Nevus Conference Day #2

WARNING: This post may be deep!!

Today we had the official first full day of the conference. First we had Nevus 101 Part 1! Dr. Ashfaq Marghoob spoke about CMN (Congenital Melanocytic Nevus...which is the long name for a nevus). He talked about the size of them: Small, Medium, Large, Giant. They will grow in proportion to the child. For example, Brooklyn's nevus was 9cm x 10cm at birth. At 2 months it was 10cm x 11cm. I need to measure it again b/c I'm sure it's bigger by now. The risks of having a CMN include: melanoma, NCM (neurocutaneous malanocytosis), tumors, and cosmetic issues. 1:100 births have a small CMN, 1:1000 births have a medium; 1:20,000 births have a large; and 1:500,000 have a giant. CMN's form in the neural crest in the cells at a very early gestation. There is a melanocytic cell in the neural crest that goes thru the meninges in the brain and spinal cord then to the skin and that's when the skin gets pigmented. The lightness/darkness is dependent on how far towards the skin surface it is. If it's ventral then it goes on the neural route so it'll be larger and thicker. The gene that they're talking about is the C-met-proto oncogene. There COULD be a genetic component, but for it to manifest is a total chance occurrance. Symptoms of a CMN include: decreased sweating, pruritis (itching), exzema, and skin fragility. 1/3 of Large CMN's become lighter. Often scalp nevi's will disappear, BUT the nevi cells are still present...so they still do need to be removed. A large CMN has a 1%-10% risk of becoming malignant...which means that 90% won't turn cancerous. 7% of the patients studied got melanoma. 3% of people who had a truncal nevus got melanoma and just 1% of people who had a head/limb nevus got melanoma. Most turn cancerous by age 5. NCM is neurocutaneous melanocytosis. This is when deposits on the skin go to the brain. Of the people who have a CMN, 5%-22% develop NCM. The risk is higher if they have a lot of satellites. Satellites are like mini-CMN's and they can occur all over the body. People can have anywhere from several to thousands. The larger the nevus, the larger the risk is of developing NCM. 1% of people with head nevi's get NCM and 0% have died from this. They have a 5x greater risk of getting NCM if the nevus is on their spine or they have more than 20 satellites. The number of satellites determines the risk, NOT the location of the satellites. For the risk of melanoma: the size - the larger the nevus the greater the risk; torso has a greater risk; satellites aren't important (no melanoma has ever been reported in a satellite). For the risk of NCM: the size - the larger the nevus the greater the risk; location is not important; the greater the number of satellites the greater the risk. 76% of patients prefer a scar over the nevus; 74% believe that scars are more socially acceptable; and 24% regretted ever having surgery. Surgical excision of the nevus doesn't reduce the risk of melanoma to zero, but it significantly decreases the risk. Residual cells remain and melanoma cells can develop from these.
Nevus 101 Part 2: Veronica Kinsler from the Great Ormond Street Hospital for Children in London spoke next. She answered a very important question: Was it something I did to cause my child's nevus? Answer is NO! A positive correlation of mom's with nevus babies include: pre-eclampsia, threatened miscarriage, severe nausea & vomiting, and smoking. I never had any of these myself! The size of the nevus depends on how early in gestation the change happend with the neural cells and the melanocytes.
Next speaker was Yasmin Khakoo, MD from the Memorial Sloan-Kettering Cancer Center in NY, NY. She said that 7% of kids with a large CMN have NCM. Neurological complications from NCM include: hydrocephalus (water on the brain - caused by an inability for the brain to absorb water like it should b/c the melanocytes are in the way, basically), seizures, developmental/behavioral issues, cranial nerve issues, and spinal nerve root/cord compression. Recommends an MRI before 4 months of age with a GRE sequence (gradient echo). If a child gets CNS (central nervous system) melanoma that is fatal....and also rare.
Research Update Part 1: Dr. Sven Krengel - dermatologist from Germany. Classifies Giant CMN as greater than 1% of body if it's on the head/face - which Brooklyn's is. Laser and dermabrasion are not recommended treatment options for nevi's.
Next speaker: Dr. Miguel Reyes from the Children's Hospital in Pittsburgh and he talked about the role of the pathologist. There's diagnostic or research pathology. 3 types of nevi's: epiderman, melanocytic, and connective tissue.
Research Update Part 2: Veronica Kinsler again about research done on facial features of kids with CMN. Very interesting! Children with congenital menanocytic nevi's DO look alike. This is a confirmed, extended study done in England. They all have a broad, round face, wide forehead, eyebrow changes, fullness around the eyes, short nose, broad lips, full cheeks, long/deep philtrum, prominent lower lip, broad face, and are attractive. There's question whether or not to call this CMN Syndrome.
Next speaker: Heather Etchevers spoke about Nevus Development, Molecular Genetics, & You.
Next speaker: Bernard Wehrle-Haller from the Univ of Geneva, Switzerland spoke about Controlling the Replication of Melanocytes.
WHEW! Very exhausting, informative day!

