Christmas at Home

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.

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.

Uninspiring Test Results

Katie was back at the hospital yesterday afternoon for another blood test, again hoping for a rise in her ANC. However, it was not to be. Amy recieved the phone call today at school and learned that Katie's ANC is still low. In fact, it dropped again and is now resting at just 115. However, her overall white blood cell count is climbing and her monocytes (the part of the white blood responsible for making neutrophils) are climbing as well. So the current prediction is that Katie's ANC will be much higher by Friday which is when she goes back in for another finger pick blood test.

I think she has an angel looking over her shoulder right now, doing everything in her power to keep Katie out of the hospital. It was a full 14 days ago today when we discovered that her ANC was dangerously low. 14 days ago, the staff at Fletcher Allen thought we would be coming back for an extended stay very soon. We aren't out of the woods yet, but I already feel very lucky that we didn't have to spend these past 14 days in the hospital waiting for her ANC to rise.

Still Neutropenic

We took Katie to North Country Hospital again yesterday afternoon for another blood test to count neutrophils. The results came back today. Her counts are up a little, climbing from 120 on Monday to 260 yesterday, but she is not out of the woods yet. She will get tested again on Wednesday and hopefully her counts will be up over 750 by then. Either way, it looks like she will spend another week out of day care. She is taking it well. She is happy to spend her days with her grand parents but she does say that she misses her friends. At least she is still feeling good and doing well aside from the low ANC.

Weathering the Storm

Katie went to North Country Hospital Monday afternoon for a follow-up blood test to see if her ANC had recovered at all yet. Unfortunately, the results showed that she had an ANC of just 120. So she is no closer to getting her immune system back in working order. However, my illness (My means Rick in this instance) has run it's course and I an now feeling better. I even went back to work today and Katie shows no signs of coming down with what I had. The official results are not in yet so I don't yet know for sure if it was the Flu, but it was nasty and unpleasant and I am very glad that she doesn't have it at this time.
My parents in Newport have been taking Katie every day because she can't go to daycare with her numbers so low. They are really going out of their way to help us out. They drive here in the morning to pick her up and they drive back in the evening to drop her off. We are especially thankful for their efforts.

Neutropenic and Exposed to The Flu

Katie took a scheduled trip to Fletcher Allen Thursday for a lumbar puncture and chemotherapy. The only thing that made the trip unusual was that I wasn't feeling well. In fact, I was feeling pretty sick but since I wouldn't be expected to do much but wait for the chemo and the LP, I figured I could handle it.

All went well with the chemo and the LP, but as we were leaving the hospital, one of the nurses caught us and told me that Katie's blood tests had just came back and her ANC was a mere 360. She was neutropenic. I was also running a fever by this point.

Today, I went to see my own doctor because I was still feeling pretty bad. It turns out that I probably have the first case of the flu to be reported in Vermont this year. So far, Katie shows no signs of coming down with the flu herself but we are watching carefully and waiting. If she starts to run a fever, we are headed to Fletcher Allen for an extended stay.

One of the last things the nurse told us before we went home was to pack some bags. We would likely be back. I am hoping to prove her wrong.

Pneumonia

We definitely do not update the blog as often as we should any more, but here is the latest. In our last post, I mentioned that Katie had some fluid in her lungs. Well, it turned into pneumonia. The ear infection she originally had cleared up right away but she did have to go back on a different antibiotic to fight off the pneumonia.

The strange thing about this case of pneumonia was that we couldn't even tell that she had pneumonia other than from the sound of fluid in her lungs. Her cough had almost vanished and she was capable of running and playing as if she was in perfect health. Either way, 5-days later, her pneumonia has also cleared up and her follow-up doctor's appointment today revealed no additional problems. She is perfectly healthy again.

Later this week, she has an appointment for a lumbar puncture and chemotherapy at Fletcher Allen. I don't expect any surprises from that visit, but any day involving an LP is going to be a long day and she isn't going to like it.

An Ear Infection and Fluid in Her Lungs

Katie and winter have never gotten along all that well. Each year, as the temperature drops, she begins coughing, wheezing, and having trouble sleeping at night. Eventually it gets bad enough that she has to use a nebulizer to break up the mucus in her lungs and allow her to breath easier. That is how we ended up discovering that she had leukemia last winter. She had been sick for several days and even the nebulizer wasn't helping her to fight it off. She was exhausted from lack of sleep, and as we discovered at the hospital, lack of red blood cells. We had become so accustomed to her being sick that it was only after she really took a turn for the worst that we took her to the doctor.

This year, we are having none of it. Katie began coughing again as soon as we had a few cold days in a row and we began listening to her breathing very carefully. She was wheezing a little, but it all seemed to be upper respritory. A few days later it was worse. She was still coughing and wheezing more and it was sounding deeper in her chest. We used the nebulizer but it didn't seem to have any effect. So we took her to the doctor.

As it turns out, she has an upper respritory infection, and her lungs do sound like they have some mucus in them. She also has a bad ear infection that she has not complained about. After having sorted all of that out and taken a trip to the pharmacy, she was back home with a new bottle of Amoxicylin. Lets hope she gets better quickly and can stay strong and healthy for the foreseeable future.

