Saturday, May 31, 2008

Katie Climbing and Dancing

video I just had to upload this video after watching her dance around all morning and climb the stair 5 times already today. She doesn't go back down the stairs yet, but it sure is nice to see her climbing up again.

Friday Afternoon


Yesterday after school our family headed out to hike our favorite local mountain - Wheeler Mountain. Katie rode along in her back pack and Josh ran in front. The bugs tried to carry us up the mountain, but we were all wearing enough bug repellant to keep them from biting us. It was a beautiful day for a hike. The temperatures were just right, everything was a vibrant green and the views were spectacular. It is nice to get out on days when Katie is feeling good. Today, if the rain lets up, we are going to take her to the carnival.
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Thursday, May 29, 2008

Funny and Feisty

Katie Grace and I have returned from our adventures in Burlington. We spent two days in the infusion bay, and Katie trooped along through the challenges with her customary spunk and sass. We had a good time, oddly enough, and there were some very funny moments. Dr. Bradeen was surprised to find that Katie had turned the hospital bed into a slide, for instance, and Katie used a sponge and some acrylic paints to decorate her own crown. We also discovered a new restaurant that any Carb Queen would truly love--Nothing but Noodles--and Katie gobbled her way through enough starch to feed an army. We stayed with my parents, so we had opportunities to meet new dogs, to play on the swings and to watch television. ("Good night, Sproutlets!") After a very early start (Katie was raring to go shortly after five o'clock this morning) and a mid-morning snack of pickles and hotdogs, we returned to Fletcher Allen for day two. Katie is clever enough to have picked up on the routine, and she knew the return visit meant two painful intramuscular injections, so her spirits were suppressed temporarily, but she rallied and went about playing kitchen. She was happy to see all the nurses and to chat with Monica and with Heidi, but she lit up completely when Dr. Homans entered. "Grandpa Homans! You're here!" she shrieked while sprinting across the room. "I love you," she continued. When Dr. Homans returned her affectionate greeting, Katie just dissolved into smiles. "He loves me, Mom! He really loves me!" What a character. She is totally smitten.

Our day continued with a visit to Toys R Us (always good) for a new Dora dvd. Joshua had already placed his order--he wanted a new Transformer, and we were able to find just exactly what he wanted--but Katie helped me select a few items for Auntie Heather's new baby, and that was fun. Then we talked Auntie Heather and Eric into playing hooky with us. We stole Eric out of school for a bit and ran to McDonalds for more french fries. Katie was talking about the robin's nest under Auntie Heather's deck when she fell asleep. Construction in Johnson cut her nap short, but Katie continued to chirp along happily. We caught the last ten minutes of the St. Paul's softball game, and Katie was very happy to see both her brother and his (her?) buddies. "I want to play," she said, "next year." I don't think she realizes that the "kids" on this team are all at least ten years old.

This brings me to one of Katie's distinguishing characteristics. In the early days of her diagnosis, everything changed. I knew, deep in my darkest heart, that Katie would survive. I couldn't picture a "normal" life for her, though. It was hard to imagine her playing soccer or taking the bus to school. Katie still loves to tell me about the school buses we pass, though, and she passed a soccer ball back and forth with Olivia Tuesday afternoon. She knows that something about her situation isn't typical, but her expectations of herself haven't changed a bit. She will play soccer in Glover this summer. She is learning to ride a scooter. She loves art projects and music and dancing. She is a very normal kid with a surprisingly normal life.

Joshua was very glad to have her home this afternoon. They bickered happily in the tub, fighting about whose bubbles were whose. Life is good.

Monday, May 26, 2008

Joy

I have been reading a book that I really like by Dr. Rachel Remen, a therapist who works with cancer patients. In Kitchen Table Wisdom: Stories That Heal, she talks about lessons she has learned from people with life-threatening illnesses. In one chapter she talks about the difference between happiness and joy--a distinction that I hadn't ever made. In her mind, happiness is vulnerable because it is temporary. Something could always come along to ruin the moment. Joy, on the other hand, is not the result of an experience but a way of approaching the world; Dr. Remen describes joy as the experience of jumping into the world with two feet, fully engaged and ready to participate, not holding back.

