Thank you for following Brayden's Journey. He is truly such an amazing little boy, always so happy and full of smiles. Brayden was born on 11/01/2010 with Giant Congenital Melanocytic Nevus. 1 out of 500,000 babies are born with this, so a lot of you may have never heard of this before. Continue to follow Brayden's Journey and you will learn all about nevus. We really appreciate all of your support.
Monday, January 3, 2011
Sunday, January 2, 2011
Welcome to our blog of Brayden's Journey
Welcome to Brayden's journey. Well I've never blogged before but I thought this would be a great way to share what's going on in our lives, especially now that Brayden has to have his surgeries sooner rather than later. This will save us explaining things hundreds of times and getting things mixed up, confused, leaving things out, etc. I want to make sure everyone knows what's going on because we need your prayers. Feel free to give our blog address to anyone who would be interested in reading about what we're up to. So now you may be wondering what I am talking about. So let me start from the beginning.
Brayden was born on 11/01/2010 and from the moment we laid eyes on him we fell in love! He was so beautiful!! However, he was born with some spots on his lower back and butt. The doctors didnt know if it was birthmarks or what it was. So the next day, they did a MRI and a cat scan to make sure it didn't affect his spinal cord and brain. When we got the results back, it all came back normal. So that was good news.
So now, what is this you are asking....it is called Nevus. 1 out of 500,000 babies are born with this. It is nothing that mom or dad did, it was just the way God made Brayden, he just has a special skin on him.
WHAT IS A NEVUS you are wondering? -- A nevus is a darker pigmented area on the skin. "Nevus" is just a fancy name for a birthmark that can turn malignant (cancerous). The long medical term is: Congenital Melanocytic Nevus (CMN).
The first 2 weeks Baryden was born, we took him to Phoenix's Childrens hospital where they looked at his nevus. The doctors said Brayden is a healthy boy and it is up to the parents if we want to get the nevus removed. The reason why you would want to remove the nevus is because later on in life there is a 1 to 10% chance it could turn into cancer and you would also want to remove it for the cosmetic side. 50% of parents have the nevus removed when the child is 6 months of age. Most of the time you will have to get more then one surgery, so that is why it is good to start at a young age. That way their skin is more stretchy and they won't remember it.
Then we were off to meet with a surgeon, her name is Dr. Sighn. She has been doing surgeries with children and adults with nevus for over 10 years now. She told us to do lots of research about nevus and when Brayden is 4 months old to come back and she wants to see how his skin is doing and if everything looks good at 6 months we will have surgery on him to start to remove the nevus. So that is where we are right now, just doing reseach and finding out as much as we can about nevus before Brayden turns 4 months.
Here is Nevus 101:
Believe it or not, there are still people out there who didn't know that Brayden has a nevus. So I thought I'd write up a little FAQ page all about Congenital Melanocytic Nevi's. PLEASE....if you would like to see any additional questions on here...just email them to me. I'll include every question. The more we know about this, the better! Any & all questions are welcome!
WHAT IS A NEVUS? -- A nevus is a darker pigmented area on the skin. "Nevus" is just a fancy name for a birthmark that can turn malignant (cancerous). The long medical term is: Congenital Melanocytic Nevus (CMN).
DO THEY COME IN DIFFERENT SIZES? -- Yes, a nevus can be small, medium, large, or giant. Small nevi's are less than 1 1/2 cm; medium are 1 1/2 cm - 19.9 cm; large are greater than 20 cm; & giant are greater than 50 cm. These measurements are based on how big they'll be when the nevus-owner is an adult. Brayden has giant nevus since it takes up alot of his butt & lower back.
HOW COMMON IS A NEVUS? -- A small nevus occurs in 1:100 births; medium is 1:1000 births; large is 1:20,000 births; & giant is 1:500,000 births.
NEVUS? NEVI? WHAT'S RIGHT? -- The singular form is "nevus"; plural is "nevi".
WHAT'S THE CHANCE OF A NEVUS TURNING MALIGNANT? -- A large nevus has up to a 10% chance of turning malignant. The larger the nevus, the greater the risk of that nevus turning malignant. A torso nevus has the greatest risk.