Revisited by Croup

Katie came down with a case of the croup again the other day, coughing loudly and uncontrollably for hours on end. Luckily the worst of it was over in under 24 hours and she only lost one night of sleep. The coughing was not even slowed by vapor rubs, hot showers, humidifiers, or a drink. We did manage to find one home remedy that appeared to work. Cold air seems to do the trick. If we took her outside for even 5 minutes, she stopped coughing. Once she stopped coughing and relaxed for a bit, she was fine to go back inside.
Now she seems to be fine. A little cough is lingering, but nothing like what she was suffering from.

Trick or Treat

Halloween was definitely a treat this year. We took the kids walking around town with 13 other kids for 3 hours trick or treating. They loved it. Katie was trick or treating like a pro. She followed her brother up to one front door after another. He knocked, they both said "Trick or Treat" and they both said thank you after the treats were delivered.

Here they are carving up their pumpkins the night before Halloween.

Here is Katie in her little lion costume. This was Josh's costume when he was younger.

Here is Josh in his Optimus Prime costume. He was very happy to be dressed up as a transformer.

After almost 3 hours of trick or treating, Katie was looking pretty tired. Josh was dragging his feet by then too.

When we got back home she perked up just thinking about all the candy in her pumpkin. In the picture she is straining to hold it up for the camera.

An finally, here are the pumpkins that we carved all lit up in front of the house. I (Rick) carved the one on the left from a pattern using my Dremmel. Josh thought that was pretty cool.

A New Addition To The Family

Unable to keep our lives simple, we have added another member to our family by the name of "Inky". Inky is a young cat of undetermined age or lineage. He was a stray that our daycare provider fed and then couldn't get rid of. She got rid of him by giving him to us. We may have actually lucked out however. So far this cat is unbelievable. He follows the kids around the house instead of running and hiding from them. He has used the litter box without mistake since we first brought him into the house (yesterday). He travels well in the car and went with us to Nana's house tonight for dinner and got along just fine with her dogs. This cat seems too good to be true so far and the kids absolutely love him.

Another Monthly Visit Come and Gone

Katie had to go back to Fletcher Allen for her monthly checkup and dose of Vincristine Thursday. Things went pretty well. Her appointment wasn't until noon, so we had plenty of time to get there and no reason to rush. It wasn't a hungry day for her so we could stop and get some snacks on the way into Burlington which always makes her happy. She stayed happy even as we walked into the clinic. She even lead the way to the infusion bay, running in front of me, laughing and squealing, telling everyone who would listen that I was chasing her with the stroller. She ran right into the infusion bay and that's when her enthusiasm ran out. She suddenly didn't want to be there and didn't want anyone accessing her port. But everything went so smoothly that she was still complaining about not wanting anyone to touch her port when the medication was already in and her port was already deaccessed.  It was a nice, quick treatment. After that, we picked up Grandma Kathy and headed over to the Olive Garden for lunch. Trips that go as smoothly as this one just did go a long way toward making the next trip seem not quite so bad. Granted, the Vincristine did end up making her vomit later that night, but that was to be expected. She had a pretty decent day today and is sleeping peacefully right now.

She Has Hair

Take a look at this little bit of hair that has started to grow in. Katie has been bald for so long that it is going to seem weird to see her with hair again. For that matter, I have started to let my own hair grow back now that Katie is growing hers and I think I look weird with hair again!

The Week's End

Another week has come and gone and the weekend is here at last. Katie's illness is gone now except for some sniffles and a cough when she first wakes up. Amy is also feeling a little better each day but she hasn't quite recovered yet. Josh and I managed to avoid the illness all together.

We had dinner with Robin and Jerry last night and while we were there, Josh and I took the horses out for walk. It has been so long since we gave them any attention, we felt that we were better off walking them on lead ropes rather than trying to ride them. It was a nice night for a walk anyway. The horses enjoyed it so much that we got a phone call first thing this morning informing us that our horses had decided to take another walk all by themselves. So we spent most of the day back at Robin and Jerry's--repairing the fence, trimming bushes back from the fence line, and getting some other things ready for the horses once cold weather sets in. It was a nice morning, but now its time to sit down and get some school work done.

Better Then Worse

Katie was feeling good yesterday. Amy was feeling a bit better yesterday morning too. But by yesterday afternoon, Amy was feeling worse than she had the day before and Katie was coughing more again. By this morning, Katie was pretty cranky and upset because her throat hurt but that was pretty much her only complaint and Amy was still functioning enough to go to school. Josh and I are still feeling fine.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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...

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.

Overnight in a Tent

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.

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.

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.

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.

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.

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.

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.

A Good Morning

Katie is starting her day off with a little left over chineese food and a glass of juice. She seems to be enjoying it too. She had a great day all day yesterday and a peaceful night's sleep, snuggled in beside her brother in my bed. The two entirely took over the bed last night and Amy and I ended up sleeping in their beds.

Changing of the Guard

My parents helped us out today after Amy's mother headed back to her own home last night. Being able to count on two sets of parents to help us out really makes a difference. We can both go to work knowing that Katie is happy and safe at home by people who know her and love her as much as we do. It makes that one aspect of our lives a little less stressful.

Katie did well today while hanging out with my parents. She managed to squeeze in two naps and a walk around town in her stroller. She also got over her latest bought of constipation several times over again. The struggle for regularity has not yet been won, but at least it is the only struggle that we are engaged in at the moment.

Some Pictures

I have been remiss in uploading photos. So here are a few that are from the past three weeks.


Here Katie and Josh lie in a hospital bed at Mass General waiting for blood test results to come back.



