Wow. I still can't decide if this year has gone by really fast or really slow. Depends on what I'm thinking about, really. When I think about all that Carter's been through it seems reeeaaaaalllllyyyyyyy lllloooooonnnnngggggg. But when I think that my baby is already almost 13 months old I think this year has flown by. But tonight, I'm thinking about that stupid day one year ago when that dumb doctor (yeah, I'm hating the messenger) told us that our perfect little boy had leukemia. I remember so clearly certain moments of that night but much of it is a blur. I'm just glad we've put a full year between us and that lame-o night. I've been thinking about the roller coaster it's been ever since and thought about taking you all on a photo journey of this year. BUT, I don't want to. It's still painful to look at pictures from last January. And February. And March... I think you see where I'm going with this. So instead, here's some pictures from this past month. Carter is doing so well. It was very fitting that he included in his prayer tonight "I hope that I will never get a dragon again". I hope so, too, buddy. I hope so, too.
He has grown and learned so much through all of this. He amazes me with his maturity and wisdom and ability to communicate his emotions. He is even more stubborn now, but also very sweet. He still talks about different things that he's had to do and still has to do and it's sad and kinda cool how he describes it all. I like hearing his perspective. He's gonna do big things with his life.
We are glad to (almost) be rid of 2011. Bring on 2012!
The week before his scheduled clinic visit, Carter had to make an unexpected trip to the hospital because of a fever. He had a very minor ear infection. They took blood to do a blood culture and gave him a dose of antibiotics and sent us on our way. He's been totally fine ever since. He did laugh really hard at the nurse when she called him "baby" and told her, "do you know why I'm laughing? Because you called me baby, I'm not a baby!" He laughed and laughed.
Then last Thursday was his monthly visit. He did really well and all looks great. His ANC is down to 700 and his white count is down in the low teens ( I don't have access to his print-out right now), but all the other numbers are looking great. This drop is ANC is most likely due to the higher dose of one of his oral meds. They want it between 750 and 1500 so we'll so how it looks next month. While we were there, we got to go choose a gift for each of our kids out of this huge bin of toys. A family that had a child go through treatment there years ago donated 3 or 4 huge bins full of toys for the patients and their families. I am so amazed and uplifted by the generosity of people I don't even know who have done awesome things for my family.
He loved painting while we waited for the sedation team to arrive.
Carter had his monthly clinic visit today. Everything went great! He's doing so well. His blood counts are awesome: White blood cell count 3100, ANC 2400, Hemoglobin 9.9 and platelets 408,000. They like to keep his ANC between 750 and 1500 and since it's been consistently higher than that, they doctor increased the dosage on one of his medications. Whenever they increase or decrease the medicine during maintenance they do it very slowly in the hopes that there won't be a dramatic drop in counts. Other than that, everything is going fantastic.
He had a sedation today for another lumbar puncture with chemo in his spinal fluid. I have talked with the nurses a few times throughout this last month about doing a "conscious sedation" instead. Carter really hates the sedation medicine and he's been throwing up every time he wakes up from it lately. The conscious sedation is where they give him some other drug that doesn't knock him out but still dulls the pain. It sounds to me like the medicine that dentists use but I don't know how similar it is. They usually don't do it with kids so young but I know Carter would be still and cooperative. They couldn't get it arranged for this time but we talked about trying it out in Feb (our Dr. will be gone for our Dec appt and there's no sedation in Jan). But his sedation went so well today that I don't know if I'll even bother trying it. Also, I told Carter today what they do when he "takes his nap". I've never told him that they stick a needle in his back because I thought it would freak him out but his only response was, "And I don't even feel it? Because I'm asleep?" with a grin on his cute little face. So then I asked him if he wanted to try doing it without being asleep and he looked at me like I was crazy. I think we'll stick with the sedations for now. (After he woke up today his first words were, "I didn't even feel my back poke!") I am pretty sure I know the trick, it's all about an afternoon appointment. They try to schedule sedations as early as possible so the kids don't have to be fasting all day long. They just skip breakfast and come on in. For Carter, he does much better if he can have breakfast and drink juice the rest of the day. The downside is traffic coming home after an afternoon appointment is no bueno. But it's a sacrifice I will make for a happy boy. And was he ever happy today. He loves all the attention he gets from everyone at the hospital. The nurses are always so nice. He did something (don't remember what) and I jokingly asked him if he thought the nurse would get mad and he told me, "No, nurses NEVER get mad. They are always SO nice!" And his chemo pal came and did battle with him today:
This is Carter's favorite thing to do with him. They line up the dinosaurs and then Carter beats them all with his giant ant. Today they added ninjas and a transformer to the battle mix. They had a blast. And everyone was so excited to see how long and thick his hair is. Everyone commented on how great it looks and how handsome he is. Like I didn't already know. And in case you're wondering, there was no trouble at all today with his port! YAY!!!! A few nurses came in to tell me how excited they were that it's working now. It was a good visit and I'm glad it's over.