WHAT IS A SATELLITE NEVUS? -- A satellite is a smaller nevus. They can be anywhere on the body. Some people with a nevus may have just a few, while others may have thousands. These are usually in addition to the bigger nevus. No melanoma has ever been reported in a satellite nevus. Brayden has some of these on his legs.
WHAT IS NCM? -- NCM (Neurocutaneous Melanocytosis) is when a satellite nevus is on the brain. A person can be asymptomatic, meaning that you'd never know they had it; or they can be symptomatic. Approximately 7% of people with a large nevus develop NCM. Symptoms of NCM include: neurologic complications such as hydrocephalus (water on the brain), seizures, developmental/behavioral issues, cranial nerve problems, & spinal nerve problems. The larger the nevus, the greater the risk is of developing NCM, and the greater number of satellites, the greater the chance of NCM. Approximately 1% of people with a scalp nevus will get NCM.
HOW IS NCM DETECTED? -- A child should have an MRI, run a very specific way, to see if there are any deposits on the brain.
HOW WILL BRAYDEN'S NEVUS BE REMOVED? -- There are a couple different ways for a nevus to be removed. Brayden will have his removed by the most common form of removal used today...Tissue Expansion. Other forms of removal include: microdermabrasion, chemical peels, laser, & skin grafts. (Of this list, skin grafts are the most commonly used. The other 3 are found to be non-reliable forms of removal with a negative future outcome.)
WHAT IS TISSUE EXPANSION & HOW DOES IT WORK? -- Tissue expansion is when the surgeon creates a little "pocket" right underneath the skin surface. He then inserts a thing that looks like a deflated balloon into this pocket. He then creates a port under the skin; the end of the port will on his upper back. The whole tissue expansion process is most closely related to a breast implant. Every week or so I will place a little bit of numbing cream on the skin right above the ports or we will go to the dr and they will do this for us. They will then have to inject saline into each expander over an 11 week period. How much saline they inject depends on what the doctor wants. If we're expanding too fast, they will do less saline over a longer time period; but if we're expanding too slow, then they will put in more saline more often. After the 11 weeks are up it will look like he has a huge growth on his back.
So now I hope you understand more about Brayden and what he has, feel free to ask us questions and we will continue to update the blog with any new information we get.
We are also thinking of doing something for a fundraiser to help out with the cost of surgery, maybe a cook book. Will keep all of you posted on that.
Thank you for reading about Brayden's journey!
Brayden was born on 11/01/2010 and from the moment we laid eyes on him we fell in love! He was so beautiful!! However, he was born with some spots on his lower back and butt. The doctors didnt know if it was birthmarks or what it was. So the next day, they did a MRI and a cat scan to make sure it didn't affect his spinal cord and brain. When we got the results back, it all came back normal. So that was good news.
So now, what is this you are asking....it is called Nevus. 1 out of 500,000 babies are born with this. It is nothing that mom or dad did, it was just the way God made Brayden, he just has a special skin on him.
WHAT IS A NEVUS you are wondering? -- A nevus is a darker pigmented area on the skin. "Nevus" is just a fancy name for a birthmark that can turn malignant (cancerous). The long medical term is: Congenital Melanocytic Nevus (CMN).
The first 2 weeks Baryden was born, we took him to Phoenix's Childrens hospital where they looked at his nevus. The doctors said Brayden is a healthy boy and it is up to the parents if we want to get the nevus removed. The reason why you would want to remove the nevus is because later on in life there is a 1 to 10% chance it could turn into cancer and you would also want to remove it for the cosmetic side. 50% of parents have the nevus removed when the child is 6 months of age. Most of the time you will have to get more then one surgery, so that is why it is good to start at a young age. That way their skin is more stretchy and they won't remember it.
Then we were off to meet with a surgeon, her name is Dr. Sighn. She has been doing surgeries with children and adults with nevus for over 10 years now. She told us to do lots of research about nevus and when Brayden is 4 months old to come back and she wants to see how his skin is doing and if everything looks good at 6 months we will have surgery on him to start to remove the nevus. So that is where we are right now, just doing reseach and finding out as much as we can about nevus before Brayden turns 4 months.
