Wednesday, December 23, 2009
It just so happens that our insurance company started a new program this year and we received a phone call about that program last night. Katie has been assigned a case manager and been given access to several specialist RNs whom we can reach via phone at any time. Amy spoke to one nurse last night who, as chance would have it, specializes in Asthma. After a long chat about Katie's medical history and current cold symptoms, that nurse told her that Katie's symptoms (the cough) were signs of unmanaged Asthma and not just a cold since she didn't have any other signs of having a cold. She asked about our Asthma control plan - We don't have one. She asked what Katie's latest results were on her peak flow meter - We don't have one. She continued to ask similar questions regarding Katie's Asthma and we continued to answer with similarly unproductive responses. It seems that we don't know enough about asthma, and Katie's numerous oncologists and even her pediatrician have focused on her cancer and its treatment while maintaining a wait and see attitude about her Asthma symptoms. The nurse was unimpressed and made several suggestions to get us started down to path to proactively managing Katie's Asthma.
As a result of last night's conversation, we will be making an appointment with Katie's pediatrician to start the conversation about an Asthma control plan that will include a peak flow meter and possibly a change in dose as well as type of Asthma medication.
Friday, December 11, 2009
With a combination of mouth sores and a cold, Katie stayed home from school today because she was feeling so tired and lethargic. She usually bounces out of bed in the morning, often acting far more awake than either Amy or I are feeling. This morning she wanted to stay in bed and sleep. We gave her an extra half hour and she appeared unconscious at the end of that half hour. It was hard to wake her up again and as we got her dressed and ready for school it became apparent that she wasn't going to be able to make it through the day. Amy called in sick and tucked Katie back into bed.
She got a lot of sleep today and is feeling a little better, but not 100%. I don't think this is over yet. It may be just beginning. With Christmas fast approaching, our goal again this year, just like last year, is to stay out of the hospital and be able to enjoy Christmas at home.
Tuesday, December 8, 2009
This past Friday, she traveled to Fletcher Allen again for another round of chemotherapy. The last few monthly doses haven't had much of an effect on her other than to make her tired and a little ill - nothing that disrupted her activities. This dose of chemo had a more apparent effect. The Vincristine made her feel nauseous for the first time in a long time and she made several trips from her bed to the bathroom last night to get sick. I figured that she would be too tired to go to school today, but she woke up bright and early, ready for another day. She was more ready than Amy and I.
This past Saturday, we bought her her first pair of downhill skis, boots, and bindings. Now that there is snow on the ground she is eager to try them out. If the promised nor'easter hits tonight and we get a snow day tomorrow, we'll have to let her break her skis in in the back yard. Maybe she'll even let her parents sleep in late...
Tuesday, November 17, 2009
Katie and Josh have both had their seasonal flu shot and the first H1N1 shot and we feel very fortunate that they were able to get them. Up to this point at least, those shots have done a fine job of protecting our children from the worst of the worst.
Saturday, October 31, 2009
Katie is feeling much better now. Her cough is gone. Her ear infections have cleared up and the fever has not returned since our evening at the hospital.
Wednesday, October 21, 2009
Katie was up most of the night last night with a barking cough that sounded an awful lot like a case of croup. This morning, she woke up exhausted but feeling a little better. We let her go to school but warned the school about her night and told them to call us immediately if she was tired or sick. She made it through the day just fine.
However, when she finally arrived home after traveling around with her mom after school doing errands, she had a fever. Amy walked through the door carrying her and said “Take her temperature”. The thermometer read 102.8 and we were quickly on the phone with her oncologist, and then on the way to the hospital.
Happily, despite thirty plus minutes and three attempts, at accessing her port, it was determined that there was nothing seriously wrong with Katie. She tested negative for the flu. Her ANC is fine and her other vitals are what they should be. The doctor did find a double ear infection though, and are wondering if that might be what spiked the fever. The doctor said that the infection wasn’t bad enough to treat except for the fact that Katie was running a fever so he would give us some antibiotics to be on the safe side.
Monday, October 12, 2009
Sunday, September 27, 2009
Today the animal population on the farm grew by two more animals. We bought 2 pigs. For a little entertainment, watch the video of us unloading the pigs from the back of our Subaru and into their new home. Josh was the videographer and he did a very good job considering this is his first video. I especially like his commentary.
