Katie Grace Kelley

The Disney Wish Trip Photo Album

2011-03-26T15:57:00.003-04:00

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

2011-02-26T14:18:00.000-05:00

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

2011-02-25T10:44:00.002-05:00

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

2011-02-24T10:03:00.000-05:00

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

2011-02-23T10:51:00.000-05:00

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

2011-02-21T23:18:00.001-05:00

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

2011-02-21T11:32:00.001-05:00

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

2011-02-20T09:34:00.002-05:00

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!

2011-02-15T22:05:00.000-05:00

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

2010-10-17T15:38:00.011-04:00

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

2010-08-19T10:46:00.000-04:00

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

2010-08-03T22:18:00.000-04:00

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

2010-06-30T19:50:00.001-04:00

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

2010-05-23T23:59:00.005-04:00

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

2010-05-23T23:32:00.001-04:00

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

2010-05-18T09:53:00.001-04:00

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

A Light at the End of the Tunnel

2010-04-22T16:32:00.001-04:00

Katie is at Fletcher Allen today getting her last Lumbar Puncture with Methotrexate. At today's appointment her doctors finally gave us a firm end date. Baring any more unforeseen occurrences, Katie's last dose of chemotherapy will be on June 8th 2010.

47 Days To Go!!!

An Over Due Update

2010-04-22T16:27:00.000-04:00

Katie has fully recovered from her sprained ankle. Once again she is actively running and playing. During her recovery she was still able to have some fun. She celebrated Easter with not one, but two outdoor easter egg hunts. One with her friends and immediate family and the other with her extended family. Although she was a little sore at the end of the day, she was happy. Since that day, she hasn't favored that leg again.

She did, unfortunately, run into a little trouble with thrush again. This time, I'm sure that it was caused by her inhaler. We were issued the inhaler with specific instructions to rinse thoroughly after every use because the steroid in the inhaler could encourage the growth of thrush in her mouth. One morning, in our rush to get to school on time, I helped her use the inhaler and then we forgot all about rinsing. The next morning she had a white growth forming on the tip of her tongue. Luckily we still had some medication left over from the previous case of thrush so we started having her rinse and spit the medication twice a day immediately. The thrush never got any worse and two days later it was gone. We caught it quick.

This past week Katie has been dealing with a case of the croup again. It was keeping her up at night and she was coughing so much that she was having trouble taking a breath. However, we managed to get it under control by putting two humidifiers into her small room, rubbing her chest with Vics Vapor Rub and closing the door as she slept. In the morning, the inside of her windows were covered with condensation, but she slept well and that is all that matters. We continued to use both humidifiers until last night when her coughing seemed to be under control. She slept with just one humidifier running and the Vics last night and she still slept fine. She might be getting over this round of croup.

Things have happened on our farm since the last time we updated the blog too. One of our pigs, Charlotte, had finally grown big enough for the slaughter house and was sent to the butcher. The kids said their tearful goodbyes as we loaded her up, but they were smiling again shortly after when it was time to feed the newest addition to the farm. We acquired a new calf. He is a Jersey/Holstein mix and we named him Mocha. He is only three weeks old and has to be bottle fed by hand. Katie thinks he is absolutely adorable.

Back on Her Feet

2010-03-24T06:54:00.000-04:00

Katie is back on her feet and walking around on her sprained ankle. She is limping a little bit, and doesn't dare to run or jump yet, but she is successfully walking all day long at school. She is very proud of herself.

Healing

2010-03-19T23:21:00.000-04:00

Katie's sprained ankle is healing slowly. The bruise, which was magnificent, is now reduced to just a purple area about 4 inches long and an inch thick along the side of her foot below her ankle. She still can't walk on it or even bear much weight on it, but she has stopped wearing the air cast and is now back to wearing her sneakers. With some prompting, Katie can use her leg enough to balance herself on two legs although the leg with the sprained ankle is just barely touching the ground.

She surprised us all this morning by trying to and succeeding at a very short crab walk in which she successfully bore at least some of her body weight on the injured ankle. She proudly exclaimed that it didn't even hurt. Hopefully for her, the worst of this injury is behind her and things will just keep getting easier from here.

And Now for a Sprained Ankle

2010-03-11T15:13:00.000-05:00

Katie recovered well from her Thrush. The Fluconozole cleared it right up. She was feeling good, eating well and getting lots of sleep in the days leading up to her last dose. So, we planned a sledding trip for the upcoming weekend. It was a disaster.

The trip started early Saturday morning. I wanted to get everyone on the hill early while the snow was still icy and fast. Temperatures have been climbing into the 40's during the day lately, and after a few hours of sunlight, the snow turns into slush. But first thing in the morning, it is compact and icy enough to walk on. I chauffeured the family to a hill just a few miles from the house where Amy would start at the top of the hill with the kids and I would wait for them at the bottom. The problem turned out to be that the snow was exactly as fast as I had hoped it would be.

Katie eagerly volunteered to go first. She hopped into her sled and headed for the bottom. Before long she was a little rocket flying down the hill and we could already see the potential for an accident as her sled began veering off the planned course and towards trees and bushes 50 feet off to the side. She was too far up the hill for me to get to in time and she was already too far down the hill for her mother to get to her in time. As I ran up the hill, I hollered to her to turn or roll out of the sled. She sat frozen, not knowing how to prevent the imminent crash and not daring to roll out of the fast moving sled.

As I watched, her sled plowed over the first few small bushes protruding from the snow and started to turn back in the right direction. For just a second, I hoped that she would actually make it through without crashing. Then her sled hit one bush too many end for end, ejecting Katie and sending her through the air for another three or four feet before she touched the ground again. When she hit the ground, she hit standing up and drove one foot into the compact, frozen snow. The rest of her body still had enough momentum to keep tumbling even as that foot tried to stay lodged in the snow. It eventually came loose and she tumbled a couple more times and slid to a stop on her face, already crying out in pain.

I thought she had broken her leg for sure, especially considering how easily she had broken her foot last summer. I quickly established that the only thing that hurt was her leg, and then I carefully took her boot off. Amy had arrived by now and we looked over Katie's leg carefully expecting to see very visible signs of a break. There were none, but Katie was certainly in pain. We took her back to the house to keep an eye on her and wait for the swelling. We didn't wait long. Within fifteen minutes we were on the way to the hospital, Katie sitting in her car seat with her leg carefully propped up on a box and using my coat for padding. To our great surprise, the x-ray showed no broken bones and Katie was sent home with an air cast to provide some support and a little protection.

This all happened five days ago, and Katie still can not bear weight on that foot. She has been at school every day this week, but when it comes time to move from one room to the next, her teacher carries her. When she just has to move around inside the classroom, she crawls. We still have the walker that she was given back when her neuropathy was so bad that she couldn't walk at all, but she refuses to use it. She says that hopping behind the walker hurts and she would rather crawl.

Her spirits are good and she is adapting well to her new limitations, but I sure do wish she didn't have to adapt. Whenever she tells the story, she is quick to point out that the whole trip was her "Daddy's idea" so her sprained ankle is "Daddy's fault". I have to agree. Next winter, we will choose a smaller hill.

Definitely Thrush

2010-02-25T21:54:00.000-05:00

Katie went to her doctor again today to get this latest issue diagnosed and it is Thrush. Most of her tongue is now white too, and she is still in a lot of pain whenever she tries to eat, but her doctor prescribed a new med, and we have already seen some results. With any luck, we caught this early enough that it won't spread.

Tomorrow, Katie has to travel back to Fletcher Allen for a follow-up, a blood test, and possibly more chemo depending on the results of the blood test.

A New Kind of Mouth Sore

2010-02-24T21:33:00.001-05:00

We don't yet know what kind of sores these are on Katie's tongue and on the roof of her mouth, but they hurt and they developed very shortly after leaving the hospital so no doctors have seen them yet. It looks like Thrush to us, but since we have never encountered it before, we can't be sure. You can click each image for a larger, close-up version. I'll post an update when we find out what this is.

Our Plans Changed in an Instant

2010-02-23T23:29:00.000-05:00

In the last post I wrote that Katie was feeling good and was looking forward to a vacation of rest a play. We were even planning a trip to the mountain for a little skiing. That didn't happen. The night that I wrote that post, Katie became ill and was vomiting from 3am on. By 9am the next morning, she had a fever of 104.3 and we were off to the hospital. Our first stop was North Country Hospital where her blood counts revealed some serious underlying problems. Her total white blood count was .2 or 200, her ANC was nonexistent, and her hemoglobin was 7.4. Everything else was just as low. She was then loaded into an ambulance and sent to Fletcher Allen for further treatment.

Once at Fletcher Allen, Katie recieved mega-doses of antibiotics just in case, and a transfusion to get her numbers up and out of the dangerously low levels to which they had dropped. She was also given simultaneous doses of tylenol and ibuprofen to stop the fever from rising any higher. It hadn't responded to a dose of only tylenol earlier. Katie was then kept at Fletcher Allen as an in patient in the children's hospital for the next two nights until she no longer had a fever and her blood counts seemed like they were rising on their own. She was released from the hospital today.

Katie is still neutropenic and not allowed to go anywhere without a mask on, but since her body seems to be recovering and no longer in need of the IV fluids or other maintenance drugs, she was allowed to leave the hospital and finish her recovery at home. We didn't actually take her home tonight though, instead choosing to stay in Burlington one more night with Katie's Grandpa Art and Grandma Kathy. We brought her here directly from the hospital and she immediately took a 3 hour nap. It is hard to sleep well in the hospital with nurses checking on you around the clock.

Tomorrow morning, we will actually head for home where Katie will be allowed to spend the next couple of days until returning back to Fletcher Allen for a follow-up and her first half-strength doses of chemotherapy again.

Infection Free

2010-02-20T19:28:00.000-05:00

Katie's ear infections are officially gone. Apparently the Augmentin did what it was supposed to do and the pain that Katie was complaining about for the last couple of days before going back to the doctor for a follow-up was caused by the fluid that is still in her ears. The doctor prescribed a nasal spray to help drain Katie's Eustachian tubes and sent us on our way. To help keep the ear infections at bay, Katie is also taking 2400mg of Xylitol each day. Xylitol is a natural sugar-alcohol that comes in the form of gum, syrup, or candy and our doctor recommended giving it a try. We bought the candy from our local health food store and Katie has no problem gobbling it down. Although I just read that Xylitol needs be given in a dose of at least 8400mg to be effective. We will probably increase her special candy allowance now that she is infection free again and try to keep her that way.

School vacation starts this week, and Katie is looking forward to both down time and time for play. She took a 3 hour nap this afternoon and only woke up because I woke her up. I wasn't interested in her staying awake all night after sleeping too long in the middle of the day. Tomorrow, if the weather cooperates, the whole family is going skiing and riding at Burke Mountain. Hooray for vacation!

On The Road to Recovery

2010-02-12T19:01:00.000-05:00

Katie hasn't had any follow-up appointments since her last visit to the hospital, but things appear to be getting better. She is no longer suffering from fevers at night, she claims that her ears are not bothering her, and the color is returning to her cheeks. We put her back in school this week, and although the first and second days back were rough with school directly followed by a nap, she finished out the week strong. She even got out to play on her snowshoes today with her other preschool pals and she appears no worse for her experience. It looks like she may be declared healthy at her follow-up visit next week.

Now, how long can we all stay healthy?

Update

2010-02-04T20:14:00.000-05:00

Katie's fever dropped a little lower over night, to hover around 101. In the morning I spoke with her doctors and arranged for a follow-up. At her follow-up The doctor and I spoke about Katie's recurrent ear infections and decided to try Augmentin, and augmented dose of amoxicillin designed to stay in her system longer to kill off more bacteria.

From the doctor's office, we were transfered to the hospital for another blood count, blood culture, and another dose of Ceftriaxone. At the hospital we were told that the previous night's x-rays had just been read and that the doctor thought he saw a shadow of pneumonia. New x-rays were taken, and it was confirmed that there indeed was some pneumonia in her lungs. However, the Augmentin and the Ceftriaxone both fight pneumonia as well as ear infections so no change in her medications are necessary.

