Tuesday, December 1, 2009

Back to New York We Go...

Can't believe we are here! Back in New York City, and again, it is the night before Hank's surgery. And although we are here for the same reasons, so much is different this time. We've made it through the "big" surgery, and are back for the revision. And this time we are here as a family!
The flights from California to New York were pretty uneventful. We were fortunate enough to have kind ticket agents who worked hard to make sure we were all sitting together. Jeff sat with Charlie and Hank, who happily played their Nintendo DS games, and I sat with Lucy, who required quite a bit more attention...and all went pretty smooth...until Lucy dumped a cup of Sprite on my lap...leaving me soaking wet and not wanting to stand up for any reason! Luckily, that happened two hours into the flight, so by the time we landed at JFK, I was dry

At JFK, there was a serious lack of taxis to take us to Manhatten, but it gave the kids a chance to jump around a bit after traveling for 12 hours. We were all so excited to get in the taxi and thaw out and to share the sights with the little ones who would be seeeing it for the first time. And as Jeff and I pointed things out, we noticed that it started to get very quite in the backseat... All three kids had passed out and were sound asleep! Oh sure, they couldn't do that on the plane...

We arrived at the apartment and sat in the lobby as the security guards tried to figure out why they didn't know anything about our arrival. The apartment building is right across the street from the hospital and mostly doctors, nurses and med students live here. But Forward Face keeps an apartment for people like us...and for some reason this was all news to the security personnel. So there we sat...two adults, three children...all in overcoats, hats, and various other winter accessories...with four suitcases, 4 backpacks and one overnight bag. We looked like immigrants passing through Ellis Island! And then the best part...Lucy dancing around saying,"I need to poop!" Ah...good times!

I finally asked the guard where he lived and if he could cook? Because we had to stay somewhere... everyone was so nice and just doing their jobs, but we were so relieved when they cleared everything and escorted us to the apartment!!

We went out to Times Square and had a late dinner. What a great way to introduce Charlie and Lucy to New York City....Times Square..with it's bright lights and hustle and bustle. They were thrilled and Hank was so excited to show them the sights! But it was cold, and we were tired, so we didn't stay long.

We got back to the apartment and pulled out the beds in preparation of sleep. Hank has the day bed and the little ones are sharing the trundle. Jeff and I have the pull-out couch...and when everything is open, you can no longer walk across the room, but rather you crawl across beds to get to the other side. Right now, everyone is in bed sleeping. And I can see that Charlie's foot is on Jeff's...and they are in different beds! Luckily we are a tight-knit group and all really like each other! We'll see if Hank feels that way after surgery....

After a much needed night's sleep, the whole family woke up after 12:00 pm today! Of course we are still on California time... So didn't get to do much, but did have a nutrious brunch of "Dunkin' Donuts" and coffee! We finished up and headed for Dr. Siebert's office for Hank's pre-surgery consultation.
Going to see Dr. Siebert is like going to visit and old and dear, favorite friend. Our whole family was excited! Lucy and Charlie were finally going to put a face to the name and meet this mysterious person who the rest of us speak of so fondly. We walked in the door and Dee at the front desk, and Nilsa, who Dr. Siebert calls "The Boss", both greeted us warmly, with big smiles. The first thing they said was, "Hank! Look how tall you are!" And Hank smiled broadly as he intoduced his younger brother and sister.

After hanging up our coats...yes, there is a nice coat closet where you can actually hang up your coat...we were shown into an examining room to wait for Dr. Siebert. We didn't wait long...he came bursting in, smile on his face, twinkle in his eye, and a hand out for shaking. He is just the greatest guy! He was genuinely happy to see Hank and gave Lucy and Charlie high-fives, telling them that he has seen their pictures and heard so much about them that he feels like he already knows them.

Dr. Siebert sat down and took a look at Hank. He told Hank that he looked good and was pleased by his progress. He then told us what he was going to do in tomorrow's surgery. He mentioned a mid-face lift, lower eyelid lift, and putting some fat in his upper lip. He noticed a suture scar above Hank's eye where he had an eye-lift last time and said he would take care of that. As he scrutinized Hank's face, he reminded me of an artist, reviewing his work and looking how he can improve it. We showed him Hank's scar on his back where the tissue was harvested last time...the scar is really thick and raised, so they will be injecting some steroids into it to bring it down.