Nevus Conference Day #1

Today was a crazy day! I have a tendency to ramble...HA! So I'm going to try my hardest to keep it simple. I only got 3 hours of sleep last night so I was really tired...but wide awake when I got up at 6:45am b/c I was so excited and very anxious. I went to the lobby and got my little packet of information at 8am. I went in and talked to the lady about the consultations. She said that our plastic surgeon (Dr. Bruce Bauer) wasn't going to get in until 5pm so the consult would be Thurs or Fri. They would text me when my appt time was. So I had until 7pm tonight to do nothing!
I came back to my room and rented a car online for the day. I took the hotel shuttle to the airport, then took the rental car shuttle to Enterprise, where I got a car for the day. I got a navigation system and had written down addresses to a few places.
First I went to the 6th Floor Museum - the place where Oswald shot JFK. It was such a great, informative museum. It was SO much better than I thought it'd be. Phones had to be off. When I got done I checked my phone and I had a text saying that my plastic surgery consult would be at 1:30pm!! Ummmm...it was 12:45pm and I was about 30 mins away (in a strange city that I'm not used to)! So I ran across the street, took pictures, ran back to the car, and drove like the dickens back to the hotel. I was about 10 mins away (and it was about 1:10pm) when I got a call asking to move my appt back an hour! I was too far away from the museum to go back. I'd planned on eating lunch at the Hard Rock Cafe after I was done at the museum b/c it was right around the corner. (If you have read all my Europe e-mails from 3 years ago you'll know how disappointed I was that I didn't get to go to the HRC!!!) So I just decided to come back to the hotel. I freshened up and reviewed my questions for Dr. Bauer.
Meeting him was a big deal to me. This is the guy who's going to be operating on my child at least 5 times! I was actually nervous...and anxious! I met his 2 nurses, his scheduler, and him. I was only in there for 15 mins b/c we'd already communicated by e-mail and telephone. So he'd already told me the plan. I had a few questions for him that he'd answered; and I gave him a few more pictures. He said that we can start around November, or if we wanted to wait till after the holidays that'd be fine too. I'll have to talk to Dustin & see what we wanna do.
I asked if we could wait a while or if he recommended starting now. He said there's no benefit in waiting so we might as well start. I also asked about getting an MRI to check for NCM (neurocutaneous melanocytosis). I'll explain what NCM is later; but he said that yes, we do need to do that, but it's not urgent. Each expander surgery will be about 1-1 1/2 hrs and each removal surgery will be about 2-3 hours. His scheduler will e-mail me with surgery dates and we'll just schedule with her and then go to Chicago for them! I also asked about hair growth. He said that because he's moving the scalp from the back to the front that I'll be amazed at how much I won't be able to tell that she even had a nevus. He traced an area on his own head of where Brooklyn will have scars. She'll have one behind her right ear, one along the right hair line, and one across the top of her entire brow line...fully across each brow. I need to still ask him about satellites showing up. (I'll explain that later, too.)
When I was done with my appt it was just 2:45pm so I went to a huge mall... It had a carousel and an ice skating rink in it! I got the girls a few things at the Disney Store (60% off sale I couldn't resist), then ate at Chick-Fil-A, returned the car, came back to the hotel, and went to the welcome reception that started at 7pm.
Something amazing happened tonight... When I was on the shuttle from the airport back to the hotel I started talking to a man (Pierre) and his 8 year old son (Gabriel). He answered a lot of questions I had and I answered a lot of questions he had. We talked the whole way back to the hotel. He asked how old Brooklyn was and I told him that she is 4 months old today. He was shocked b/c his son was 4 months old when they went to their first conference. We continued to talk and then went our separate ways when we got back to the hotel.
At the welcome reception tonight a lady went up on stage and introduced the outgoing director (or something like that...he was very high up at Nevus Outreach Inc) and who walked up on stage...but Pierre!! He gave a speech about how much NOI has changed his life and then said that he was just talking to a lady (Kathleen???) who he was on  the shuttle with 8 years ago when his son was only 4 months old. Then he said that he was on the shuttle today with a mom who has a 4 month old. He kept saying how much he'd hoped that NOI would change my life too. He mentioned our conversation numerous times during his speech... Amazing! That's more than a sign if you ask me! :o)
Anyways, I've gotten to meet a few people that I've "met" online in the Yahoo! NOI Support Group. It's so great to be able to meet them in person, ask them tons of questions, answer questions, and just socialize and not have to explain what Brooklyn has! I never in a million years would have met these great people if Brookie wouldn't have had this nevus. I 100% firmly believe that the Lord chose me to be Brooke's mom because he knew I could handle this. That's right... He.Chose.ME... and I'm so blessed!