Tuesday, September 22, 2009
Monday, September 7, 2009
Wednesday, September 2, 2009
Friday, August 21, 2009
Katie rallied after her unfortunate (!) evening Wednesday night, and she enjoyed every minute of her birthday. On her actual birthday, which was Thursday, we had breakfast at the Parson's Corner (aka Eddie's), where Katie binged on potatoes and talked to EVERYONE. Then Katie and I met two other moms and their little girls for a playdate, some lunch and a special treat. We traveled to Greensboro for a special kids' performance of the Craftsbury Chamber Players. The girls danced and played. We got to sit two feet from the cellist and to observe the instrument as she played. Katie was thrilled. She had a wonderful time with her friends, too. We returned for a family barbecue, and Katie enjoyed the attention from her grandparents. She opened lots of presents she really likes. I found her a pink guitar, and she is very excited about it. We spent a lot of time reading her new stories this morning. We were pleasantly surprised by her energy level throughout the day; she didn't get much sleep Wednesday night, but she romped and played all day long, smiling and happy.
Thursday, August 20, 2009
Monday, August 10, 2009
The trip to Boston went off without a hitch. In fact, we all had a great deal of fun everywhere we went. We started our Boston trip with a visit to the Public Garden for a swan boat ride followed by lunch in Beacon Hill within walking distance of the Boston Common at a little restaurant named Figs. (The pizzas were absolutely delicious!) We then headed out on a tour of Boston in a Duck Boat. Then we needed a break from the sun and the humidity so we checked into our hotel and headed for the pool. We finished our first day off with a walk around the city at night and with a trip to the Cold Stone Creamery for some ice cream.
The second day included a trip to the New England Aquarium, lunch at Faneuil Hall, an afternoon of playing and exploring at the Children's Museum, and an evening at Revere Beach. With all of that behind us and two tired children in tow, we headed for home to recover and prepare for our trip to two New Hampshire attractions, The Whale's Tale and Santa's Village. (More on that later!) We did not reach home until midnight on the second day of our journey, but we were happy to have squeezed in so much fun.
We all have favorite memories of our trip to Boston. Amy loved the Swan boats inspired by Make Way for Ducklings . I enjoyed the Duck Boat tour (Joshua got to drive a Duck Boat around the harbor!) and our late night walk through the city. Josh was happiest at the aquarium and at the beach, while Katie had her best moments in the Children's Museum. There was something for everyone. It was especially gratifying to tag along after Katie as she took the city by storm. She climbed to the top of a three-story activity structure in the Children's Museum, assisted by Joshua. She ran and played. She asked question after question. She was energetic and enthusiastic, dynamic and funny. Passersby would never have guessed that she is a cancer patient. She looked good, and she had fun--as did we all.
Funny note: If you know our history, you may remember that Katie's last trip to Boston ended in a surprise visit to Massachusetts General Hospital in the middle of the night. Amy went running Wednesday morning and jogged right by; tempting fate, she waved and smiled as she celebrated our good fortune in spending two sunny days in Boston with our beautiful children without medical intervention!
Monday, August 3, 2009
Sunday, August 2, 2009
This last month has gone really well for Katie. She has been feeling great and having a lot of fun. Just look at her bouncing on the trampoline, riding one of our horses with her mom, and raiding fresh spinach from our garden. At the moment, she is one happy kid...
Thursday, July 30, 2009
As summer vacation winds down, we are cramming in more and more activities to make sure that we fit in everything that we wanted to do this summer. These past couple of days have been pretty nice and we put the good weather to good use. We spent one day at Granby Zoo and the following day at the beach. With lots of sun and fun under her belt, Katie finally crashed at the end of the second day. Just minutes after returning from the beach, she fell fast asleep on the couch while waiting for dinner. Eventually, I carried her upstairs to her own bed. She didn't wake up until the next morning.
Friday, July 24, 2009
Saturday, July 11, 2009
Monday, June 22, 2009
This was our first experience of the Relay for Life, but it will not be our last. Katie enjoyed herself thoroughly; we all felt very good about participating. As you can see in the photo at the left, Katie was all decked out. (The hat is hard to read in this photo, but it is a Vermont Children's Hospital hat. It was a gift from the nurses at Fletcher Allen, and Katie loves it!) As we lined up with the Survivors for the Survivors' Lap, I reminded Katie that ALL of the people in purple t-shirts were kicking cancer's butt--our family catchphrase for the sometimes hard work of being brave and getting strong. Katie was thoroughly impressed: "That is so AMAZING, mom!" She was very proud of herself as she walked around the track to meet her dad, and she waved happily to all the bystanders; she was sure they were all cheering for her! It was a very powerful moment, and I happy to be there with her. Given how sick she has been this week, our pediatrician had recommended that we take it easy, but it was hard to do so. Katie wanted to keep walking. She took snack breaks and stopped to mingle, but we are pretty sure that she walked two or three miles. She may be small, but she is powerful, and she just kept on going.
