Monday, June 30, 2008

Zoo Photos

I hope this doesn't look too much like a family photo album, but here are some photos from today's trip to the Zoo. We were there for 7+ hours and we had a great time The weather was perfect too.

To The Zoo!!!

By now you may have noticed that we are a little better at just doing things on a moments notice than we are a long, thought out and detailed plans. Well, the forecast says that today is going to be nicer than either tomorrow or Wednesday and Katie gets her next dose of chemotherapy on Thursday so we are headed to the zoo. The kids are bathed, covered in sun block, dressed and ready to go. We are headed out the door as soon as I finish writing. I hope you all have as nice a day as we hope to have. I'll post pictures when we get back.

Saturday, June 28, 2008

Montshire

Another couple of days have gone by without me posting anything to the blog, so I thought I should at least write a quick update about what has been happening. Katie, Josh and Amy finally made it to the Montshire museum the other day. I stayed home to work and everyone was happy. I got a lot of work done that had been piling up, and they all had a wonderful time playing and exploring at the museum. They took Josh's friend Jack King with them. The kids learned about pulleys, they played with ramps and levers, and they checked out the turtles. They walked the trails outside the museum, they played in the water, and they ate a quart of strawberries. They were great. Amy was really pleased with their behavior and impressed with the way Katie kept up with "those crazy boys." They played themselves out at the museum and fell fast asleep in the back seat on the way home. The ride to the Montshire was incredibly loud, full of singing and giggling. The ride home was equally quiet.
The following day, Josh and I snuck in a little early morning fishing trip on Crystal Lake. We did some drift fishing and a little trolling and caught numerous small bass. Josh had quite a bit of fun catching fish once he woke up enough to sit up in the boat and hold onto his rod. (I guess the day started a little early for him.) Katie spent the day with Amy, cleaning out closets and doing errands around town. She met new dogs, checked out the neighbors' flowers and filled her little face with blueberries.
Today, we attended a birthday for Travis Percy. Travis is one of Katie's cousins, and he turned three earlier this week. We have had a grand old time. (In fact, we are writing this blog entry on the Percys' computer!) The kids enjoyed the bounce house and ride in the wagon, but a dip in the pool was the real hit of the day. Katie wore her new bathing suit, which is huge, and she paddled her way around in a floating kangaroo. She is eating everything in sight. Larry and Colleen have a portable fire pit, so we are hanging out on the covered porch, warming our toes by the fire that is also cooking our dinner. Life is good. I hope Travis has enjoyed his birthday as much as we have!

PS--We are making the most of this chemo break, and Katie is thriving. She is so happy to have time with other kids. She hasn't had a dose of Zofran (her anti-nausea medication) for two days. She simply feels good. We are ALL happy as a result. It's amazing what a regular old day can do for all our spirits.

Thursday, June 26, 2008

A Check Up And The Echo Center

So we still haven't made it to the Montshire museum even though we have had a couple of pretty nice days in a row. Amy volunteered to spend all of Tuesday helping to paint the new library at St. Paul's elementary school. While she was painting, Josh and Katie and I took some time to fly a rocket and play around the house. We had fun and just did whatever came to mind but we never went too far from home.

Yesterday, Katie had to go back down to Fletcher Allen for a check up. She didn't get any chemotherapy or any medication of any kind. In fact, she didn't even get her blood tested because her counts had been so good last time. The doctors just wanted to see her and interact with her just to be sure that things were going well during this little break from treatment. They were not disappointed. Katie was a very active two-year-old yesterday. She was running and playing and singing - even at the hospital. She sung "You are my sunshine" and the ABC song for everyone in the infusion bay. On top of that she has consistently gained weight over the last two visits. She has gone from 22.3 pounds a couple of weeks ago to 24.2 pounds yesterday. She is feeling good and acting strong and healthy.

We also had another task to accomplish while we were in the Burlington area. Amy was part of a teacher peer review panel that was charged with either granting or denying a teaching license to a prospective educator and that panel met yesterday afternoon in South Burlington. So after Katie's visit to Fletcher Allen, we went to Art and Kathy's house for lunch and then Amy went to her meeting and the rest of us all went to the Echo Center for the afternoon. The Echo Center is a fun, local attraction that the kids always have fun going to and yesterday was no different. Katie and Josh both enjoyed themselves tremendously as the explored all of the activities available at the center.