Port access was a breeze again, and Katie's blood counts were the pleasant surprise of the day. Her white blood cells climbed back up to 2.6 and her ANC climbed up over 1200. Her hemoglobin was still low (I don't have the number handy) and that concerns us since fever tends to kill off extra hemoglobin.

During our stay at the hospital, Katie's temperature began to rise again. She was given some Tylenol to help keep her comfortable and although she felt better, it certainly didn't keep her fever down. Katie was discharged with a fever of 103.7 and we headed home. By 9pm, her fever had risen to 104.9. Happily, that was its highest point. Her fever slowly dropped over night until it was once again hovering around 100 this morning.

She has spent most of today flopping back and forth between feeling sick and vomiting, and then feeling great and chattering and playing as if nothing were wrong. As I right this now, her temperature has started to climb a little, and she is ready for bed. I hope she gets a good night's sleep tonight so that her body can begin to recover from this round of illness.

Emergency Room Update

2010-02-02T18:54:00.000-05:00

The doctor just came in to tell us what Katie's blood count is. Its low. Her white blood count is just 1.1 and her absolute neutrophil count is only 770. Her numbers have suffered a precipitous drop over the last four days. Considering an ANC of 500 will put her back in the hospital for days, we are a little worried about this. Also, given the number of illnesses floating around our house lately, a dropping ANC does not inspire hope of a healthy near future.

I'm also going to write down her basic number here so that we don't forget them...
ANC 770
WBC 1.1
HemoGlobin 8.1

So Much for Getting Well

2010-02-02T18:25:00.002-05:00

That cough that we mentioned in our last post has progressed in to something that sounds croupy, the ear infections never did go away with that last dose of Amoxicillin, and we are back in the hospital. This time, we are at North Country Hospital with a fever of 103.2. Katie is feeling awful, but dealing with it well as usual.

Port access went very smoothly. North Country doesn't stock the types of access needles that Fletcher Allen uses with Katie's port so access has historically been difficult here. However, at our last visit to Fletcher Allen we were given several access needles to keep with us in case Katie needed to have her port accessed again at North Country. The nurse used one of the Fletcher Allen needles today and accessed Katie's port with great ease. It made a real difference.

The plan for right now at least is to wait for the results of a blood count, wait for the Ceftriaxone to finishing dripping through her IV, get some medication for her recurrent ear infections and go back home. Hopefully, this will be just another routine visit to the hospital.

One Big Update: Good, Bad, and Ugly

2010-01-28T22:33:00.003-05:00

It has been a long while since we added entries to the blog, but this has not been an uneventful stretch.

First there was Christmas. We wished for and received a Christmas at home. Katie's health was good, and we enjoyed ourselves tremendously. The kids had lots of energy, and they immersed themselves in parties and play. Santa spoiled us rotten, and we had time to breathe. It was glorious.

New Year's even went off without a hitch, and the kids were happy to return to school, as were we. It is hard to believe that we are halfway through the school year. Katie continues to love school. She is always happy to get up and go. She has learned her letters. She recognizes her numbers. She can recognize (and even spell!) some words. She plays school. When her Nana asked Katie about her career ambitions the other day, she explained the full plan: She will teach at Lake Region with her parents. Then she will be President. Then she will be a surgeon. (Hmmm....Oddly enough, Joshua wants to be an engineer or an art teacher. It's hard to know whether or not to encourage the teaching madness...) Whatever the final outcome, we are thrilled that Katie takes such pleasure in doing well in school and that she has made sweet, thoughtful, energetic friends. (Joshua is also thriving at St. Paul's and has friends that we truly love.)

Katie's new project involves lots of snow and some fast skis. Joshua is a very skilled skier. He is brave, and he is fast. Katie is determined to catch up. She seems far too small to be skiing--in ski pants and a parka she is as wide as she is tall--but she got right into the J bar line at Burke with her dad, and off they went, proud mama trailing behind as Joshua went flying past. After two short sessions with her dad, she ventured off bravely on her own. Now we just need to teach her to stop (and maybe turn).

Unfortunately, we will not be skiing this weekend, as together we have managed to contract half the infectious diseases known to man in the last two weeks. Katie went to North Country hospital with ugly ear infections in both ears and with a fever that spiked through Tylenol and that continued for five days, causing her to miss an entire week of school. Before she had finished the amoxicillin, I ended up with impetigo, a skin infection that is surprisingly unpleasant and really unattractive. Joshua dragged himself through the week, tired and weepy. We thought he must be having another growth spurt. Wrong again. The lymph nodes that stuck out past his ears brought us back to our beloved pediatrician on Tuesday, where he was tested for mono. Despite all the physical indicators of mono, the test came back negative, but he is still pooped, and his swollen glands indicate that there is some kind of an infection swamping his system; because the infection remains unidentified and he cannot make it through the day without a LONG nap, he is home from school all this week. Is he contagious? Does he pose a threat to Katie? Who knows? North Country Hospital loves us, but our health insurance must have different feelings...

Katie returned to Fletcher Allen today for a lumbar puncture and her monthly chemo. She struggled with anesthesia, coughing a lot while under and producing phlegm during the procedure, so doctors had to sedate her more deeply than usual and vacuum the mucus from her airways. Gross...We are hoping that the contagion finds another family to torment and that the cough is not a sign of bad things to come. Despite the variety of germs and viruses that are likely actively attacking her body right now, her ANC is holding at 1600. Well enough to continue to live and play like any other 4-year old. Oh, well. Snow coverage is spotty after some rain last week, so we will abandon all hope of skiing and focus on getting well.

Mouth Sores - Gone, Cough - Returned

2009-12-23T06:58:00.000-05:00

Katie's mouth sores have finally healed and disappeared. They were a little easier to deal with this time, probably because we caught them so early and began treating them with the magic mouth wash immediately. But over the past several days, Katie has begun to develop another cough. It isn't bad enough to keep her awake at night, but it is effecting her ability to run and play. Any sort of physical exertion usually ends up in a small coughing fit.

It just so happens that our insurance company started a new program this year and we received a phone call about that program last night. Katie has been assigned a case manager and been given access to several specialist RNs whom we can reach via phone at any time. Amy spoke to one nurse last night who, as chance would have it, specializes in Asthma. After a long chat about Katie's medical history and current cold symptoms, that nurse told her that Katie's symptoms (the cough) were signs of unmanaged Asthma and not just a cold since she didn't have any other signs of having a cold. She asked about our Asthma control plan - We don't have one. She asked what Katie's latest results were on her peak flow meter - We don't have one. She continued to ask similar questions regarding Katie's Asthma and we continued to answer with similarly unproductive responses. It seems that we don't know enough about asthma, and Katie's numerous oncologists and even her pediatrician have focused on her cancer and its treatment while maintaining a wait and see attitude about her Asthma symptoms. The nurse was unimpressed and made several suggestions to get us started down to path to proactively managing Katie's Asthma.

As a result of last night's conversation, we will be making an appointment with Katie's pediatrician to start the conversation about an Asthma control plan that will include a peak flow meter and possibly a change in dose as well as type of Asthma medication.

Mouth Sores Return

2009-12-11T21:35:00.005-05:00

Katie continues to struggle with cold symptoms and some apparent reactions to her medications. A mouth sore materialized on the outside of her lip yesterday morning. It was small, and though it hurt, Amy assured her that it was just dry skin on chapped lips. Then she applied Chap Stick and Katie screamed in pain. It was not a case of chapped lips, but the first of now 5 mouth sores that have appeared in the last 24 hours. The first has gotten considerably larger, and the other 4 are smaller, but developing. She has two more under her lip, up against her gum line under the first sore. Two others are developing on the inside of her cheek and don't appear to be bothering her yet.

With a combination of mouth sores and a cold, Katie stayed home from school today because she was feeling so tired and lethargic. She usually bounces out of bed in the morning, often acting far more awake than either Amy or I are feeling. This morning she wanted to stay in bed and sleep. We gave her an extra half hour and she appeared unconscious at the end of that half hour. It was hard to wake her up again and as we got her dressed and ready for school it became apparent that she wasn't going to be able to make it through the day. Amy called in sick and tucked Katie back into bed.

She got a lot of sleep today and is feeling a little better, but not 100%. I don't think this is over yet. It may be just beginning. With Christmas fast approaching, our goal again this year, just like last year, is to stay out of the hospital and be able to enjoy Christmas at home.

Chemo and Ear Infections

2009-12-08T21:36:00.000-05:00

Overall, things are still going smoothly for Katie. She has only had to contend with minor incidents in the last few weeks. She had another ear infection a couple of weeks back that gave her enough of a fever to put in the emergency room at North Country Hospital for an afternoon. Her port access went smoothly and she was in at 1pm and out by 5pm. That's the kind of quick trip to the ER and back that we like.

This past Friday, she traveled to Fletcher Allen again for another round of chemotherapy. The last few monthly doses haven't had much of an effect on her other than to make her tired and a little ill - nothing that disrupted her activities. This dose of chemo had a more apparent effect. The Vincristine made her feel nauseous for the first time in a long time and she made several trips from her bed to the bathroom last night to get sick. I figured that she would be too tired to go to school today, but she woke up bright and early, ready for another day. She was more ready than Amy and I.

This past Saturday, we bought her her first pair of downhill skis, boots, and bindings. Now that there is snow on the ground she is eager to try them out. If the promised nor'easter hits tonight and we get a snow day tomorrow, we'll have to let her break her skis in in the back yard. Maybe she'll even let her parents sleep in late...

Smooth Sailing

2009-11-17T19:28:00.000-05:00

It seems like the whole world is getting sick right now, but not Katie and Josh. Kids in the high school where Amy and I work were getting sick left and right a little more than a week ago. Many of them had H1N1 symptoms, but our local hospital did not test them to verify the illness. Now kids in Josh and Katie's school are getting sick one after another. One of Josh's classmates is out of school today with a fever that approaches 104 as soon as the fever reducing medication wears off. Another classmate was out for an entire week with fevers every day.

Katie and Josh have both had their seasonal flu shot and the first H1N1 shot and we feel very fortunate that they were able to get them. Up to this point at least, those shots have done a fine job of protecting our children from the worst of the worst.

All Better for Halloween

2009-10-31T23:33:00.005-04:00

Katie is feeling much better now. Her cough is gone. Her ear infections have cleared up and the fever has not returned since our evening at the hospital.

We just got back in from Trick or Treating on this Halloween night. Despite a little rain, everyone had lots of fun. Take a look at the costumes that the kids picked out this year.

A Cough, A Fever, and the Emergency Room

2009-10-21T00:43:00.002-04:00

Katie was up most of the night last night with a barking cough that sounded an awful lot like a case of croup. This morning, she woke up exhausted but feeling a little better. We let her go to school but warned the school about her night and told them to call us immediately if she was tired or sick. She made it through the day just fine.

However, when she finally arrived home after traveling around with her mom after school doing errands, she had a fever. Amy walked through the door carrying her and said “Take her temperature”. The thermometer read 102.8 and we were quickly on the phone with her oncologist, and then on the way to the hospital.

Happily, despite thirty plus minutes and three attempts, at accessing her port, it was determined that there was nothing seriously wrong with Katie. She tested negative for the flu. Her ANC is fine and her other vitals are what they should be. The doctor did find a double ear infection though, and are wondering if that might be what spiked the fever. The doctor said that the infection wasn’t bad enough to treat except for the fact that Katie was running a fever so he would give us some antibiotics to be on the safe side.

Four hours after leaving the house, we returned and Katie is now sleeping soundly in my bed… I think I’ll squeeze into her bed again rather than waking her up just to move her across the hall. She could use several hours of undisturbed sleep.

Corn Maze

2009-10-12T22:07:00.002-04:00

It's that time of year again here in the Northeast Kingdom. Cornfields are being harvested, but first, some are being cut into the shape of a maze. For a nominal fee residents and tourists alike can test their navigational skills in an attempt to find the way through the maze. Josh and Katie love the corn maze and beg for an opportunity to run through the maze each year. This year, we did it at night and brought a video camera along with us. The edited video is featured below. It took us nearly two hours to navigate the maze, but the video has been cut down to just 5 1/2 minutes.