Special thanks to the members of our team. We raised some money, we ate lots of junk food, and we had fun. Some of us were up all night. Many of us walked too many miles. Sincere thanks for your participation. It was fun to do this TOGETHER.
The final snapshot is a picture of our team beginning the walk. Katie, as you can see, is in her element, surrounded by people she knows and loves and looking forward to adventures with people she might get to meet. This is the perfect event for a social butterfly like this one.
It was a relief, for me, to feel like we have started to repay our community for its support. People have been so good to us. It was a pleasure to walk with friends and family. We met new people and spent time with people we don't see very often. We felt like part of our community, and it felt good. There is something compelling about dancing around a track at three o'clock in the morning with people who are uniformly positive. Everyone was in good spirits, and it was a great pleasure to join in. Katie won't object to returning next year. As she said, more than once, "This is a beautiful party."
Thursday, June 18, 2009
Sometimes good things come in small packages. That was the case this morning when our baby chicks arrived at 6:30 AM. Katie and Josh absolutely love them. Just look at the smile on Katie's face. Moments like this make the expense, time, and trouble of raising chickens a worhtwhile endeavor.
Wednesday, June 17, 2009
Katie continues in good spirits. She was very active at the hospital this morning. She cranked out several (thousand) paintings during this short stay, and we logged a lot of miles pushing grocery carts through the hallways at Fletcher Allen. She was eager to mingle and trying to charm. She was very funny. Grandma Kathy brought us lunch, and we packed up. Our stay, this time, was so short that we left on a good note--not desperate to be free but truly appreciative for the help and glad to be on our way. I am sincerely proud of Katie, who took the whole experience in stride this time. She was reasonable and cooperative about the whole thing--pretty grown up, actually.
We stopped at a playground on the way home and let Katie be a kid. It was a beautiful sunny day, and I was content to relax in the shade, breathing deeply and watching Katie zip about, climb and slide. She is not in any pain. She is not struggling to breathe. She is perfectly happy with the new antibiotic, which apparently tastes like gummies.
Life is good.
We will check in with our beloved pediatrician this week, and we return to Burlington for Katie's monthly treatment on Tuesday. Treatment was originally scheduled for Thursday (tomorrow), but we asked for a break so that Katie can participate in the Relay for Life in Newport this weekend. It was starting to look like we might not make it, but we are glad to be home and getting ready for the big day. This will be Katie's first year as a participant in the survivors' walk, and she is really excited about it. (We will be camping out, and the sleeping bag is the big draw, maybe?) Anyway, we have many reasons to count our blessings, and all those laps on the track will give us plenty of time and ample opportunity to celebrate how far we have come. You're welcome to drop in and to share the fun...
Tuesday, June 16, 2009
The initial blood tests yesterday indicated that her ANC was just 420 again, considerably lower than it has been since the last precipitous drop back in January. This morning's blood counts show that her ANC has dropped even further, down to just 280. Her platelet and hemoglobin numbers are also low, although I have forgotten the exact numbers already.
We don't know exactly what we are in for yet, but it is starting to look like Katie may be in the hospital for many more days. On a side note, yesterday, her first day in the hospital, was the first official day of our summer vacation.
Monday, June 15, 2009
Friday, June 12, 2009
Tuesday, June 9, 2009
Oddly enough, she is feeling better today than she was just a few short days ago when her coughing was so bad that she had a hard time sleeping at nigh again.
Saturday, June 6, 2009
We live within walking distance of Crystal Lake and the Barton River so I gave the kids the option of riding their PowerWheels Jeep and ATV to the fishing hole. They jumped at the idea and we quickly strapped the poles and tackle boxes to the vehicles and took off.
While fishing, they also played in quite a bit of dirt. Katie isn't wearing camo face paint, that is dirt mixed with sun screen. Both kids caught fish and I was happy enough just helping them do it. Maybe next time I will catch a fish too.
Tuesday, June 2, 2009
Wednesday, May 27, 2009
Today was the last day of Dex, and most of the other drugs effects should be waring off by now. I can't wait for Katie to return to normal again.
Thursday, May 21, 2009
Normal people might think that Katie is too young to be going to a prom, but when your parents are both high school teachers, there is no such thing as too young.