The tests took too long to come back for them to stay awake. It was about 12:30 am when this shot was taken and they had just fallen asleep.



Here, Katie and I can be seen riding the subway to Fenway Park just hours before she ended up in Mass General with a fever.



This photo was taken last week at Fletcher Allen as she was playing peek-a-boo in her bed sheets.

Too Little Of This

What did you do with your evening? I finally did something that I have put off far too many times out of necessity. I listened to the requests of my son and put aside everything else for the night to help him add on to his tree house. We had fun climbing around in the old maple tree in our back yard, lashing pieces of recycled lumber and wooden pallets together in the tree to strengthen a top floor and put some safety features in place around the platform hanging ten plus feet above the ground. We keep a supply of lumber around, recycled from other projects, to add to his tree house when we have time. The tree house hasn't grown much this summer, but his smile sure grew bigger every time we added another board.

As for Katie, she watched for a bit. She even spent some time up in the tree house with us, but the mosquitoes chased her inside pretty quickly. She had a pretty good night - eating, playing, watching movies while climbing all over the couch, and just plain using her little body and enjoying herself. She seemed happy.

Climbing Numbers

After school yesterday, Amy and I took Katie to North Country Hospital for a finger pick blood test. Those test results were sent to Fletcher Allen and this morning Fletcher Allen called us with the update. Katie's numbers are headed in the right direction. Her ANC is up to 300 today from the 100 it was hovering at Tuesday. Her Hemoglobin is up to 9.1 and her platelets are up to 108. That means she will not need a transfusion at all this week so we won't have to take her back to a hospital until a week from Tuesday. Thats when her blood counts will be done again to make sure that her counts are high enough to begin maintenance treatments. We could have started maintenance this very next week, but they asked if we wanted a week off and I took it. One week won't make much of a difference if it is added to the end of this next two year process, but it will make a big difference right now.

Katie is doing great at home. She is eating better, she is playing more and she is walking again. We are still sorting out the constipation issues. She is on a daily dose of laxatives, but sometimes several days go by with no poop and then she will go six times in one day (all liquid) and then stop again for several more days. We are having a hard time making her regular again.

In addition to giving a Katie update here today, I would like to take this opportunity to say hello to Mollie and Sarah. Mollie is 4 and she was just diagnosed with ALL in June. She and her mom have been reading this blog and have created a blog of for Mollie at www.allaboutmollie.blogspot.com. Amy and I will be sure to check it out.

Home With Grandma

Katie is home today and she is staying with her Grandma Kathy while Amy and I both go to work. We were able to leave her this morning without any fuss at all. She was getting ready to eat breakfast and happily waved goodbye as we walked out the door. She is feeling pretty well after spending a night in her own house. Of course, she didn't sleep in her own bed... She snuggled in beside her mother and took over bed space to such a degree that I eventually gave up and snuggled in beside Josh instead. We need a bigger bed.

Doing Well At Home

Katie had a laid back afternoon here at home. She ate well, played some, went for a walk around town in her stroller and just enjoyed some familiar surroundings. Right now she is talking animatedly with Amy while Amy tries to read enough stories to put her to sleep. I don't see that happening any time soon. I'll bet Amy falls asleep first.

Home At Last

Katie is home. She made it through the night without spiking a fever. We went back in to Fletcher Allen at 10 am this morning to have one more blood sample drawn and to have her port deaccessed just as we had planned. Deaccessing was over in seconds and we were on our way home. She slept most of the way home. Now that she is here, she has had a nice lunch and watched a movie and now she wants to go for a walk. It's good to be home.

We take her to North Country tomorrow after school for another blood test to determine what comes next. Her current numbers are as follows:
Hemoglobin, 8.6
White blood cells, 42
Platelets, 59
ANC, 100 (down from 160 yesterday)

Home Again Sort Of...

Katie and I are out of the hospital again and back at Grandpa Art's and Grandma Kathy's. Her ANC was up again today. It climbed to 160 which is encouraging. However, her other blood cell counts all dropped a little. Red blood, white blood, and platelets are all down just a little. If they continue to drop at the same rate, Katie will need a transfusion on Friday.

I tried to get the doctors to take Katie off of her IV and all antibiotics last night so that we could see how she handled the sudden change while we were still in the hospital. But I couldn't get everyone to agree with my way of thinking. They did unhook the IV, but they kept up two more doses of antibiotics. So, since this was going to be the first night without antibiotics again and we were going to be away from the hospital again, I asked them to leave Katie's port accessed so that if we have to come in in the middle of the night there will be far less trauma. The doctors agreed so we are at her grandparent's house and she is still accessed.

If all goes well tonight and she doesn't get another fever, we will go back in to Fletcher Allen tomorrow to have one more blood sample drawn through her port before she is deaccessed. Then with her port deaccessed, she will be from to go back home to Barton for a little while at least. If her blood counts stabilize, she won't even need to go back to Fletcher Allen for a transfusion on Friday.

Late Night Update

Katie has had her transfusion. We also got her blood counts back and found a very disappointing ANC of 20. She is feeling fine. In fact, she stayed up late waiting for a transfusion to finish that didn't get started until 8pm. She seems fine except for the fact that she didn't eat a single bite of dinner and I put all sorts of food in front of her. Hopefully she makes up for it at breakfast.