Katie Grace Kelley Had a Farm E I E I O

2009-09-27T12:58:00.004-04:00

Today the animal population on the farm grew by two more animals. We bought 2 pigs. For a little entertainment, watch the video of us unloading the pigs from the back of our Subaru and into their new home. Josh was the videographer and he did a very good job considering this is his first video. I especially like his commentary.

The First Bee Sting

2009-09-22T13:21:00.000-04:00

Katie was stung by her first bee while at school the other day. The bee stung her in the thumb while she was out on the play gound. The school promptly called us at work to find out if she was allergic to bee stings but we didn't know if she was or not. Katie had never been stung before. Luckily, she did not have an allergic reaction to the sting and recovered fully from the traumatic experience in a matter of minutes. If Katie's recollection of events is completely accurate, she was attempting to pet a cute little bumble bee that she found. She has now learned that petting a bee is not a good idea.

Hiking & Climbing

2009-09-07T22:51:00.007-04:00

Today I (Rick) took the kids hiking and rock climbing on Wheeler Mountain. This was Katie's first chance to wear her rock climbing harness. She had received it as a gift from her auntie Cahill 2 years ago, but had not quite grown into it until this year. She and her brother both did a great job scrambling up areas of open, sloping rock face as the sun shone down on us a a slight breeze kept us comfortably cool. Katie might have earned a new nickname today as she clawed her way up the rock face on all fours. Josh and I agreed that she looked like a little bear scampering up the rock with both her hands and feet on the rock and her butt way up in the air.We began affectionately calling Katie-bear and she took to it immediately.

The hike is approximately one half mile from the parking area to the top of the 2371 foot tall mountain. Katie climbed it all by herself with only a little help here and there to get up to the next highest step in places where her legs were not quite long enough. On the way down, she trotted along in front of me, hopping from rock to rock with me holding a short sling attached to the back of her harness. When she jumped from a rock that was too high she would dangle for a bit from her harness with her feet still moving as I lowered her to the ground. Without a pause in her stride she would continue on her way.

We really had a lot of fun and I am very glad that we chose to hike and climb on this Labor Day holiday.

First Week of School

2009-09-02T07:39:00.004-04:00

School is back in session, and this time both of kids headed out the door to their first day of school. It was Katie's first day of school ever, and she could not have been more excited. She spent quite a bit of time playing, this summer, with the kids who would be in her class this fall. As we dropped her off the first morning, she greeted her friends, lined up with all of the other pre-shoolers and disappeared into the building holding her teacher's hand. It's a good thing she didn't look back. She would have seen me sobbing. (I cried on Joshua's first day of Pre-K, too.) It's such an important milestone, a day for which we have prepared so carefully. Some milestones mean even more when they are Katie's first steps out into the world. She was so sick for so long--and she has a ways to go yet--but she ventured out into the world so bravely and with such confidence that it was just stunning.

The rest of the day went just as smoothly for Katie, but she has developed a cold. She had a terrible night's sleep Monday night and woke up crying, "Don't make me leave my classroom." She was afraid that she would not be allowed to go to school with a cold. When I assured that she would be going to school the next day, she fell asleep immediately and slept soundly the rest of the evening.

Other funny stories have since emerged. For instance, she cannot reach the toilet paper while sitting on the potty because she is so small, and she needs help getting off the bus because she is so short. In every other way, though, Katie is a very normal and well adjusted member of her class. She loved being the "Star Helper" and "Line Leader." I was concerned when her teacher, the amazing Mrs. Tarbox, reported that "Katie is a natural leader"--teacher speak for "Your kid is a bossy nightmare"--but Mrs. Tarbox assures me that Katie is consistently well-behaved. She has been singing new songs, and she tells me about story time every day. She had phys. ed. last week. Both art and music start this week. She comes home with lots of pictures, and she practices writing her name on the whiteboard in my classroom every afternoon. (She really likes spending time at Lake Region in the afternoon!) In every way but one, she is a very regular kid who just happens to LOVE going to school. She runs to the playground every morning with the big kids who have "adopted" her--she is well loved and very well looked after by a whole herd of big brothers and sisters--and she has been calling me Mrs. Tarbox. I have been replaced, and it's a little unsettling, but I suppose I should enjoy her enthusiasm for school...

My mom laughed at me this weekend when I told her how easily Katie has adjusted to life at St. Pauls. She was quick to remind me that we had worked very hard preparing Katie for this transition. And she's right. I'm very proud of Katie. She's just growing up so fast...

Another scary thought: Joshua is in SECOND grade. Yikes. He is thriving, too :).

Summer Vacation: Part 2

2009-09-02T07:37:00.004-04:00

Our "vacation" came in two parts this summer, and although the parts were both reasonably close together, it took me a while to make myself sit down and write about them.

One week after our trip to Boston, we headed to New Hampshire to spend one day at The Whale's Tale water park and the next day at Santa's Village. To say that the kids had fun would be an understatement. They had an incredible time.

Josh discovered that he is just big enough to be able to ride all of the big kid and adult slides at the water park so he spent the first day shrieking with exuberant fear as he tried every slide in the park.

Katie discovered that the water park held plenty of options for her as well, although she definitely showed a preference for the Lazy River and the heated pool. When our day at the water park was over, both kids were completely exhausted. We drove thirty minutes to our motel right across the street from Santa's Village, took the kids out for a nice dinner and then turned in early in preparation for the next day.

We had invited Grandpa and Grandma Kelley to join us at Santa's Village and they showed up bright and early the next morning. The kids were already bouncing around the room with excitement by the time my parents arrived so we headed across the street and started another day full of fun.

For a four-year-old and a seven-year-old, Santa's Village is a paradise. The highlights of the day included the flume ride which always managed to get Amy and I wetter than the kids, and the roller coaster. Katie had been begging to go on a roller coaster since her brother had gone on one

at Granby Zoo at the start of the summer. However, she was too small for all the other roller coasters that we had found. The Santa's Village roller coaster was different. It had an age limit

instead of a height limit and our vertically challenged daughter was able to ride as long as she was with an adult. So the whole family rode the coaster several times. It was fast enough to get a few screams out of Amy and I. Katie, screamed almost non stop, breaking only to add "This is fun!" at the top of her lungs.

After the obligatory photo op with Santa, we packed it in and called it a day. The park was closing and we had two very tired, happy children on our hands once again.

Birthday Fun

2009-08-21T18:49:00.004-04:00

Katie rallied after her unfortunate (!) evening Wednesday night, and she enjoyed every minute of her birthday. On her actual birthday, which was Thursday, we had breakfast at the Parson's Corner (aka Eddie's), where Katie binged on potatoes and talked to EVERYONE. Then Katie and I met two other moms and their little girls for a playdate, some lunch and a special treat. We traveled to Greensboro for a special kids' performance of the Craftsbury Chamber Players. The girls danced and played. We got to sit two feet from the cellist and to observe the instrument as she played. Katie was thrilled. She had a wonderful time with her friends, too. We returned for a family barbecue, and Katie enjoyed the attention from her grandparents. She opened lots of presents she really likes. I found her a pink guitar, and she is very excited about it. We spent a lot of time reading her new stories this morning. We were pleasantly surprised by her energy level throughout the day; she didn't get much sleep Wednesday night, but she romped and played all day long, smiling and happy.

The fun continued. We had two of her friends and their moms over for Katie's first ever kid party. Katie began planning this three weeks ago. She chose Tinkerbell party supplies and items for the goody bags. We assembled the goody bags several days ago, and they sat on our kitchen counter awaiting the arrival of the big day. Katie's friends spent a lot of time chasing each other around with blowouts. They made their own pizzas. Then we made musical instruments (paper plates with beans inside to shake) and banners (paper plates made to look like suns with streamers breezing out behind). The kids were good, and they were very funny. They were enthusiastic about the parade idea despite the rain, so we held the parade inside. The cake was a big hit, and Katie liked her presents (Hello Kitty school supplies to match her backpack!). Her best buddy wrote a beautiful letter about how much she loves Katie, and Katie had hugs for all. She ran and played and celebrated. It was fun to watch her interact with her friends. She was excited and happy--healthy and beautiful. She was great. (I'm tired now, but she is still zipping around the house, energetic and spirited.)

The funny thing is that Katie still remembers last summer's birthday fondly. She spent her third birthday in the hospital, but she enjoyed that, too, and she still talks about it. Personally, I'm a big fan of birthdays at home (!), and I suspect that Katie preferred today's festivities because she had time with her pals (all of whom will be in her class next year), but I am beginning to suspect that Katie is capable of great fun wherever she goes. When she feels good--and she feels GOOD these days--she lives with a kind of gusto that I really admire.

The fun continues tomorrow. My parents are traveling to the Kingdom for the Orleans County Fair, the social highlight of the summer season in our part of the world. There are animals to visit, rides to enjoy and plenty of good greasy food. We're looking forward to this next adventure. Life is good.

It was a pleasure to celebrate with Katie this year. I was thinking about the American Cancer Society's new slogan: "A world with less cancer is a world with more birthdays." The ads for this campaign typically feature adults. The ads for this campagin SHOULD feature children celebrating their birthdays the way Katie celebrated hers this year. She got every last bit of fun out of this birthday, and she was amazing.

Birthday Surprise

2009-08-20T09:13:00.003-04:00

Today is Katie's birthday, but the surprise is on all of us. Just before midnight last night, Katie began vomiting for no apparent reason. It continued through most of the night as Amy and I lost count of the number of trips that we made to the bathroom with her. I think the last trip was some time after 3am.

We slept as late as possible this morning, but a birthday breakfast at the local diner is, at the very least, postponed because when Katie did wake up, she woke up with an extremely low blood sugar and needed some food in her system ASAP. She is currently in the tub, washing away the smells of her late night activity and trying to perk up enough to enjoy her birthday. With any luck, her sudden nausea is a fluke and a momentary inconvenience instead of the beginning of something bigger.

She did receive her treatment, including an LP, last Thursday. At the time, the doctors noted that she had gained a pound and grown an inch which pushed her into the next steroid dosage category. They doubled the dose of steroids that she had to take for the next five days. We didn't see any noticeable gain in side effects except for her hunger, but who knows... Maybe this is related. She has, after all, been eating enough for a person twice her size for seven days now. Maybe her body just couldn't hold any more.

As we look forward to the rest of our day, our fingers are crossed.

A Real Summer Vacation: Part One

2009-08-10T12:02:00.009-04:00

The trip to Boston went off without a hitch. In fact, we all had a great deal of fun everywhere we went. We started our Boston trip with a visit to the Public Garden for a swan boat ride followed by lunch in Beacon Hill within walking distance of the Boston Common at a little restaurant named Figs. (The pizzas were absolutely delicious!) We then headed out on a tour of Boston in a Duck Boat. Then we needed a break from the sun and the humidity so we checked into our hotel and headed for the pool. We finished our first day off with a walk around the city at night and with a trip to the Cold Stone Creamery for some ice cream.

The second day included a trip to the New England Aquarium, lunch at Faneuil Hall, an afternoon of playing and exploring at the Children's Museum, and an evening at Revere Beach. With all of that behind us and two tired children in tow, we headed for home to recover and prepare for our trip to two New Hampshire attractions, The Whale's Tale and Santa's Village. (More on that later!) We did not reach home until midnight on the second day of our journey, but we were happy to have squeezed in so much fun.

We all have favorite memories of our trip to Boston. Amy loved the Swan boats inspired by Make Way for Ducklings . I enjoyed the Duck Boat tour (Joshua got to drive a Duck Boat around the harbor!) and our late night walk through the city. Josh was happiest at the aquarium and at the beach, while Katie had her best moments in the Children's Museum. There was something for everyone. It was especially gratifying to tag along after Katie as she took the city by storm. She climbed to the top of a three-story activity structure in the Children's Museum, assisted by Joshua. She ran and played. She asked question after question. She was energetic and enthusiastic, dynamic and funny. Passersby would never have guessed that she is a cancer patient. She looked good, and she had fun--as did we all.

Funny note: If you know our history, you may remember that Katie's last trip to Boston ended in a surprise visit to Massachusetts General Hospital in the middle of the night. Amy went running Wednesday morning and jogged right by; tempting fate, she waved and smiled as she celebrated our good fortune in spending two sunny days in Boston with our beautiful children without medical intervention!