Katie went to her first prom this year with our high school students. Her date was her mom. Once she found out that the girls got to dress up in very pretty dresses and dance for hours, she just had to go. We captured a few pictures before she left and then a couple more while she was there. She had a great time dancing and reveled in the attention paid to her by "the big kids." A few of the boys very kindly asked her to dance, but she turned them down. She would only slow dance with Amy. At one point she ran into the ladies room ahead of Amy, who was curious about what she would do when left to her own devices. Amy found her lounging on an old-fashioned fainting couch. When asked what she was doing, Katie said, "I'm just chatting with the girls." One of these things is not like the other, but Katie didn't appear to find it odd that she was much smaller (and younger, etc.) than the other girls. Our students were very good to her, and she enjoyed herself tremendously. You should have seen her shaking her booty.
In the event that you are wondering where Josh was, he DID have the opportunity to go along, but the prom didn't appeal to him. :) He continues to thrive. He is currently obsessed with Bakugan, and he is having fun with t-ball. The highlight of his weekend was a visit to a friend's house Sunday. Unfortunately, Katie insisted on tagging along. Fortunately, Josh has gotten used to her social butterfly ways, and he was gracious about her insistence upon joining his play date. She will go to school with all the kids she played with Sunday, so it's good for her to spend time with them. They were all surprisingly good about allowing her to tag along, and she was thrilled.
We are working on our plans for the summer. We're trying to figure out just how much fun we can cram into the time we have without driving ourselves crazy. We're thinking about a few weekend trips. Josh will go to a few different camps. We're getting chickens. We're starting a bigger garden than we have ever had. It all sounds so good that we are having trouble waiting for the school year to end. We are looking forward to some new adventures!
Thursday, April 30, 2009
We had a truly wonderful vacation. Rick and I decided to put the kids first, so the basement is still a catastrophe, but the kids had a very good time--as did we. Our week was full of kids. Cousin Kyler came to visit, as did some of Joshua's pals, and Joshua had his first friend sleep over. They are so grown up... Katie, of course, is desperate to keep up with the big kids. She is such a pesky little sister. Josh typically does a pretty good job of allowing her to share his friends, but Katie also had a play date of her own--her first real visit to a friend's house. She also loved swimming at Lyndon, where we explored the campus. (Both kids are now eager to go to college...yeesh...) We spent a lot of time with our horses, and the kids had opportunities to ride. We also worked on restoring the tipi originally constructed by the Stone Fort Gang on Burton Hill fifteen years ago. The second coming of the Stone Fort Gang only has three members at present, but as you can see, they are very proud of their progress. It was fun to show Uncle Mike pictures of their efforts.
We are all back to school now and trying to finish up the year. While Katie is content to be back at Jeanie's house, where she is truly loved, she is already asking for more "stay home days." It's hard to explain just how valuable those free days really are. Rick and I were so tired when we rolled back into Lake Region Monday, and we are still recuperating. It was a brief reprieve from a schedule that just gets crazier each time I turn around. Katie keeps up better than we do!
Tee-ball is our new adventure. Joshua is playing for the Barton Rays this year, and we had our first practice tonight. He is on a team with some of his best buddies, and he had fun tonight. He was asleep within minutes. Katie was ready to crash, too, as she took advantage of the playground equipment during Joshua's practice. She is increasingly brave and has been taking more physical risks of late. She is so much stronger now. When I remember the skinny little chicken legs she had when she was really sick a year ago, and I look at the muscular limbs she has now, I appreciate the progress she has made. She has come so far, and it is a joy to write that all is, indeed, well. I am so thankful for the opportunities we have to play.
Sunday, April 26, 2009
Saturday, April 25, 2009
Katie just received another dose of chemotherapy this Thursday and seems to be taking this one well too. She did ask for some Zofran yesterday, but today she is feeling fine and is outside running and playing. While we were at the hospital, we asked the doctors about her cough and told them that we had begun experimenting with Katie's inhaler as a method of controlling the cough and it seemed to work - at least a little. The doctors suspect that she is dealing with a slight case of asthma which isn't surprising given her history respiratory issues each winter. We were given an updated prescription for her inhaler and were asked to closely monitor her condition while she was taking monthly allotment of Dexamehtazone for the next 5 days. Dexamehtazone is a steroid that is a normal part of her chemotherapy, but if her cough gets better while she is on it, that may indicate that she is dealing with some asthma and a steroid based inhaler will help her control it more effectively. So if this cough disappears in the next few days, Katie may be issued a new steroid based inhaler that will let her run and play even more than she already does.
So as not to end this post reporting yet another medical complication, and for your viewing pleasure, I also uploaded a short video that was shot Easter morning while Katie ran around outside of my brother's house, collecting Easter eggs with her brother, Josh and her cousins, Kyler and Eric. It is short, but it makes me smile when I watch her running and having fun.
