Update!

Today I have basketball practice! My team is Okay but we haven't won any games.  I am really excited to play because my next game is against Lowell and two girls from that team accidentally hurt me so I want to show them that if you hurt me I get up and keep going strong.

 As you can see in the photo, I was cast as one of the lead orphans in Annie. My friend Annika was cast as Annie, my friends from dance and school were cast as orphans and as other characters. I was cast as Duffy the biggest and one of the oldest orphans.

School is going well. I am doing the science fair and this year my project is mapping your taste buds. I am also doing history day and my project is Alexander Hamilton.

The video underneath is from my science fair project from two years ago.

Science Fair!!!!!!!!!!!!!!!

I won the Science fair for a SECOND time in a row!!!!!!!!!!

Here is my certificate.

Friends

These are my smash tastic friends who i love!!!

All Better

This is now April 4, 2016  and I am feeling great!!!! No cancer and I feel awesome. I am now in 5th grade at school and my favorite subject is math. I love sports!!!!!! The sports I do are soccer, basketball, dance, and more

The Disney Wish Trip Photo Album

I finally got around to organizing all of the photos from the trip that are worth sharing and uploading them to the web. So here they are all in one place. Click the photo below to get to the entire photo album.

Disney Wish Trip

Day 7: The Return Home

Our final day on our wish trip to Florida was spent shopping for souvenirs and traveling. We had a final breakfast in the village, spent some time just relaxing and enjoying the Florida weather, and then packed our bags for the airport. At 11am, we checked out of the Give Kids the World village, and hopped over to Downtown Disney for some souvenir shopping. Josh quickly spotted a Lego store and both Josh and Katie browsed every section of the store and came out with enough Legos to keep them busy for the next several days. Lego and souvenir shopping complete, we grabbed a quick lunch and then headed for the airport. Shortly after 9pm we arrived back in Burlington Vermont right at the tail end of a snow storm. There were 6 to 8 new inches of soft, powdery snow waiting to welcome us home. A limo was waiting to transport us home from the airport, a 2-hour trip in good weather. The trip took about 3 hours this time and all four of us ended up falling asleep during the ride. Our Disney vacation had tired us all out.

Even with a good night's sleep behind us, we are all still moving slowly today. The kids have both been assembling their Lego creations and watching movies. We need a couple more days of rest. With school starting up again on Wednesday, life will resume its normal pace soon enough.

Day 6: Universal Studios, Magic Kingdom & GKTW

This was another long day and the kids are both tired. We started off with Universal Studios, and spent several hours exploring the park. There wasn't enough there to hold our attention for the whole day, so we eventually headed back over to the Magic Kingdom. Since this was our second trip to the Magic Kingdom, we focused our attention on the two rides that we wanted most - The Thunder Mountain Railroad and Splash Mountain. In just 3 hours, we managed to ride Thunder Mountain 3 times and Splash Mountain twice. Then we left Disney World and came back to Give Kids the World in time for their weekly Christmas celebration. Christmas at Give Kids the World was quite fun. The kids got to meet Santa and have their picture taken with him. They were given Christmas presents. They had a sleigh ride. They saw a parade and participated in a dance party with other kids and all of the Give Kids the World characters as bubble snow fell to the ground around them. When everything was finished, we took the kids out for dinner and they barely made it throuh dinner awake. When we got them back to the villa, they collapsed into their beds without argument and passed out for the night. This was our last big day of park hopping. Tomorrow, we check out of the village, do a little shopping and then we are headed for home. Our wish trip is almost over.

Day 5: GKTW, Sea World & Medieval Times

We are on our way back to Universal Studios so I don't have time to post much right now. However, below is a video montage of everything that we did and saw yesterday at Give Kids The World, Sea World, and Medieval Times. Medieval Times turned out to be the real highlight of the day with Josh being knighted in a ceremony with the king and Katie winning the red knight's favor after he won a tournament. We are having the time of our lives.

