Tuesday, September 30, 2008

Getting Sick For Real

Katie was sick last night. She kept me up most of the night, running a low grade fever until it finally culminated in her vomiting this morning at around 7am. She is feeling much better now, but what a rough night. Amy was also sick last night. She came home from work, drank some cough medicine and crawled into bed. It was no later than 6pm and she never got out of bed again until this morning. On the positive side, this is the first time in a long time that Katie has been truly sick and it wasn't being caused by some drug that we had to give her. This time, it was just some kind of stomach bug.

Sunday, September 28, 2008

Blogging Slows Down Considerably

Now that Katie is feeling better and getting back into a far more normal routine we feel the need to blog about her status far less than we used to feel it. There just aren't as many life and death struggles or even simple ups and downs to report. Therefore, we will post to the blog only when something really interesting, important, or disastrous happens. We hope to never have to post to the blog for any reason in that latter category again.

For those of you who have become accustomed to following along, please don't stop. However, may I suggest an easier way of doing it. You don't need to visit the blog every day checking to see if there is an update. If you subscribe to the blog's RSS feed, that feed will get updated automatically anytime we post something to the blog. If your feed reader is a part of some program or website you visit every day you will know whenever we put up a new post without having to stop by just to check. So, how can you subscribe to the RSS feed and what is an RSS feed? Keep reading if you don't already know. Otherwise, click here to subscribe.


RSS stands for Really Simple Syndication and you can read a very technical definition about it here if you are so inclined. Basically it means that whenever we publish something here, the headline and a summary are automatically pushed out to all subscribers, sort of like email. However, instead of checking your email, you would check your feed reader or feed aggregator. That sounds like one more thing to do, but actually feed readers can be a part of your computer's desktop or part of some web page that you visit regularly anyway; making checking your feeds something you can do without having to take any extra steps.

Two of my favorite feed readers both use Google. One can be part of the Google Desktop and the other can be part of IGoogle. Both Google tools allow you to add widgets that are capable of doing all sorts of things. Some of the available widgets are RSS readers. Windows Vista also has a Google Desktop like feature called the windows sidebar. It works the same way.

IGoogle is my favorite online place for viewing feeds. IGoogle is a customizable Google page that can include your calendar, gmail, RSS feeds, news, weather, and more. I use IGoogle all the time and I have an RSS widget on my IGoogle page that shows the latest comments on Katie's blog so that I don't have to check my email or come to the blog to read the comments. You could set your IGoogle page up to display the latest blog entry for the Katiegracekelley blog. My favorite rss gadget for IGoogle is "Custom RSS". It is very customizable and easy to use.

If using Google Desktop, which also has great search features, you can turn on the sidebar and have a list of your favorite feeds always available right there on the side of your screen. Of course, this blog should be one of the feeds. My favorite desktop gadget is Google "Web Clips". It can be found by adding gadgets from the Google Desktop program and searching within that program for "web clips". There are lots of options out there other than what I just wrote about, so if you already use something else, or just don't like these options, feel free to google the term "rss reader" and see what's available.

That is all there is to it. So subscribe to our feed and keep getting updates whenever we post something new without having to check just to see if there are new updates.

Wednesday, September 24, 2008

A Multi-Day Update

It has been a few days since we posted anything to the blog and we are starting to field questions because of it. Therefore, it must be time to post an update.

Katie is doing great! As always, when things are going well, the blog takes a back seat, but rest assured, things are going very well. Day care continues to help Katie get back to being a normal 3 year old kid. Every day, I can see her changing a little more and gaining back some of what she lost over the past 7 months.

Josh is acclimating to life in first grade. Behavior expectations are a little more strict than they were in kindergarten and he has gotten in trouble a couple of times this week for being unable to control his urge to talk to anyone and everyone around him. It's going to be a sharp learning curve.

Amy and I are still feeling pretty well overwhelmed and are just trying to stay on top of things. It has been extremely difficult to jump back in and start school up again this year, but we are managing. I keep waiting for things to get a little easier, and they have in the last week or so. But I sure could use a bit more of a break.