Saturday, March 28, 2009
Wednesday, March 25, 2009
Monday, March 23, 2009
In the last couple of days she has taken a turn for the worst. She developed a nasty cold over the weekend. It is restricting her airway again and making it hard for her to sleep at night. We can easily identify the source of this cold... Every kid in her day care suddenly got sick over the weekend. Unfortunately for Katie, while her body is busy fighting off this cold bug, we are going to give it more things to have to deal with. She has an appointment for another dose of Vincristine and Pentamadine this Thursday at Fletcher Allen. So, by the time she should be recovered from her cold, the Vincristine will be making her nauseous. Her doctors asked us to get a blood test done last night to ensure that her body had the resources to fight back, and it does. Her numbers look really good and all of the right numbers are elevated, indicating that she is fighting the cold. The next 10 to 14 days are just going to be a little extra rough.
Thursday, March 12, 2009
She has been displaying very low levels of energy for the last week and complaining that she doesn't feel good. We suspect that she is having a hard time managing her sugar levels, but have not proved it yet. The doctors told us no to go through the trouble of a finger pick, but to just treat for low sugar. It hasn't been working as well as it should so I am going to test her blood the next time she is feeling low. I want to know how low she is getting and whether or not we are bringing her sugar levels back up high enough for her to feel good for a sustained period of time.
To jump topics a little, Katie is officially enrolled in preschool for next year as of today. Starting this coming August our tiny little girl will be riding the bus with her big brother to meet us at the high school at the end of every day. Josh started out the same way, but he seemed so much bigger...
Friday, March 6, 2009
The only noteworthy events are another round of chemotherapy and an LP that happened last Thursday (everything went smoothly), and the appearance of some new mouth sores as of two days ago. Since the chemo and LP were fairly routine, I will skip right over that and go into more detail about the mouth sores.
She has 4 and we discovered them all at about the same time. The largest sore is on the inside of one cheek. It doesn't seem to bother her too much unless we want to look at it or probe it with a medicine covered Q-tip. Another possibly smaller sore is on the other cheek, but it is tucked up in between her cheek and her top gums. She won't let us get a good look at that one, but she complains so much about pain when we try to move her lip to look that we stop. I have only seen the very edge of it. The remaing two sores are on her upper lip again, just as before. They are small and we are treating them early, but I'm afraid that they may get as bad as the previous round of sores. The doctors want a quick blood test to determine what is happening with the rest of her body as her mouth deals with these sores, so we will be off to North Country hospital for a finger pick tomorrow morning. This evening we already have plans. Katie is going to the dinner theater at Lake Region. She is all excited about going to the play and we are not going to cancel that outing to replace it with a finger pick. That just doesn't seem fair.
Saturday, February 21, 2009
Katie went Ice Fishing today. She has been all excited about going for several days now, and today just she and I went out on Brownington Pond for about an hour and a half. Then we started running into nap time and we had to pack it up and head back home. We didn't catch a thing -- Didn't even get a bite for that matter, but she had fun. Just look at her smiling face in the pictures below.
Friday, February 20, 2009
Katie is a gadget girl, too. She saw her cousin's iPod last week and has been asking for one of her own. (I don't think so!) She is feeling great, so she has been full of it lately. She is determined to grow up so fast. We have taken full advantage of Katie's functioning immune system, and she has thoroughly enjoyed our efforts to provide her with local adventures. (We never blog anymore because we are always out and about, playing in our community.) Katie loves Lake Region basketball games (she is in awe of the cheerleaders and eats her way through the school store), and she has been clamoring for a visit to the library. (The library is showing an American Girl movie tonight. Yeesh...) Both kids enjoyed a visit to the locally famous Pick and Shovel, where the girl in the pet shop allowed them to pet a ferret. Her immune system was suppressed so long, it seems, that even mundane activities like grocery shopping are really exciting. We're not sure where Katie got the social butterfly gene, but we have had a lot of fun observing from a distance as she meets and greets.
On a funny note, Katie decided that she was old enough to wear "makeup." She was upstairs in her room playing with her Leap Pad (or so I thought) while I folded laundry. When I went up to get her--we had dinner with her Nana last night--Katie looked different. She had opened up a tube of chapstick and had turned it into a kind of impromptu blush--like the old fashioned "rouge" my grandmother used to wear. She had great circles of pink chapstick smeared on her cheeks and her thighs. She was sparkly though, too, and it took me a minute to determine why. Katie apparently thought it would be a good idea to take the wand out of her lip gloss and to use the lip gloss as eye shadow. Oh, my. One funny detail/question: I don't wear makeup beyond chapstick, which I always apply to my lips, so we're not sure where Katie would have learned to apply eye shadow? One not so funny detail: Chapstick is really sticky. It was very hard to resist giggles as I washed her off. She was SO sticky and SO cute, and she still smells like vanilla. I am smiling as I type. She is always interesting, my Kate.