Josh's Birthday

2009-08-03T09:43:00.006-04:00

Happy Birthday, Joshua!

It is hard to believe that Joshua is now seven years old. He is nearly as tall as I am, and he is growing like a weed. He will begin second grade in August. He is growing up so fast. As I write, he is stretched out on the floor at my feet working on his summer homework. He really wants to be working on a Clone Wars coloring page. He is a curious mix of all grown up and little boy. I'm not sure I'm ready to part with the little boy just yet. What will I do when he no longer fits in my lap?

It was fun to host Joshua's birthday party yesterday. The horses were saddled and ready to go, but the rain started before we could ride, so the scavenger hunt was our only outside activity. We found enough to do inside, though, and I think the kids had a good time. It was a nice group. Our kids were tired at the end of the day, so this is a good day to catch up on errands and to get our chores done. The kids can play with Joshua's new toys while I get the house cleaned up and mow the lawn.

We are all excited about going to Boston tomorrow morning. When Rick and I sat down to list our planned activities for the rest of summer and to schedule them in, the calendar was nearly full. This will be a busy month. It is a joy to have this time to spend with our children. We are both tired, too, but we are making memories to sustain us through the long winter ahead.

For the record, I am very proud of my beautiful boy. He has dealt with the challenges of this last year and a half in his typically good natured way. He remains kind and affectionate. He has energy and enthusiasm to spare. He is learning and growing. He is healthy and happy. I love you, Joshua. Happy Birthday!

Living Well

2009-08-02T09:07:00.003-04:00

This last month has gone really well for Katie. She has been feeling great and having a lot of fun. Just look at her bouncing on the trampoline, riding one of our horses with her mom, and raiding fresh spinach from our garden. At the moment, she is one happy kid...

Playing Hard

2009-07-30T21:15:00.005-04:00

As summer vacation winds down, we are cramming in more and more activities to make sure that we fit in everything that we wanted to do this summer. These past couple of days have been pretty nice and we put the good weather to good use. We spent one day at Granby Zoo and the following day at the beach. With lots of sun and fun under her belt, Katie finally crashed at the end of the second day. Just minutes after returning from the beach, she fell fast asleep on the couch while waiting for dinner. Eventually, I carried her upstairs to her own bed. She didn't wake up until the next morning.

Next week, we're planning a trip to Boston for the Aquarium, Children's Museum, Duck Boat Tours and more, and then a trip to New Hampshire for The Whale's Tale and finally Santa's Village. We'll post more fun pictures from those trips.

Not So Bad

2009-07-24T11:36:00.002-04:00

Katie has finished this round of steroids and this time around it wasn't so bad. Her appetite increased a little bit and she definately became more irritable and difficult to deal with, but she didn't take it to the extremes that she did the last time around. She is still feeling the effects however, and her last dose was two days ago.

I wonder what made her react to last month's treatment so much more strongly than this month...

Bracing for More Steroids

2009-07-11T09:15:00.003-04:00

Another month has passed by and next week Katie goes back to Fletcher Allen for another treatment. It feels too soon and at the same time, it feels like the last treatment was ages ago. The problem is that for some reason the Dexamethazone (steroid) really affected her this time and she was dealing with the consequences for many days. She was explosively cranky and prone to emotional swings and outburts on and off for two weeks. On top of that, she was hungry 24-7 and ate more than her mother did at every meal. She packed on plenty of extra padding this month. We are already trying to figure out how to work around her worst steroid days once PreK starts in August. Fortunately, Katie's teacher has agreed to work with us on this. We are hoping that this next batch of steroids won't be so potent.

On a positive note, we have spent a lot of time outside this month despite how rainy the summer has been. We have been swimming and playing in the sand. Josh went to golf camp, and Katie tried out a club herself. We have spent time in our kayaks, and we have shared them with friends. The kids have been riding their bikes. Soccer started Thursday, and BOTH kids played. There is some color in our cheeks, and the kids have nice sturdy limbs. The bags beneath our eyes are slowly disappearing. Swim lessons have ended, so the only item on our agenda this week is the trip to Fletcher Allen on Thursday (followed by soccer). I look forward to working on some web sites. Amy looks forward to time at the beach, the library and the barn, and she has painting plans. The kids are happy just to be kids. We'll try to post some pictures soon.

Relay for Life

2009-06-22T14:57:00.005-04:00

This was our first experience of the Relay for Life, but it will not be our last. Katie enjoyed herself thoroughly; we all felt very good about participating. As you can see in the photo at the left, Katie was all decked out. (The hat is hard to read in this photo, but it is a Vermont Children's Hospital hat. It was a gift from the nurses at Fletcher Allen, and Katie loves it!) As we lined up with the Survivors for the Survivors' Lap, I reminded Katie that ALL of the people in purple t-shirts were kicking cancer's butt--our family catchphrase for the sometimes hard work of being brave and getting strong. Katie was thoroughly impressed: "That is so AMAZING, mom!" She was very proud of herself as she walked around the track to meet her dad, and she waved happily to all the bystanders; she was sure they were all cheering for her! It was a very powerful moment, and I happy to be there with her. Given how sick she has been this week, our pediatrician had recommended that we take it easy, but it was hard to do so. Katie wanted to keep walking. She took snack breaks and stopped to mingle, but we are pretty sure that she walked two or three miles. She may be small, but she is powerful, and she just kept on going.

Special thanks to the members of our team. We raised some money, we ate lots of junk food, and we had fun. Some of us were up all night. Many of us walked too many miles. Sincere thanks for your participation. It was fun to do this TOGETHER.

The final snapshot is a picture of our team beginning the walk. Katie, as you can see, is in her element, surrounded by people she knows and loves and looking forward to adventures with people she might get to meet. This is the perfect event for a social butterfly like this one.

It was a relief, for me, to feel like we have started to repay our community for its support. People have been so good to us. It was a pleasure to walk with friends and family. We met new people and spent time with people we don't see very often. We felt like part of our community, and it felt good. There is something compelling about dancing around a track at three o'clock in the morning with people who are uniformly positive. Everyone was in good spirits, and it was a great pleasure to join in. Katie won't object to returning next year. As she said, more than once, "This is a beautiful party."

Good Little Things

2009-06-18T17:42:00.003-04:00

Sometimes good things come in small packages. That was the case this morning when our baby chicks arrived at 6:30 AM. Katie and Josh absolutely love them. Just look at the smile on Katie's face. Moments like this make the expense, time, and trouble of raising chickens a worhtwhile endeavor.

Home Again/Relay for Life

2009-06-17T21:03:00.003-04:00

We are very happy to be home tonight and headed to bed in our own beds. (Katie will be sleeping with me in our bed, of course, but that's pretty close!)

Katie continues in good spirits. She was very active at the hospital this morning. She cranked out several (thousand) paintings during this short stay, and we logged a lot of miles pushing grocery carts through the hallways at Fletcher Allen. She was eager to mingle and trying to charm. She was very funny. Grandma Kathy brought us lunch, and we packed up. Our stay, this time, was so short that we left on a good note--not desperate to be free but truly appreciative for the help and glad to be on our way. I am sincerely proud of Katie, who took the whole experience in stride this time. She was reasonable and cooperative about the whole thing--pretty grown up, actually.

We stopped at a playground on the way home and let Katie be a kid. It was a beautiful sunny day, and I was content to relax in the shade, breathing deeply and watching Katie zip about, climb and slide. She is not in any pain. She is not struggling to breathe. She is perfectly happy with the new antibiotic, which apparently tastes like gummies.

Life is good.

We will check in with our beloved pediatrician this week, and we return to Burlington for Katie's monthly treatment on Tuesday. Treatment was originally scheduled for Thursday (tomorrow), but we asked for a break so that Katie can participate in the Relay for Life in Newport this weekend. It was starting to look like we might not make it, but we are glad to be home and getting ready for the big day. This will be Katie's first year as a participant in the survivors' walk, and she is really excited about it. (We will be camping out, and the sleeping bag is the big draw, maybe?) Anyway, we have many reasons to count our blessings, and all those laps on the track will give us plenty of time and ample opportunity to celebrate how far we have come. You're welcome to drop in and to share the fun...

Surprise Update

2009-06-17T11:28:00.002-04:00

I'm not sure how I feel about this, but the doctors just gave Katie the OK to go home. Her ANC has climbed back to 450 and she is looking and feeling better. It seems a little soon to me to disconnect her from the IVs that have gotten her feeling better and put her on something else to take home, but I'm also glad that she is feeling better again. Amy and I are debating whether or not to stay with her parents in Burlington for a day or so until we are sure that Katie is fine.

Morning Update

2009-06-17T09:36:00.002-04:00

Katie recieved her blood transfusion last night at about 9:30pm and is feeling better this morning. The nurses believe that her lungs sound a little better this morning and Katie is telling us that her ears feel a little better too. We are waiting for her blood counts to come back this morning to see if anything other than her red cells have climbed.

The Struggle Continues

2009-06-16T22:47:00.003-04:00

At this point, the ealiest that Katie will get released from the hospital will be Thursday or Friday. It may be longer if her body fails to respond quick enough.

Her blood counts continue to drop and as a result her heart rate is rising and her breathing is getting rapid and more shallow. She is scheduled for a red blood transfusion tonight in an effort to remedy that situation.

Her pneumonia is still bad and her ear infections are still really bad, but drugs are flowing freely from several IV pumps attached to her port and hopefully things will start to turn around soon. Despite everything, Katie has remained in good spirtits for most of this latest hospitalization.

Josh and I came home tonight to get a few things done around the house. I have plumbing issues waiting for me in the morning, web site work that needs to be done and we are expecting a delivery of live baby chickens in the next day or so. We will be home for a couple of days before going back to Burlington and relieving Amy.

More Than a Simple Fever

2009-06-16T10:38:00.003-04:00

Katie was transported by ambulance from North Country Hospital yesterday afternoon to Fletcher Allen Hospital where she spent the night last night and will apparently be spending several more. Her fever came and went throughout the day yesterday, but more concerning than that is the fact that she still has pneumonia and a nasty ear infection even after 10 days on antibiotics that she was taking specifically to cure those two problems. In addition, her blood counts have dropped.

The initial blood tests yesterday indicated that her ANC was just 420 again, considerably lower than it has been since the last precipitous drop back in January. This morning's blood counts show that her ANC has dropped even further, down to just 280. Her platelet and hemoglobin numbers are also low, although I have forgotten the exact numbers already.

We don't know exactly what we are in for yet, but it is starting to look like Katie may be in the hospital for many more days. On a side note, yesterday, her first day in the hospital, was the first official day of our summer vacation.

An Ear Infection That Led to a Fever

2009-06-15T08:27:00.003-04:00

Katie has been suffering with an ear infection since Friday and ear infections never bother her. We were unable to get her to her doctors Friday before they closed and we wanted to hold of on another ER visit. We kept her as comfortable as possible over the weekend on rotating doses of Tylenol and Motrin, but as of Monday morning, her temperature has climbed above 101 so we are ER bound.

I'll post more updates later in the day when we know what is going on. For now we are headed to North Country Hospital.

Josh Learned to Ride a Bike

2009-06-12T21:59:00.006-04:00

Katie's brother Josh learned how to ride his bike today without training wheels. He really took right off and Amy ran in the house to grab the video camera so that we could share the moment with everyone. Katie is in this video too... Chasing after the bike telling her brother that she is going to catch him.

Another Round of Pneumonia

2009-06-09T22:27:00.002-04:00

Katie had a follow-up doctor's appointment today with her pediatrician to see how she was doing now that she is on an inhaler twice per day. She has been suffering from a cold again for several weeks and to our dismay, the doctor noted at this visit that her lungs no longer sounded clear. Yet again, another cold has settled into her lungs and caused Pneumonia. I think this is the third time in the past 8 months that she has had Pneumonia. To top it off, she also has fluid in both ears. Her ears are not very red and they are not bothering her, but there is a little infection there as well.
Oddly enough, she is feeling better today than she was just a few short days ago when her coughing was so bad that she had a hard time sleeping at nigh again.

Gone Fishing

2009-06-06T19:58:00.004-04:00

It was a beautiful day here today. The temperature hovered in the 70's and the sun was out all day long. After some chores around the house and a trip to the barn, I asked the kids if they wanted to do a little fishing. Their answer was a resounding YES!