Katie went to North Country Hospital again this evening for a finger pick blood test to determine how well she is handling the new doses of medications. We won't get the results for a day or two, but there was good and bad news that came out of the finger pick process itself. She had to have two fingers picked because the first one clotted up and couldn't be used. Her blood hasn't clotted that quickly since she first got sick. That was the good news. The bad news of course was that she then had to be stuck again to get more blood. I don't think she considered any part of it to be good news.

Sunday, September 21, 2008

Cheese

I snapped this picture Sunday afternoon as Katie was sitting on her Dora couch, eating some soup for lunch. She really likes the camera.
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Saturday, September 20, 2008

Life Returns To Normal

It's a new normal, but it still feels as close to normal as we have been in a long time. We get up every morning, get ready for school, drop Katie off at day care and Josh off at school then we head to school ourselves. At the end of the day Josh joins us at LR and we all go to daycare to pick Katie up. We go home, have dinner, relax for a bit, go to bed and repeat. Katie feels fine for the most part. She is still three, so she is prone to the occasional tantrum although they are typically short. A good nap in the afternoon really helps.

Katie really had a great end of the week once she started staying at daycare all day. She napped very well with the other kids, ate what they ate, and even started using the potty. She had been refusing to use the potty at home.

Today has been much the same. She has really been in a great mood with lots of energy to spare. It was my (Rick) birthday today so we dragged Katie out to breakfast, then to my parents house, then to her Nana's and grandpa Jerry's house for dinner. She is running on just a 15 minute nap that she snuck in on the way to my parents house, but she has more energy in her right now than Amy does. She is still dancing around the house as I write this.

Thursday, September 18, 2008

Another Good Day

Katie had another good... no, great day at day care today. She is really doing well there and the full day program is agreeing with her.

Wednesday, September 17, 2008

Daycare Success

Katie went to daycare for the first two days of this week for just half of the day. She handled those half days pretty well, but she seemed very tired by the end of the day. I had asked my parents to pick her up at the half day point to make sure that she was able to come home and get some sleep so that she wouldn't be overwhelmed by daycare, but she wasn't sleeping much in the afternoon after being picked up. So, today we tried a full day at day care and let her take her nap there. It worked like a charm. She took a full two hour nap after lunch. When I picked her up from day care today she was happy and energetic and ready to play. She remained in a high energy, happy mood for the rest of the night. She walked to the store and back home again with Amy. She climbed up the stairs here at home several times and she climbed back down the stairs for the first time in months. Amy and I are incredibly happy to see her doing so well and we are hoping that things continue to go in this new, positive direction.

Monday, September 15, 2008

A Newer, Nicer Normal

For months we have lived with the idea of "the new normal." We have adjusted our expectations and changed our plans. We have shifted our priorities and tweaked our schedules. We have changed our habits.

We are on the verge, I think, of discovering a newer and much nicer normal.

Katie went to day care today for the first time since January 15th, and she loved her day at Jeannie's house. We left the house together this morning, and we made the trip up the hill for the first time in a very long time. Katie dressed up for the occasion, of course, and she was eager to get going. "Come on, Aim," she encouraged. "We have to go!" It was a surprisingly emotional moment, not because I was worried (although I was) but because my beautiful baby was finally free of our house, surrounded by kids and sincerely happy to be out in the world exploring and preparing to play. She trooped right in, full of plans for the day and raring to go. When I could finally define my feelings, I found two thoughts: It was profoundly satisfying, for one thing, to watch as Katie returned to a place and to a set of activities that belonged to our old normal life--to our everyday life before cancer. I was also just incredibly proud of Katie. She is stick thin, she has no hair, and her gait is very weird, but she walked into Jean's house like she owned it, forging ahead bravely and tackling another phase of her recovery. She didn't cry or fuss or clamor to be held. She didn't want us to stay. She allowed Jean to put blankie out of reach. She was ready, and she was awesome.

We ALL went to school today. Every single one of us had a good day. Josh had school pictures, we had meetings and we prepared for a pep rally this Friday. Josh had a play date, and he did his homework. We had a real dinner. We brushed our teeth. We had stories before bed. We looked like a normal family. It's almost too good to be true. We had no idea how good we had it before cancer. I wonder how long we will be able to appreciate just how fortunate we are.

