Surgery Day

Hannah's surgery was this morning and it all went very well - she came through it all beautifully. Dr. McCarthey was very pleased with how everything went and he was able to insert the semi-buried device, which is the one that we wanted. He said that there was a minimal amount of bleeding and that it all went well. Dr. Grayson finished the time off in the OR by bonding the splints to her teeth and then she was moved to the ICU at 1pm, their time. John called me from the ICU around 4pm his time to let me know that she was doing well and so that he could hold the phone to her ear so she could hear my voice. I told her I loved her and then was surprised when I heard her sweet voice telling me she loved me too. We were told that it would be a couple of days before she would be able to talk, so that was a lovely surprise to hear her say a few things. John said her main complaint at this point is that she's really hungry but it won't be until tomorrow before she can have anything and even then its only clear fluids. She won't be impressed. We have always found that she in at her hungriest after aneasthetic. So she's doing well. Thanks for all the prayers - she is being well covered.

Tomorrow's the Day

It's Tuesday night and we're ready to go. Bags are packed, supplies are in the fridge ready for Hannah's return from the hospital, NYC church family on board helping out with some meal preparation. All is good, oh, except Hannah's not interested in having surgery. If she goes to the hospital for a few days she will miss something at the house and that ladies and gentlemen, is totally not okay. Life is about activities, friends, and what's on the "chalk board" for tomorrow. Each morning before we have breakfast, Hannah and I go down to the foyer and see what is on tap for the day. Today there was an afternoon tea from 2-5, mom's support group at 4, new guest orientation at 6 and tickets to see the Mets play at Shea (bus leaving at 6). No sponsored evening meal tonight so we'll have to fend for our selves. Hannah's life revolves around what is going on in the house and can she and her friends attend? She is loving life here and surgery tomorrow is going to be an awful inconvenience.

Monday night the Heller Family Foundation hosted a carnival here at the house. The living room was transformed into a place of fun for the evening. The Heller's put out an incredible meal and then had all the children come to the carnival. There was no midway or rides but there were carnival games galore. Ring toss, bowling for points, basket ball hoop shooter to name a few. They had twisted mirrors, a mime, a juggler and a magician. Lots of Candy floss, cookies and other assorted sweets were demolished by all who came. Each child who played a game won a prize and received tickets that they redeemed at the end for their choice of parting gifts, Hannah chose the Holiday Barbie or course. Each family also received a $25 gift certificate donated by the Heller's for one to two local merchants (a grocer or pharmacy). It was a total blast. Everyone was so charged up by the end of the night that it took Hannah until 10 o'clock to wind down and fall asleep.

Wednesday is Hannah's surgery as I mentioned above. She has to be at the hospital by 6:30 am and should be out of the OR by 1 pm. I am "roomin in" at NYU on Wednesday and Thursday so there won't be a post from me until Friday at the earliest. Pray that Hannah's surgery goes well, that the device that is implanted is the lesser obvious one, and that the pain and swelling will be minimized so she can get back to living life to the fullest in the Big Apple.

That's it for now.

Hannah and John

New photos on line

Just wanted to mention that John was able to post new photos on the internet today. Here's the link: http://picasaweb.google.com/John.Davies001/NewAlbum2209081137AM#. Enjoy!

Monday Morning

Hannah and I had a very sad day Thursday having to say goodbye to Judy, aka Mum. It was so good to have Jude here and for her to come and meet the doctors and others who are supporting Hannah through this entire process. We also had a tour of the floor where Hannah will be once her surgery is over. Hannah took us to FAO Schwartz so that Judy could see the piano and the Barbie display and she also took us on a horse and carriage ride through Central Park. It was really lovely. According to Hannah it was very romantic.

Friday Hannah had a CAT scan. Lots of lead up to a very quick procedure. Hannah managed perfectly as she had to stay still for about 5 minutes while they did the scan. I got watch the computer screen and that was very interesting. We then came home and Hannah spend the rest of the day playing at the house.

Hannah really likes living here. Everyday she waits until 11 am so that she can go to the playroom and hang out. If her friends are there even better. The staff are wonderful here and they take great care with all the kids and families.

Hannah and I went to a renaissance faire on Saturday. Talk about over the top. The site was about an hours drive from Manhattan, in the "mountains". Hills actually but quite beautiful none the less. This place is a permanent village. There were merchants selling clothes, crafts, swords and armour, as well as foods that you might have found in the times of Robin Hood and his merry men. The exhibiters were all decked out in period clothes and talked as if ye were in times long ago. What was incredible was the costumes of people who paid to go. Some were dressed as monks others a wenches and still others as magicians and knights. The array of costumes was impressive. They also hosted a joust. Three teams battled in front of Queen Elizabeth to win their choice of maidens from the crowd.