We live within walking distance of Crystal Lake and the Barton River so I gave the kids the option of riding their PowerWheels Jeep and ATV to the fishing hole. They jumped at the idea and we quickly strapped the poles and tackle boxes to the vehicles and took off.

While fishing, they also played in quite a bit of dirt. Katie isn't wearing camo face paint, that is dirt mixed with sun screen. Both kids caught fish and I was happy enough just helping them do it. Maybe next time I will catch a fish too.

Mouth Sores Again

2009-06-02T11:50:00.002-04:00

The steroids are wearing off and Katie was just starting to return to a normal emotional and behavioral level. However, she now has something else to deal with. Yesterday afternoon she began complaining that her teeth hurt and she blamed it on getting bumped in the mouth at day care. When she complained again this morning that her mouth still hurt I asked her to open up and say ahhhh while I looked in with a flash light. What I found was more mouth sores located on the roof of her mouth this time, right behind her teeth. They are small, but white and well defined. We immediately started using the magic mouth wash again, hoping to give her some relief from the pain and minimize the length of time that she has to suffer this time.

Steroid Challenges

2009-05-27T20:51:00.002-04:00

For the past several treatments, Katie has behaved as if she hadn't even gotten any chemotherapy or taken a course of steroids. This time, however, is different. She went to Fletcher Allen last Friday for her standard dose of Vincristine and Pentamadine via her port, and Methotrexate via a lumbar puncture. She then came home and started her 5 day course of Dexamethazone. Saturday she felt pretty good until later that night and then she had a horrible night. She felt sick, her body hurt, and she couldn't sleep. She woke up Sunday feeling remarkably well. Her energy level dropped off quickly and she spent most of her day just feeling a little tired. However, by Monday, she was complaining of various pains and becoming emotionally unpredictable. The littlest thing has been setting her off ever since. A boo boo of any severity is cause for screams and uncontrolled sobbing. Any sort of reprimand, even a slight one, is cause for either inconsolable sobbing because "Daddy scolded me." or a kicking and screaming tantrum.
Today was the last day of Dex, and most of the other drugs effects should be waring off by now. I can't wait for Katie to return to normal again.

Going to the Prom

2009-05-21T12:46:00.005-04:00

Normal people might think that Katie is too young to be going to a prom, but when your parents are both high school teachers, there is no such thing as too young.

Katie went to her first prom this year with our high school students. Her date was her mom. Once she found out that the girls got to dress up in very pretty dresses and dance for hours, she just had to go. We captured a few pictures before she left and then a couple more while she was there. She had a great time dancing and reveled in the attention paid to her by "the big kids." A few of the boys very kindly asked her to dance, but she turned them down. She would only slow dance with Amy. At one point she ran into the ladies room ahead of Amy, who was curious about what she would do when left to her own devices. Amy found her lounging on an old-fashioned fainting couch. When asked what she was doing, Katie said, "I'm just chatting with the girls." One of these things is not like the other, but Katie didn't appear to find it odd that she was much smaller (and younger, etc.) than the other girls. Our students were very good to her, and she enjoyed herself tremendously. You should have seen her shaking her booty.

In the event that you are wondering where Josh was, he DID have the opportunity to go along, but the prom didn't appeal to him. :) He continues to thrive. He is currently obsessed with Bakugan, and he is having fun with t-ball. The highlight of his weekend was a visit to a friend's house Sunday. Unfortunately, Katie insisted on tagging along. Fortunately, Josh has gotten used to her social butterfly ways, and he was gracious about her insistence upon joining his play date. She will go to school with all the kids she played with Sunday, so it's good for her to spend time with them. They were all surprisingly good about allowing her to tag along, and she was thrilled.

We are working on our plans for the summer. We're trying to figure out just how much fun we can cram into the time we have without driving ourselves crazy. We're thinking about a few weekend trips. Josh will go to a few different camps. We're getting chickens. We're starting a bigger garden than we have ever had. It all sounds so good that we are having trouble waiting for the school year to end. We are looking forward to some new adventures!

All is Well

2009-04-30T22:32:00.003-04:00

Since our last unexpected trip to the ER with a fever, Katie has been great. She runs and plays all day long. She still has a cough, and she has had some mild pain in her legs (Vincristine?), but she doesn't let anything slow her down. She may cough, but she coughs while running laps around her proud parents.

We had a truly wonderful vacation. Rick and I decided to put the kids first, so the basement is still a catastrophe, but the kids had a very good time--as did we. Our week was full of kids. Cousin Kyler came to visit, as did some of Joshua's pals, and Joshua had his first friend sleep over. They are so grown up... Katie, of course, is desperate to keep up with the big kids. She is such a pesky little sister. Josh typically does a pretty good job of allowing her to share his friends, but Katie also had a play date of her own--her first real visit to a friend's house. She also loved swimming at Lyndon, where we explored the campus. (Both kids are now eager to go to college...yeesh...) We spent a lot of time with our horses, and the kids had opportunities to ride. We also worked on restoring the tipi originally constructed by the Stone Fort Gang on Burton Hill fifteen years ago. The second coming of the Stone Fort Gang only has three members at present, but as you can see, they are very proud of their progress. It was fun to show Uncle Mike pictures of their efforts.

We are all back to school now and trying to finish up the year. While Katie is content to be back at Jeanie's house, where she is truly loved, she is already asking for more "stay home days." It's hard to explain just how valuable those free days really are. Rick and I were so tired when we rolled back into Lake Region Monday, and we are still recuperating. It was a brief reprieve from a schedule that just gets crazier each time I turn around. Katie keeps up better than we do!

Tee-ball is our new adventure. Joshua is playing for the Barton Rays this year, and we had our first practice tonight. He is on a team with some of his best buddies, and he had fun tonight. He was asleep within minutes. Katie was ready to crash, too, as she took advantage of the playground equipment during Joshua's practice. She is increasingly brave and has been taking more physical risks of late. She is so much stronger now. When I remember the skinny little chicken legs she had when she was really sick a year ago, and I look at the muscular limbs she has now, I appreciate the progress she has made. She has come so far, and it is a joy to write that all is, indeed, well. I am so thankful for the opportunities we have to play.

Home Again

2009-04-26T10:05:00.003-04:00

We were released from the hospital as planned last night at approximately 12:30 AM. She came home still running a fever of over 101 and she fell asleep instantly. We all slept a little later than usual this morning, and when she woke up her fever was gone. The one additional point of interest from last night's endeavor... She has a double ear infection that has developed since Thursday.

I Spoke To Soon

2009-04-25T23:10:00.001-04:00

Earlier today I posted an April update in which I said everything was going well. As luck would have it, we are now in North Country Hospital because Katie is running a fever. It is 11pm, and we have been here since about 8:30. Her port has been accessed (first time being successful here) and blood has been drawn. We are still waiting for lab results to come back before they start flowing antibiotics. Her temperature at home peeked at 101.7 with no other indications that she wasn't feeling well. She is tired. She had a long day playing with Josh and Jack outside in the sun. But, because we are at the hospital, she is not interested in sleep. Antibiotics usually flow for about an hour, so it looks like it's going to be a late night. On the bright side, her ANC was 3800 as of Thursday. With numbers that high, Katie won't need to be admitted to the hospital. She will be treated and sent home.

April Update

2009-04-25T11:54:00.004-04:00

It has been about a month since our last update, and it has been a very pleasant month. Katie has been feeling great and things have gone very well for her. After her last round of chemotherapy, she didn't even get sick. She didn't need any Zofran, any Miralax, or anything drug to keep her going. She went on with her life the very next day as if she had never received any chemotherapy at all. It was amazing. Since that time, she has been living the life of a normal 3 year-old, albeit a 3 year-old with what appears to be a little cold that is hanging on. The only symptoms are a slightly runny nose and a persistent cough.

Katie just received another dose of chemotherapy this Thursday and seems to be taking this one well too. She did ask for some Zofran yesterday, but today she is feeling fine and is outside running and playing. While we were at the hospital, we asked the doctors about her cough and told them that we had begun experimenting with Katie's inhaler as a method of controlling the cough and it seemed to work - at least a little. The doctors suspect that she is dealing with a slight case of asthma which isn't surprising given her history respiratory issues each winter. We were given an updated prescription for her inhaler and were asked to closely monitor her condition while she was taking monthly allotment of Dexamehtazone for the next 5 days. Dexamehtazone is a steroid that is a normal part of her chemotherapy, but if her cough gets better while she is on it, that may indicate that she is dealing with some asthma and a steroid based inhaler will help her control it more effectively. So if this cough disappears in the next few days, Katie may be issued a new steroid based inhaler that will let her run and play even more than she already does.

So as not to end this post reporting yet another medical complication, and for your viewing pleasure, I also uploaded a short video that was shot Easter morning while Katie ran around outside of my brother's house, collecting Easter eggs with her brother, Josh and her cousins, Kyler and Eric. It is short, but it makes me smile when I watch her running and having fun.

A Spring Day at The Barn

2009-03-28T16:04:00.004-04:00

Katie is still feeling pretty good even with the Vincristine that she got Thursday. Today was such a beautiful day that we spent a good portion of the morning outside splashing around in the mud and brushing the horses. Here is another quick video that I grabbed with my cell phone of Katie enjoying the sun and fresh air.

Swinging and Singing

2009-03-25T20:33:00.003-04:00

Just a quick cell phone video from this afternoon. The spring weather is nice.

The Common Cold

2009-03-23T12:28:00.006-04:00

Things have been going reasonably well for Katie lately. She has been going about her normal routine of playing with her friends at daycare all day and zooming around the house playing at home each night. Markers and paint are her creative release of choice lately. Unfortunately, her body and her books have become her favorite canvas. She has colored or painted on herself and her books no less than eight times in the last ten days. I'll post some pictures the next time she gets creative.

In the last couple of days she has taken a turn for the worst. She developed a nasty cold over the weekend. It is restricting her airway again and making it hard for her to sleep at night. We can easily identify the source of this cold... Every kid in her day care suddenly got sick over the weekend. Unfortunately for Katie, while her body is busy fighting off this cold bug, we are going to give it more things to have to deal with. She has an appointment for another dose of Vincristine and Pentamadine this Thursday at Fletcher Allen. So, by the time she should be recovered from her cold, the Vincristine will be making her nauseous. Her doctors asked us to get a blood test done last night to ensure that her body had the resources to fight back, and it does. Her numbers look really good and all of the right numbers are elevated, indicating that she is fighting the cold. The next 10 to 14 days are just going to be a little extra rough.

No More Mouth Sores

2009-03-12T19:43:00.003-04:00

The mouth sores are nearly gone. The last remaining sore is the one that we found first. It is on the inside of her left cheek and it was the biggest of the sores. It is now a tiny spot in her mouth and fading. However, all is not yet as it should be.

She has been displaying very low levels of energy for the last week and complaining that she doesn't feel good. We suspect that she is having a hard time managing her sugar levels, but have not proved it yet. The doctors told us no to go through the trouble of a finger pick, but to just treat for low sugar. It hasn't been working as well as it should so I am going to test her blood the next time she is feeling low. I want to know how low she is getting and whether or not we are bringing her sugar levels back up high enough for her to feel good for a sustained period of time.

To jump topics a little, Katie is officially enrolled in preschool for next year as of today. Starting this coming August our tiny little girl will be riding the bus with her big brother to meet us at the high school at the end of every day. Josh started out the same way, but he seemed so much bigger...

March Update

2009-03-06T16:28:00.002-05:00

It has been too long since our last post and people have started asking how Katie is doing. As always, when things start going well, we begin to forget about updating the blog. But don't fret. Katie has been having a pretty good time and feeling very well.
The only noteworthy events are another round of chemotherapy and an LP that happened last Thursday (everything went smoothly), and the appearance of some new mouth sores as of two days ago. Since the chemo and LP were fairly routine, I will skip right over that and go into more detail about the mouth sores.
She has 4 and we discovered them all at about the same time. The largest sore is on the inside of one cheek. It doesn't seem to bother her too much unless we want to look at it or probe it with a medicine covered Q-tip. Another possibly smaller sore is on the other cheek, but it is tucked up in between her cheek and her top gums. She won't let us get a good look at that one, but she complains so much about pain when we try to move her lip to look that we stop. I have only seen the very edge of it. The remaing two sores are on her upper lip again, just as before. They are small and we are treating them early, but I'm afraid that they may get as bad as the previous round of sores. The doctors want a quick blood test to determine what is happening with the rest of her body as her mouth deals with these sores, so we will be off to North Country hospital for a finger pick tomorrow morning. This evening we already have plans. Katie is going to the dinner theater at Lake Region. She is all excited about going to the play and we are not going to cancel that outing to replace it with a finger pick. That just doesn't seem fair.