Day 4: Universal Studio's Islands of Adventure

Today was another big day. We spent the whole day at the Islands of Adventure in Universal Studios. It is another huge park, similar to Magic Kingdom in that there are rides and attractions everywhere. We spent much of the morning in the Dr. Seuss themed park, had a huge lunch at Bubba Gump's and then headed into the Harry Potter and Jurassic Parks. The Harry potter park was amazing and the rides (3) were terrific. Katie found another roller coaster that she absolutely loved, called "The Flight of the Hippogryph". We rode that 6 times. Josh and I also discovered the Harry Potter simulation ride where you fly over, around, and through the Hogwarts school on a broom. This was the one ride that has come the closest to making me sick. It was also so realistic that Josh was afraid to go on it again. But WOW! What an experience. 

We finished the day by getting absolutely soaked on a couple of different water rides and then heading back to our villa for some pizza. Tomorrow, we head to Sea World!

Day 3: Animal Kingdom

Today started out slowly. After dragging the kids and ourselves out of bed this morning. We spent some time at Give Kids The World getting a good breakfast and having some photos taken with Mickey, Minnie, Goofy, and Mary Poppins. I spent some time updating the blog while Amy and the kids rode around the village on the little train that they have here. Then, we headed over to Disney's Animal Kingdom - an extra large version of Granby Zoo but with a safari ride and live entertainment. It was a good choice for the day after Magic Kingdom because meandering slowly through the animals and taking the time to sit and watch the live shows gave us a chance to recouperate. The shows were spectacular and the animals were lively and active. However, Josh couldn't wait to get to the parks 2 major ride attractions, a tube ride down a river designed to soak every rider; and a roller coaster named Everest. The river ride soaked Katie to the bone. Luckily we brought extra clothes for just such an incident. The roller coaster was big, fast, and scary - I know from personal experience because Josh needed someone to go with him and this being a wish trip I couldn't say no. At the end of the day, we came back to Give Kids the World early enough to catch a late dinner and get the kids into bed at a reasonable hour. Tomorrow. We're off to Universal Studios! :)

Day 2: The Magic Kingdom

Yesterday we went to Magic Kingdom and we had an absolutely incredible time. What a way to start a Disney Vacation. The rides were fun, but the presentation and the amount of effort that goes into making everyone feel welcome is just incredible. Katie WAS a princess for the day and everyone went out of their way to make sure she was happy and having a good time. We spent more than 12 hours in the Magic Kingdom and still didn't see everything. Part of the reason might be because the kids fell in love with Splash Mountain (3 tiimes) and the Thunder Mountain Railroad (5 times).
Our Give Kids the World pass and our Make-a-Wish buttons granted us access to more than we coud have ever imagined. We were able to walk past lines that others would have to wait in for hours for rides, for photo ops, for everything. If a park employee caught site of our credentials, we were treated like royalty. Below is a video that shows just some of the things we did and saw at the magic Kingdom.

Day 1 in Kissimmee at Give Kids the World

There is no easy way to explain how much fun we are having. For starters, the limo ride to Burlington was very cool; for once, we were all in the backseat and not separated, so we all curled up and lounged (after the kids had tried out every last seat in the limo). Thanks to my folks for dinner and to our wish granter, Joe, for breakfast. The plane ride was a huge hit. The kids loved flying, and they were great on the plane; no one got sick, and we all behaved ourselves. (And we got to see the cockpit...) After a quick lunch at Katie's Kitchen (really--it's Boston Market, and it's really good), I went to the orientation at GKTW, where it was frankly overwhelming to realize how much there was to do and how much we had access to during our stay. Picture an enveloped FILLED with theme park tickets. It was like an informercial: "But wait:  There's more..." We played in the interactive water garden (so cool) and then played in this huge pool with several other families. That's right--We swam in a heated pool OUTSIDE in February. Fun! We had dinner at the Gingerbread House, which features real entress (pot roast!) for the adults and kid food for the kids. The kids were almost asleep at dinner, but they rallied for the carousel, which we rode again and again. Katie would have stayed on the carousel all day and happily. Last funny story: There is a party every night at GKTW. Last night's shindig was a party for Mayor Clayton, a six foot tall rabbit who tucks the kids into bed at night. There were tons of kids running around having fun, dancing and getting their faces painted. There were party hats, cotton candy, sno cones and cupcakes. The rule here, by the way, is that we can all have ice cream all day--whenever we want it, as many times as we can eat it and not get sick. Here's a hint about day two: Ice cream featured prominently in our breakfast plans. :)