I'm here!!!!!!

WOW what a trip to Dallas! I left home at 10am, drove to Billings, got on the plane....what a bumpy ride out of Billings and into Denver. Once we got to Denver I had just under 2 hours until my next plane. Well 2 hours turned into 6 because instead of leaving at 5:40pm we didn't leave until 11:15pm. That put us landing at 1:45am so I didn't get to my hotel until 2:30am and didn't get in bed until 3:45am! Holy canoly. I hope 3 hours and 15 mins is enough sleep for me because I got a busy day ahead of me!
Well at least with the super long wait I did get almost 1/2 of a book read! ;o)
The flights were horrible, to say the least. Thank the Lord that he got us here ok because I was sweatin and gripping the armrests like it was cool!

Yahoo! Support Group

I was added to the Yahoo! Nevus Outreach Inc Support Group. What a God-send this group is! I've "met" so many wonderful people. A lot of them are moms who are in the same boat I'm in. I've gotten a lot of ideas, asked questions, answered questions, told our story, listened to other's stories, etc etc!!! It's amazing. I've met some people that are going to the conference as well, so I'm looking forward to meeting them in person. One lady in particular is also going solo to the conference. I got the idea of this blog from her. She also did a cookbook as a fundraiser for all of her trips to Chicago, as she is also using Dr. Bauer for her son's nevus. I loved the cookbook idea so we're going to be doing the same thing! Don't be shocked when I hit you all up for a recipe for Brooke's cookbook! ;o) I've also thought about contacting the Children's Miracle Network or doing the Little Caesars Pizza kit fundraiser. Cookbook is #1 though right now! Send me your recipes to: misspriss_mv@yahoo.com and you'll be published! ;o)

3rd Opinion and a Phone Call -- "The Plan"