May 10, 2010

Rick has been asking me to write a longer update about Katie's day in Burlington. We came home glowing, full of good news and renewed optimism. Some of our discoveries were almost too much to process all at once, and it was a very emotional day. We have had a lot to think about. I finally have time to share some of the best news with you.

1. Katie has started the Maintenance stage of her treatment plan. Her doctors continue to believe that their therapies have worked; the leukemia has gone, and this long but manageable stage of treatment simply ensures that it will not return. Chemo continues for two more years, but Rick and I will administer most of it at home, and we will travel to Fletcher Allen for IV chemo just once a month.

2. We don't have to return to Fletcher Allen until October 9th. While this is a little bit terrifying, it signifies the doctors' belief that Katie is really and truly well and in the process of recovering strength.

3. Katie can return to day care. She can play soccer and go to dance class. She can go swimming at IROC. She can have playdates and visit friends. She can run through the corn maze. She can go trick or treating. She can bob for apples. She can participate in everyday activities that have been off limits for a long time. She can be a kid.

4. Katie's treatment will officially end May 10th, 2010. Come hell or high water, we expect to celebrate her final day of treatment in a very big way. I was thinking of throwing a party. Rick is talking about Disney World. Whatever we do, it will be festive--big and noisy and rambunctious and messy and fun.

The very idea of an end date is inspiring. I met another mom at the clinic on Thursday. Her son is eight months into the Maintenance program, and he is thriving. As she pointed out, time passes quickly when kids are busy being kids. There will be glitches, I'm sure, but the end is in sight. In the meantime, Katie will do her level best to grow and to play, inching along the path toward health with great hope. She is in great spirits. She knows that she is winning this weird little war, and she is very proud of herself. For what it is worth, I'm proud of her, too.

Monday at Daycare

Katie is at day care for the first time today since being diagnosed with leukemia back in January. She was very excited about going this morning. She left us quite easily to go off and play. Amy had the harder time of it and for good reason. We are both nervous about leaving her in new, albeit capable, hands with other children again. There are so many things that could go wrong and so many germs that she could be exposed to, but she can't stay home forever. This will do her a lot of good both physically and emotionally if we can make it work.

Friday, September 12, 2008

A Short Update

Katie's treatments went fine yesterday and her blood tests showed numbers that were very positive. Her ANC is over 900 at this point and her health has improved to such a degree that she has been given the OK to go back to day care. Katie and I visited daycare today to get a feel for it and she didn't want to leave after just a half hour. She wants to go back Monday so I told her we would try a half day Monday.

Amy had a lot to say yesterday about Katie and her positive prognosis - so much so that I told her she should write the blog entry. However, she fell asleep before doing it so I thought I should at least put in a little filler to forestall questions and let people know that there was nothing to worry about. Hopefully, Amy will have a chance to update the blog with her thoughts from yesterday later this evening.

Thursday, September 11, 2008

Hungry Day

Katie and Amy are off to Fletcher Allen this morning and Josh and I are at school. I'm in a study hall right now, updating the blog. Katie is getting her first chemotherapy treatment as part of maintenance today and it just so happens that it is a treatment requiring a lumbar puncture so she will be getting some anesthesia again. That means no food. However, she was great about it this morning. She woke up early enough that she could still drink so she sat around this morning sipping on a juice box contentedly. Hopefully today's treatment doesn't break the streak of really good days that she has been having.

Wednesday, September 10, 2008

Katie With Grandma

Last week we were trying to determine why Katie was so lethargic while we were at school and so perky when we were home and we took a guess that she was bored and sad because she had to stay home while we went off to work to have all the fun. So we asked her grandparents to try something new. We asked them to get her out of the house to see if it helped and it helped tremendously. My parents took her to their house during the day and Kathy took her out for lunch at the B&W snack bar. Katie loved all of it. She was 200% perkier and more energetic. She was happier and she was active enough to be working on getting healthy again. We really need to get her back into daycare where she can have her own place to go in the mornings and play all day long with other kids. That day can't come fast enough.