Thursday, February 12, 2009
Sunday, February 8, 2009
Katie will go to Grandma Jean's house tomorrow, which brings me to the most important reason for this post: It is Grandma's Jean's birthday tomorrow! Happy birthday, Grandma! I hope that those of you who know Jean will call to wish her well Monday. She and Rick (they are my in laws) have saved our bacon this winter by caring for Katie during the prolonged period of neutropenia, and we look forward to spoiling Grandma a little bit this year. She deserves birthday blessings and a good start to a new year. Happy Birthday, Jeanie Beanie!
Our adventure at the basketball game was a weekend highlight. The gym was packed, and it was loud. Katie was thrilled to be part of the action. She ate popcorn, a lollipop and a cupcake. She stood on the bleachers and screamed for the boys. "Go, Rangers!" We stayed late so she could mingle with people she hasn't seen in months. She collected hugs and well wishes. Her pretty (and curly) new hair was a hit, and she pranced around, allowing everyone to pet it. She ran up and down the bleachers, showing off her balance. She was hoarse when we left the game, but she was smiling, and she was enthusiastic about a visit to our horses, so we kept on going. When we finally returned after a grocery shopping trip, five hours after we originally left the house, I was tired, but Katie was just getting started.
The highlight of our day today was a visit from my parents, who came up for lunch. Katie was dressed as a ballerina when they arrived, and we had been dancing, but she put them to work immediately. "Line up!" she screeched, and we were off to the races, zipping around the "track" on the first floor. You know that the tail is wagging the dog when three fairly bright and independent adults willingly sprint through the dining room in pursuit of a pint sized ballerina. It would be interesting to attach a pedometer to those ballet slippers...Our adventure continued with lunch at the East Side, where Katie continued the binge fest that characterized our weekend and insisted on celebrating the birthday of a woman at a table across the room. Only Katie...While she napped briefly on the way to Newport, that was it today. When I think about all the energy she burned and then I remember that she never really napped, I wonder where it all comes from. And then the incessant demands for food make sense...
Anyway, it was an absolute joy to leave the house this weekend with Katie in tow and to PLAY. A good time was had by all.
Saturday, February 7, 2009
Friday, February 6, 2009
Katie had a great day in Burlington yesterday. She napped all the way there, and by the time we got into the hospital she was full of energy. Normally, she wants to ride in the stroller from the car up to Pediatric Oncology on the fourth floor of Fletcher Allen. Thursday, she walked in like she owned the place. She sang her ABCs in the waiting room and belted them out again as the nurse was taking her blood pressure. She then led the way to the room where her port would be accessed for the blood draw.
We had to wait for a bit before the doctor was available so Katie was allowed to leave the room to visit another 3 year old patient down the hallway. On the way, she decided to show the doctors and nurses what she could do, so she lined up on her own imaginary starting line, counted to 10, yelled "Go!" and took off running down the hall. She proceeded to repeat this process over and over again, running the full length of the hall each time and telling the doctors to cheer and clap for her as she ran by. I lost count of the number of laps that she did, but she ran for more than 10 minutes. Any doctor or nurse who heard this going on and wasn't in the middle of working with a patient, came out to see her run.
From there, I took her to visit her cousins. Because of the nuetropenia, she hasn't seen her cousins since before Christmas. In fact, we still have Christmas presents for them sitting in a closet waiting for both families to get together before opening them.
Hopefully, that good feeling transfered over to day care and she is having a good day there today.
Tuesday, February 3, 2009
Katie woke up Monday morning, ready to go. She got dressed, ate breakfast and brushed her teeth with no problems. But as it got closer and closer to the time we had to leave, she started feeling less and less well. She had been awake for about an hour and she had already burned up most of her energy and her breakfast wasn't sitting well. We dropped her off at day care anyway, but you could tell that her excitement had faded. Not long after, we got a call from day care. Everyone's excitement had faded. Katie was not feeling well, and she was grumpy and uncooperative. The kids wanted to play with her, but she didn't want to play. The day care provider was disappointed and worried. We were saddened. We had all hoped that everything would be okay and her return to day care would be this miraculous return to the life she was living before she got sick again. It didn't happen that way, and we should have known better; but it was easy to hope for the best and believe that it would happen.
