We have a surgery date!

We scheduled Charlie's first surgery.  It is exactly 3 months from tomorrow...January 17, 2014.  He will need to be there by 5:30am but hopefully with an early surgery we can leave the same day and not have to spend the night in the hospital.

Now that we have a real surgery date it feels so real.  Like I said before, I honestly can't wait to just get started.  We've waited a whole year to start this process and I'm getting antsy.

Here are some recent pics of the little man:

 

 A little sisterly love!

He's standing all by himself now!

Dr. Hoffman & Dr. Frieden all in one day

Today we came into the city to see Dr. Hoffman and Dr. Frieden for some routine appointments. We saw Dr. Hoffman first and he said he just wants Charlie's fontanel (soft spot) to be more closed before surgery but he gave us the okay to schedule surgery just after the first of the year (which has been our plan all along). We don't have the exact date yet but I'll keep you posted. Once he has his first surgery he will heal for about 3 weeks, we will fill the bubbles in SF for 12 weeks and then a removal surgery. Then he'll heal for 3-4 months and then we will do it all again. It sounds a little crazy but I'm so excited for him to have surgery. At this point I want to it done and over with so we can move forward with our lives and the nevus will be a distant memory.

Our appointment with Dr. Frieden was pretty basic and routine. We won't see her for awhile now (6 months) since we have surgery coming up but we will always see her, even after removal.

One of the best parts of the day was when we stepped into the elevator at Dr. Hoffman's office there was a little girl who was about 2 years old with a medium sized nevus on her face. We have become friends with so many nevi owners and their families through the Facebook groups we are a part of but this is the first time we have ever met someone in person. Sadly the family didn't speak English so it made it hard to chat but it was still really cool.

Biopsy Results

We finally got a call back from UCSF today and Charlie's biopsy results were all normal.  The doctor said he has some proliferating nodules (the bumps) but that they were negative for melanoma or any type of cancer. Yay!

Charlie is happy too!

Small update from the biopsy

On Wednesday last week (just 2 days after the biopsy) I received a call from the doctor at UCSF. She explained that there is a lot of cell division going on in the bumps on Charlie's nevus. She said that she expected this because the cells multiplying and collecting are what create the bumps. But they want to do further testing to see exactly what these cells are doing and how they are dividing. This will indicate whether they are benign or malignant.

So once we get these new tests approved by our insurance it will take 3 weeks to get the results. The new tests are on a molecular level and they extract DNA so I guess that is why it will take so long.

And here is Charlie on Easter yesterday!

Biopsy

Today Charlie had a routine 3 month checkup with the pediatric dermatologist at UCSF (Dr. Frieden). We first met with her when Charlie was about 2 weeks old. At that time she seemed very unconcerned about all the bumps, lumps and spots on Charlie's nevus. Today when we saw her though she seemed much more concerned about them. She made a comment about how his nevus is "much more active than the average nevus" which I think means he has a lot going on on his nevus. She seemed to think that one of the spots had grown (although I don't really think it had grown) and another spot was bleeding last week so she was concerned about that one.

So given all these concerns she decided to biopsy two of the bumps on his nevus to check for melanoma (cancer). This was something we were unprepared for but knew it was probably for the best. We want to be proactive with Charlie's care and not be constantly worrying if something more is going on.

For the biopsy she had me hold his head (which he was not happy about!) while she injected some local anesthetic into his scalp. Then they took what looked like a metal straw and twisted it into his scalp and cut out little sections of the bump. This left small holes into his head. It was a little scary to look at. I kinda now wish I hadn't watched the whole thing. They then put a stitch in each spot to close up the hole and then bandaged his head. Needless to say Charlie screamed the entire time and tears rolled down his cheeks. It was heartbreaking.

We should have results in about a week. I'll keep you posted.

Meeting Dr. Hoffman

Almost two months ago we made an appointment with Dr. Hoffman, a pediatric plastic surgeon at UCSF. It felt like an eternity but we finally got to meet him yesterday. This will probably be a very long blog post because not only do we want to keep our friends and family updated, we also want to talk about everything we learn throughout this process so that we can help other families who are on a similar journey. So I want to start off with a brief overview of our appointment and then I will go into more detail below.