Tomorrow, Katie has to go back to Fletcher Allen for her first chemotherapy treatment in the maintenance phase. She is not going to be happy about going back considering that it won't be a quick one. The first treatment involves a lumbar puncture and sedation again, but at least after that, she won't need more hospital delivered drugs for a whole month. Amy is taking the day off to take her in tomorrow. Josh and I will be going to school as normal.

About Josh and school - His first homework assignment went very well and was done on time. His second one didn't go nearly as well. Amy and I both worked late after school yesterday and did not have time to help him with his homework there. Then we came home and picked Katie and Grandma Kathy up to take them to Newport for a blood test and dinner. By the time we got home from dinner,it was after their bed time and Josh had fallen asleep in the car. No homework done last night. We are going to try and get it done this morning.

Monday, September 8, 2008

Homework

Katie continues to enjoy her improving health, and we had a great day yesterday. She played all day long and was reluctant to nap; she didn't want to miss anything. I am especially happy about Kate's enthusiasm for school. She wears a favorite backpack and pretends that she is catching the bus or that she has to go back to school for her lunchbox. (She is the mouse from If You Take a Mouse to School.) She is determined to finish her "projects" (whatever those are), and she wants homework. We may have created a monster, but the monster will be a very diligent student anyway.

Katie has also taken an interest in learning her letters. She recognizes very few letters at this point (o, s, k and sometimes t), but she is eager to learn, and she thinks it's funny to practice the sounds the letters make. The irony is that when Katie's health is good and I don't have to worry about her body, worries about her brain creep back in to fill the void. (I just really like to worry, I guess.) The real deal is that some of the drugs Katie has taken affect the brain. Many kids with cancer develop learning disabilities, and these are more common in girls who begin treatment when they are still very young. (Hmmm...) My gut feeling is that Katie will be fine, but it's probably too early to tell. When she takes an interest in learning preschool skills, I'm happy to get out the puzzles and the blocks, and we have been looking for letters we know in street signs. I figure every little bit should help...

On a funny note, Joshua came home with his first official homework assignment. Rick offered to help him with it at Lake Region this afternoon while I went to a meeting, but I volunteered for our first homework duty. I can picture us fighting about who has to help him with homework when he is ten, but it's fun, for now, to supervise my own child's math homework. It's hard to believe he is old enough that we have to have this conversation. He was good about sitting down with it, though, and he whined while he did it but took care of it pretty quickly. He used the eraser a lot. He had to practice spelling the words for numbers, and he wanted his work to be neat. I think it's a good sign that he really wanted to do a good job. He read with me before bed tonight, too, and I made him read to me from the Bob Books. Poor kid. There's nothing quite like getting more homework at home. If only my students knew how little homework they get in comparison!

Homework. Wow. If only I could keep up with the homework all my students have been turning in. Yikes...

Sunday, September 7, 2008

Musical Sunday

The kids are in a rare mood today. I am trying to get some work done at my computer and the kids are dancing, singing, playing instruments and just plain having fun with anything musical and noisy. It is good to see and fun to watch.

Katie is pushing the limits of her physical abilities and suffering the consequences on occassion. She has fallen down and gotten several new bumps and bruises today, but she has shaken most of them off and gotten right back to whatever she was doing. At least one of her new bruises is going to be with her for some time I would guess. Just a few minutes ago she grabbed Josh around the waist and lost her balance as she tried to cling to him. As she fell over, she bumped the back of her head on the edge of a chest filled with blankets. She broke a blood vessel and it left a big bruise almost immediately, but she shook it off quickly and is now making a fort with Josh and his friend Jack in Josh's bedroom.

