Wednesday, July 28, 2010

Exciting News - WE HAVE A DATE!

Well the day that I never thought would come is is the day we found out when Brooklyn's surgeries will be. It's a little bitter sweet...partly because it's so real now. There's a date set and we know she'll be having the surgeries for sure now. But also partly because it's kind of exciting to know that it's actually going to happen. It's a little ways out there...January 6, 2011. But that'll give us time to get her flu shots in and time to enjoy the holidays without having to worry about expanders or surgeries or anything!
So the first surgery (where they'll insert both tissue expanders) will be January 6, 2011. The second surgery (which is the first nevus removal surgery) will be March 24, 2011 - exactly 11 weeks later.
The best part about this is that we'll be in Chicago when our new friends (the 2 families I met at the Nevus Outreach conference) will be there too! It's only been like 3 weeks since I've seen them, but I'm so excited to catch up...and excited for Brooklyn to meet Sully & Joshua. AND...Joshua's first removal surgery will ALSO be on March 24th! So Brooklyn & Joshua will get to hang out twice!
We're driving the first trip so we'll probably have to leave here on Jan 1, 2011 because she'll have her MRI on the 4th; then the pre-op appt on the 5th; and the surgery on the 6th.
So just 5 months and some days before her first surgery. Keep us in your thoughts and prayers!

Friday, July 16, 2010

Cookbook Sales - FYI!

FYI: You can begin pre-ordering your cookbook at anytime.
If you'd like to do this simply send a check to: The Brooklyn Vance Fund c/o Merilee Vance, 247 Ponderosa Lane, Lewistown, MT 59457. Make the check out to Brooklyn Vance Fund. If you'd like to wait that's fine too. Once I get it set up there will be a link on this Blog taking you to the order page. If you'd like to pre-order I'll send the book to you once it's done.

Also - I have gift certificates available for the cookbooks...what a great Christmas present! ;o)  You can also get these at anytime!

Cookbooks cost $20/each and are $5 total for shipping. If you live in or around Lewistown, MT the cost is just the $20, but if I need to ship it to you simply add $5!


Hello again!
Well the cookbook is in full swing...but I'm lacking one important! I've gotten some, but I need more! I'd potentially love to have at least 500'ish. So start sending. I'll put in every single one you send...whether it's 1 or 50! Send them to BY AUGUST 15TH!!!!!!!!!!! I can use any type of recipe: drinks, app's, main dishes, side dishes, desserts, salads, soups, etc. The sky's the limit!
Thanks in advance for your help!

Friday, July 9, 2010

Nevus Conference Day #3

Wow what another amazing day today! It started out like every other day...with a caramel macciatto from Starbucks. Then we got to hear our surgeon speak. He talked about the surgical managent of large & giant nevi. He said that the large and giant nevi have the greatest melanoma risk (where 4.5%-10% develop it). He likes to start early with surgery b/c there's excellent patient tolerance and the skin has great elasticity (especially in kids less than 3 years old). Some patients opt for observation only; then they have to be seen for yearly check-ups. One of his mottos is: "Always look at your greatest success and ask what you could have done better." He has a particular interest in tissue expansion, which is what Brookie will have to have, as stated previously. He typically keeps the expander in for 8-12 weeks. They are placed through an incision within the border of the lesion. They remove the drains 4-10 days later. Treatment of a nevus can typically begin at 6 months to be considered safe. As far as a head nevus goes...the head does mold when the expanders are in place; however, it goes right back to the correct place when it's taken out (usually within 1-3 months). The head expanders aren't small...he goes big. He had a LOT of pictures of expanders and before/after surgery pics. He showed a picture of an infant with 2 expanders in it's pretty much the EXACT same places that Brooklyn will have hers. I immediately got tears. We were sitting at the table with Dr. Bauer's staff and everyone at the table was really supportive of each other. It was good though that it was shown b/c I really needed to see it so that I know what to expect. That was the very first time I'd seen an actual picture of an infant with them in...and he's not kidding when he said that they go big...he doesn't go small with them. It's going to be an interesting process.
So next was a talk by one of the speakers from yesterday. Dr. Miguel Reyes talked about the Tissue Repository for CMN & Related Disorders.
Next was a Q&A session. They talked about how often an MRI should be taken if a patient has NCM. Also talked about general anesthesia and learning disabilities. They said that IF they get this, they get over it. Dr. Bauer has never had to give a blood transfusion to a patient and he's never had a complication during the surgeries.
Next was a talk by someone who was specializing in siblings of the patient with the nevus. She said that any issues a sibling has becomes more pronounced when a child has a medical condition. Said that the parents have a loss of the "fantasy child". Father's may feel left out so they had a special little session for the dad's. Makes me wish Dustin was here for that...I'd force him to go! She also said that we can't overprotect the child with the condition. We need to look for teachable moments when people tease them, as well.
After all the talks we had a little session where all the adults with a nevi sat up front while all the parents and everyone else asked them questions. To be honest I wasn't looking forward to this and we purposefully sat by the door so we could leave...but it was one of my favorite sessions. I had a few tears a couple times... It was really moving.
Next was a little off time and then a dinner/auction/dance. The banquet room was decorated SO nice! And the dinner was A-M-A-Z-I-N-G!!!!!!!!!!! The meat was either chicken or this fall-off-the-fork BBQ brisket. There was also green beans, corn, and mac & cheese. It was sooo great! Then they had about an hour-long dance for the kids. I didn't realize how many kids there were until then! The DJ was great. He played all sorts of younger-type songs, plus some parent/child songs. Then there was an auction (no, not a real auctioneer) and a silent auction.
The highlight of my night though, by far, was meeting Matt Luke in person and getting his autograph. (He used to play for the Dodgers, Angels, and another team...and he currently works for the Dodgers.) I introduced myself and told him that my 4 month old has a nevus on her head. He asked what her name is and I told him. Get this.... He also has a daughter Brooklyn...ALSO named after the Brooklyn Dodgers! Coincidently I had my Dodger's shirt on, so I totally explained how big of a fan I am!! HA! I wanted to score lifetime season tickets, but I settled for the autograph! ;o)
I can't believe the conference is already over! My supposed to be R&R time was non-existent! It rained the entire time I was here...and it finally warmed up in MT...figures! But that's alright. I'm very glad I came. I did say bye to Pierre and got a huge stack of brochures so I can hand them out. I also got a copy of the whole surgery plan by Dr. Bauer that's put together in a booklet.
So I go home tomorrow. I hope the flights are good...

Thursday, July 8, 2010

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 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!

Wednesday, July 7, 2010

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!! 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!

Friday, July 2, 2010

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: and you'll be published! ;o)