This is my Katie. She is full steam ahead these days, whether she feels good or not. She isn't simply bossy. She is really bossy. She doesn't giggle politely with one hand covering her mouth. She laughs, mouth wide open and eyes shining. She doesn't whisper. She shrieks. Forget manners and expectations. This is no shrinking violet. This is not a child who fears the spotlight. Katie will have your complete attention whether you want to give it to her or not. She is demanding and amazing all at once, charming and lively and voracious. She is on a tear.

All of this is simply to say that I am trying to learn a valuable lesson from my children. The dishes can wait. There are parades to attend. We had ice cream for lunch today. We spend a lot of time dancing. I will have time to worry another day. I need to leave room for joy, for celebration and for play.

For the record, Katie's health isn't perfect. But she doesn't care. She is too busy playing.

Sunday, May 25, 2008

Enjoying The Long Weekend

It looks like we may be enjoying the long weekend too much since we have both forgotten to add anything to the blog in the last two days. Once school let out Friday, we all broke out of our day to day routine and turned our attentions to all the things we have been meaning to do but couldn't find the time. For Amy that means our lawn and flower beds have never looked better. For me that means I've either had my nose buried in my computer for hours on end, getting back to some of my web design finally, or I have been at the barn working with my horses and selling hay. Josh and Katie have been playing hard and staying up late.

Katie has felt pretty well for the most part, but nausea is a bit more of a problem this week than it was last week. She has only vomited once though, so it's not too bad. She did have an odd spell on Saturday as she was sitting at the table. Suddenly she cried out for help because she thought she was about to fall. She thought the table was spinning... That's a new one for us. The doctor thinks that it may have been dehydration since Katie had had diarrhea for a couple of days. We have been pushing lots of fluids and plenty of naps and haven't had another dizzy spell, so maybe that was it. She has also been getting a lot of exercise these last couple of days. She is walking all around the house. She is dancing to every tune she hears. She is bouncing on the trampoline, with help and without her feet leaving the trampoline. She is really just having fun and being a kid.

She went to a play today, "Joseph and the Technicolor Dream Coat", and she absolutely loved it. She says she wants to be on stage in a play. Josh enjoyed the play too, but he says there is no way his is ever getting on stage. I'm a bit like Josh except I didn't even want to sit and watch a play. While the family was at the play, I was at the barn, taking a break from the computer and working with the horses. Our Standard Bred is now willingly pulling a cart using a make-shift harness. Our Belgian still wants nothing to do with a cart. I guess I'll have to get a real harness for the Standard Bred.

Before the play, Josh had spent the early part of his weekend with his grandparents in Newport. His cousin Kyler came to visit and stay in Newport so Josh went there to keep him company and give him someone to play with. They talked their grandparents into buying them some toys at the store. They went fishing and both of them caught fish. They played outside, running all over the property my parents own at the end of a dead end road. He had fun, and he should sleep well tonight.

Right now, we are all headed back up to the barn to meet the person who is buying the rest of my hay from last year. For those of you who don't know about or haven't tried CraigsList, it is worth looking into. I posted my hay for sale on Thursday afternoon and by Saturday, I already had 20 bails sold with a promise to pick up the remaining 130 Sunday. It didn't cost me anything to post an add and I didn't have to sign up for an account. This was my first time checking it out, but it won't be my last. The address is http://www.craigslist.com

Thursday, May 22, 2008

So Tired...So Happy to Have a Long Weekend

The kids were both in bed with us by 5:00 this morning, and Rick jumped ship. He rested comfortably in Joshua's room while I got up with Katie, who was "so hungry." Her attitude toward food is consistently erratic. It was very strange (and not altogether pleasant) to find myself cooking Hamburger Helper at 5:30 in the morning. I had awful flashbacks in which I remembered, so clearly, the catastrophe that was our experiment with steroids. You can add cheeseburger macaroni to the list of foods I don't ever need to see again. I am dreading the return of steroids...