Amy and Josh are staying with Amy's parents tonight so Katie and I have the comfortable and spacious hospital room all to ourselves. She has just fallen asleep and I am going back to join her.

One More Transfusion

Katie is feeling better today and her cough is getting better but her red blood cell count is low enough again for another transfusion. Amy didn't have her other numbers yet when we spoke.

Josh and I have taken care of some neglected saturday morning chores and we are now packed up and ready to head back to Burlington ourselves. If Katie stays in the hospital through the weekend, Amy will be coming back home with Josh for work and school on Monday. Today though, she is going to take him school shopping while I stay at the hospital with Katie.

She Has Croup

Well, it is now believed that Katie has croup. Croup is generally caused by a virus with a gestation period of 5 to 7 days. Therefore, it isn't likely that she picked it up while in Boston or on her short trip out to her grandparent's house. It is something she developed while staying at Fletcher Allen. As her body tries to fight it off, some negative consequences are beginning to be observed. Her hemoglobin count has dropped down to just 7.5. Her platelets have dropped down into the 50's, and her white blood cell count has also dropped. Oddly enough, her ANC appears to be rising slightly despite the dropping white blood count. Her ANC is currently 70. Apparently it is normal for some cell counts to drop as the body attempts to fight off a virus. Croup is also capable of causing fevers and other complications which could keep Katie in the hospital until this has sorted itself out. Amy and I are starting to talk about and plan for which one of us is going to miss the first couple of days of school with the students.

A Rough Start To The Day

I don't know much at this point, but Amy was able to tell me that Katie is having a rough morning. She has been crying a lot and very uncooperative. I wondered if she was struggling with low blood sugar this morning, but Amy said that her IV lines are still in and glucose is running through them. So sugar should not be the problem. The nebulizer or inhaler have still not been tried for some reason and the medication for acid reflux has still not been given. Maybe Katie is just cranky because these issues haven't been taken care of yet or maybe there is some other problem. We just don't know at this time.

The Little Things

Katie was back to having a fairly normal day in the hospital again today. Her ANC is still about 30. Her hemoglobin dropped a little lower down to about 9.8. Her platelets dropped a little lower too, but neutrophils and monocytes are still slowly increasing in number. She feels fine except for a nasty cough that she has now. The cough resulted from the unwelcome return to the hospital Tuesday night and all of the screaming that went with it. She had such a coughing fit at one point this morning that she vomited. Unfortunately for Katie, she was not in her room at the time and therefore she was wearing a mask over her mouth and nose at the time. It seems like a rather unpleasant experience. The doctor thinks she has reactive airways and plans on treating her with a nebulizer or an inhaler. They took chest x-rays to be sure and the initial results don't show anything wrong with her lungs. She is also dealing with a little acid reflux but that should be easy to treat with one of the medications that she has already had in the past. At home she doesn't like the taste of it, but in the hospital it can be run through the IV.

I just called for a further update, but I got shooed off the phone because they were busy playing in the play room. So, I guess they are having a good time and Katie is feeling pretty well this afternoon.

Birthday Update

It's late, but Josh and I are now leaving the hospital and headed home. Amy will stay with Katie in the hospital tonight and tomorrow night so that I can get in to school at least a couple of days this week.

Katie celebrated her birthday in the hospital today, and the hospital staff certainly did their best to make sure that she felt especially appreciated today. She was showered with happy birthday wishes and gifts and kindness. The child life specialist went so far as to allow me to shop virtually with a personal shopping assistant. I was given an computer with Internet access to browse online stores for what I still wanted to get Katie for her birthday but didn't have a chance to get while stuck in the hospital. I made up a shopping list from what I found and one of the volunteers took my shopping list and went shopping for some of Katie's birthday presents. Everything I asked for was purchased and it was returned to the room while Katie and I were taking an afternoon nap to recover from the late night last night. I woke up to find a bag full of the presents I had requested, a roll of wrapping paper, some scissors and some tape. By the time Katie woke up she had some presents around her to help set the atmosphere and keep her believing that it really was her birthday and we were doing our best to make it a special day. I didn't let her open a present until her mother, brother and grandparents arrived around 6pm for dinner. Her excitement built all day and she had a great little birthday party in her hospital room. She ate herself full of Chinese food and cupcakes and then toured the hospital in a wagon, giving out party favors; Slinkys and play dough to the kids and cupcakes to the adults. As Josh and I left Amy and Katie were settling down to play some video games.

As for her health today... she felt fine. Her fever was gone by the time the antibiotics were flowing last night and it did not return at all today. I can't explain it and no doctor has been able to explain it yet, but our last few emergency room visits have been very similar. Her ANC drops low, she goes to bed for the night and after a few hours in bed her temperature climbs. We wake her up and make arrangements with the hospital and by the time we get her admitted, the fever has come back down. It is one of the most frustrating feelings in the world to know that I just dragged my daughter out of her bed, and into a hospital where she absolutely does not want to be so she can kick and scream as she is examined and her port is accessed only to have her fever disappear like it was never there in the first place. I just wanted to turn around and bring her back home last night, but there was no way anyone was going to allow that. A fever can be deadly and every fever must be treated like it will be. I am so glad that we are almost to maintenance.

On a side note, my heart goes out to my two uncles who are now battling their own cancers. It is a long hard, scary struggle.

Josh and I are now going to get on the road. I still have to drop him off at my parents house in Newport before going home myself. He should be tucked into bed by midnight and I will get home somewhere around 12:30.