Today is another beautiful day so far, but as of right now I am stuck inside working at the computer. Hopefully I can't get enough work done to get out of the house with the kids shortly.

Monday, June 23, 2008

Inclement Weather

The Montshire Museum is a combination of indoor and outdoor exhibits. Amy has been there before, but I have not. She really wanted the kids to experience the outdoor exhibits today, but the weather kept holding us back. We put the trip off and put the trip off until finally the morning had worn away and the kids were in need of a nap. We didn't end up going to the museum after all. Maybe tomorrow.

Katie is still in good health and good spirits. She didn't mind not going to the museum. In fact we never told the kids that we were going anyway so they didn't realize they were missing anything and they had fun playing around the house.

Right now Katie is reading "Green Eggs and Ham" to me as I write. She is actually quite good at it. She has memorized large portions of the story and made connections from the words to the pictures so she can open to almost any page and recite that part of the story from memory. But now I must go. It is my turn to read.

Sunday, June 22, 2008

Lazy Sunday

We stayed out later than we should have last night and we all slept in and then just lounged around all day. It proved to be to difficult to leave the benefit dance at the kids' usual bed time of 8pm so we never got home last night until around 10:30. That was enough to tire the kids out, but for some reason Amy and I were both wired and found it difficult to sleep. We made up for it today by not leaving the house except to drive five miles up the hill to let Nana cook us dinner. In fact we are still at Nana's house right now, and the kids are all tucked in for the night. We are taking advantage of the summer vacation and not having to be at work on Monday morning so we are spending the night here. Josh is quite happy and Katie is a little leery of the situation. She doesn't sleep any place but home except for when she is at the hospital. In her two short years of life, she has spent the night away from home a maximum of five times and always with a parent. So she was pretty set on going home this evening. But when she was finally sure that both of her parents were staying too, she agreed to stay and climbed into bed.

Our good luck and her good health continue to hold out. She had a great day today with never a moment of sickness. We are counting on more of the same tomorrow as we try to take a trip to the Montshire museum. If I can remember to bring my camera, I'll post pictures tomorrow.

Benefit Dance Festivities

We had a relatively normal Saturday. Josh had a t-ball game and a play date. I mowed the lawn while Rick did some web design. Katie enjoyed a walk to the pharmacy for ice cream. If Katie had hair, innocent bystanders would not know that we are living with cancer. We had a very typical day--a very good day by our standards. They are days, when Katie feels good, that we almost forget how sick she is and will be this summer.

There are a lot of people working very hard to help us live a relatively normal life: t-ball coaches who forgive us for missing games, friends who leave eggs and cookies and casseroles on the porch, and people who have smoothed the way for us at Lake Region, allowing us to keep the jobs we like so much. People direct conversation away from cancer sometimes so we can take a break from it, or they tell us stories of survivorship that encourage us to just keep moving.

For many families fighting cancer there is one overriding source of panic: money. We have been especially fortunate in this regard. Our friends, relative and neighbors have worked together to ensure that we don't have to think about money. We have enough in our own accounts to cover t-ball fees and to pay for ice cream. Thanks to all of you, we can also afford the "behind the scenes" costs of Katie's care: gas, parking, pharmacy bills, odd food requests and occasional treats or adventures that keep the kids positive. We don't mind the extra time and energy that Katie's care requires. We can do laundry. We can read stories. In some ways, this experience has reorganized our priorities. Thanks to you, we can afford to focus on simply raising our kids.

We want to extend a special thanks to Roxanna Prue and to her crew, who hosted a Benefit Dance and Raffle for Katie last night. Thanks to local businesses that donated raffle prizes and auction items. Thanks to the band, Prue's Blues, for traveling to Vermont and for putting on quite a show. The success of this event effectively guarantees that we won't have to think about money as Katie continues in treatment for two more years. We can worry about, snuggle with and simply enjoy Katie and Joshua. We can parent our kids. There is just no way of conveying just how grateful we are.