On another note: Everything about GKTW is wheelchair accessible. Wheelchair bound kids can ride the carousel and the train. They can play on the pirate ship. They can use the slide at the playground. This place is nothing short of  miraculous--and it staffed primarily by volunteers, who smile all day long and who spoil the kids rotten. My cheeks hurt when I went to bed last night. I don't know when I have ever had this much fun.
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Off to Disney...

Katie Gets a Wish!

In November of this year, we contacted Make-a-Wish on Katie's behalf and they gladly granted her a wish. A couple of wish granters came to our house to speak with Katie about her wish and without a second thought, she told them exactly what she wished for. She is a happy, healthy five-year-old who believes that she is a princess so what do you think she wished for? Of course, she wish to go to Disney World!

So Make-a-Wish jumped into action and made all the arrangements and Katie is going to Disney World. She will be treated like a princess during her stay at Give Kids the World, "a 70-acre resort complete with over 140 Villa accommodations, entertainment attractions, whimsical venues, and fun specifically designed for children with special needs"(gktw.org). Just 10 miles from Disney World, Sea World, Universal Studios, and the many other attractions in Kissimmee and Orlando, Give Kids the World will be Katie's home base for 7 days while she visits theme parks and has experiences that she has only ever seen on TV and dreamed about. As an added bonus, parents and siblings are expected to tag along and have just as much fun as the wish kid!
We will post pictures, videos, and more blog entries about her wish trip soon.

Fall Update

Not really one to slow down, Katie has now taken up Karate and Dance. Here she is posing in her new karate uniform.She is growing very well now and getting stronger every day.

A quick photo from her birthday party.

Katie and Josh heading off to school

Success

Katie's port surgery was a smashing success. She was in and back out of the hospital before she even knew what was happening. The idea of the surgery, of losing the port that had been with her for so long, was scary for her. She was very brave about going in to have surgery, but every now and then, she showed us that she was actually quite afraid. She would get upset and tell us that surgery was scary and that she was afraid of having her port out. However, when the doctor put the grape smelling gas mask on her, she went right to sleep without any complaints. When she woke up after the surgery, she had another moment of fear and told us that she was afraid of having her port out. She was quite shocked when we told her it was over and that her port was gone.

Her recovery has gone very well. She has showed no signs of discomfort or infection. In fact, she had some regular Tylenol at the hospital on the day of surgery and hasn't had any since. We were sent home from a prescription for Tylenol with Codeine, but we didn't have to fill it.

Today, we are headed back down to Fletcher Allen for a follow-up appointment and her end of treatment party. The doctors and nurses in the children's specialty clinic are actually going to throw a small party for Katie today to celebrate the fact that her treatment is over.

Going Strong

Katie is really doing well now that her chemotherapy has stopped. All of the follow-up appointments have shown that her body is recovering exactly as it should and there is absolutely no sign of cancer. I can't think of any better reason to smile. :)

Katie will have her port removed on August 13th, just seven days before she celebrates her fifth birthday on August 20th.

End of Treatment/Princess Dance Camp

We are done! More importantly, Katie is healthy! Katie trooped through one last lumbar puncture and one last bone marrow aspiration on Thursday, and we got results early Friday morning. She has been off her medications for three weeks now, and yet there is still NO SIGN OF CANCER in her bone marrow, spinal fluid or blood. Woo hoo! Our friends must think we are crazy--We have announced the news, completely unprompted, to anyone we know who walks within ten feet of Katie, and we have grinned and danced each time we have shared the news. Suffice it to say, this weekend's Relay for Life was a real celebration.