Uh Oh... Back Again

It is 2:30 am. This is going to be quick. Katie got another fever tonight at Grandma's house and we are back in the hospital. sigh...

To say it was hard to come back here doesn't come close to explaining how difficult it was.

Out Of The Hospital

Katie and I are out of the hospital, but not home. We are staying with Art and Kathy because the doctors didn't want us to be too far away. We have never been out of the hospital with numbers as low as they are right now. Her ANC is still hovering between 10 and 20. Her hemoglobin and her platelets dropped again this morning and she got a platelet transfusion before we left the hopsital. But, the general consensus was that nothing was wrong with Katie and everyone was just waiting for her body to start to rebuild itself. Since she wasn't sick she might as well coninue the process in a more comfortable atmosphere. So she left the hospital wearing a mask and went straight to Grandma's house. This way we are just 3 miles away from the hospital and we can get back there in an instant if anything changes.

Right now, she is snuggled deeply into the blankets in her bed here at her grandparents' house. She is very happy to be in a place that feels like home and she is going to sleep great tonight without the regular checkups by the nursing staff all night long.

Tomorrow is her birthday. We are very lucky to that we aren't going to have to celebrate it in the hospital.

An Update From The Hospital

I'm doing a quick update from the Ronald McDonald room in the hospital with Katie on my lap because I just checked to see if Amy had updated the blog and found she had not.

Amy went home last night to get ready for the first day of school. Katie and I are still at Fletcher Allen and we are going to continue to be here for at least a couple more days. Her hemoglobin is up a few points to 10.4 but her platelets have dropped down to 15 and her ANC is 20. One positive sign is that her neutrophils are up from 0% to 6% and that typically means that cell counts are about to start climbing.

Katie spent most of the day today feeling kind of blah. I think she was a little sick to her stomach. She never vomited, but after several hours of blah I asked for her to get some Zofran and five minutes later she was ready to eat and ready to play. It made a big difference.

Because Katie isn't running any fevers and has no sign of illness, the doctors might let us out of the hospital sooner than expected, but they also said that at such low levels, they can't let Katie get as far away as home. They might be willing to let us stay with Grandma Kathy and Grandpa Art for a few days instead. We would still be stuck in Burlington, but at least we wouldn't be in the hospital anymore. Anyway, that was one option mentioned this morning, but it hasn't been mentioned since so I'll just wait and see if it really happens.

Late Morning Update

I'm sorry that this update is late today. I couldn't get Amy to answer her phone this morning. It turns out that she and Katie were out and about in the hospital, playing and exploring. They left before I called and I put off calling thinking that they might still be asleep. There is a rooftop garden visible outside Katie's room at the hospital and they decided to go and try to find the entrance to it. They found it, but the door was locked. We have seen people out there before, so it is allowed, we just have to find the time when it is unlocked.

In addition Katie has been out playing in the hall with a couple of other girls staying on Baird 5. Apparently there was some sort of race involving little pink ride-on cars and tricycles. She has been painting, creating bead bracelets and just walking around. She is feeling good this morning.
Her platelets are low, but the doctors aren't going to give her a transfusion right now unless she begins bleeding for some reason. They would prefer to see her own platelets regenerate and they expect that to happen within the next couple of days. That also means that if her platelets are coming back on their own, other blood cells should start to come back as well. Her ANC will climb and she will be able to come home. Still, it looks like that is at least a couple of days away and one of us will end up missing the first day of school. I have volunteered for that sacrifice.

Evening Update

Katie has had another bowel movement and she has had her transfusion and her chemotherapy. Plus she got out of her room to play again this afternoon in the play room and the hallway. She was standing and putting some weight on her injured foot too. Now, she is tired. So she is relaxing in bed, watching some cartoons on TV and nibbling some food.

I have to admit that I have not been at the hospital to see her today. Josh and I already had plans for the day. We went to see Circus Smirkus this afternoon at a performance in greensboro. He absolutely loved it. Ther performers were incredible, but the best part for me was just being out of the hospital again. Her little hospital room really wears on us after a while. Josh and I will be staying at home tonight and tomorrow we will head back to the hospital. I'm looking forward to sleeping in my own bed and Josh is yawning everytime I look at him.

Poop At Last!

Katie finally had some success in the poop department this morning, but not before suffering one final consequence of not going for so long. She tried to eat breakfast this morning and ended up vomiting because there just wasn't any more room left in her body for the new food. Now she feels better and we expect more results as the day goes on. This, of course, means that she gets to have her next dose of chemotherapy. So we can expect that today as well. In addition, she will be getting a red blood transfusion this morning and she could be due for a platelet transfusion tomorrow. The doctors don't believe that her numbers have hit rock bottom yet, but she should bottom out in the next day or two. School starts Tuesday. At this rate and if we are lucky, we will bring Katie home Monday night - just in time to get up and go to work Tuesday morning. This is not how I envisioned the last week of summer vacation. Amy and I have a long list of "just before school" projects that are not going to get done which is going to get everything off to a bumpy start.

Quick Update

Not much new to report tonight. Katie was feeling pretty good today and she got out of her room to play several times. She rode on wheeled toys. She climbed on things. She through balls everywhere. She played, she smiled and she laughed. But, she didn't poop and that is what we are all waiting for now. It has been since Sunday.