Today, she went back to day care, but with more realistic expectations. She knew she wasn't feeling her best. The kids knew that she might not play with them. Her day care provider knew that she might not cooperate or be in the best of moods, and we knew that the triumphant return had been a bit of a let down for all of us. However, with that reality check firmly established, we carried on with our plans and hoped that today would at least be a little better than yesterday. It was.
Katie got through her day just fine. She was a little low on energy and wanted to lay around more than she used to at daycare, but she has been laying around for eight weeks. It is going to take some time to get her energy levels and stamina back up. She was less grumpy today and more cooperative as well. All-in-all, it was a good day. The only down side - one of the other kids shows signs of pink eye but he hasn't seen a doctor yet. Ah the joys of day care.
Sunday, February 1, 2009
Tomorrow, she goes back to daycare. Hopefully she will feel well enough to enjoy it because, even sick, she is still looking forward to seeing her friends.
Thursday, January 29, 2009
So what did she want to do to celebrate the return of her immune system? She wanted to go to a book store. We went to Barns & Noble. She navigated the aisles of books for nearly an hour, picking up this, and thumbing through that, and the entire time, talking to anybody she came across. In the end, she decided to buy nothing, but she insisted that she was happy. She got what she wanted finally and what she wanted was to just be around people.
As it so happens, she requested a very special outfit last night when we were laying out clothes for today. She wanted to wear a beautiful red dress with red tights and shiny black shoes so that she could show it off to everybody at the hospital. She spent the day posing for doctors and nurses and had to take her coat off to pose for perfect strangers in the book store too. She was in her glory and I am glad that I was there to see it.
Tomorrow, she could finally go back to day care to play with other children again. But as luck would have it, her day care is closed tomorrow so she will spend one more day with her grandparents. She has enjoyed spending time with her grandparents, but she is eagerly awaiting Monday morning.
Sunday, January 25, 2009
The remaining test results from Katie's bone marrow are in. There is still no sign of cancer and the tests revealed that her cells are maturing as they should be. To say that information was a relief is an understatement. Further blood tests also indicated that Katie's antibody count was low. Her count was 420 but I foolishly didn't ask what normal counts should be. Her ANC dropped again too. She was just over 500 Monday, but by Thursday she was back down to 220. However, in an effort to boost her immune system and fight off her cold and her virus, she received her first IVIG (Intravenous immunoglobulin) Thursday. We have been asking for Neupogen for some time to help boost Katie's immune system, but we didn't even know another option was available in the form of the IVIG until two days before Katie received it. I can't tell you exactly why one option was chosen over the other option, but I can tell you that I am glad that something was done.
Today, several days after the IVIG, Katie is feeling better. She is currently suffering from Laryngitis, and her swollen voice box is making it difficult to breathe, but she had that problem before we went to Fletcher Allen on Thursday. The doctors checked her over and told me to call if it got worse. It was bad Thursday night and Friday night. I was up a lot those two nights, checking on her to make sure that she was still breathing okay. Luckily, it never quite became bad enough to take her back to the hospital. Last night, she slept better and breathed easier and today it is a little better than that.
We are still fighting the battle to heal her lips but we are winning. I don't know if the IVIG is helping at this point or if the continued heavy use of the Medicated Blistex is working wonders all by itself. Her lips look normal at this point, but if she lets us look under her top lip, a sore is still hiding there. However, this last remaining sore doesn't seem to be causing her any pain and she will let us lift her lip up to apply the Blistex directly to the sore. The remaining sore is not a nasty, white hole surrounded by angry, red flesh any more. It is only slightly off-color and there is no redness surrounding it at all. She even brushed her teeth all by herself tonight before bed, which is quite an accomplishment since teeth brushing has been a real battle these last couple of weeks because of the sores on her lips.
Her spirits have been good and her energy has been great. She played around the house all weekend with her brother - running laps from room to room and climbing stairs and sword fighting in between coloring, painting, and just being a kid. It would have been nice to spend more time with her while she was feeling good this weekend, but I had a lot of work waiting for me and it kept me busy all weekend. She played around me as I sat at my computer for hours on end. Since Friday after work, I created and published a new website for a company that I work for our of St. Johnsbury, and I wrote two college papers for a course that I'm taking as part of my Master's program. I am very pleased with myself for getting that done, but I am sorry that I missed another opportunity to play with my children. Unfortunately, weekends spent working are pretty common place for me when my college is in session. There isn't time to do the work any other time.