People have asked whether or not Katie understands that she is currently cancer free. She does know that she has finished her treatments and that we are extremely proud of her. She knows that the cancer is gone. She is not jumping with joy, though--she is simply taking it in stride as she has taken everything else in stride for the two and a half years (!) we have dealt with cancer. For her, it seems, this is just another event among many. For us, Thursday's phone call was like every holiday in the calendar year celebrated all at once. We are giddy with the news. Additional samples of Katie's marrow and spinal fluid traveled to Johns Hopkins, and those samples came back clean, too, so we are further reassured that the nightmare that has driven our lives for such a long time has really gone away. It's hard to explain how much lighter I feel and how much my sense of the world is already changing.

On a funny related note, Katie is enjoying camp this week: Princess Dance Camp. (No. I'm not kidding.) This is the dance studio to which I took a nearly bald, pasty white, skinny and uncoordinated Katie just as she started Maintenance therapy. She had just turned three, and she wanted to dance, so I let her try it. That was just weeks before her immune system fell apart, and she missed so many weeks of dance lessons that we finally gave up. She was heartbroken. I didn't even dare enroll her this last September--I couldn't deal with the idea that she might start again and then have to drop out. Princess Dance Camp was just too good to pass up. The Katie who waltzed into dance class Monday morning didn't even pause to look back as she left me in the waiting room and went to join the other little girls. She has long, curly, unruly hair. She has color in her cheeks and little brown freckles. She has the muscles of a serious runner. And she is strong. She dances each morning for two hours, leaping about in ballet slippers and clomping around in her tap shoes. This is all new to me--I never danced, and I don't care whether or not she becomes a prima ballerina. It is simply moving, in a way I cannot completely explain, to watch as she tackles a new challenge that was off limits for a long time. She loves to push her body. In fact, we ran laps and then went swimming after dance class on Tuesday, and she never tired. She can take the strength that she needed to muscle through a grueling chemotherapy regimen and apply it to other endeavors of her own choice now. She gets to decide how and when to use up the strength, energy and power she has regained. She is amazing.

Local readers will be pleased to know that she is participating in the Derby parade this Saturday. She is a princess on the dance studio's float. Oh, my. While I am more at home hiking, I will very proudly walk beside the float as she celebrates the good health that allows her to play this way.

Relay for Life Fundraiser for Katie

Katie's cousin Eric organized a fund raiser for Katie and our Relay for Life team. He and his soccer team raised $300 for the Relay for Life in Katie's name. At a soccer game today near Katie's home town, the whole team wore pink arm bands to signify their support for our fight against cancer and they gave Katie a giant check for $300, one pink rose from each person on the team, and a soccer ball signed by every person on the team. It was a heart warming event and we are very happy and thankful to the team and the parents who support them. We are especially proud of Eric's efforts to organize this fund raiser and make his little cousin Katie feel so very special. Thank you.

The Last Infusion and a Farm Update

Katie had her last infusion of chemotherapy Friday. She is still taking chemotherapy drugs in pill form for another 16 days, but she will not have to go back to Fletcher Allen for any more chemo through her port. She is feeling good and her blood counts are up. With any luck, she will finish out these next 16 days strong.

Back on the farm, we added another calf, 36 more chickens and 3 turkeys. Katie's favorite farm critters right now are the chicks. She really loves them when they are young, cute, and fuzzy.

Relay for Life Coming Up Fast

We are participating in the Relay for Life again this year. The relay will take place on Saturday, June 26th this year at North Country Union High School. Katie and Josh both plan on attending and staying through the night. Last year, Katie lasted late into the night and walked lap after lap despite having had a heavy dose of chemotherapy that included intravenous Vincristine and intrathecal Methotrexate just two days before the event. This year, she will get her very last dose of chemotherapy eighteen days before the event. This will be her very first Relay for Life as a post treatment survivor.

If you want to join our team or donate to our cause, please visit http://main.acsevents.org/site/TR/RelayForLife/RFLFY10NE?team_id=664088&pg=team&fr_id=23452