Her next dose of chemotherapy includes a drug that causes constipation so the doctors are still holding off on it, trying not to compound the problem, but it has to be given within the next 24-48 hours. Hopefully her body starts working correctly again before we have to introduce more problems.

Her blood cell counts still seem to be dropping. Her ANC slowed down and she only dropped from 30 to 10 today, but her red blood count is back down to just 7.2 and her platelets are also down. Amy found new petechia on Katie tonight. Nobody has even mentioned a date for returning home. We will just have to wait and see what tomorrow brings.

Still Waiting...

Joshua and I have returned to Fletcher Allen; thanks to Grandma, our tummies are full and we are well rested. We dug a dinosaur out of clay and ran to Barnes and Noble for Magic Tree House stories. We are in good shape, and I am ready to trade with Rick, who has been hanging out with Katie.

Katie is doing well. Her ANC continues to drop (grrr...), but she did get out to the play room for some fun. She was happy to see Dr. Homans this morning. Con artist that she is, she came away from their meeting with a LiveStrong bracelet and a Fletcher Allen flashlight. Dr. Bradeen will be very happy that Katie has her own flashlight now; these little mini lights are typically linked to the doctors' identification badges, which circle their necks, so Katie's ongoing interest in checking for sores in her own mouth has meant some serious bending on Dr. Bradeen's part. This should make it easier for everybody! Katie continues to take an active interest in all the medical tasks her doctors and nurses perform. She knows how to run the gadget that measures her blood pressure, for instance, and she likes the oxygen sensor. We'll have to see what this means many years from now as she prepares for college!

We're still waiting on a poop, but her belly is very noisy, so the doctors have elected to continue with Katie's treatment today. She will have chemo this afternoon, just one day late, and this will allow us to remain on schedule for next week. We are so close...We are eager to come home, but we know that this is in service of our long term objective: We will move to Maintenance next week! This, at least, is good news.

Good morning

Katie continues to feel well. She has had a lot of fun this morning. We continue to enjoy surprises from kind and thoughtful people. One of her nurses, who knows that Katie likes waffles, brought her a Belgian waffle from the third floor cafe before heading home to her own family. That was a great treat. Katie also had a surprise visit from our much beloved pediatrician, Dr. Bannach. She was in town and stopped in to check on us. Katie was very happy to see her and loves the bright necklace Dr. Bannach brought as a gift. I painted her toenails this morning--she has some red toes and some pink toes!--and she has been coloring nonstop. She received a backpack full of school supplies from the Clinic's social worker last week, and it is her current favorite item; she has been cranking out pictures, and we spend a lot of time washing marker off her arms and legs. Joshua and Rick arrived just a few minutes ago with a box of doughnuts, so she is celebrating in grand style. She is fine. Really.

We are in a holding pattern now. Katie's fever has gone, but she cannot have today's scheduled treatment until she blesses us with a poop. We cannot go home until her immune system has repaired itself. So we are waiting. We don't have to be back at work until next week, though, so we can all be here together, and that makes this hospital stay much easier on all of us. It has also been good to spend time with my parents and with Ryan and Heather. So while we are eager to return to the Kingdom, we are doing what we can to enjoy this time and to keep each other grounded and happy. We'll let you know when we hear anything. Take care.

Feeling Better After Blood

As Katie got her transfusion today, the life came back into her. She had been lying in bed wanting to do nothing but watch tv. She didn't even want to sit up straight. After the blood had been flowing for about 20 minutes, she was standing on my lap, bouncing around making me work to keep her safe. Her foot seems to be feeling better. She didn't complain of any pain while she was standing and didn't seem to prefer one foot over the other. Her legs were a little weak though and they were shaking with the effort to play.

Her appetite was pretty good too. She ate breakfast and lunch well and treated dinner as an extended snack opportunity. I wish things all the food that is going in would start to come out the other end soon. She hasn't had a bowel movement since Sunday and things are getting a little desparate on that end.

Josh had another good day playing with his cousin. I think I'll take him over to visit his grandparents tomorrow and give my brother and sister-in-law a break from us for a while. Besides, Josh's grandparents have seen him for a total of about 15 minutes so far this week and we have been in Burlington since Monday night.

Blood, Glorious Blood

Good morning, everybody. Some surprising news: Katie's red cell count was very low this morning (it was pretty good yesterday--we thought we were out of the woods), so the nurses ran Katie's tests a second time and confirmed that she needs some red blood cells. We've given her Tylenol (always a part of the process); we are simply awaiting the arrival of her brand new blood. (The power of the blood donor...) Katie caught up on sleep last night--always a plus--but she feels pretty crummy, so we are looking forward to the boost she gets from blood. She is eating well and appears relatively healthy when she isn't miserable, so we're still hoping that her recent fevers are the result of her medications (Ara C and cytarabine are both possible culprits) and that we can rule out infection. Unfortunately, her ANC has dropped to 30, and we won't be allowed to go home until that figure improves.

The doctors have already scheduled tomorrow's treatment as an inpatient procedure; it's good, at least, that we can continue with treatment and get that done. Katie is two weeks from the end of Delayed Intensification--we are almost there. She will celebrate her birthday next Wednesday. She gets the best present of all this year: For her third birthday, Katie gets the one last treatment of the Delayed Intensification cycle and a pass to Maintenance. While Maintenance is two years long (2 years!), she will have most of her meds at home and should be able to resume normal activities. She has just this one last hurdle.

