooper

Tuesday, June 21, 2011

Learning about CRMO

Hello Again,

Cooper had his first visit with the rhuematologist since we have been diagnosed.  When we left the hospital we were excited and relieved to find a diagnosis with a positive looking outcome.  However, now we are discovering this is going to be a long and painful process with many potential complications along the way.

CRMO is a very rare disease and very little is know about it here in the US.  There have been more extensive research done in Germany and Asia. 

Cooper has currently been taking naproxen for the inflammation and zantac to protect his organs from the harmful effects of naproxen.  This is for treatment of the symptoms themselves.  We are now being placed on Enbrel, which is an injection he will take twice a week to help lower his over active immune system.  Which will make him more susceptible to infections and other diseases.  So we will have to be very careful about who and what he is exposed to.  Which we will monitor through continuous blood test.

When we visited the rheumatologist on Friday Cooper was doing very well with walking and he could even jump a little bit.  However, when we went back on Monday for a check up with orthopedics, he was and is not able to walk very well at all.  He complains of pain and is barely able to stand.  So we are now starting our first round of steroids.  They say he should have better mobility after a few days of the steroids.

we are waiting for our insurance to approve the use of enbrel and we will go back to the doctor to learn how to administer the injections.

On top of all of this, the doctors have discovered a heart murmur in Cooper.  So we will be having an echo done on Friday. 

Cooper is very excited about his upcoming birthday party on July 2nd.  He specifically requested a tractor theme and we are going to have a HUGE water slide, pizza (his favorite) and lots of fun!!  Everyone who has loved and supported Cooper and us is invited!!

Love you ALL!!!
The Cannon Family

Tuesday, June 7, 2011

DIAGNOSIS.....Can I get an AMEN?!

Hello Everyone,

I first want to thank everyone for all their thoughts and prayers while we were in the hospital.  It was a very stressful time, but we are so blessed to have so many wonderful people in our lives to help us through this time.

We were first admitted into the hospital because the last MRI showed numerous lesions and fractures throughout Coopers pelvis and legs.  We had to be admitted through emergency room in the hospital and that was an all day ordeal.  They could not figure out what floor we were to be admitted to (neurology, hemotology, orthopedics....)  They finally decided we needed to be on the hemotology/oncology floor. 

Once we were there they began to call in the different teams of doctors, which included neurology, hemotology, orthopedics, infectious disease, nutrition, gastro-intestinal, endocrinology, and general pediatrics.  Each team had 4-5 doctors and we would see them 1-2 times a day.  Which averaged 30-40 doctors a day, all of which told us they had no idea what was going on with Cooper.  This was not encouraging. 

They decided to do a bone biopsy on Coopers leg and take a piece of bone directly from an area that showed a lesion.  As long as he was sedated hemotology decided to go in and take bone marrow from each hip and a small piece of bone from his hip as well. 

Cooper has been officially diagnosised with Chronic Recurrent Multi-Focal Osteomyelitis.  Which is;