Also, one other thing I forgot to mention. We almost had to delay our flight for another day! Sat morning we were packing and I went out to the living room to see Carter all curled up on the couch under his blanket. I went over and he felt really hot. I started to get worried and we talked about what we should do. A few minutes later he threw up. I called the manager and told her what was going on and she was so nice and told me she'd reschedule our flight, no problem. Well, not two minutes later, Carter was totally fine. No fever, acting totally normal, running around like a crazy boy. Don't know what that was all about but I'm glad it was so short-lived and we got home on time!
We started our last day there with going to the star castle. Every wish child that stays at the Village gets a star to put their name on and then they put it up on the ceiling. Here's Carter with his star. I can't believe I didn't take a picture of the ceiling! I was video taping so that's my excuse, but it is completely covered with stars. They built another star tower to add more and that's where Carter's star is now.
There was a really fun play area in there, too. Also, all three kids got a "wish pillow" to take home.
For our last day we went to Epcot in the morning. All three kids fell asleep really quickly in the strollers so we walked around the world showcase. They had their Food and Wine Festival going on so it was SO crowded. We would've loved to stop and try some food but the lines were ridiculously long. After being spoiled the whole week and not having to wait in any lines, we just couldn't handle that. So we just walked right on through. It was really beautiful.
Just a friendly reminder :)
Part of Germany
Dennison in France.
Does that look comfortable to you??
Once they woke up we went on the Nemo ride. These seagulls on the rocks were saying, "Mine. Mine. Mine."
That was the only ride there for them so we headed back over to Dr. Seuss Landing at Universal.
It was so well done. And it was decorated for Christmas.
This playzone was really fun. It's built around the book "If I Ran the Zoo". There were a lot of little activities and games for the kids.
Carter trapped his daddy with water
And he loved it.
We went back to ride Spiderman and then he wanted to do the roller coaster at Harry Potter a few more times. Or 6 more times.
Looks like a successful week!
This was the first leg of our journey. The boys did so well, just playing with their crackers the whole time.
That's right, they played with the crackers for over an hour!
On the long flight from Atlanta, this magic happened! They slept for over an hour. It was so nice. They did really well they whole time.
Once we got back to our airport there was a limo waiting to whisk us away. We got home about 8pm and could hardly wait to get everyone in bed, including ourselves. It was such a fun trip. We are overwhelmed with gratitude for everyone who made it possible for us to have such a wonderful time together. The Make-A-Wish people and Give Kids the World people were all so sweet and kind. It was truly magical :)
The fifth day may have been the boys' favorite because we got to see SUPER HEROS!!!
They both are a little obsessed so they were loving Super Hero Island in the Islands of Adventure park at Universal. Although I'm not a super hero fan myself, it was a really cool place. It looked like we were inside a comic book.
Unfortunately, there weren't many rides that they could go on. This was one that they both qualified for but we couldn't take the baby on it so her and I watched from the sidelines.
At certain times throughout the day all the superheros come riding in on their four-wheelers and make a big fuss. They all jump off and go take pictures with people. Then they all get back on and ride away together. It was hilarious. The boys were so excited to see wolverine but were a little nervous to get close enough for a picture. Carter decided to break the ice by showing him the wolverine penny he'd just made. Jude is a little more free-spirited and wanted to show him his wolverine underwear. A little awkward.
They were both very excited to see spiderman. Jude ran right up to him and started talking to him but then wouldn't stand by him for pictures. Whatever.
Captain America riding away.
Jude with Ironman.
There was another ride that Carter was tall enough for but Jude was not. It was the Spiderman ride and it was pretty awesome. We had to entertain Jude while Carter went on it several times so we found some cool stuff to buy and got some ice cream.
Can you guess where we went next?!?! The Wizarding World of Harry Potter!!!! Ok, so we went into this trip knowing that we wouldn't go on any rides that the boys couldn't do and our main focus was for them to have a blast. We had committed to do whatever they wanted when they wanted to and just spoil them for the entire week. With one exception. I wanted to go on the Harry Potter and the Forbidden Journey ride! It worked out perfectly because the two youngest fell asleep as we were walking over there so we wouldn't have done any rides until they woke up anyways. And since we could go to the front of the line, we both got to go on the ride while they slept and Carter climbed over a wall a few times. It. Was. AWESOME! The line to get on the ride goes through Hogwarts. I really felt like I was there, it was so well done.
Outside Hogwarts.
The staircases didn't really move, although I was a bit nervous walking up them.
We walked right by Dumbledore's office. There was a hologram of him talking to us. So cool.
There was another hologram of these three talking to us also. So funny and so cool.
The sorting hat
There was also the fat lady - the entrance to the Gryffindor common room. It was so awesome.
Hagrid's place
There was another ride called Flight of the Hippogriff which was a small rollercoaster. It was small but it was fast and Carter LOVED it. He probably went on it ten times.
That's him and Daddy in the front.
HoneyDuke's
Hogwart's Express
Zonko's Joke Shop
The Hippogriff.
riding the roller coaster again.
chocolate frogs in the window.
Then we headed to Dr. Seuss Landing. We didn't have much time before the park was to close, but don't worry, we came back here the next day.
This kept them awake for a while.
The Cat in the Hat ride.
That night was a Christmas party back at our village. This is us on a carriage ride. We also got see Santa and got some gifts from him. They even made it snow in one small area. It was weird hearing Christmas music when it was so warm outside! But it was a cute little party.
