One Big Update: Good, Bad, and Ugly

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

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

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

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

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

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

All Better for Halloween

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

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

Corn Maze

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

Hiking & Climbing

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

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

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

Summer Vacation: Part 2

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

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

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

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

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

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

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

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

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

Josh Learned to Ride a Bike

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

Gone Fishing

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














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

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

All is Well

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

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

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

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

No More Mouth Sores

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

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

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

Two Kids Sick!

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

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

Katie With Grandma

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

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

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

Overnight in a Tent

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

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

Too Little Of This

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

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

Evening Update

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

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

Feeling Better After Blood

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

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

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

Back in The Hospital

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

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

Sick In The Night & Josh's Birthday

Well, the nausea kicked in and Katie got sick last night. She started vomiting at around 1:30am and continued to do so with little naps in between until 3am. After which, her belly was completely empty and she fell asleep. I was worried about what her blood sugar levels were going to be like this morning, but the results surprised me. Her blood sugar level was 76.

She is in a great mood this morning and is feeling fine so far. Hopefully, she stay's fine the rest of the day and gets to enjoy her brother's birthday party.

Josh turned six today. He is very exited and happy to be "all grown up" and big now. We let him open a couple of present first thing this morning to help him get through the day until his party starts at 4pm. He is managing to contain himself, but only barely. I asked him this morning if he had heard the rest of us taking care of Katie in the night and he hadn't. He had managed to sleep right through lots of noise and a great many lights. Lucky him.

Now I'm off to finish getting things ready for the birthday part. Amy has already been working feverishly this morning on last minute details and my only responsibilities so far have been cooking breakfast and entertaining the kids. Time for a little more.

The Promised Details

We are finally home 12 hours after leaving the house this morning. It was a long day, but it went well. Katie didn't have any low sugar problems this morning. She woke up in a great mood, ready to face a hungry day. I got a little apple juice into her before the cutoff time for liquids and we headed out. We had to be at Fletcher Allen by 10 so that they could run an IV with glucose for her to keep her blood sugar up while we waited for her actual appointment. By the time the IV was in, her glucose level was 64. Below 60 is considered low for her so we just made it. After an hour of so of the IV her glucose level was 109. We got the rest of her numbers back too, and a couple of them were interesting. For some reason that nobody explained and I didn't ask, her ANC today was only 980. I'm not sure how it could drop by almost half from what it was yesterday afternoon when all of her numbers were on an up-swing and she hadn't had any medications. Hopefully, there was an error counting or reporting her numbers at North Country yesterday and she didn't really drop. Her hemoglobin was down a little too, to a 9.4. However, those numbers were still good enough to allow her to go forward with her treatment schedule.

She hadn't had anything to eat since about 10pm the night before and we were scheduled for a 12pm lumbar puncture (LP), after which she could eat. Our appointment time got pushed back by delays beyond our control and she finally got the LP around 2pm. Needless to say, she was a very hungry little girl but she handled it well. Josh was with us today too, and Josh and I don't eat around Katie when she can't eat. He was more worried about his belly than she was about hers.

I got to bring home a new gadget today as well. We brought home a glucose meter (typically used by diabetics) with which we have to test Katie's blood sugar levels every morning before eating or drinking and every time she shows signs of having a low blood sugar. We are recording the data to try to get a better idea of how her body is handling sugar. This means we get to be the mean people and pick her finger every day for a while. No length of time was specified, but I was given a 50 day supply and a prescription for refills. I get the feeling that this is going to be with us for a while.

Well, she has had her bed time snack and is snuggled in for a well deserved rest right now. I think I'll follow her lead. Tomorrow will bring a new host of challenges.

The Steroids Are In Full Effect

The Dexamethazone has taken over the lovable personality that was Katie Grace and turned her back into a very difficult, argumentative, screaming, crying mess for a good portion of each day. It unfortunately only took three days for the steroid to make its presence felt which is not what we were hoping for since she will be on the steroid for five days at a stretch, once per month for the next two years. We were hoping that by the time, the effects were really being felt, the five days would be up and she could basically continue a relatively normal life. It looks like that will not be the case. On a positive note, this current round of Dexamethazone is only going to be seven days on, seven days off, then seven days on again and we are four days into this first seven days.

Today, we are back in the Burlington area again so that Katie can get another dose of chemotherapy at Fletcher Allen while Josh and I wait for her at my brother's house. She gets the drugs she needs and Josh and I get to visit with my brother and his family for the first time in a few months.

Loose Teeth

Today's post is primarily about Josh because he lost he first two teeth today. He managed to loosen his bottom two front teeth this morning at breakfast when he decided to help himself to a little extra syrup after I had told him that he had enough and left the room. He attempted to open the top of the syrup bottle with his teeth and was shocked and devastated to find that his teeth gave out before the bottle did. It was quite traumatic for him since he had only discovered that his teeth were starting to feel like they could wiggle just a couple of days ago. After his experience with the syrup bottle, he had two really loose teeth and a mouthful of blood. By the end of the day, his grandfather Kelley helped him to wiggle those teeth completely out of his mouth and he now has a classic jack-0-lantern smile. And now for Katie...

She is getting by fairly well, but it is definitely apparent that she has had a dose of chemotherapy that her body is not happy with. She is struggling with being hungry at the same time that she has an upset stomach - so not much food is going in, but she is sampling food constantly. Also, because she doesn't feel quite right, she doesn't want to do much. She wants to be cuddling with a parent or carried by a parent everywhere. She is a little cranky and a little less willing to cooperate than she has been during the last three to four weeks so it looks like our break is over. Its a good thing that we got some of big summer trips done early. We may not get another chance to take her on a big trip away from home again this summer.