This morning I spoke with Dr. Bennett. I told her everything that was going on. My biggest thing was that I didn't want to step on her toes or go above her with what I was doing. I didn't want to have a different plan than she had. She said that's not the case, that a lot of the time it's the parents that do all the research, and that she's fine with what I'm doing. Whew!
Tonight I got a call from Dr. Bauer. He gave me the "plan of attack", so to say. This is what he had to say... The biggest thing was that he said he can remove it. He will do the tissue expanders to replace the forehead with normal forehead and the scalp with normal scalp. The first surgery will be to put in the tissue expanders. He will do 2 to start off with. One will go in her left forehead and go towards her scalp. The other one will go behind the nevus,  above her right ear, and towards the back of her head. He said that the forehead is the tricky part. He said that there will be a scar at the brow level and at the hairline. He'll put her on antibiotics for a few days after inserting the tissue expanders, to prevent any infections. Then while she has the expanders in I just need to watch for signs/symptoms of infection, and if I see any then he'll put her on antibiotics again.
The second surgery will be 11-12 weeks later and that will be removing part of the nevus. We'll wait 4 months and then do it all over again, but this time only have 1 expander. Then 11-12 weeks later the 4th surgery will remove the rest of the nevus. The 5th surgery will be a touch-up procedure that is reconstructing/refinement of the brows (since he thinks that one may be higher or lower than the other) and making everything (hairline, brows, forehead) symmetrical. Believe it or not he said that this last surgery is out-patient.
He said that after the first set of expanders are put in we'll have to stay in Chicago for 8-10 days and then go back in his office so his nurse, Susan, can teach us how to do the expanding. (This is where Dustin get's a little ticked off at me...He doesn't understand why I don't just tell them that I'm a nurse! Well I'm not a nurse when it comes to my kids. I don't want them assuming I know something. I don't want them to talk to me like I'm a nurse...I want them to talk to me like I'm a mom.) They'll give us all the supplies to do all the expanding at home after that.
Another thing he mentioned was how bad she'll look when coming out of the expander surgeries. He said that she'll be bruised all over, especially down into her right eye. There will be 1-2 drains from each expander. He said that those will be in for a few days to a week and usually the parents take them out.
I asked when we can start this process. He said that typically when he sees a newborn then they start at 6 months, but because he's "seeing" Brooklyn at 4 months, then we can start at about 8 months, or whenever we're ready. Dustin wants me to ask him at the conference if we need to start now, or if we can wait a year or so to save up enough money for at least 5 trips to Chicago. I'm betting that he'll suggest starting sooner rather than later because it grows as her head grows. At birth it was 9cm x 10cm and when we saw Dr. Grosso at 2 months it was 10cm x 11cm. So it may be even more surgeries if we wait just a year. I'll ask him though and see what he says.
I asked him what about waiting until her fontannelles and sutures close in her head and he said theoretically that's a great idea...IF they closed at a year...but they don't! He said that the head does do a little molding when the tissue expanders are in, but once they're taken out the head goes right back to where it belongs. He said he's done over 100 on the forehead/scalp area and it's all turned out great.
After getting off the phone with him and talking to my mom and Dustin I have a few more questions that I'll ask at the conference, such as what about getting an MRI to check for NCM? (NCM is Neurocutaneous Melanocytosis - which is melanocytes in the central nervous system that can cause developmental delays or seizures. It affects about 33% of people with a large or giant nevus.) Also, do I need to worry about satellites appearing? What will her hair growth be like after the surgeries?
I'm anticipating from start to finish to be about 15-18 months.

Happy 2nd Birthday Cali!

I heard back from Dr. Bauer today and he said that he'll get in contact with me tomorrow either by e-mail or phone.
Also...today is Cali's 2nd Birthday!!!! Wow has time flown by! We had a big party for her...and she had a ball. She was playing like crazy. We got her a Disney Princesses Castle pool so she was a little doll in her Princesses bathing suit...that she had on all day! Every present, except for 1, was Disney Princesses. I sure did love it! ;o)  She'd only had a 10 minute nap earlier in the day so she crashed that night!

2 Good Things!

Two good things happened today! One, my parents are lending me the money so that I can go to the conference! What a blessing. I'm going to learn so much from the conference. I'm SO looking forward to it. :o)
Second - I heard back from Dr. Bauer. He said that I probably didn't need to bring Brooklyn but he wanted a few more pictures. So within a couple hours I sent him the extra pictures that he'd asked for. He wanted me to wet her hair (among a few other things) so that he could see exactly how big the nevus was.

Another Opinion!

Today I spoke with Dr. Comes about what's going on and my new developments. She agrees that I do need to go to this conference, but like Sharon said...I have to take Brooklyn with me. She made a great suggestion though. She said to contact Dr. Bauer's office in Chicago and ask them if I did need to bring her or if I could just bring pictures. So I did just that!
I found his contact info and called them. I spoke with his scheduler, Wendy, and she gave me his e-mail address. She said to send a few pictures to him and ask him my questions. I'd already taken pictures because I was going to take them to the conference, so I uploaded them into an e-mail and sent it to him. I asked him if I needed to bring Brooke and if I should see a dermatologist to get more info about her nevus.