OVERVIEW:
We REALLY loved Dr. Hoffman! He has a lot of experience with removing nevi such as Charlie’s and the pictures he showed us of his past clients were REALLY great. He was very personable and spent a lot of time talking with us and answering my very long list of questions. He seems very confident that we can get a great result using tissue expanders to remove all of Charlie’s nevus. He said it would take 2, maybe 3 rounds of tissue expanders to remove it all. A “round” would consist of:
• One surgery to put in 2 tissue expanders (one on the “normal” part of his scalp and one on his forehead)
• About 3-4 weeks for recovery from that surgery
• 12 weeks of weekly fills to fill the expanders and stretch the skin
• A second surgery to remove the expander, remove sections of the nevus and stretch and reconstruct the forehead/scalp with the new stretched skin.
• Healing phase of about 3-4 months before they can start the next “round”.
Once Charlie finished the 2 or 3 rounds, there might be some follow-up surgeries down the road to touch up scars, straighten eyebrows or inject fat in some areas of the face. But overall, Dr. Hoffman has had some amazing results without any touchups so we are hopeful we won’t need much touchup after the nevus is removed. Dr. Hoffman doesn’t like to start a round until the child is about 1 year due to the soft skull bones (more on this below). So at this point we are about 99% sure that we will have Dr. Hoffman remove all of Charlie’s nevus and we hope to begin in January 2014.

So that is the short story. Here is some more detailed information we got from Dr. Hofffman:

TIMING:
Dr. Hoffman was explaining that the skull bones of babies are very thin and pliable. He said at Charlie’s age now (2 months) he could cut his skull bones with a pair of scissors! If you place a tissue expander in when the skull bones are soft there are two problems:
• 1) The tissue expanders need something hard to press against or they won’t push the skin out and expand it.
• 2) You can permanently dent the skull. Dr. Hoffman’s colleague did a study with baby pigs and showed significant dents (some even down to the brain) when tissue expanders were placed when the bones were still too soft.
Dr. Hoffman also likes the fontanel (soft spot) to be closed before starting surgeries. So given all these reasons we agree that it would be best to start after Charlie turns 1. This timing will be perfect because hopefully we can start in early January 2014 and get 2 rounds in before the end of the year (for insurance purposes).

FILLS:
Although there are a lot of doctors who allow the parents to do fills themselves, Dr. Hoffman does not like his patients to do so. He likes to do the fills himself to ensure they are done properly and to monitor the progress. Once the tissue expander is placed under the skin, there is a port (also under the skin) that you inject a needle into and slowly fill the expander with saline and thus stretch the skin. This is done weekly until the expander reaches the point that the doctor is happy with (this usually takes about 12 weeks). So since Dr. Hoffman wants to do all the fills himself, we will be making weekly trips to San Francisco (about an hour away). Although this isn’t ideal for us, you do what you need to do. So if that means weekly trips to SF, then to SF we will go! Dr. Hoffman also said his risk of infection in the expanders is very low and this *might* be due to the fact that he does all fills. If an expander does gets infected, the child often ends up in the hospital on IV antibiotics or worst case scenario the expander has to be removed and you have to start all over again.

EXPANDERS:
Dr. Hoffman thinks that for the first round he would start with two expanders: one in the non-nevus area of Charlie’s hair and then a second one on the non-nevus side of his forehead. He is hopeful he can remove quite a bit of his nevus in just that round and most likely there will be one section of nevus left near his temple on the right side. For the second round he would most likely put one on his cheek below the nevus and another in the scalp again. We are hopeful that just these two rounds will be enough to remove it all.

SCARS:
One of the things I loved most about Dr. Hoffman were his scar lines. He creates very natural lines along the forehead (the most noticeable scar) by curving above the eyebrow, then going down a bit where your nose is and then curving back up over the other eye brow. I like this much more than a straight cut across the brow line. He is also hopeful that he won’t have to go all the way across on Charlie’s brow and instead only go part of the way across. He will then also have a scar along his hairline, one over near his right temple and then a couple on his scalp (which will be more hidden by hair). Dr. Hoffman also kept the hairlines of his patients in a very natural place. Overall he seems like a perfectionist and even the minutest things he pays attention to. He is conscious of trying to still create a sideburn and things like that for Charlie. I just really love his attention to detail (especially considering we are talking about rearranging Charlie’s face!).

HAIR:
I asked about whether the tissue expanders will thin Charlie’s hair and he said they will. The hair does not regenerate so the more your stretch it, the more it thins. He said with one expansion it is not very noticeable. If you do it twice it is noticeable and if you do it three times it is very noticeable. Luckily Charlie comes from two parents with VERY thick hair so we hope it won’t be too noticeable on him. Another thing we did talk about was balding. My father went bald at a young age and since it is thought that baldness is inherited from the mother’s side there is a good chance that Charlie might go bald at some point. Dr. Hoffman was explaining that since we will be moving his scalp all around, if he does go bald, it won’t follow the typical male pattern baldness. He will just start losing hair all over! He will be sight then!