For the record, we remain grateful for all that Katie's doctors have done to care for her body and to nurture her spirit. They are so good. We are very fortunate to have had so much help. Thanks to Heather and Ryan for caring for Joshua. Thanks to my mom and dad for a badly needed respite yesterday afternoon. We're getting there. Many thanks to all of you for carrying us across the threshold.

Business as Usual

We are now in a holding pattern. Katie felt fine this morning and then as the day wore on her temperature, breathing rate and heart rate all rose while her blood pressure dropped. By 4pm this afternoon she reached 101.5 and felt pretty bad. The nurse gave her some Tylenol at that point. That brought everything back under control and she is now feeling fine again. She is talking, sitting up and eating.

I am back at my brother's house tonight and Josh and Kyler are getting ready to spend the night in a tent setup on the floor. They are both extremely excited. Of course we also wound them up a little by going to Pizza Put for dinner and playing a couple of rounds of Laser Tag. Now I have to sit down and get some college work done. This also happens to be the last week of a course that I am taking and I have some work due Wednesday night and again Sunday night.

Back in The Hospital

Katie's fever came back yesterday afternoon and spiked at 101.5 last night. Given her previously low ANC, we were pretty sure that this would mean that Katie would be staying in the hospital at least over night. We had already had too many late nights so we tried to avoid the middle of the night transfer to Fletcher Allen from North Country by ambulance. Instead, we drove straight to Fletcher Allen where she was assessed by the emergency room staff and then admitted to Baird 5 again. Her temperature had come back down again by the time we got to the hospital, but her ANC was hovering around 130 and her platelets were low enough to require a transfusion.

I spent the night with Josh at my brother's house. We left the hospital just after Katie was moved into her room on Baird 5. When we left, she was comfortable and getting ready to go to sleep. Now, I'm heading back to the hospital and leaving Josh here with by brother's family.

A Little Sick and Then OK

Last night didn't go as smoothly as possible, but it could have been much worse. Katie ended up vomiting in bed at around 10pm last night, but that was the only time she got sick. She slept through the rest of the night very well. This morning, she is feeling ok but tired. Spending a late night in the hospital really tired her out. We will spend the day relaxing and recovering and I will try to get some work done on a web site at the same time.

The Trip Ended Unexpectedly

We came home early from Boston after spending far too much of last night in another hospital. Katie spiked a fever just after dinner and we ended up in the emergency room of Massachusetts General Hospital until almost 2 o'clock this morning. However, before that all started we had a lot of fun.

We got on the road early in the morning and headed for Boston. The trip was uneventful and relatively quick. We dropped our car off at the hotel and quickly jumped onto the nearest subway without bothering to check in. We were running late. Josh and Katie love trains and subways and they had a great time riding the subway and switching trains at the stations. A short walk from our last subway stop put us right at Fenway Park where the kids desperately wanted to sample the ball park food. We settled into our seats fully prepared with four hotdogs, a couple of drinks to share between us, and a pretzel that Josh decided that he needed with his hotdog. We were there for a double header, but the first game lasted twelve innings and that was about all that the kids could take, so we headed out after the first game. We walked around a little bit and then headed for the subway again. It was after four and we were starting to feel the need for something to eat other than a hotdog. We had previously decided on sea food, so we headed back toward the hotel where we knew we would find a Legal Seafood nearby. Katie was just about asleep by the time we arrived, but she hadn't eaten in a few hours and we didn't want her blood sugar to drop if she fell asleep so we went right into the restaurant and ordered our food. She fell asleep before it arrived... She did manage to wake up part-way through dinner and have a little something to eat. It was enough to make us happy, so we decided to head back to the hotel for an after dinner siesta and then go back out on the town later in the evening.

It didn't quite happen that way. When we got back to the hotel and I picked Katie up out of her stroller, I noticed that she was warmer than usual. And of course, we forgot to bring along our thermometer. Amy headed went to the closest store to get one, the closest store required a subway ride, and when she returned we discovered that Katie's temperature was 101.9. 101 is the trigger for an immediate trip to the emergency room. We were pretty distraught to discover that she had a fever, but there wasn't much we could do about it other than call Fletcher Allen and speak to her doctors. So that is what we did. We made arrangements with Katie's doctor to call Mass General ahead of us and fill them in on Katie's history and then we loaded her back onto the subway and headed to the hospital. By this time, it was 8pm, bedtime. She never gets a fever in the morning when sleep deprivation wouldn't be an issue. It's always at night. Anyway, a fever with a high enough ANC wouldn't be a big problem, but we knew her ANC would be dropping and we weren't sure how much wiggle room we had. As it turns out, we didn't have much wiggle room at all. Her ANC last night was just 504. Anything less than 500 and we would still be there. Just this past Thursday her ANC had been 1270. We thought she was in better shape than she actually was and we put her in a precarious position because of it. Below 500, she isn't allowed to be around a lot of people or in strange places and we had her on a standing room only subway full of people headed to Fenway Park!

The tests at the hospital took a while, and then antibiotics were delivered through her port just in case and then we were finally allowed to leave. We finally got back to our hotel around 2am this morning and we all just collapsed into bed. When we got up this morning, we scrapped the rest of our plans, loaded everything back into the car and came home. I am disappointed that we didn't get to take the kids to the aquarium and the children’s' museum and the duck boat tours that we were planning on today, but at least they both got to go to Fenway Park for the first time and see a baseball game and have a whole slew of other experiences that they don't usually get to have. We all had fun doing the thing we got to do and now Amy and I are both relieved to be home where we know Katie is a little safer and her team of doctors is a little closer.