1 Opinion and the best surgeon!!!

I went to work on Friday and spoke with Sharon first. I told her everything that happened 3 days ago at the appt and she told me to run...run far away! She made a great point in saying that after he does all his research and throws options out that he'll probably get back with us and tell us that he's not comfortable doing it. She thinks I need to go online and find someone that specializes in it. But how on earth do I do that?!
Later that day I researched some more. I found a website: http://www.nevus.org/ that tells all about them and you can register someone who has a large or giant nevi. I registered Brooklyn later that afternoon and literally within 15 minutes I got a call from them welcoming me to the site! Amazing, if you ask me! She took the time to welcome me and invite me to their conference they are having in July. It's Wed (7/7) thru Fri (7/9) in Dallas, TX. Originally I thought, nah, I don't need to go to that. But once she started talking to me about it, and once I read online all about it I thought that I needed to go. I looked up ticket prices to Dallas, plus the conference fee, plus the hotel, plus food $, etc and it'd be over $1000 to go. :o(  I knew I couldn't take Brooklyn by myself...it'd be way too difficult for me to do it by myself. They do have day care at the conference, but still...it exhausted me thinking about it. It was too expensive to have anyone else go with me too, so I kind of just told myself that I wouldn't be able to go. I did tell my mom about it and she wanted to talk to my dad and tell him about it.
Anyways, I was reading about the speakers at the conference and there was one doctor who caught my eye. His name is Dr. Bruce Bauer and he practices right outside of Chicago...in Highland Park, IL. He has the most experience with congenital nevi's in the world and has a particular interest in tissue expansion. PERFECT I thought to myself...now my goal in life is to be able to talk to this guy. Another reason I'd want to go to the conference is because they have free consultations with the doctor's. I thought that if I just took some pictures of Brooklyn he'd be able to tell me if he'd be interested in removing hers or not.
I told Sharon about the conference and she said that everything sounded great, but that I really needed to take Brooklyn. Yikes.

Meeting with first Plastic Surgeon

Today (6/15/10) at 2pm we met with Dr. Grosso at Billings Plastic Surgery. His nurse came in first to take pictures, then he came in. The first thing that was a little "off" was that he had to ask us how big her nevus was exactly. He kept saying how big it was, but he didn't know how far back it went...I had to show him. During the appointment he basically was thinking out loud to himself. He went over all the different options that we could do (chemical peel, microdermabrasion, removal, tissue expanders, leaving it alone, etc). He was saying how we'd do each option, and then would tell us that that option wouldn't work for this reason or that reason. He was very confident in how he could do things, but it was obvious he'd never removed one from the scalp/forehead before. He never once came out and said "well 3 years ago when I removed one on the head this is what I did and this is how it turned out".
I asked him how the nevus started and he couldn't answer me. He said that he'd have to get out all his medical books to find out that answer! I said that I knew they started at 8-10weeks gestation and he said that he didn't even know that. That's fine, but I'm not sure I'd have told us that! He said "You know you just don't see these here. In a big city like Boston you may see a lot of them...like 1-2 a year, but in rural Monana you may only see one every 5-6 years, and that's not including seeing them on the head, which is rarer."
Then on his way out he said that I needed to continue doing my own research to see what else I could find. He said that we couldn't start until Brooklyn was at least a year old because he wanted all her fontanelles and her sutures in her head to close. He said he wanted to see her back after she is a year old and we'll do a CT to make sure they've closed, and then we'll start the removal process.
So we went home and I did nothing but research. For 2 days I did nothing but eat, sleep, drink, and think nevi! On Thursday (6/17/10) I finally decided that I'm going to talk to 3 people and explain all this to them and see what they think. I'll talk to our family doctor (Dr. Bennett), to the doctor I work for (Dr. Comes) and the Nurse Practitioner in our office (Sharon) and see what they say. If they say that he sounds like he knows what he's talking about and that he could probably do a good job then I'd leave it alone. I'd forget about it until after she's a year and we'll do what Dr. Grosso suggested. BUT...if all 3 people said to run and find someone else because it didn't sound all that promising, then I'd do more research and try to find the best surgeon to remove nevi's in the country.