Some Hair?

Since I've started this blog, Cole grew some hair.  I'd say about 3 dime-sized light brown patches over his head have popped up.  Otherwise, little stray blondes are on the rest of his head.  His eyelashes are fully in and have been since about April.  He has one eyebrow that likes to stay in, and the other has half that likes to come in and out as it pleases. 

We took Cole to his yearly dermatologist appointment with Dr. Gellis at Children's Hospital in Boston.  That was probably in the beginning of July.  The doctors were very pleased with his hair growth and said that his eyebrows and lashes being in were the hardest part usually.  And that the fact that he had hair growth at all following the eyelashes and brows was a great sign. 

Since then, we've shaved the little patches off of his head.  People ask why, when he has some hair, why not leave it?  While it may be for other parents, it wasn't for us.  The patches were very long and straggly looking, so we decided to just clean shave them off.  Since doing this, his hair has started falling out again.  The patches have stayed, I think.  But the blonde stragglers have been fewer and fewer. 

Through talking with other parents and the doctors, I've learned that hair growth will come and go.  Especially in the springtime.  There is no known reason why, but apparently springtime is a common time where hair comes in and then it falls out.  I have a feeling this is Cole's case, considering the stray hairs are falling out again.  The doctors said that exposure to the sun sans sunscreen on his head could contribute.  We've been doing that a bit, but he once started getting burned, so we vetoed it. 

It's not a big deal, but it is what is currently happening with Cole.  Otherwise, he loves swimming in the pool and is very excited to start gymnastics back up in the fall!

Not Cancer.

Cole is a huge flirt.  He always has been!  He loves going to the store so he can say hello to people and giggle and get little compliments from everyone.  (An elderly woman asked him on a date last week, to which he replied, "Okaaaaaaaay!")  Being a cute, flirtatious baby, he tends to draw a lot of attention to himself. 

On quite a few occasions (I can't count how many now...) complete strangers have asked either indirectly or not, if he has cancer.  I have a few feelings on this. 

First of all, it is insane how some people can just come out and ask these things.  Not only do I think it silly to assume someone has a specific condition, but the amount of people that have just come up to me and asked this makes me speechless.  I can't imagine ever walking up to a stranger and asking them if they/their child has cancer. 

I don't necessarily think that these people are ignorant, but I definitely think, "wow that guy was ballsy."  Or at least something along those lines.  Realistically, most children that are bald probably have gone through some sort of cancer treatment.  But even before I knew what alopecia was I never assumed someone had cancer when bald. 

As of late, Cole has grown some hair in.  It is patchy, weird looking, and not even at all.  He has his eye lashes back almost completely, and some eyebrows, though I've noticed those are falling out and coming in rapidly and repeatedly.  With this patchy hair, I've had more comments than ever.  Sometimes people ask what stage he is at, what kind of cancer he has, or how his treatment is going. 

Sometimes the comments catch me off guard and I am confused.  "Oh, how is his treatment going?"  "What?"  I just don't even think about it, so it doesn't come to mind until they ask.  Then I take a moment to educate them on alopecia and they are usually very relieved that he is not ill.

Then there are the people who just ask me why he is bald.

What I've learned from all of this is that most people would probably rather you ask than assume what is going on with them, what they have, etc.

CAP - Children's Alopecia Project

Throughout all of this annoyance and torment, we were looking for something...anything that could just make us feel like others knew what we were going through.  Don't get me wrong, the support of family and friends was and has been completely amazing and appreciated!  But to know that someone else understands what you are going through is an entirely different thing.

We stumbled upon the Children's Alopecia Project.

A group dedicated to supporting children with alopecia by building up their self esteem and providing them the opportunity to speak with and meet with other children with alopecia.  Great!  Though Cole was/is young, we really needed to talk to other parents who understood this.  It has been so helpful.  If you or anyone you know has a child going through this, it is an amazing group!  They have chapters around the country.  Even if it is somewhat far from you, you can at least join their Facebook group and talk to others.  It was a while after diagnosis that we found CAP, but it really is just a completely supportive environment. 

There are a lot of routes you can take when it comes to treatments with alopecia.  From doing absolutely nothing [which is what we are doing] to doing acid treatments, and even steroid injections.  Because alopecia is a disease that is not widely researched and in reality, they do not know why it happens, it is super helpful to speak to other parents/patients that have gone through this.  If you have read back in my blog, you will know that we went to Children's Floating Hospital at Tufts in Boston and got literally no answer.  Not even a diagnosis.  Fortunately for us, we live in an area where we have a lot of choices on hospitals.  But some people aren't as fortunate and get one answer and are stuck with that answer.  That is another reason why CAP is so helpful.  There are so many answers to one problem and not everyone has access to those answers.

Once Cole is older, I know he will find himself happy in the presence of other children with his condition and not so alone in his thoughts and burdens!

Though, at 2, how many burdens can you have, really?  :]