Hannah's made a new friend, Grifthin, he is 4 years old, they had a blast together. He will be here in NYC until the end of December having treatment for cancer. An incredible kid with a great family.

Sunday we went to church, Trinity Grace Church. The community has come around Hannah and I in a great way. They are helping out by preparing some post op food, will visit us in hospital and have invited us to hang out before and after surgery. God is so faithful!

Monday is laundry day, again. It seems that you get laundry done on Thursday and your back at it again on Monday, oh well, it means Hannah can hang out and play at the house while til everything is folded and put away, or maybe just tossed on the couch so we can go out and do something and folded once Hannah is in bed.

We have two more days until surgery so we're thinking about going to the Bronx Zoo. Keep coming back to see if we made it. I will create a new web album in a couple of days so keep your eyes peeled.

TTFN

Hannah and John

Sad Goodbyes

Very sadly I said goodbye to John and Hannah at Newark airport yesterday at 4pm. We went for a snack before we took me to the departure gate and Hannah was very quiet and holding on to my arm very tightly the whole time. It was extremely heartbreaking to say goodbye. Knowing what John is going to have to live on his own now and not being able to be there to support him through it. And then leaving Hannah knowing what she is about to face. After our appointments this weeks I have a much better sense of what she is actually going to be living through and that made leaving her even harder. I have always been with her through all of her surgeries so to be so far apart from her as such a time as this is very difficult. Here is a link to all the pictures that John and Hannah have taken in New York so far - we thought you might like to see them. Enjoy. http://picasaweb.google.com/John.Davies001/NewAlbum1909081237PM#

And a carriage ridin' we did go....

Hannah woke up this morning and one of the first things she said to me was that we had to go on a carriage ride today. There was no getting around this today. So we took our time getting ready this morning (sure now that I've adjusted to the time change I don't have to be at the hospital before 9:30 in the morning!) and we headed off to an appointment with the child life worker on the ward that she will be spending a day or two in after her surgery next week. I don't think we have child life workers in Canada - but I think we should. Their whole purpose is centered on the child and maintaining the child's state of well being while at the hospital. We met two different women and they both were wonderful. The things they have on the ward impressed Hannah immensely - every movie her little heart desires, books, games, video games, crafts, an amazing play room. And when she and the worker were discussing what kind of bandages she may have on when she comes out of surgery the offer was made that perhaps Hannah would enjoy decorating a mirror that would be hers to keep and to use the entire time she's in the hospital to look at her bandages and at her mouth. Just amazing- every single thing this gal, I think her name was Stacie, thought of it. When she asked if Hannah had any favourite board games the first two mentioned they don't have on the ward so she is going to go and try to buy them before Hannah arrives next week so they are there for her. Hannah was pretty quiet throughout most of the tour and the talk about her surgery - she is just overwhelmed by the whole thing. It wasn't until she starting looking at what movies that they have there that she really began to get into it. I think she was very happy to see the back end of the hospital at the end of the visit. She and John are back on Friday as she needs to have a new CAT scan as her last one was two years ago and then, I believe that is her last visit there until surgery day on Wednesday. I hope it is for her sake.

So we left there and took a bus up 34th st? ave? I'm not sure which - its right by the hospital - and caught the subway by Penn Station - it was carriage time. We got off the subway at 72nd and Amsterdam? I think and walked to Central Park. Interestingly enough the street we walked up was the street that the Dakota is on, the building that John Lennon lived in and was shot outside of. We walked by where he was shot. I had to sit across the street and look at it for awhile and have a moment. Then we walked into the park and through Strawberry Fields (no Strawberries) and sure enough we found our carriage. Billy was our horse. Sammy was our driver. And we had a lovely ride around Central Park (which Hannah keeps calling Stanley Park). At one point Hannah, who was sitting between John and I and was leaning up against me, said "isn't this romantic?". It was so cute. Then we went past a point of interest where our driver told us a scene from Enchanted was filmed. Well....that began the singing and for the rest of the ride we had music ala Hannah - some parts with actions - and all on the seat across from us. At one point I laughed out loud because she worked a death scene into her song - and I got into alot of trouble for that. But it was fun - expensive - but fun. We then walked all the way home to the 'house' and now are waiting dinner being brought in by an Italian restaurant tonight. Unfortunately our carriage ride and walk home made us late back here and we missed Curly Neal - formerly from the Harlem Globetrotters who was coming to the house between 4 and 5pm tonight. I was looking forward to seeing him - Hannah has no clue who he is.