Saturday, September 6, 2008

Overnight in a Tent

Camping


As spring approached this year, Josh began to get excited about the possibility of going camping. So, I promised him that we would. Without exception, every time we planned to go camping something went wrong and it rained or we ended up at a hospital with Katie or just home with her because she was so sick. Last night, I finally took him out and let him get in his first "camping" trip of the year. We stayed in our tent about a quarter mile out behind the barn where we keep our horses in Irasburg. From the back corner of the pasture, we can walk down an overgrown path that follows a power line and eventually comes out in a small meadow surrounded on all sides by a mix of hard woods and softwoods. It's close, but it feels like we hiked out into the remote wilderness and got away from everything. This was an after school/work activity, so it was hurried and not very extravagant. We simply parked the car, carried the tent and our sleeping bags out to the meadow and set things up and then headed into the house to say hello to Nana and Grandpa Jerry. We didn't spend too much time visiting because it was quickly getting dark and that over grown path that led to the meadow was barely visible in the light of day. The wind was blowing too hard last night for a camp fire so we simply crawled into the tent and went to sleep. Josh was out in a matter of minutes. I spent the next several hours wondering how I ever thought sleeping on the hard ground was fun. It didn't bother Josh at all. He slept through the night without stirring. I know - I was rolling over to ease my aching back at least twice every hour. This morning, we packed up and had pancakes and bacon with Nana before coming home. An aging camping trip promise fulfilled at last.



I almost forgot to mention that he lost another tooth this morning as well. One of his top front teeth has been loose for weeks and these last few days it has gotten really loose. This morning, he pulled it out himself so he wouldn't lose it while eating his pancakes.

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Friday, September 5, 2008

Parent Sick

Amy and I have noticed a pattern of behavior from Katie when we leave the house in the mornings no matter who we leave her with. She seems fine in the morning, even energetic and ready to go. However both Kathy and my parents report that she wants to do nothing all day long after we leave. We don't get to see it though because the second we walk through the door, she rushes out to greet us and then plays happily for hours. I think she has gotten a little used to our non-stop company over the course of the summer and watching us leave each day puts her in a funk. We get to resume our lives and she stays stuck at home. It will be good to get her back in day care where she can feel a little more normal herself.

Thursday, September 4, 2008

She's Up And Running

It may not be pretty or fast, but Katie is running around the house and she is happy about it. In these quick videos and the picture, Katie and Amy are practicing sprinting out of the blocks like they do in the olympics that she watched some of while in the hospital. Needless to say, we are thrilled to see her moving. Amy has plans for her future in cross country.

video

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Uh Oh!

Grandma got sick in the night and is still sick this morning. Under normal circumstances we would ask her to stay away for a week or so until we were sure that she didn't have anything contagious that might get passed along to Katie, but what can we do now. She has spent more time with Katie in the last few days than we have. If she had something to pass along, Katie has already been exposed. She thinks and we are hoping that she must have eaten something that didn't sit well with her. She is currently blaming it on some expired salad dressing. Nobody noticed the expiration date was gone by last night at dinner because it tasted just fine, but the label says we missed it by a few months.

Wednesday, September 3, 2008

A Hum Drum Day

Katie didn't do much today. I don't know exactly if she wasn't feeling or if she was just upset about being left at home with Grandma while the rest of us went off to school, but she spent all of her day on the couch not wanting to do anything but watch Dora. There was evidence that she just didn't feel well. This morning as we were getting ready for work she was complaining of feeling bad and she was displaying signs of a possible low blood sugar. Nothing really low, but maybe just low enough to feel crummy. So I started her off with some orange juice. It didn't help. By the time we were ready to go, Amy gave her a dose of Ranitidine and Zofran to combat other potential causes of her crummy feeling. That didn't work either. The Ranitidine tastes bad and Katie gagged on it. Then she vomited all over herself, the couch, and her blankie. But immediately after, she said that she felt better and she seemed to truly be feeling better as we headed out the door.
But then she had her blah day and it was easy to believe that she wasn't feeling better after all. That is, until Amy and I returned from work. She got off the couch for the first time to greet us with very enthusiastic hugs and she has been playing well ever since. So who knows what inspired her day.
Right now, she is getting tired and cranky. It is almost time for bed.

Tuesday, September 2, 2008

Next Live Broadcast

Don't miss it. Katie will be live on my web cam this Thursday, 9/4/08 at 6pm. Most broadcasts last about 15 minutes and are simply the result of a web cam turned on while we live our lives.