On a funny note, I asked Katie about the dance this morning. "Dance, dance, boogie!" she yelled, breaking into her very own dance party. The kids are tired today. They had a good time running, dancing and playing with an ever evolving herd of kids. I couldn't stop watching Katie. It did my heart good to watch her having fun. Katie couldn't walk six weeks ago--she didn't have the strength--but she danced for hours last night. She played musical chairs with the big kids. She played "London Bridge." She made me dance even when there wasn't any music. She had fun--regular, healthy, normal kid fun. She smiled, and laughed and sassed her way through the evening. She is bald, of course, and we have to tailor pants to fit her skimpy little frame, but she wasn't a cancer patient last night. She was a kid who just happens to have cancer, a life-threatening illness that she will beat, one day at a time, with a lot of help from her friends and family.

Friday, June 20, 2008

Fishing

I took Katie and Josh fishing this morning in my canoe. What a time we had! The fish were cooperative. The weather held out for a couple of hours and everybody caught fish. We actually walked to the lake with my canoe on a garden trailer behind us. It looked a little strange, but it worked fine and we didn't have to spend any money on gas to drive the car. I have a small electric trolling motor for my canoe and that can get us around pretty well so we walked to the nearest part of the river and loaded the boat in there. Then we traveled up river into the lake and sat at the outlet fishing for a while. The kids decided to keep the fish that we caught today and cook them for lunch so that is exactly what we did. We came home with six yellow perch and one small-mouth bass. We also caught a bunch of rock bass but we let those go and we let a couple of perch go that were too small to keep. After fishing for a couple of hours, we motored back down the river to where we had left the cart. We loaded the canoe back on and headed back home.

I did skin the fish and cook them up for the kids for lunch. They loved them. All seven fish were gone in under five minutes. There may be more of those trips in our future.

Wednesday, June 18, 2008

Graduation and Good Days




Last night, Josh graduated from Kindergarten. He is thrilled to be going to first grade next year and we are very pleased with his efforts and accomplishments this year. I snapped a few photos at the ceremony last and a couple of them are good enough to share here. Katie was at the ceremony as well and desperately wanted to be sitting up front with her brother and the other "big" kids. She can't wait to start school and be like her brother.

Katie has been feeling great these last couple of days. Today was the first day of summer vacation for her and Josh and I. Amy had to work the rest of the week as part of a special committee, but the rest of us got to stay home, play and get some work done around the house. It feels good to have some of the pressure off and to finally feel like I have time to do all the things I have been putting off. Katie and Josh both enjoyed the new relaxed atmosphere too. They both took three hour long naps today to recover from the late night last night and that let me get all kinds of things done.

Katie is at the beginning of a two week break from her chemotherapy before she starts the next round. The next round is supposed to be rough, so we have been encouraged by her doctors to get our summer activities in now before Katie gets really sick again. So next week may be busy as we try to fit in a trip to Granby Zoo, the Whale's Tale and a couple of museums. We'll have to see just how much we can physically accomplish without wearing her out completely. She wants to go fishing too, but we can probably fit that in while Amy is still at work.

Sunday, June 15, 2008

Father's Day

When Katie is feeling good, it is easy to forget to blog about it. Sorry about that. She had a great day yesterday - better than great really. She had no nausea problems and she ate like a little pig. She ate at least 3 small meals to every meal that I ate. Her energy was good. Her attitude was better.

Today, she seems to be starting off on the same foot. She got up way too early to make Amy happy, but she is looking forward to taking me out to breakfast for father's day. Of course she might just be looking forward to pancakes and bacon from Parson's Corner.

On a different topic, we have gotten many comments from regular blog readers who wrote that they had no idea there was a fund raising motorcycle ride and barbecue for Katie a couple weeks ago. I apologize for not posting that information in the blog in advance of the event. I won't make the same mistake twice.