Wednesday, January 21, 2009
The bone marrow was extracted at around noon on Monday, and at 2:30 on Tuesday the doctor called me at work with the preliminary results. I am happy to report that when Katie's bone marrow samples from Monday were compared to those just a couple of weeks ago, the doctors were able to observe her cells maturing normally just like they are supposed to. In addition, they did not see any signs of leukemia cells in the sample. I am happy at the news, but I am also trying not to be too excited about it. The bone marrow samples will still undergo sever more tests and be looked at by many more people, and any one of them may report something that I don't want to hear, but for now things look good.
On another positive note, Katie's ANC on Monday had climbed substantially and was at 520. If that number is a sign that she is recovering and not just an abnormally high spike, we will soon be back to something closer to normal.
Tomorrow, Thursday, Katie has to return to Fletcher Allen for a follow-up appointment. We are hoping that more news has come back from the bone marrow and we are hoping that her ANC has climbed even higher. Her infection seems to be almost over, but her lips still look pretty bad. The sores left a lot of damaged tissue and her lips are cracking as they heal - leaving her with blood stained teeth several times each day. Her lips are still sore to the touch and putting any kind of lip balm on them is still a challenge unless she is sleeping. She also has a nasty sounding cough that she managed to pick up from her brother and it wakes her up at night. I think her throat hurts from coughing but it is hard to tell. For now she is sleeping soundly, and when she wakes up in the morning we will be headed back to Burlington.
Friday, January 16, 2009
We think Katie is a champion kid, of course. She is a dress up queen and a dancing fool. She loves art projects and books and dolls. She doesn't let much get in the way of her own personal celebration of childhood. We continue to look for ways to support her efforts, as illustrated by one of my recent Questionable Parenting Decisions (QPDs). I thought I would share thed Naked Soccer story:
Katie has a Nerf soccer ball, and she often plays with it at home. She insisted that we had to bring it to Burlington, and I relented, despite the difficulty of fitting it into my purse, which was already full of all her other favorite goodies. (How many children bring Dora lunch boxes full of Play Doh to the Children's Specialty Center? I would guess that there are a lot of them!) Anyway, after a port access that was nothing short of traumatic--the nurse was great, but Katie just panicked--and a terrible movie (the Barbie version of the Dickens classic A Christmas Carol--yikes), Katie decided that it was time to play soccer. She scampered about the infusion bay clad only in Strawberry Shortcake underpants, pink toenails flashing as she kicked the ball while directing the nurses she had drafted into a very bizarre soccer league. ("You stand by your chair, and Mommy will stay here. I'll be the other part of the triangle.") "Only Katie," I thought. I probably should have dressed her. I probably should have spared the nurses. We were noisy. We were dangerous. We added chaos to the proceedings in the infusion bay. We interrupted traffic in the hall. I let it all go. I let her play. I encouraged her, actually, because she was having fun.
This was probably not my best parenting moment. I should have set some boundaries. Katie will read this story many years from now and wonder why I let her zip around naked in public. I let you cause chaos, Miss Katie, because you were happy, because you relaxed for a few minutes in the midst of a long day, because for once you forgot about your port and ran around with both arms at your sides, laughing and smiling. For the record, it was worth it, and I would do it again. I'm just sorry I didn't get a picture.
Thursday found us in Burlington. Katie had an appointment with Dr. Bradeen and crew at Fletcher Allen, and she met an infectious disease specialist. We hoped he would be able to identify this thing that Katie is fighting. Unfortunately, we still don't know what caused the sores, and her ANC remains very low. The sores on her face have cleared up for the most part but her lips are still quite sore and the focus of a lot of attention. Her energy levels ebb and flow from day to day but that may be based more on how well she sleeps the night before than on anything else. She has a lot of nightmares now, and she wakes up at least once every night crying out about something she is afraid of at the hospital. Last night it was the finger pick.
Another bone marrow extraction has been scheduled for this coming Monday, 1/19/09. The doctors are still edgy about the possible causes of the absence of neutrophils, so they want to compare this next bone marrow sample to the last one to see how things have changed in the last couple of weeks. They also want to send another sample off to John Hopkins for a more detailed inspection, which of course means they are still looking for signs of cancer. The roller coaster emotional ride never seems to end.
To top things off, my mom called school late this afternoon as Amy was working on some grades. Katie had a fever. We went home for an ear thermometer and changes of clothing. We were convinced that the other shoe was about to drop. It was a tense and quiet ride to Newport. As it turns out, the fever was gone by the time we arrived, and Katie provided the clue we needed to determine what had caused her temperature to rise. She told us that she had had a headache and that she and Grandma had fixed it with some juice. Our old friend blood sugar. Grrrr. The good news is that we are home for now and have some time to wrap up grades before making the trip on Monday, which is a vacation day. It is a relief to end the night at home and not in the ER.