Friday, December 26, 2008
Wednesday, December 24, 2008
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.
Thursday, December 18, 2008
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.
Saturday, December 13, 2008
Wednesday, December 10, 2008
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.
Friday, December 5, 2008
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.
Wednesday, December 3, 2008
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.
Saturday, November 22, 2008
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.
Thursday, November 13, 2008
Now she seems to be fine. A little cough is lingering, but nothing like what she was suffering from.
Tuesday, November 4, 2008
Here they are carving up their pumpkins the night before Halloween.
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.
Tuesday, October 14, 2008
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.
Saturday, October 11, 2008
Sunday, October 5, 2008
Saturday, October 4, 2008
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.
Thursday, October 2, 2008
Tuesday, September 30, 2008
Sunday, September 28, 2008
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.
Wednesday, September 24, 2008
Sunday, September 21, 2008
Saturday, September 20, 2008
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
Wednesday, September 17, 2008
Monday, September 15, 2008
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.
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.
Friday, September 12, 2008
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
Wednesday, September 10, 2008
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
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
Saturday, September 6, 2008
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.
Friday, September 5, 2008
Thursday, September 4, 2008
Wednesday, September 3, 2008
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
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
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.
Sunday, August 31, 2008
Friday, August 29, 2008
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.
Thursday, August 28, 2008
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.
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.
Wednesday, August 27, 2008
Tuesday, August 26, 2008
We take her to North Country tomorrow after school for another blood test to determine what comes next. Her current numbers are as follows:
White blood cells, 42
ANC, 100 (down from 160 yesterday)
Monday, August 25, 2008
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.
Sunday, August 24, 2008
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.
Saturday, August 23, 2008
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.
Friday, August 22, 2008
Thursday, August 21, 2008
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.
Wednesday, August 20, 2008
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.
Tuesday, August 19, 2008
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.
Monday, August 18, 2008
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.
Sunday, August 17, 2008
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.
Saturday, August 16, 2008
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.
Friday, August 15, 2008
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.
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.
Thursday, August 14, 2008
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.
Wednesday, August 13, 2008
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.
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.
Tuesday, August 12, 2008
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.
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.
Monday, August 11, 2008
Sunday, August 10, 2008
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.
Saturday, August 9, 2008
Friday, August 8, 2008
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.
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.
Thursday, August 7, 2008
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.
Wednesday, August 6, 2008
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!