Kathy

Katie has a new favorite activity. She has discovered that my name is Amy, and she insists on using my given name all the time. She even calls me "Aim." When, thoroughly irritated, I ask her what my real name is, she smiles as she says, "Mom." She knows full well just how cranky I am that she uses my first name, and she thinks it's funny. Grrr...

My own mom tells me that my brother insisted on calling her Kathy for a long time. She finally broke him of the habit by explaining that we were the only two people who would ever call her "Mom" and that being our Mom made her very happy. I diligently tried this strategy out on Katie, of course, and she gave me a big hug: "I love you, Aim." Hmmm... For the record, my brother gave up calling my mother by her given name for many years while he was a kid, but he insists, now, on calling her Kathy.

Poor Kathy is probably going to disown the Barton branch of the Hessler family by the time we get Katie back to daycare. She goes above and beyond the call of duty every week. She gives up her own quiet house to live in the midst of chaos. She exchanges her own comfortable bed for Katie's twin (and the Dora sheets!). She cooks for us. She empties the dishwasher. She even folds the laundry. (Way above and beyond...) I am so grateful. We would be sliding so much further behind without all her help. The sacrifices she makes render it possible for us to go off to work together in the mornings. I am free to worry about teaching every day because I know that Katie is safe and happy at home. I cannot tell you how much easier it is to walk out the door when our parents (Rick's too!) are here to supervise.

My mom does report that Katie spends some of each morning in a funk. She wants to go out into the world, too. She wants to engage with people and to play with other kids. She wants to return to her normal activities. She wants work to do and lessons to learn. Those will come. Isolation takes its toll. Aside from some trouble with reflux, she appears to feel well. Her health is improving. Once she gets going every day, she is content to draw, to paint or to play with blocks. We are making progress. As strange as it sounds, I look forward to the day that she can return to day care; Katie will be very happy to see her friends, she will learn that other people need to share the world's attention on occasion, at least, and I will know that she is truly on the road to recovery. In the meantime, many thanks to Grandma Kathy and to Rick and Jean for all their help. Our current schedule would simply not be possible without all they do to support us.

Monday, September 1, 2008

A Peaceful Labor Day

Katie had a good day yesterday. She got out of the house to play and to walk around town a couple of times, and she finished her day at the B & W. Her immune system is still compromised, but family favorite Bugs and Worms offers outside seating at picnic tables along the river, and it met all our needs. Katie ate a great big dinner that include foods from all our plates: Rick's cheeseburger, Joshua's chicken and my fish sandwich. It was a fried protein fiesta, and we enjoyed watching her eat. Food continues to be an issue. We are actively encouraging Katie to eat all day long; we would like her to gain weight, and while popcorn chicken might not be her best nutrition choice, she was happy to have it, so we got out of the way and allowed her to gorge.

Some aspects of our lives are slowly returning to normal. Rick and Josh went to a family party Saturday night. I spent several hours at the St. Paul's tag sale yesterday. We are getting out and getting involved in regular activities again, and I am comforted by rituals. Garbage goes out Tuesday mornings. Saturday is our weekly recycling trip. Joshua starts soccer next week. Routines are satisfying. If we are home to get the garbage out and can even make it to school on time, then all is well. It's the simple things that keep me going, silly though they may be.

For the record, it's great to be back at school again. I love going back to school each year. The weather is changing. Fall is approaching. The world keeps turning. So many aspects of our life have changed in the last seven months. We are all so different. Our concerns and our joys are so different. Personally, I have a new appreciation for the things that don't change--for the few constants in our lives like our families and our friends. It's also nice to have a day off to catch up!

Katie slept well (and in her own bed!) last night, but she is tired today. She has been working so hard to get well, using muscles that haven't had much (or any) exercise in quite some time. She needs extra time to crash this week. I am so grateful for the treatment vacation we have been given. Katie took a walk around the block with me Saturday, and while it wiped her out for the rest of the day, it was so exciting to watch her build strength. It's absolutely beautiful today. I think we had better get outside soon to appreciate the sun. If we don't answer the phone today, we're off on an adventure. I think we might go hiking...:)

Here's hoping you'll enjoy the long weekend, too.