Tomorrow is my last day and then I'm home - I'm sad to leave, that's for sure.

New York Days with Hannah - by Judy

I wrote a wonderful blog entry yesterday all about our day, about arriving here and being greeted by Hannah - only to find out last night that there was an error on the page and it wasn't connected to Blogger, etc etc. So I have to start all over today. What a major pain!

First of all - for some reason - we are having trouble uploading pictures onto the blog. We're not really sure why this is - but for now its text only. I'm going to get John to try to make another Picassa album tonight and put a link here so if you'd like to see some pictures of Hannah then there is a way to access them.

So...three days together - its been wonderful to spend time together. I can't believe how their one week away felt like a month. I was so excited journeying here on Sunday -seeing Hannah's little face when I got here - fantastic. Yesterday we spent the bulk of the day at NYU medical centre, where Hannah is having her surgery. We met with the plastic surgery team in the morning, lovely to meet Dr. McCarthy who will be doing her distraction surgery. Everyone who works in the Institute of Reconstructive Plastic Surgery office at the hospital are the kindest, loveliest people. It has been touching to see how they all treat Hannah and to know whose hands I am placing her in. In the afternoon we met with a different plastic surgeon and a hearing specialist to discuss the possibility of ear reconstruction. This is the first time that we have had the opportunity to have this discussion as there is no one who specializes in this field in Vancouver. Interestingly enough when we mentioned that the one time, when she was three, that a certain plastic surgeon told us that he could remove her little ear whenever we wanted - the specialist here was horrified by this as, even a little ear, is important in the process of reconstruction. We still do not know if we will go the avenue of reconstruction or prosthetic - we have a few years to decide that, but it was interesting to have the discussion and hear what was said.

Last night at the "house" a church group provided dinner for all the residents. It was quite a gathering in the dining room. Hannah was briefly pulled away from the game she and her new good friend Katherine were playing to eat some food. Katherine is from Albania and is here because her sister is receiving treatment at one of the hospitals. She is a long way from home - and now has a new best friend in Hannah. I was so struck last night when I went to round up the girls from the 'living room' (huge room with half a dozen or so couches, grand piano, 14 foot fish tank, etc) where four 11-13 year old boys were playing a rowdy game of tag mixed with 'let me throw this mini-football really hard at your head'. Two of the boys didn't appear to be ill, may be siblings of other kids, but the other two boys are both bald and clearly here for cancer treatment. It was wonderful to watch them acting like completely normal boys, doing what all boys do when they get together in a huge room with a football. But sitting eating dinner a little girl, maybe 2 years old, came by holding Dad's hand, also receiving treatment for cancer and had tubes coming out from under her shirt and attached to a bag that her Dad was carrying. Just heartbreaking. So unfair seeing these little kids with cancer.

Today we were back at the hospital as Hannah was having her splints fitted with Dr. Grayson. The splints look very much like night mouth guards that people wear for grinding their teeth, but smaller and much thinner. There are three of them, top teeth, bottom teeth and then one they call the sandwich that goes in between. The splints will be bonded to her teeth during the surgery and then Dr. Grayson will use elastics to keep her jaw in alignment. To say the least these are going to cause her discomfort and distress. She will have trouble eating, talking, swallowing and sleeping with these in. And in they stay for several months after surgery. She will be returning home with these in still.

We found out quite alot more about postoperative eating today and what that will look like for Hannah and John. Its going to be really rough for the pair of them for several weeks. I wish I was going to be here to support them through this time.

So that's been our time so far. Its been mostly spent at the hospital, we're back there tomorrow, but that's why I'm here. I didn't come to sight see. It has been amazing to watch Hannah run around her at the Ronald McDonald house like she owns it. Its a very good place for her to be. She and John went to a Yankees game on Saturday (they lost) and then went to the last day of a fair in Central Park on Sunday where she went on different rides. And we also saw Celine Dion on the street yesterday just across from Central Park, she was emerging from a building and there was a huge crowd of people with cameras and video cameras. To begin with we had no idea who was there and when we asked someone who was standing watching this throng of people they had no idea either and then suddenly she stood up on the edge of her SUV and waved at everyone. Wow...and I didn't have my camera to capture the moment! Oh well.