Here is Nevus 101:
Believe it or not, there are still people out there who didn't know that Brayden has a nevus. So I thought I'd write up a little FAQ page all about Congenital Melanocytic Nevi's. PLEASE....if you would like to see any additional questions on here...just email them to me. I'll include every question. The more we know about this, the better! Any & all questions are welcome!
WHAT IS A NEVUS? -- A nevus is a darker pigmented area on the skin. "Nevus" is just a fancy name for a birthmark that can turn malignant (cancerous). The long medical term is: Congenital Melanocytic Nevus (CMN).
DO THEY COME IN DIFFERENT SIZES? -- Yes, a nevus can be small, medium, large, or giant. Small nevi's are less than 1 1/2 cm; medium are 1 1/2 cm - 19.9 cm; large are greater than 20 cm; & giant are greater than 50 cm. These measurements are based on how big they'll be when the nevus-owner is an adult. Brayden has giant nevus since it takes up alot of his butt & lower back.
HOW COMMON IS A NEVUS? -- A small nevus occurs in 1:100 births; medium is 1:1000 births; large is 1:20,000 births; & giant is 1:500,000 births.
NEVUS? NEVI? WHAT'S RIGHT? -- The singular form is "nevus"; plural is "nevi".
WHAT'S THE CHANCE OF A NEVUS TURNING MALIGNANT? -- A large nevus has up to a 10% chance of turning malignant. The larger the nevus, the greater the risk of that nevus turning malignant. A torso nevus has the greatest risk.
WHAT IS A SATELLITE NEVUS? -- A satellite is a smaller nevus. They can be anywhere on the body. Some people with a nevus may have just a few, while others may have thousands. These are usually in addition to the bigger nevus. No melanoma has ever been reported in a satellite nevus. Brayden has some of these on his legs.
WHAT IS NCM? -- NCM (Neurocutaneous Melanocytosis) is when a satellite nevus is on the brain. A person can be asymptomatic, meaning that you'd never know they had it; or they can be symptomatic. Approximately 7% of people with a large nevus develop NCM. Symptoms of NCM include: neurologic complications such as hydrocephalus (water on the brain), seizures, developmental/behavioral issues, cranial nerve problems, & spinal nerve problems. The larger the nevus, the greater the risk is of developing NCM, and the greater number of satellites, the greater the chance of NCM. Approximately 1% of people with a scalp nevus will get NCM.
HOW IS NCM DETECTED? -- A child should have an MRI, run a very specific way, to see if there are any deposits on the brain.
HOW WILL BRAYDEN'S NEVUS BE REMOVED? -- There are a couple different ways for a nevus to be removed. Brayden will have his removed by the most common form of removal used today...Tissue Expansion. Other forms of removal include: microdermabrasion, chemical peels, laser, & skin grafts. (Of this list, skin grafts are the most commonly used. The other 3 are found to be non-reliable forms of removal with a negative future outcome.)
WHAT IS TISSUE EXPANSION & HOW DOES IT WORK? -- Tissue expansion is when the surgeon creates a little "pocket" right underneath the skin surface. He then inserts a thing that looks like a deflated balloon into this pocket. He then creates a port under the skin; the end of the port will on his upper back. The whole tissue expansion process is most closely related to a breast implant. Every week or so I will place a little bit of numbing cream on the skin right above the ports or we will go to the dr and they will do this for us. They will then have to inject saline into each expander over an 11 week period. How much saline they inject depends on what the doctor wants. If we're expanding too fast, they will do less saline over a longer time period; but if we're expanding too slow, then they will put in more saline more often. After the 11 weeks are up it will look like he has a huge growth on his back.
So now I hope you understand more about Brayden and what he has, feel free to ask us questions and we will continue to update the blog with any new information we get.
We are also thinking of doing something for a fundraiser to help out with the cost of surgery, maybe a cook book. Will keep all of you posted on that.
Thank you for reading about Brayden's journey!
Subscribe to:
Posts (Atom)