This coming weekend, on Saturday the 21st of June from 6 to 11pm, there will be a benefit dance for Katie at the Elks club in Derby. Roxanna Prue has been kind and generous enough to organize the dance. Music will be provided by Prue's Blues and ADMISSION IS FREE. How can it be free and still be a fund raiser? Roxanna (Roxy) has been collecting donations from area businesses for about three months now. Those donated items will be raffled off at the dance and I have been told that she has collected some really nice stuff. Donations will also be accepted at the door. If Katie is still feeling good, she will make an appearance at the dance. At this point it looks like Katie will be feeling just fine. See you there.

Friday, June 13, 2008

On The Mend Again

This morning, I have good news to report. Katie is feeling much better today. Her nausea seems to have passed and she is keeping food down. Keeping food down means that her blood sugar levels were okay this morning when tested at North Country Hospital. We still have to push food, but so far, we aren't pushing for every single morsel that enters her mouth. We are now pushing for whole servings of food. She has lost weight and we would like to see her put some of that weight back on. Her pediatrician suggested that Katie's very low body weight is contributing to her low blood sugar problems because if she gets sick and skips a meal, her body doesn't have any fat left to convert to sugar and work with. Fattening her up should improve her ability to handle bouts of nausea in the future.

I never thought I would say this, but I think we could really use the steroids again. I know that they created a ravenous, cranky eating machine the first time around, but she also put on weight while on the steroids. I could happily skip the cranky aspect of the drugs, but I'm looking forward to the fattening up.

For those of you who have children. Do you remember when the doctor would weigh your kid and say that he/she was in a certain percentile. Well, Josh was always in the 90th percentile for his height and weight. Katie has always been small and has historically been in the 10th percentile for height and weight. With her current fat reserves issue, she no longer even registers on the chart for weight, but she is growing a little taller and has now reached the 20th percentile for her height.

Thursday, June 12, 2008

Haunted by Low Blood Sugar

Ok, Katie is home and many of our questions were unanswered. Nobody knows the reason for the development of the sores, but the sores are not all the same. The openings in the skin in her diaper area seem to be splits in the skin with an unknown cause, but they should be treated carefully because of the constant contamination of the area whenever Katie has a bowel movement. The sore on her hand seems to be the site of a reaction to an infection, but the source of the infection is unknown and Katie's ANC is still high enough to fight off infections so the doctors aren't worried about that at the moment. The source of the nausea is also unknown. She may be reacting to her medications or she may have picked up a stomach bug or the Flu.

One thing is for sure, all the vomiting has caused a pretty severe drop in her blood sugar levels and that has the doctors worried and has left Katie feeling pretty bad. We were told to push food at every opportunity whether she is vomiting it back up or not. Her body will absorb something even if it is just a little something. Katie does not want to cooperate with that plan of action and would rather skip food altogether than eat and get sick. We have made it clear to her, as it was made to us, that if she didn't eat, she would end up back in the hospital with the IV tube connected again.

Katie has to go back to the hospital tomorrow morning for a follow up blood test to make sure that her sugar levels are coming back to normal, and if they are not, she will be staying there.

That's all for now. Maybe I'll post one more time before bed if anything changes, but I likely won't post again until tomorrow morning after her blood test.

Quick Update

Katie and Amy went to visit Katie's pediatrician today at 12:30. It is now 2:15 and the only news that I have is that they are still with the doctor. Katie has now has open sores in her diaper area, a blister like wound on her hand, and the insides of her mouth hurt. All of these things appeared yesterday and developed throughout the night while Katie was busy being very sick. We are very anxious to learn what may be causing these problems are hoping that some sort of helpful news will come out of the doctor's visit today. I'll update the blog again when I hear more from Amy.

Late Night Post

So it's 1AM and it might be a little late to post to the blog, but I thought I should leave a quick message. Katie is sick. She has been vomiting since about 9:30 tonight. Unfortunately, she even vomited shortly after taking her anti-nausea medication and we don't know how much her body may have absorbed so we can't give her any more until morning. This is not incredibly new. She has had nausea and vomiting trouble for a few days now, but nothing like tonight. For the past couple of days, after she vomited once, she would be fine for the rest of the night. Not tonight. Right now, Katie and Amy are snuggled up in my bed since Katie's bed was the unfortunate site of the first vomiting incident. I think I'll take the futon for the next few hours and leave them to stretch out and get what sleep they still can. If Katie still feels this sick in the morning, one of us will stay home with her.