Ice Fishing

2009-02-21T11:52:00.006-05:00

Katie went Ice Fishing today. She has been all excited about going for several days now, and today just she and I went out on Brownington Pond for about an hour and a half. Then we started running into nap time and we had to pack it up and head back home. We didn't catch a thing -- Didn't even get a bite for that matter, but she had fun. Just look at her smiling face in the pictures below.

Spelling Quizzes and Makeup Madness

2009-02-20T08:47:00.004-05:00

Both kids continue to thrive. Joshua has had a lot of homework lately. It seems so strange to write such a sentence--He can't possibly be old enough to have spelling quizzes! He IS old enough for spelling quizzes, though, and he has learned that it is hard to be a teacher's kid. (Only teachers buy their kids workbooks for Valentine's Day...poor kid...) He is newly obsessed with computers-- It appears that he will be a gadget geek like his dad--and he is learning to surf the Web. I spent a good few minutes chuckling about his most recent adventure in cyberspace: Without asking, he sat down at a computer in his dad's lab at school and opened up Firefox. When he reached Google, he confidently typed the address we often repeat for him: nit.lego.dotkom (translation: knight.lego.com real address: castle.lego.com). He is still fascinated by castles and by Legos, you see, and this site features games, movies and coloring pages he enjoys. He is increasingly independent, trying things on his own before asking for help. While we still have some work to do on his spelling, I am proud of his efforts to venture forth on his own. And the whole episode made me laugh.

Katie is a gadget girl, too. She saw her cousin's iPod last week and has been asking for one of her own. (I don't think so!) She is feeling great, so she has been full of it lately. She is determined to grow up so fast. We have taken full advantage of Katie's functioning immune system, and she has thoroughly enjoyed our efforts to provide her with local adventures. (We never blog anymore because we are always out and about, playing in our community.) Katie loves Lake Region basketball games (she is in awe of the cheerleaders and eats her way through the school store), and she has been clamoring for a visit to the library. (The library is showing an American Girl movie tonight. Yeesh...) Both kids enjoyed a visit to the locally famous Pick and Shovel, where the girl in the pet shop allowed them to pet a ferret. Her immune system was suppressed so long, it seems, that even mundane activities like grocery shopping are really exciting. We're not sure where Katie got the social butterfly gene, but we have had a lot of fun observing from a distance as she meets and greets.

On a funny note, Katie decided that she was old enough to wear "makeup." She was upstairs in her room playing with her Leap Pad (or so I thought) while I folded laundry. When I went up to get her--we had dinner with her Nana last night--Katie looked different. She had opened up a tube of chapstick and had turned it into a kind of impromptu blush--like the old fashioned "rouge" my grandmother used to wear. She had great circles of pink chapstick smeared on her cheeks and her thighs. She was sparkly though, too, and it took me a minute to determine why. Katie apparently thought it would be a good idea to take the wand out of her lip gloss and to use the lip gloss as eye shadow. Oh, my. One funny detail/question: I don't wear makeup beyond chapstick, which I always apply to my lips, so we're not sure where Katie would have learned to apply eye shadow? One not so funny detail: Chapstick is really sticky. It was very hard to resist giggles as I washed her off. She was SO sticky and SO cute, and she still smells like vanilla. I am smiling as I type. She is always interesting, my Kate.

New Numbers

2009-02-12T12:17:00.003-05:00

We took Katie to North Country Hospital yesterday afternoon for a finger pick blood test. She handled this one exceptionally well, crying only when her finger was picked, but happy and pleasant leading up to it and even after as the nurse was collecting the dripping blood in a small vial. Just an hour ago, we got the phone call telling us what her new ANC is. Last week she was at 4210, and after a week of chemotherapy at home, she is not at 2800. The doctors would like her to maintain a target of 1500 to 1700 so her at home dose of chemotherapy is going up. Since recovering from her last bout of neutropenia, she has been on a 50% dose of what she had been getting prior to becoming neutropenic. Now, she will be getting a 75% dose. Hopefully, her body will be able to handle it.

Happy Birthday, Grandma Jean!

2009-02-08T22:58:00.003-05:00

As luck would have it, Katie's day care provider and her family are sick. Katie is healthy for once, and they are all miserable. Poor Jeannie...We hope that she and her family are on the mend.

Katie will go to Grandma Jean's house tomorrow, which brings me to the most important reason for this post: It is Grandma's Jean's birthday tomorrow! Happy birthday, Grandma! I hope that those of you who know Jean will call to wish her well Monday. She and Rick (they are my in laws) have saved our bacon this winter by caring for Katie during the prolonged period of neutropenia, and we look forward to spoiling Grandma a little bit this year. She deserves birthday blessings and a good start to a new year. Happy Birthday, Jeanie Beanie!

Keeping Up With Katie

2009-02-08T22:34:00.005-05:00

As her future soccer coach commented when Katie went sprinting past him on Saturday, she is fast. "You can't keep up with her!" he chortled, no doubt beginning to worry about what she will do on the soccer field. He was right. It isn't easy to keep up with Katie these days. She is something else. She was up before first light both days this weekend, and she almost never stopped moving. (She paused only to yell at one of us when we were unable to keep up with her schedule and with her incessant demands for food--late delay steroid effects?) We took advantage of Katie's good cell counts and had some adventures.

Our adventure at the basketball game was a weekend highlight. The gym was packed, and it was loud. Katie was thrilled to be part of the action. She ate popcorn, a lollipop and a cupcake. She stood on the bleachers and screamed for the boys. "Go, Rangers!" We stayed late so she could mingle with people she hasn't seen in months. She collected hugs and well wishes. Her pretty (and curly) new hair was a hit, and she pranced around, allowing everyone to pet it. She ran up and down the bleachers, showing off her balance. She was hoarse when we left the game, but she was smiling, and she was enthusiastic about a visit to our horses, so we kept on going. When we finally returned after a grocery shopping trip, five hours after we originally left the house, I was tired, but Katie was just getting started.

The highlight of our day today was a visit from my parents, who came up for lunch. Katie was dressed as a ballerina when they arrived, and we had been dancing, but she put them to work immediately. "Line up!" she screeched, and we were off to the races, zipping around the "track" on the first floor. You know that the tail is wagging the dog when three fairly bright and independent adults willingly sprint through the dining room in pursuit of a pint sized ballerina. It would be interesting to attach a pedometer to those ballet slippers...Our adventure continued with lunch at the East Side, where Katie continued the binge fest that characterized our weekend and insisted on celebrating the birthday of a woman at a table across the room. Only Katie...While she napped briefly on the way to Newport, that was it today. When I think about all the energy she burned and then I remember that she never really napped, I wonder where it all comes from. And then the incessant demands for food make sense...

Anyway, it was an absolute joy to leave the house this weekend with Katie in tow and to PLAY. A good time was had by all.

4210!

2009-02-07T11:15:00.002-05:00

I received the phone call yesterday afternoon while still at work. Katie's new ANC number is 4210! We are thrilled. However, that number is higher than the target number set forth by the doctors and they will likely increase the chemotherapy doses after one more blood test next week.

A Smoother End to the Week

2009-02-06T12:15:00.003-05:00

Despite the bumpy start to the week, things seemed to have smoothed out nicely. Beginning Wednesday night, Katie starting feeling better and became more willing to interact with others in a pleasant and playful way. Thursday, I (Rick) took her to Fletcher Allen for a follow-up appointment that was nothing more than a blood count. I haven't gotten the numbers yet, but I am expecting that to be good news. When the news is bad, they call right away.

Katie had a great day in Burlington yesterday. She napped all the way there, and by the time we got into the hospital she was full of energy. Normally, she wants to ride in the stroller from the car up to Pediatric Oncology on the fourth floor of Fletcher Allen. Thursday, she walked in like she owned the place. She sang her ABCs in the waiting room and belted them out again as the nurse was taking her blood pressure. She then led the way to the room where her port would be accessed for the blood draw.

We had to wait for a bit before the doctor was available so Katie was allowed to leave the room to visit another 3 year old patient down the hallway. On the way, she decided to show the doctors and nurses what she could do, so she lined up on her own imaginary starting line, counted to 10, yelled "Go!" and took off running down the hall. She proceeded to repeat this process over and over again, running the full length of the hall each time and telling the doctors to cheer and clap for her as she ran by. I lost count of the number of laps that she did, but she ran for more than 10 minutes. Any doctor or nurse who heard this going on and wasn't in the middle of working with a patient, came out to see her run.

From there, I took her to visit her cousins. Because of the nuetropenia, she hasn't seen her cousins since before Christmas. In fact, we still have Christmas presents for them sitting in a closet waiting for both families to get together before opening them.

Hopefully, that good feeling transfered over to day care and she is having a good day there today.

A Bubble of Expectations - That Burst

2009-02-03T21:56:00.003-05:00

Katie went back to day care for the first time in eight weeks yesterday. She was excited to get back to other kids. We were excited to give her that little bit of normalcy. Her day care provider was excited to get her back, and all of the kids at day care were excited. The only problem was reality.

Katie woke up Monday morning, ready to go. She got dressed, ate breakfast and brushed her teeth with no problems. But as it got closer and closer to the time we had to leave, she started feeling less and less well. She had been awake for about an hour and she had already burned up most of her energy and her breakfast wasn't sitting well. We dropped her off at day care anyway, but you could tell that her excitement had faded. Not long after, we got a call from day care. Everyone's excitement had faded. Katie was not feeling well, and she was grumpy and uncooperative. The kids wanted to play with her, but she didn't want to play. The day care provider was disappointed and worried. We were saddened. We had all hoped that everything would be okay and her return to day care would be this miraculous return to the life she was living before she got sick again. It didn't happen that way, and we should have known better; but it was easy to hope for the best and believe that it would happen.

Today, she went back to day care, but with more realistic expectations. She knew she wasn't feeling her best. The kids knew that she might not play with them. Her day care provider knew that she might not cooperate or be in the best of moods, and we knew that the triumphant return had been a bit of a let down for all of us. However, with that reality check firmly established, we carried on with our plans and hoped that today would at least be a little better than yesterday. It was.

Katie got through her day just fine. She was a little low on energy and wanted to lay around more than she used to at daycare, but she has been laying around for eight weeks. It is going to take some time to get her energy levels and stamina back up. She was less grumpy today and more cooperative as well. All-in-all, it was a good day. The only down side - one of the other kids shows signs of pink eye but he hasn't seen a doctor yet. Ah the joys of day care.

Chemotherapy and a So-So Weekend

2009-02-01T22:01:00.004-05:00

With Katie's numbers up, the chemotherapy resumed again starting Thursday. She had a dose of Vincristine (causes nausea) at the hospital, a dose of Zofran to combat the nausea, and a dose of her antibiotic, pentamidine. That night at home she got Methotrexate, Dexamethazone, and Mercaptopurine. All combined, a lot of chemicals went back into her body and that was just on Thursday. Friday, Saturday, and Sunday she continued to get Dexamethazone, Mercaptopurine, and Zofran. She has had a break from some of these drugs for quite some time now and she isn't used to handling them again. She spent most of her weekend just lying around on the couch or in bed. She didn't nap much, she just didn't feel good enough to get up and play. The few times that we tried to get her out, she told us she didn't feel good and just wanted to go back home. Tonight, after climbing into bed, she finally vomited for the first time since the drugs started going back in. Shortly afterward, she felt better.

Tomorrow, she goes back to daycare. Hopefully she will feel well enough to enjoy it because, even sick, she is still looking forward to seeing her friends.

