Caleb's Big Year

I don't know how many of you are aware of what is going on with regards to Caleb's lip. Let me start from the beginning.

Caleb was born with a very rare condition called Lymphangioma. This basically means that he has extra lymph tissue in his lip. When he gets sick it gets all red and puffy. He had an MRI when he was 3 months old to determine the extent of the condition. It turned out that he has a microcystic condition which means that there are MORE SMALLER vesicles as opposed to LESS BIGGER ones. This version is much harder to treat because with BIGGER ones you can go in and shrink them. But with smaller ones, they can't really be shrunk much more. The only option at the time was surgically removing them. The MRI also showed that the lymph tissue went all the way through his entire lip including the muscle. In order to take it all out they would have to remove muscle which was not an option. So, we went into it knowing that the surgeon wouldn't be able to get it all out. The surgeon said that since he couldn't get it all out, it would grow back because it multiplies. But he had no idea how fast it would grow back. It may take 10 years or 2 months.

Two and a half years ago when he was 4 years old he underwent surgery. You can read about it here. It was healing perfectly. So perfectly that we didn't even notice how fast it grew back until we looked back on pictures. It took about a month for the swelling to go down and about two months before it was back at it's previous size again.

We didn't want to put him through the pain and scarring of another surgery so we waited a while. We talked to the surgeon again last year. He felt like he would probably respond the same way to another surgery. But there was an experimental treatment going on in San Diego that we should look into. To make a long story short, after about 6 months of calls and faxes to Dr's in CA we were put in contact with Dr Grimmer an ENT at Primary Children's who, as it turns out, specializes in Lymphangioma in children. Who knew! Our surgeon definitely didn't! He was surprised when we told him who we were put into contact with.

He met with us and we discussed a new experimental procedure that he though may help. Caleb needed another MRI to figure out if he was a candidate. He had this MRI last month. After many hopes and prayers (and scares!) we found out that he is a candidate to at least TRY this procedure. They will know after one or two treatments if it is going to work.

This procedure is a form of Sclerotherapy. He will be sedated and they use ultrasound to find certain areas where they will inject bleomicin (spelling?). This is a scarring agent that will create scar tissue to shrink the area down. This is also an ingredient in chemotherapy and the medicine my dad uses to get rid of warts. Talk about many uses! He will need 4-6 treatments. Then he will probably require another plastic surgery to finish it off and make it look nice.

This method of treatment, as I said, is relatively new. Probably just a few years old in the states. It has been used in other countries for a long time, though. He has done it on half a dozen kids (I told you the condition is rare) in the last few years and most have very favorable results, especially the kids who don't respond to other types of treatment because of the microcystic nature (what Caleb has).

As the Dr said, the goal here is not perfection. He will never have that (but who does?). The goal is for his lips to look similar enough to each other that when he walks through school or the store, he doesn't turn heads. Hopefully people won't notice unless they are talking to him face to face and even then it might not be too noticeable.

His first treatment is next Thursday. If this procedure is going to work we will notice some shrinking after one treatment. If it doesn't work, we don't really have any other options until technology catches up with us. We are hopeful that this will work. Please remember him in your prayers and think about him next Thursday!

I will keep you all posted.