Chronic recurrent multifocal osteomyelitis (CRMO) is a rare condition (1:1,000,000), in which the bones have lesions, inflammation, and pain. Its definition is evolving. Many doctors and articles described CRMO as an autoimmune disease that has symptoms similar to osteomyelitis, but without the infection. Some doctors thought CRMO was related to SAPHO syndrome. Cutting edge research now classifies CRMO as an inherited auto-inflammatory but have yet to isolate the exact gene responsible for it. Some specialists believe they have discovered a link between CRMO with a rare allele of marker D18S60, resulting in a haplotype relative risk (HRR) of 18. Other experts found that "mutations in LPIN2 cause a syndromic form of chronic recurrent multifocal osteomyelitis known as Majeed syndrome, while mutations in pstpip2 cause a murine form of the disorder. The roles played by LPIN2 and the human homolog of pstpip2, PSTPIP2, in the etiology of chronic recurrent multifocal osteomyelitis are uncertain but are currently being investigated." (El-Shanti, HI; Ferguson, PJ (September 2007). "Chronic recurrent multifocal osteomyelitis: a concise review and genetic update". Clinical Orthopaedics and Related Research 462: 11–9. doi:10.1097/BLO.0b013e3180986d73. PMID 17496555. ). The professional theories seem to be moving in the direction of an inherited gene.
Due to its inflammatory nature, its recurrent outbreaks, and its lack of any known pathogen, CRMO has been reclassified as an inflammatory disease. This particular classification, autoinflammatory diseases, encompasses both hereditary types (Familial Mediterranean Fever, FMF; Mevalonate Kinase Deficiency, MKD; TNF Receptor Associated Periodic Syndrome, TRAPS; Cryopyrin Associated Periodic Syndrome, CAPS; Blau syndrome; Pyogenic sterile Arthritis, Pyoderma gangrenosum and Acne syndrome, PAPA; Chronic Recurrent Multifocal Osteomyelitis, CRMO) and multifactorial disorders (Crohn's and Beh├žet's diseases). CRMO is not longer considered an autoimmune but rather an inherited, autoinflammatory disease.
Chronic: because it does not go away for a long time. Recurrent: because it comes back. It cycles between active and dormant, symptoms and no symptoms, exacerbation and remission. Multifocal: because it can erupt in different sites, primarily bones. Each outbreak can be in a different part of the body. Osteomyelitis: because it is very similar to that disease but appears to be without any infection.
CRMO was once considered strictly a childhood disease, but adults have been diagnosed with it. The disease tends to range from 4 to 14 years old, with 10 years old as its median age. As stated above, CRMO occurs 1:1,000,000 and primarily in girls with a 5:1 ratio. That means out of six million, there will probably be 5 girls and 1 boy with the condition. Yet, it may be more widespread than this.
Laboratory tests may help discover the inflammation: C-reactive protein level, erythrocyte sedimentation rate, level of peripheral leukocytes, ferritin level, Anti-nuclear antibody, antinuclear antibody level, and rheumatoid factor status. Most commonly, however, it is an MRI or bone scan that reveals the inflammation and/or lesions.
A doctor could easily misdiagnose CRMO as muscle spasms or simple inflammation and routinely prescribe anti-inflammatory medicines, which is the normal treatment for CRMO. Many childhood aches and pains are dismissed as growing pains. Parents might not even realize that the child needs to see a doctor. CRMO has deep pain, swelling, and a possible fever but not always. A limp may be falsely considered as the result of an over-active lifestyle. A parent or doctor may not associate a longer limb with CRMO. Without an xray, mri, or bone scan, the bone lesions will go undetected. A child could be misdiagnosed or undiagnosed; take over the counter anti-inflammatory medicines; and live past the illness.
Parents with sick children want a diagnosis, and doctors want to give them one. CRMO may be a catch-all medical phrase for painful bone lesions that do not have a better diagnosis such as arthritis, rheumatic fever, bacterial osteomyelitis, ewing sarcoma, leukemia, lymphoma, rhabdomyosarcoma, neuroblastoma metastasis, eosinophilic granuloma or Langerhans cell histiocytosis. When all the previous illnesses are ruled out and a bone biopsy turns up negative for any known cancer, bacteria, or fungus, CRMO is usually diagnosed.
Regardless of the diagnosis or lack of diagnosis, the patient is suffering from inflammation and possibly intense pain. As such, the most common prescription is for anti-inflammatory medicines such as NSAIDs and steroids. The goal is to rid (or reduce) the body of inflammation and that should ameliorate (or lessen) CRMO. Antibiotics are not commonly prescribed because there is no bacterial or fungal infection. But some doctors do prescribe the antibiotic azithromycin because, in addition to its antibacterial properties, azithromycin also has anti-inflammatory and immuno-modulatory properties.

So the reason it has taken us nearly 2 years to diagnosis Cooper is because this is a very rare disease in which we know little about.  There is no cure for CRMO, but there is a treatment plan and a strong possiblity that Cooper will not suffer any long term effects.

Kirby, Cooper, Clyde and I are happy with this diagnosis, and are so happy to start moving on with our lives now that we know what is wrong with Cooper and are able to treat him.

Cooper has been on the anti-inflammatories for 2 weeks and he is doing great!!  He has gained 3 pounds, which is great because he hasn't gained any weight since this whole thing began.  He is more energetic and has a much better appetite.  He is already trying to jump!!  He is doing so well and we could not be happier!!

We would like to again express how much we appreciate everyones thoughts and concerns.  It has warmed our hearts to have so many people take an interest in Cooper and his situation and the ourpouring of calls, prayers, and support has helped to guide us through this tough time.  You all are amaing poeple, friends, and family and we are so lucky to have you in our lives!!

Our journey is not over but we feel we have finally climbed a mountain and the future looks AMAZING!!

LOVE LOVE LOVE,
The Cannon Family

Friday, May 13, 2011

Friday the 13th - The Results

Good Afternoon,

I posted earlier on Facebook that the results of Coopers MRI, XRays, and CT Scan yesterday were not good. Here is why...

Our neurologist called us me this afternoon.  She wanted to speak to Coopers other doctors before she called me, but could not get ahold of anyone.

The radiology repost showed multiple focal bone abnormalities on both his legs and on his spine.  They also noted insufficiency fractures, or stress fractures.  They suggested lukemia as a concern.  They suggested we be admitted today, however Cooper is in a great mood and did really well at physical therapy this morning.  From our previous experience at hospital's we know that not a whole lot is accomplished on the weekend.  So we will be admitted on Monday morning, when all of his doctors are available to discuss what our next step should be.

These results could also mean a bone disorder, infection, etc....

So please continue to pray for us and for Cooper.  I also ask for prayers for Clyde, who is too little to understand why his parents spend so much time with his brother.  We love both our boys SO much and hope to give attention as equal as possible.

Love Always,
The Cannon Clan