News to Celebrate

2009-01-29T21:42:00.004-05:00

Way back on December 4th, we discovered that Katie was neutropenic. At the time, our biggest hope was that she would be out of the hospital for Christmas. Eight weeks later, she has finally recovered from her nuetropenia, regained a functional immune system and can resume the life of a normal and healthy 3 year old child. Blood tests at Fletcher Allen today showed that Katie's ANC, which had been only 220 last week had climbed to 1040. Anything above 500 would have been great. 750 is the minimum to restart her chemotherapy. Over 1000 is absolutely great! Of course, with numbers as good as that, the at home chemotherapy began again tonight. She received her first pills just before bed, but I digress.

So what did she want to do to celebrate the return of her immune system? She wanted to go to a book store. We went to Barns & Noble. She navigated the aisles of books for nearly an hour, picking up this, and thumbing through that, and the entire time, talking to anybody she came across. In the end, she decided to buy nothing, but she insisted that she was happy. She got what she wanted finally and what she wanted was to just be around people.

As it so happens, she requested a very special outfit last night when we were laying out clothes for today. She wanted to wear a beautiful red dress with red tights and shiny black shoes so that she could show it off to everybody at the hospital. She spent the day posing for doctors and nurses and had to take her coat off to pose for perfect strangers in the book store too. She was in her glory and I am glad that I was there to see it.

Tomorrow, she could finally go back to day care to play with other children again. But as luck would have it, her day care is closed tomorrow so she will spend one more day with her grandparents. She has enjoyed spending time with her grandparents, but she is eagerly awaiting Monday morning.

All Tests Are In

2009-01-25T22:26:00.003-05:00

Since I express some feelings in this blog post, I wish to point out first that I, Rick Kelley, Katie's dad, am the one writing this entry and not Amy, her mom.

The remaining test results from Katie's bone marrow are in. There is still no sign of cancer and the tests revealed that her cells are maturing as they should be. To say that information was a relief is an understatement. Further blood tests also indicated that Katie's antibody count was low. Her count was 420 but I foolishly didn't ask what normal counts should be. Her ANC dropped again too. She was just over 500 Monday, but by Thursday she was back down to 220. However, in an effort to boost her immune system and fight off her cold and her virus, she received her first IVIG (Intravenous immunoglobulin) Thursday. We have been asking for Neupogen for some time to help boost Katie's immune system, but we didn't even know another option was available in the form of the IVIG until two days before Katie received it. I can't tell you exactly why one option was chosen over the other option, but I can tell you that I am glad that something was done.

Today, several days after the IVIG, Katie is feeling better. She is currently suffering from Laryngitis, and her swollen voice box is making it difficult to breathe, but she had that problem before we went to Fletcher Allen on Thursday. The doctors checked her over and told me to call if it got worse. It was bad Thursday night and Friday night. I was up a lot those two nights, checking on her to make sure that she was still breathing okay. Luckily, it never quite became bad enough to take her back to the hospital. Last night, she slept better and breathed easier and today it is a little better than that.

We are still fighting the battle to heal her lips but we are winning. I don't know if the IVIG is helping at this point or if the continued heavy use of the Medicated Blistex is working wonders all by itself. Her lips look normal at this point, but if she lets us look under her top lip, a sore is still hiding there. However, this last remaining sore doesn't seem to be causing her any pain and she will let us lift her lip up to apply the Blistex directly to the sore. The remaining sore is not a nasty, white hole surrounded by angry, red flesh any more. It is only slightly off-color and there is no redness surrounding it at all. She even brushed her teeth all by herself tonight before bed, which is quite an accomplishment since teeth brushing has been a real battle these last couple of weeks because of the sores on her lips.

Her spirits have been good and her energy has been great. She played around the house all weekend with her brother - running laps from room to room and climbing stairs and sword fighting in between coloring, painting, and just being a kid. It would have been nice to spend more time with her while she was feeling good this weekend, but I had a lot of work waiting for me and it kept me busy all weekend. She played around me as I sat at my computer for hours on end. Since Friday after work, I created and published a new website for a company that I work for our of St. Johnsbury, and I wrote two college papers for a course that I'm taking as part of my Master's program. I am very pleased with myself for getting that done, but I am sorry that I missed another opportunity to play with my children. Unfortunately, weekends spent working are pretty common place for me when my college is in session. There isn't time to do the work any other time.

Some Preliminary Good News

2009-01-21T22:54:00.004-05:00

As you may know, Katie had some bone marrow samples taken again this last Monday. Normally a bone marrow sampling for Katie consists of a single bone marrow aspirate from one hip. However, Monday, the doctors took bone marrow aspirate from both hips and they also did a bone marrow biopsy. Due to the extra medical attention she received Katie was a little more sore coming out of this procedure than she historically has been.

The bone marrow was extracted at around noon on Monday, and at 2:30 on Tuesday the doctor called me at work with the preliminary results. I am happy to report that when Katie's bone marrow samples from Monday were compared to those just a couple of weeks ago, the doctors were able to observe her cells maturing normally just like they are supposed to. In addition, they did not see any signs of leukemia cells in the sample. I am happy at the news, but I am also trying not to be too excited about it. The bone marrow samples will still undergo sever more tests and be looked at by many more people, and any one of them may report something that I don't want to hear, but for now things look good.

On another positive note, Katie's ANC on Monday had climbed substantially and was at 520. If that number is a sign that she is recovering and not just an abnormally high spike, we will soon be back to something closer to normal.

Tomorrow, Thursday, Katie has to return to Fletcher Allen for a follow-up appointment. We are hoping that more news has come back from the bone marrow and we are hoping that her ANC has climbed even higher. Her infection seems to be almost over, but her lips still look pretty bad. The sores left a lot of damaged tissue and her lips are cracking as they heal - leaving her with blood stained teeth several times each day. Her lips are still sore to the touch and putting any kind of lip balm on them is still a challenge unless she is sleeping. She also has a nasty sounding cough that she managed to pick up from her brother and it wakes her up at night. I think her throat hurts from coughing but it is hard to tell. For now she is sleeping soundly, and when she wakes up in the morning we will be headed back to Burlington.

QPD: Naked Soccer

2009-01-16T22:11:00.003-05:00

I will admit it: I have been really edgy lately. I am tired of the madness. I know that we have a lot to be thankful for and that our situation could be much worse. Katie feels fine. But I do want some peace of mind and a return to the joys of Maintenance that we experienced this Fall. I want neutrophils. I want my kid to be a kid. I want us to do kid things.

We think Katie is a champion kid, of course. She is a dress up queen and a dancing fool. She loves art projects and books and dolls. She doesn't let much get in the way of her own personal celebration of childhood. We continue to look for ways to support her efforts, as illustrated by one of my recent Questionable Parenting Decisions (QPDs). I thought I would share thed Naked Soccer story:

Katie has a Nerf soccer ball, and she often plays with it at home. She insisted that we had to bring it to Burlington, and I relented, despite the difficulty of fitting it into my purse, which was already full of all her other favorite goodies. (How many children bring Dora lunch boxes full of Play Doh to the Children's Specialty Center? I would guess that there are a lot of them!) Anyway, after a port access that was nothing short of traumatic--the nurse was great, but Katie just panicked--and a terrible movie (the Barbie version of the Dickens classic A Christmas Carol--yikes), Katie decided that it was time to play soccer. She scampered about the infusion bay clad only in Strawberry Shortcake underpants, pink toenails flashing as she kicked the ball while directing the nurses she had drafted into a very bizarre soccer league. ("You stand by your chair, and Mommy will stay here. I'll be the other part of the triangle.") "Only Katie," I thought. I probably should have dressed her. I probably should have spared the nurses. We were noisy. We were dangerous. We added chaos to the proceedings in the infusion bay. We interrupted traffic in the hall. I let it all go. I let her play. I encouraged her, actually, because she was having fun.

This was probably not my best parenting moment. I should have set some boundaries. Katie will read this story many years from now and wonder why I let her zip around naked in public. I let you cause chaos, Miss Katie, because you were happy, because you relaxed for a few minutes in the midst of a long day, because for once you forgot about your port and ran around with both arms at your sides, laughing and smiling. For the record, it was worth it, and I would do it again. I'm just sorry I didn't get a picture.

Friday Update

2009-01-16T21:43:00.002-05:00

We survived the rest of the week but just barely. Josh did end up staying home from school on Wednesday. He still had a fever when he woke up in the morning, and he was coughing. He and Katie both stayed with their grandparents, and they enjoyed the day. Katie was animated and energetic, and the sores were improving. We thought we were making progress...but we were also distracted by other commitments. This week was midterm exam week at school, and Amy and I have been very busy.

Thursday found us in Burlington. Katie had an appointment with Dr. Bradeen and crew at Fletcher Allen, and she met an infectious disease specialist. We hoped he would be able to identify this thing that Katie is fighting. Unfortunately, we still don't know what caused the sores, and her ANC remains very low. The sores on her face have cleared up for the most part but her lips are still quite sore and the focus of a lot of attention. Her energy levels ebb and flow from day to day but that may be based more on how well she sleeps the night before than on anything else. She has a lot of nightmares now, and she wakes up at least once every night crying out about something she is afraid of at the hospital. Last night it was the finger pick.

Another bone marrow extraction has been scheduled for this coming Monday, 1/19/09. The doctors are still edgy about the possible causes of the absence of neutrophils, so they want to compare this next bone marrow sample to the last one to see how things have changed in the last couple of weeks. They also want to send another sample off to John Hopkins for a more detailed inspection, which of course means they are still looking for signs of cancer. The roller coaster emotional ride never seems to end.

To top things off, my mom called school late this afternoon as Amy was working on some grades. Katie had a fever. We went home for an ear thermometer and changes of clothing. We were convinced that the other shoe was about to drop. It was a tense and quiet ride to Newport. As it turns out, the fever was gone by the time we arrived, and Katie provided the clue we needed to determine what had caused her temperature to rise. She told us that she had had a headache and that she and Grandma had fixed it with some juice. Our old friend blood sugar. Grrrr. The good news is that we are home for now and have some time to wrap up grades before making the trip on Monday, which is a vacation day. It is a relief to end the night at home and not in the ER.

Two Kids Sick!

2009-01-13T21:18:00.003-05:00

Katie's struggle with this virus continues. For the past three days I have been applying medicated Blistex lip ointment to her lips and a little to the sores on her face. The sores on her face are looking much better. They have dried up and the red areas around them are shrinking. Her lips are looking a little better too. However, during a close inspection of her lips tonight I found another new sore on the underside/inside of her top lip again. This one doesn't seem to bother her as much as the previous ones and she did let me touch it to apply a little Blistex to the outside of it. I'm curious to see how this one will progress now that the other sores seem to be getting better.

Josh is also sick tonight. This morning he complained of a headache, but we thought it was from lack of sleep since Katie had woken everybody up last night during a bad dream. In her dream she was screaming and saying "Don't take me to the hospital!" None of us got much sleep last night. Tonight, as we were putting Josh to bed, Amy noticed that he felt warm so she took his temperature. He has a fever of just over 100 and he is complaining of the headache again. We'll keep an eye on him through the night and see how he's feeling in the morning. Maybe my parents will have two kids on their hands tomorrow...

Still Coping

2009-01-12T11:47:00.004-05:00

Katie had a restful weekend, and shook off some of the nocturnal habits that she was displaying by the end of last week. She is still sleeping heavier during the day than at night but she is getting some balance back. These days of being cooped up with her grandparents, unable to go anywhere or play with any other kids, are schedule altering. She gets bored with nothing to break up her day and she ends up watching a lot of Dora videos and reading a lot of books. She can only watch so much TV and read so many books before the desire to nap overwhelms her. Then, with no reason to wake up, her naps last for hours and by the time bed time rolls around she isn't tired. We all look forward to her getting back to a normal routine some time in the future. We just don't know when that future will be.

The sores on her face and lips are about the same. One heals, another begins to form. I don't think we are making any real progress. One of our readers, Sarah (www.allaboutmollie.blogspot.com), suggested Clindamycin because it worked for her daughter Mollie when she was suffering from something similar. We will ask the doctors about it this Thursday when we go back for another follow-up. We have also been trying warm, moist compresses and most recently some Blistex medicated lip ointment for cold sores. With any luck, some of this will start working to clear up this infection.