We're Out of Here

Everything is fine this morning. Our plans are still intact. We're leaving now. Bye.

To Boston!

So it's a little last minute, but we decided to take Katie and Josh to Boston tomorrow for a baseball game at Fenway Park. Some friends of ours gave us four tickets that they won as part of a promotional give-away and we are taking them up on their offer. We are headed out in the morning with plans to be in Boston just before game time. Then, we also booked a hotel for the night so that we can take the kids to some of the other attractions on Sunday. Josh is pushing hard for the aquarium that he remembers from last time. Katie doesn't seem to remember her last trip so she isn't asking for anything specific but she is excited.

For news a little closer to home, the flooring is coming along. It was slow for a while as Larry carefully worked the floor under molding and through doorways, being careful not to crack our old plaster walls. But now one full room and the hallway are done and we have one, square, doorless room left to go and already started. He should finish it tomorrow while we are in Boston. Some areas of this floor have been extremely challenging and I'm glad that Larry was willing to do it. I never would have gotten as much done as he has.

Katie, had a very good day again today. Her numbers are way up so she can have all the visitors that she wants and she can play her heart out. That is just what she did today. Colleen brought her children, Travis and Abby, down to play today and they spent the day playing with every toy in the house. I'm pretty sure that all four kids are worn out. Josh counts as one of the four because this was his last day of 4H camp and they let the kids out at 2 o'clock instead of 4 o'clock. So he was able to spend most of the afternoon playing with Katie, Travis and Abby too.

Great Day Yesterday & Good Again This Morning

According to Amy, Katie had an absolutely spectacular day yesterday. Fletcher Allen was nearly empty because this week is the week that Camp Takumta is open. Camp Takumta is a summer camp for children with, or who have had cancer and many of the children are at camp this week. So Katie got the benefit of everybody's full attention at Fletcher Allen yesterday. Amy said she saw two of Katie's doctors multiple times in a very relaxed fashion, while the child-life specialists there spoiled Katie rotten. After spending many hours at Fletcher Allen, Katie came home yesterday very happy about having gone there.

When she got up this morning, we were able to share more good news with her that came out of yesterday's visit. The enocrinologist was satisfied with Katie's morning blood sugar levels and told us that as long as we feed her first thing in the morning, we won't need to pick her finger every morning when she gets up. So Katie got to start her day today without a finger pick.

One final piece of information that came out of yesterday's trip was news about the pain in Katie's foot. She does have a stress fracture in one of the bones of her foot. It is not bad enough to need a cast or any sort of boot, but she should stay off it. I know that kids on the medications that she is on sometimes get thin, fragile bones but I am surprised at just how fragile they are. The broken bone in her foot is an unfortunate set back that is going to keep her less active than she should be, which is very disappointing.

Morning Sugar Levels

There isn't much news to report this morning other than Katie's blood sugar levels and her general health before heading to Fletcher Allen. Her blood sugar level was 85 this morning, which is the highest reading she has had since we started measuring her levels last week. That could be due to the fact that she had a big past snack at 9 o'clock last night or it could be due to the fact that I just opened a new bottle of test strips and this was the first test with the new strips. Time will tell.

Katie was feeling fine this morning, and after coming to terms with the fact that she couldn't eat breakfast, she headed off to Fletcher Allen in good spirits. I stayed home to work on the floor with Larry. Already the floor is a lot further along than where I left it last night. It took him about 5 minutes to solve the problem that stumped me last night.

ANC Update

Katie's ANC is over 1500, so we are good to go for tomorrow. It was her hemoglobin that turned out to be low at just 7.2. So, she will be getting a transfusion tomorrow. Maybe she will get some of mine or Amy's blood since we both donated in Burlington just a short time ago and we all share the same blood type. All else aside, tomorrow is going to be a long day. With the transfusion and the LP and the infusion, Katie is going to be at Fletcher Allen from 10am until about 5pm. Then she will get some dinner and finally get back home around 8:30pm. Unfortunately, she doesn't think she needs any sleep to get ready for such a long day so she is still awake despite our best efforts to the contrary.

On another note, we started putting down some flooring today. A do-it-yourself job, it is not... Unless you happen to be adept at capentry which I am not. Larry, my cousin and carpenter for this job, helped me get one room all ready to go and get a few pieces of laminate flooring laid down so that I knew how it went together, then he had to leave for a meeting. I, thinking it would be a snap and the hardest part would be trimming around the door jambs, jumped right to work. I expected to lay in four or five rows, navigating around a couple of door jams until I got to the edge of the hallway and then I would stop. The hallway sounded a little too difficult to tackle on my own since Larry mentioned something about chalk lines and the grain of the wood following the hall. Well, after he left, I worked for about four hours, put in a whopping two pieces and cursed far more than just two times. In my own defense, I did cut one hole for a register and trim around 1 complete doorway and half of another. That was what was required to finish the one row that Larry had started as a demonstration. I could not for the life of me get the second row even started. It just wouldn't "snap" into the first row. It seems to have something to do with how straight I ran the first row, but the walls in this old house aren't straight, so I'm not sure what I need to do to fix this. I sure am glad Larry is coming back tomorrow!