INSURANCE:
Of course the financial part of all these surgeries is a big consideration so we talked a bit about that. One of the most important parts I wanted to know was whether touchup surgeries to correct seemingly “cosmetic” things would be covered by insurance. Dr. Hoffman said there was a law passed in the late 80’s that says ALL procedures related to a congenital malformation (which is what Charlie’s nevus is) will always be covered. So even if we need to come back when Charlie is 10 years old to get a scar revision…it will be covered. This was great news and a big relief for me.

TIMING:
Dr. Hoffman said the first surgery to put in the expander would take about an hour. The second surgery to remove the expander and then stretch and reconstruct everything takes about 4 hours. He said with the first surgery the kids often go home the same day. For the removal surgery, they sometimes go home the same day or stay just one night in the hospital.

So I think that is about everything we learned yesterday. We felt so comfortable with Dr. Hoffman and were so happy with his results that Kelly and I are about 99% sure we want to have him remove Charlie’s nevus. We will meet with Dr. Frieden (the pediatric dermatologist) again and have a long list of new questions to ask her regarding the medical part of Charlie’s nevus. But I don’t think there is much she could say at this point to sway me. I felt from the beginning that I really wanted to remove his nevus and I am so relieved that we have found a plastic surgeon that we have so much confidence in. It makes this decision so much easier! I used to feel like it was a lose/lose situation but now I feel like the removal is really a great option for us. Although I am not excited about Charlie having all these surgeries, I still feel like it is best for us and our family.

And here are some pictures from the last few weeks



Bathtime!


On a trip to Monterey


Valentine's Day!


Happy smiles


"I'm 2 months old!"

Where our journey begins...

On December 23, 2012 at 3:02am, Charlie Lawrence Teague was welcomed into this world. Within minutes of his birth I realized that he had something abnormal on his forehead and head. Kelly and I were given a few moments alone to process the emotions that were flooding over us. I was shocked and very sad to see that my new precious baby boy was not the "perfect" little baby we were expecting. We were sent to our postpartum room with little to no answers of what was on his forehead and scalp. We were told a pediatrician would be in in the morning to talk with us but until then we found ourselves alone in a room with this new baby and our heads were reeling. Instinctually we both grabbed our phones and started Googling. BIG mistake! After freaking ourselves out we both agreed to stop until we met with the doctor.

Around 8am Dr. Shultze came in and informed us that Charlie had a large congenital melanocytic nevus. “Large” described the size, “congenital” meant that he was born with it, “melanocytic” refers to the pigment-producing cells that it is made of and “nevus” is another word for a mole. So essentially Charlie was born with a large mole on his head. We were told that he would need an MRI to rule out Neurocutaneous Melanocytosis (NCM) which is a condition where you have melanocytes (nevus cells) in your central nervous system (your brain and/or spinal cord) and this can cause problems such as seizures, developmental delays and even death in certain cases. We also soon learned that the 20-30 little spots all over Charlie’s body were called satellite spots. After the doctor left we turned to Google yet again and learned that there are many types of large nevi and there is about a 5% chance of it developing melanoma (cancer). Because of this risk they often remove the large nevi with the use of tissue expanders. We tried to remain optimistic and just enjoy our sweet little baby but I’ll admit it was hard. I hated looking at his nevus and kept a hat over it for the first few days.

When Charlie was 11 days old we had his MRI at Sacramento Memorial Hospital in Sacramento. He was scheduled to have an MRI of his brain and spine with and without contrast. Because he would need to remain perfectly still for the entire procedure they had to put him under general anesthesia which was pretty scary for us. We were told over the phone by the intake nurse that this MRI would be an outpatient procedure lasting about 1.5 hours, 30 minutes for him to wake up and then we would be sent home. So except for having to be put under it seemed like a pretty simple procedure. WRONG!

We arrived at the hospital around 12:30pm on January 3 and by 1:00pm he had his IV and they had him asleep. They then told us that it would be about 2-2.5 hours for the procedure. The waiting was torture! Luckily my mom was there with us and she was a huge support for me. When the anesthesiologist finally came to get us it had been almost 4 hours! We were taken back to the recovery area and shocked when they told us that because he was less than 2 weeks old he would have to stay for 12 hours overnight for observation. None of us prepared for that but knew it was probably for the best. As we waited for him to wake up we soon realized that he would not be waking up in the 30 minutes like we were originally told. They explained that because he had Propofol (the anesthetic) for so long his little liver couldn’t process it and rid his body of it. There were some scary moments where his oxygen levels dropped and they had to have doctors come hold his airway open. Kelly and I sat there watching them do all these medical procedure to our tiny son. We felt so helpless and scared.

