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 head...in 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...