A Face Full of Sores and A Swim Suit in January

2009-01-10T20:59:00.000-05:00

This is Katie as she was playing around the house this evening. Prior to the beach look, she was wearing a princess outfit, but then she declared that she was going to the beach. The next thing I knew, she was parading around the room in her swim suit, grass skirt, sunglasses and hat. The photo op. was too good to pass up.

The sores in her mouth and on her face are about the same today as they were yesterday. She isn't complaining about pain, and she is eating well, but she isn't happy with the creams and ointments that we have been using on the sores. Nothing seems to be helping much any more. We are just waiting it out at this point.

Katie is willing to soak her chapped lips with a warm washcloth, a strategy we are using to encourage the health of her skin, but it is hard to pin her down long enough to make her use the washcloth strategy. She is simply too busy. She watches less television each day. We take this as a good sign that she is feeling well despite all the ugly sores. She is the arts and crafts queen lately--painting and beading were two of her favorite activities today--and she likes to "write." She records her observations in small notebooks, and she uses my laptop. She tells me that I cannot interrupt her while she is working on her "projects." She is actually learning to recognize some letters, and I am thrilled, but it is her attitude as she works on these projects that I really like. She is so determined to do what her brother can do. She wants to be an adult NOW. She is so eager to learn. She will be a great student some day if she can avoid driving her teachers crazy. I'm simply happy to note that she has more energy today than yesterday and that she is growing up quickly in her own quirky way.

End of the Week Information

2009-01-09T23:15:00.003-05:00

There are fewer posts on here than I expected to see. I thought Amy had been updating the blog for the last couple of days but I see that wasn't the case. I apologize for the lapse.

Wednesday was a snow day for us. The whole family got to stay home from school and we spent some quality time at home relaxing. Katie was feeling good and was being playful.

Thursday, Amy and Katie went to Fletcher Allen for a follow-up appointment after last week's adventure. The blood tests revealed that Katie's ANC is still low, very low. Her ANC now rests at a whopping 40. Neutrophils that have in the past made up more than 40% of her white blood cells are now only 2% of her white blood cells.

The infection that manifested as a single sore inside Katie's mouth has spread. She now has several sores on her lips and what looks like several more sores developing on her face. At first they just look red and round - like small incidents of acne. But one on her chin has opened up and is now looking more like the sores on her lip than any acne that I have ever seen. The doctors said that the spots on her face could be some kind of reaction to the medication that she is taking now, so Amy and I are going to try giving her a little Bennedryl tomorrow to see what happens. I don't think it will do anything, but at least it will rule out the possibility of a reaction.

Doing Better

2009-01-06T09:18:00.002-05:00

Katie slept through the night last night without medication. She fussed a couple of times in the night but never woke up crying. She even woke up in a much better mood this morning and was generally cooperative. Her lips and mouth are looking even better this morning. It seems like things are moving in the right direction.

Healing a Little More

2009-01-05T22:05:00.002-05:00

Katie had a good day with Grandpa and Grandma Kelley today. She fussed very little and was quite content. To top it off, she lost the dry, dead skin that was covering her upper and lower lips and hiding what was really there. Her lips look much better and some of the swelling has gone down too, but with the dead skin out of the way, we can see what is left of another open sore that had formed on her upper lip. Apparently, the first sore spread. Despite being able to see the sore now, she is looking much better than yesterday. Maybe tonight she will sleep through the night without pain medication at 2am.

She is Tough

2009-01-05T11:37:00.004-05:00

She is indeed tough -- and still mad too. Katie is slowly recovering from the infection that has manifested as the sores in her mouth. Her lips are looking a little better and the sore inside her mouth is shrinking. The sores still hurt though, as evidenced by her behavior. She is still mad at the world and is prone to emotional outbursts directed at any and all people in the room for reasons as small as "he talked to me" or "I'm not hungry". She also isn't sleeping through the night. She is waking up at least once in the night crying because her mouth hurts. Tylenol and Liticain usually work quick though and she is back to sleep in 10 minutes or less.

Grandpa and Grandma Kelley picked her up this morning and are going to stay with her while we are at work until she recovers enough to return to day care. I hope they have good luck today and manage to avoid the worst of her outbursts.

Day 1 Back at Home

2009-01-04T09:51:00.002-05:00

We arrived back at home with Katie last night around 7pm. She was tired even after sleeping in the car for most of the trip home. She watched a Dora video and relaxed a bit before going to bed. This latest stay at the hospital was one of the most emotionally traumatic that she has ever had. She was mad at the world for the entire time she was in the hospital. This morning she is starting to act more like her playful, pleasant self. However, she has made it clear that we are never supposed to bring her back to the hospital again.

Her mouth sore is a little better this morning but it still hurts her. She cried at breakfast when some food touched it. One of her medications for the sore contains some Liticain to lessen the pain and that helps tremendously. We have to apply that every hour for now to keep her suffering to a minimum.

Today is our last day of vacation. Tomorrow we go back to work and Josh goes back to school. Katie is scheduled to spend the day with Grandma and Grandpa again. Lucky for us, they are still able to watch her during the day until she can go back to day care again.

She's Coming Home

2009-01-03T14:35:00.003-05:00

Now that the return of cancer has been ruled out and her infection is responding well to treatment, the doctors are sending Katie home again. We have been told not to expect her ANC to rise for another couple of weeks, but they don't expect any additional problems. It looks like this was all just one big scare and I for one am glad that it is over.

Good News/Bad News/Good Again

2009-01-02T20:43:00.004-05:00

What a day of ups and downs today has been. The morning started off well enough. Josh and I slept late and started our day slowly. By 10 am I had my first update from Amy. Katie had slept fitfully last night, not yet used to the nurses coming in to take vital signs every couple of hours. She was feeling pretty good, but was still not happy to be at the hospital. To make matters worse for her, but not us, the doctors were able to move up Katie's bone marrow extraction to this afternoon. That meant that Katie was not allowed to eat this morning and would not be allowed to have food or drink until 3pm. But at least there was a possibility that we would get some answers sooner than expected. That would be nice.

Just an hour later, I received another phone call from Amy. She had talked with the doctors again and been told that the blood sample that was drawn yesterday looked bad. The sample looked like it contained blasts again. It looked like the cancer might be back. The planned bone marrow extraction would now also include a lumbar puncture to test Katie's spinal fluid. Needless to say, I spent the rest of my day very stressed out. The last thing I wanted to hear was that the cancer had come back.

That was the last update that I had until after the bone marrow extraction was complete. At approximately 4pm, Amy and Katie returned to their room and I was able to get an update.
The extraction had gone off without a hitch and their was a little hopeful news. Apparently the marrow came out very easily and that is supposedly a good sign. It must come out harder when it is full of cancer cells. Additionally, the marrow looked healthy when viewed under a microscope. We wouldn't have any further information until the flow cytometry results came back.

Surprisingly, the flow cytometry results came back within the hour. They weren't expected to be read until Monday so our thanks go out to the doctor who put in the extra time to give us some peace of mind this weekend. The results were negative for any sign of cancer. What a relief that news was. Amy, who had been so solid as wave after wave of bad news rolled in, broke down on the phone as she passed along the good news. The relief in her voice was palpable.

However, now that we know that the cancer hasn't come back we are still left wondering what the real problem is. Whatever it is, it can't be as bad as if the cancer had come back.

Ushering in The New Year in The Hospital

2009-01-01T21:26:00.002-05:00

Well, we managed to stay out of the hospital for Christmas, which was exactly what we wanted and all that we hoped for. Be that as it may, New Year's day was just spent at the hospital.

Katie had a New Year's eve chemotherapy appointment yesterday. The night before, she had run a low fever while sleeping and then vomited just once and only a very small amount that morning. That was our first sign that something wasn't right.

She received her scheduled chemotherapy and the doctors checked her over from head to toe while waiting for the blood counts to come back. The counts came back quickly and with disappointing results yet again. Katie's ANC had dropped again to 140. The doctor found nothing wrong with Katie other than her chapped lips which we explained had developed rapidly in just the last day. There was no explanation for the low grade fever, the vomiting, or the low ANC.

In the not so distant back of my mind I was starting to wonder if maybe the leukemia was coming back, but it was a fear that I didn't really want to address. However, I asked the question anyway. What could be causing all of this? The answer was that they don't know, but a resurgence of leukemia cells could potentially be responsible. The doctors want to pull some bone marrow Monday morning to see if that is the case. On the other hand, other possibilities do exist. Another is that the bone marrow may not be working correctly. Apparently, it is possible to permanently kill off certain functions of the bone marrow while leaving other functions fully operational. They want to study her marrow to make sure that the cells responsible for making neutrophils are still alive and well. The consequences of dysfunctional marrow are not something that I want to think about right now. Of course, there is also the ever present explanation that Katie could just be fighting off something that we haven't detected yet. That explanation, unfortunately, was starting to wear thin.

However, this morning, after another night of low grade fevers, we glimpsed a potential light at the end of the tunnel. This particular tunnel gets a little darker before it gets lighter. Katie woke up with a massive sore in her mouth and lips that look like the shed skin of a garter snake. If you want a closer look, click on the picture to the right. I uploaded the full sized picture for those of you who want a real good close-up.

This infection is a good thing. Finally, she has a real infection! Here is something that is treatable and potentially causing Katie's neutropenia. That is the upside; the light at the end of the tunnel. If this sore is finally identified as a manifestation of a systematic infection then that could be her only problem. Her marrow could be fine. Her leukemia could still be in remission. Things could still be OK.

But remember, the tunnel gets darker before it gets lighter. Katie is still neutropenic. She also now has a definite infection. That means she is now a resident at Fletcher Allen Hospital until the infection is under control and her ANC recovers. She was admitted today, New Year's day, and is now back in her old room again on the fifth floor of the Baird wing. Because of the open sore and the neutropenia, she will not be allowed to go to the play room and enjoy herself. She will be confined to an isolated room with Amy for the next few days unless she wears a protective mask and then she is only allowed to take a walk in the hall but not to touch anything. Nobody wants Katie to pass on whatever she has to the other children on the floor.

Katie is not all that happy about being back in the hospital. It was a surprise to all of us and she was not mentally prepared for it. She fought with the nurses as they accessed her port this afternoon and then went into a quite, protective state in which she ignores the world around her and just shuts down. She stares quietly off into space or at the TV but will not interact with the doctors or nurses. She even ignored Grandpa Art and Grandma Kathy when they came to visit tonight. I was able to perk her up a little when I called the room tonight to wish her a good night. At least she talked to me. Hopefully, this will be a short stay and the doctors will get this infection under control quickly.

I'm still anxiously waiting for the bone marrow test Monday, but I'm hoping this infection is the real source of her troubles and the end to some of our worries.

Christmas at Home

2008-12-26T23:27:00.004-05:00

Christmas has come and gone and we were able to celebrate it at home. Katie was feeling great. In fact, all of us were healthy. The kids were very excited to open presents Christmas morning, and I captured plenty of video. I won't bore you all to death with all of the video from the day, but if you are interested I have uploaded a couple of short videos of the kids opening presents.

Still Healthy but Still Low Too.

2008-12-24T11:55:00.003-05:00

We got Katie's latest blood test results yesterday afternoon and discovered that her ANC, while climbing, is still low. She was at 299 as of Monday night. That is going to be enough to keep us home for Christmas and to keep some friends and family away. It seems like a bad thing, but when the alternatives are considered, I am very happy to be home for the holidays. It sure beats spending them in the hospital.

So what's going on? Why are her numbers so low and taking so long to recover? The doctors have shared some theories with us. They are considering the possibility that dosage levels are too high for the chemotherapy that she has been getting at home so they are likely to start adjusting the doses and watching to see how her cell counts react. There is also the possibility that the Bactrim that she has been taking as her anti-biotic to ward off pneumonia could be causing the low ANC. Apparently, that happens in some kids. The Bactrim will be the first thing to go. We were instructed not to giver her the next dose. Instead, they are goig to try a new anti-biotic when we next go back to Fletcher Allen.

Until then, she is free to stay home with us, and take absolutely no medications of any kind. This will be the first time in a long time that her little body will be entirely drug free. That seems like a nice Christmas present.