Monday, June 9, 2008

Summer

I think it's safe to say that summer has arrived in the north county. (Whatever happened to spring?) Left to their own devices, the kids would revert to some thoroughly wild state. They are testing all the rules. They chafe when they encounter limits. They play and play and play, stopping only long enough for food, most of which they eat on the run (and in our living room, which is a disaster). They are happiest when they are filthy. Our house is wrecked. Grass clippings and sand wander in on their feet. Someone always wants water or a bowl of cereal. Bedtime is a very real battle. (It's not dark yet. It has only been dark for a little while. It has only been dark for an hour or two.) No one wants to tumble out of bed in the morning. Sure signs of summer...We face six remaining days of school, after which I return for three days of in-service training. We are almost there...

We had a whopping lot of fun tonight. The festivities included a visit from Susan Guilmette, who thought our little Dora might like some banana bread, and a last-minute ride out to the golf course, where we launched a rocket. We lost the rocket, of course, but Katie and Josh were happy to be out with their friends, and they took turns driving a golf cart, so that was exciting. (And dangerous.) Tomorrow's schedule includes a t-ball game in Irasburg. Josh plays for the Glover Pirates, and I think he enjoys himself. We're all looking forward to summer soccer.

About summer: People have been asking about Katie's schedule. She continues to troop through the third phase of her treatment (Interim Maintenance), and she is doing very well. The doctors are pleased with her progress, and she is relatively comfortable. Her treatment plan shifts, though, in early July, and this next phase, which is called Delayed Intensification, will not be pleasant. She will have to take steroids again, and she will take some of the same medications that made her so very sick this winter. Her cell counts will drop, and she will need transfusions. She will have to spend some time in isolation. The doctors took time to review her treatment plan with Rick. While this stage is not likely to be fun for anyone, I'm glad we know what to expect.

All this is simply to say that we are trying to fit in as much fun as possible before all heck busts loose again. We are talking about a trip to the zoo. I want to go to the museum of children's picture book art, and the Montshire Museum is calling. Don't worry if you can't find us. We're going to try to fit a summer into two or three short weeks. You're welcome to come with us, of course...Happy Summer, all.

Hi Energy Sunday

Wow! She was feeling good today. She stopped moving only long enough to take a two hour nap. She played hard all day long - running, dancing, sword fighting with Josh and playing with rubber balls. We like days like this. Nothing very special to report. Just an all around good day.

Saturday, June 7, 2008

Friday - Saturday

I forgot to post to the blog last night. It was late when Katie and I got back from Burlington, and then we called Amy just as we were coming into Newport and asked her to meet us at a restaurant for dinner. By the time we got home from dinner, it was after 9 and I fell asleep putting Katie to bed. She had a good day Friday. We had a pleasant ride to Fletcher Allen and she was great for the doctors and nurses the whole time we were there except for when it was time to access her port. For some reason port access has become a traumatic experience for her and she fault valiantly to keep everyone away from her port. However, after she was accessed, she went right back to being cooperative and pleasant. Deaccessing her port was considerably easier despite the fact that it is more painful. She cried a little and she didn't really struggle.
While we were at the hospital, she complained of not feeling good. That was no surprise to me since she hadn't been allowed to eat since midnight the night before and I wasn't able to give her any nausea medication when she woke up that morning. But, blood test showed that she had other reasons to feel bad. After her forced 12 hour fast, her blood sugar levels were very low, so low in fact that the doctors have decided that she shouldn't fast like that again and the next time they need her to fast they are going to bring her into the hospital early and hook her up to an IV for a few hours before her procedure.

Today, Saturday, was another pretty good day for her. She stayed around the house all day except for a brief trip out for Josh's T-ball game but she felt good and she played a lot. She even got outside to play in the sand box and ride her tricycle that we bought her a couple of weeks ago. She was tired tonight when I put her to bed and it didn't take her long to fall asleep. Now that both kids are in bed, I guess it's time for me to start working. I have some programming to do.