Charlie came out if his MRI around 4:30 pm and ended up not opening his eyes for the first time until about 9:00pm. Once he was awake though he was VERY out of it. He hadn’t eaten since 10am and was so groggy he couldn’t nurse. It wasn’t until about 2am that he was “himself” again, eating and pooping like a newborn should. Kelly, my mom and I had one small chair in the pediatric ICU room to share. Needless to say, none of us really got any sleep that night. By 8am he was cleared to go home and we were outta there! The one bright spot in our night was our nurse leaked to us that she had seen the MRI report and everything looked normal. Whew! Huge sigh of relief. Our pediatrician, Dr. Vallero, called the next morning to confirm that Charlie was all clear and his MRI looked great.

Four days later on Jan 7 we headed to UCSF Pediatric Dermatology department for a consult with Dr. Frieden. We had heard so many amazing things about Dr. Frieden and the entire Pediatric Dermatology department at UCSF so we were so excited to finally get a true diagnosis from someone who specialized in this type of condition. Dr. Frieden confirmed most of the things we knew already (he had a large CNM, his MRI was normal, there was a 5% chance of melanoma developing, etc). Removal is not her specialty (that is the plastic surgery department) but from a medical standpoint she seemed to think that we should remove the forehead part of his nevus and leave the scalp. The scalp nevi often fade and hair grows over them so they are less noticeable. So we left with a referral to Dr. Hoffman, the plastic surgeon (also at UCSF) and we have an appointment with him on February 26. Meeting with him feels like the last part of the puzzle in terms of getting all the answers we need to be able to make an informed decision about Charlie’s future.

So here is where we are today…

We are faced with a heart wrenching decision about whether to remove or not remove. Charlie’s nevus goes down onto his forehead on about half of his face and that section of his nevus has lots of unsightly bumps and lumps and dark spots. It is also growing “nevus hair” which is very different than regular hair. It is coarse, wiry and has a mind of its own. So, cosmetically we would like that part gone. Medically, that risk of melanoma will always be looming over our head for his whole life. We have already heard stories of head/facial nevi developing melanoma even in small babies. SO scary. So if we choose to remove we also have to decide whether to remove all of it (probably at least 4-5 surgeries over the first few years of his life) or to remove just the forehead section. If we chose to remove, when Charlie is about 6 months old they would place tissue expanders, which are like a balloon, under his skin and scalp. These are slowly filled with a saline solution over time to stretch the normal skin and hair. After the tissue expanders have stretched the skin to where they doctors want them to be they are removed, the nevus is removed and the normal skin and hair is stretched to basically reconstruct his head and face. Again, this would often be done over multiple surgeries, each time removing a section of the nevus. This path of removal seems like a long road of surgeries, hospitals, huge bubbles on our child’s face and head and an early childhood filled with medical procedures. On top of all that, Charlie will have large scars most likely across his forehead and throughout his scalp.

If we choose not to remove then we are choosing to live with the risk of melanoma and the repercussions of Charlie having a huge mole on his head and forehead. We all know that kids (and even adults sometimes) can be very mean and so we do consider the cosmetic part of it a deciding factor.

To be perfectly honest, I feel like both of these options suck. I hate that we are in the place that we have to make this decision in the first place. Both options feel like a lose lose situation. Kelly and I are not going to make any decisions until we have met with Dr. Hoffman, met with Dr. Frieden again and also consulted other doctors across the country who are experts in this field. If we choose to remove, we would start around 6 months so we do plan on making some decisions in the next few months.

I am setting up this blog to that we can keep our friends and family updated as we travel on this journey. We appreciate all the support we have received so far and I know we will continue to need much support over the coming months and years. And without further ado, here are some pictures of our handsome boy!

Here is a good picture of his nevus (taken just after he was born)

Sweet boy

Cutie pie

All curled up

You can see his nevus really well in this picture

Why hello!

Just after the MRI was finished

Still trying to fully wake up

Just before we got discharged from the PICU

Sleepy boy

Lily loves her little brother, nevus and all!

Enjoying some sunshine

1 month old!

Love his face in this picture!

Smiley Boy!