We talked about the surgery time and place and then just about Parry Romberg Syndrome itself and how more and more people seem to be coming forward with it. We wondered if there are a lot of people out there who are misdiagnosed and just finding out what they have. Or that for some people it is just so mild, that it takes them a longer time to seek treatment. But I seem to hear from at least one person every two weeks who is just now reaching out for help. It's exciting to know that this blog is reaching the people we intended it for! And Dr. Siebert keeps up with it and also refers his Romberg's patients to it. Hank is happy that what he is going through is helping others.

We took leave of Dr. Siebert's office, with him telling me, "see you in the morning, get a good night's sleep." "You too!" I told him as we walked out. We left the building and headed around the corner to Central Park. Hank knew how to get there and led the way. We were too late to go into the zoo, but the man at the gate of the children's zoo let us go in, even though we didn't have tickets. The kids thought it was great and loved seeing the amimals.

Afterwards, Hank and his siblings climbed on the giant outcroppings of rocks and "rescued" each other from falling off the "treacherous mountains". They were able to run and laugh, get dirty and just have some good kid time!

We hit FAO Schwarz on the way out and bought each child an "Ugly Doll". Hank got one the day before surgery last time and he took it to the hospital with him. So now he has a new one to go with him, and Lucy and Charlie have new friends as well. While at the toy store, we split up and Jeff and the boys looked at boy toys and Lucy and I got to look at all things pink and girly. I loved it! Dolls and Barbies...pink ballerina dresses and cute cuddly stuffed animals. Made me almost forget why we are here!

We finally pried the kids out of the store and went in search of dinner. The Upper East Side is not really conducive to children's restaurants, but we stumbled across a place called "Burger Heaven" and decided to try it. Kid-friendly and delicious. The kids had a good time and Hank had a big meal. (which is important since he couldn't eat for the rest of the night!)

So after a big day of fun...we headed back to the apartment to prepare for Hank's day of surgery tomorrow. The surgery is scheduled for 10:00 am eastern time. We are having the surgery in a surgery center instead of the big NYU hospital. And seeing as how this is flu season, I think we are grateful...

Hank has been in good spirits and is looking forward to getting through the surgery and recovery process. He spoke on the phone to Kyle tonight. (Kyle is the 20 year old in Connecticut, who had the same surgery as Hank when he was little) I overheard Hank tell Kyle, "I'm nervous about the surgery, but I am mostly just excited." And there it is. Again, Hank never ceases to amaze me! He can teach us so much. But I feel the same way...a little nervous, but mostly excited that this surgery can give him his face back...close to the way it was...and more importantly, gives him the chance to have a normal life.

Jeff and I have so much confidence in Hank's surgeon, Dr. Siebert. He is an amazing surgeon and a great man. I know Hank is in good hands, and although it is not easy, and we don't want our little one to go through all this...we know it is the right thing to do...the only thing to do...


  1. Terri... as always.... what a read!

    looking forward to reading more about how great the surgery goes, the new east coast adventures, and about Hank himself. This is his story, told through you, not just 'by you'... what a wonderful gift for him to have later. Keep it up!

    (and no spelling errors either!! :) )

  2. Terri...you are truley amazing thanks for sharing your adventure so far.

    You have just reinforced what I have always believed...that God does everything for a reason.
    My dad was diagnosed w/ terminal Brain Cancer in August 1993...he was given 6- 18 months at most....he lived for 13 1/2 years....We did as you have and searched out the best of the best and others w/ similar cancers..his was one of the worst and fastest growing there is, so we were pretty much on our own when it came to research....as the years went by my (our) goal became to educate others being diagnosed w/ the same disease and to let them know that there were actually some experimental treatments out there....The cancer was quite similar to the now late Senator Ted Kennedy...he lived 20 months, they had told him about 6. My dad's Dr. contacted Sen. Kennedy's team, and let them know what he had learned over the years....sorry to run on, but I am so excited to hear that you are reaching people out there and making a difference in there lives...you are proving what was so importants to me, w/ my dad, CAN BE DONE!

    God Bless you and your family and that wonderful and special child, Hank, that you have been blessed with.

    Keep up the awesome work, our prayers will always be w/ you...you are truley an inspiration!
    Take Care of yourself....& best wishes on Hank's speedy recovery!

  3. opps..sorry Terri...
    It's me Karen Crum Boutwell =)