Thursday, June 5, 2008

Reunited Friends


Yesterday I wrote that we were going to go to an evening of the arts put on by Josh's school, that Josh would be in the performance, and that we would be taking Katie. Well, we did and we all had fun, but Katie enjoyed herself most of all. She hasn't seen some of her friends since she left day care back in January and last night, one of her favorite little friends attended the show. Camden is also two, maybe three by now and he and Katie used to play together every day until we had to keep her home from day care. They were both very happy to see each other, and Katie spent most of her time either following Camden around as he visited other people in the audience or sitting on Camden's mother's lap. They both look pretty happy in these two pictures.

As for a medical update, we took Katie up to North Country Hospital tonight for lab work and we just got the results. Her numbers are surprisingly good considering that Amy and I were both expecting the lab work to show that she needed a transfusion. Her white blood cells are at 3.5. Her ANC is 2450. Her hemoglobin is 9.1 and her platelets are 277,000. With numbers like that we can't complain. We are left wondering though, why she has seemed weak, tired and cold with a hemoglobin of 9.1. I'll ask about that tomorrow when we are at Fletcher Allen for chemotherapy.

This chemotherapy trip will not be one of the more pleasant quick and painless ones. Amy just pointed out that tomorrow is a hungry day, meaning that Katie won't be allowed to eat anything from midnight tonight until after she has had her lumbar puncture around 1pm tomorrow. That makes for a long day for a little girl.
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Wednesday, June 4, 2008

Day to Day

Katie is still doing reasonably well. She has a little more trouble with nausea each day and she is looking a little more pale, and is feeling a little bit weaker, but overall she is still pretty good. Tomorrow, she get to go to North Country Hospital for a quick blood test at the lab before her trip to Fletcher Allen on Friday. We expect to find out that she needs a red blood transfusion. It was getting near to low last week, so I would expect that by now she would have crossed the line into low and be needing some blood by Friday.

Last night she went to a T-ball game to watch her brother and his team play T-ball in the rain. Tonight, she is going with us to St. Paul's to watch her brother in this year's evening of the arts. And tomorrow night, she is scheduled to hang out with her Nana and Josh while Amy and I go to a retirement dinner being put on for one of the teachers at Lake Region. We keep her schedule pretty full whenever she is feeling good enough to get out and about.

Monday, June 2, 2008

Benefit Ride & Barbecue Video

My aunt Michelle had a video camera at the benefit ride and barbecue the other day. She dropped off the video this evening and I already have a movie encoded and ready for the web. Enjoy. video
Today, Katie had a little trouble with nausea during the day, but this evening she was fine. She romped around the house, went for a walk to the store and stopped along the way to play at the local elementary school playground. She fell asleep to stories in her own bed.

Sunday, June 1, 2008

Benefit Ride & Barbecue

The benefit motorcycle ride and barbecue for Katie was held today at the Newport Center Fire House, and despite ominous weather forecasts, it went off without a hitch. About thirty motorcycles participated in the event, raising approximately $800 to help ease the financial burden of Katie's treatments. My uncle Kim, my aunt Michelle, and my cousins Colleen and Larry all put a lot of time and effort into making this happen. Thank you.

Happily, Katie was healthy and able to attend her own benefit ride and to meet all of her well wishers and benefactors. She loved checking out the motorcycles and fire trucks, playing with the other kids and eating the delicious food. She has been a vicious little mama's girl for several weeks, but she was willing to mingle today, and she went to anyone who wanted some time with her. While ride participants filled up on good food, Katie filled her own tank with love and attention. Joshua ran and played with his cousins. Katie snuggled right in, absorbing care, compassion and good cheer from her extended family.

For the record, the ride brought tears to many eyes. It is unsettling (in a good way) when people we don't even know show up to support our child and to provide for us in this challenge. While the financial support makes life much easier--we can focus on our kids instead of worrying about money--we also appreciate the community's good wishes. Smiling people with words of encouragement lift our spirits and keep us going. People frequently tell us that they are thinking of Katie and that they check up on her progress. It is hard to explain just how valuable this support has been. Small acts of generosity and good will cheer us along; these help us to remain positive and calm. Many thanks to all of you for participating in our journey and for powering us through this difficult period of active treatment. We are profoundly grateful.