We did manage to have a real family dinner tonight, and it was good for all of us to have some together. The kids ate like pigs, we played with the scooters, and we went up to the barn for a visit. Did we tell you about Katie's new scooter? It has a wide base, so she can build strength by standing on it and managing her balance while we push for her. The physical therapist approves of activities that require Katie to stand or walk, and this fits the bill, so I returned to the Pick and Shovel to pick it up on Tuesday. Joshua likes the new scooter, too. It is good practice for him in preparation for the Razor scooter he has but isn't ready for just yet. He is learning to ride a bike with training wheels and has made a lot of progress. He loves his cousin Eric's old bike. I can foresee the day that he will want me to take the training wheels off. He is growing up so fast.

Both Joshua and Katie will enjoy a visit with their cousin Kyler tomorrow. They don't know this bit of good news yet, but they will be very happy to discover that he is traveling to the Kingdom for the weekend. We are all very happy that this is a long weekend. The late nights and the extra commitments are catching up with us. I am simply looking forward to spending some time with the kids. I just want to be home long enough to get something done. I plan to really enjoy the extra day. I suspect the kids will enjoy it, too. Happy Weekend to all of you.

More details

Sorry about the short post last night, but 2am on a work night is my limit. Katie really did have a good day yesterday hanging out with her grandparents at home while the rest of us went to school. She was full of energy in the morning and had a nice two and a half hour nap in the afternoon to keep her going into the evening. When we got home from school she was swinging with her grandparents. Each person had his or her own swing and they all looked very happy and content.

Shortly after we arrived at home, Katie's physical therapist arrived for a check up and was very pleased with the progress Katie has made in the last week. She is walking much more often on her own now and even dancing and spinning as long as she is holding on to someone's hand. As long as we can keep her up on her feet like that, her muscles and tendons wont atrophy and tighten, making walking later much more difficult.

Amy and I did not spend much time at home with the kids last night. After the physical therapist left, we made them a quick dinner and had to head right back to school for our Freshmen Step-Up night which is an event for all of next year's incoming freshmen. Katie and Josh didn't mind being left behind too much, because their Nana came to take our place as we headed out. Josh was asleep by the time we got home, and Katie was still wide awake. She persisted until almost 10 o'clock before falling asleep. She then woke up at 5am. Needless to say she is tired this morning and in desperate need of a nap already.

I wish my parents good luck in converting the tired, grumpy little girl I left them with this morning into a rested, happy little girl by this afternoon.

Good Day, But Too Late to Write

Katie had a great day today. She was feeling good. She was well rested and she played a lot. However, I have started trying to do a little web design work on the side again and I just finished for the evening. It is nearly 2am and I am going to bed.

Tuesday, May 20, 2008

Nap Time?

Katie slept all the way home from Burlington yesterday and stayed asleep as Amy transfered her into her own bed and then kept sleeping through the night. In all she got about 12 hours of sleep last night. That set her up for a sleepless day today except for a short nap that should have been much longer. When we got home from school around 3:30, Katie greeted us with happy but tired little red rimmed eyes. She look ready to fall asleep on the spot, but will power kept her moving the rest of the afternoon and evening. She still didn't want to go to bed at 8pm, but rules are rules and she went to bed on time despite her complaints. She was asleep within minutes...

Monday, May 19, 2008

Blankie

Those of you who know Katie well will understand why I have dedicated an entire blog entry to the subject of her blankie. Beverly Herrick, who will always be my Auntie, made Katie a blanket when she was still very small, and this blankie has been Katie's best friend ever since. Katie rubs blankie fibers across her lips when soothing herself. She wraps herself in blankie as she sleeps. We don't go anywhere without this blanket. It is her greatest source of comfort and solace.

The kind people at Fletcher Allen understand how serious Katie is about this blanket. It is typically dirty, and sometimes it smells because Katie does not part with it easily on laundry day, but they respect the deep and abiding love of girl and blanket. Despite the grime, they allow Katie to take blankie along when she is sedated for a procedure; it may be the least sterile item in the room, but my little friend Linus always needs it, so the doctors take blankie along when they have to sedate Katie, and they wrap her in it before she wakes up.

This, for those of you who don't know Katie well, is enough to preface a great discovery: When we reached my parents' house today, we learned that Auntie has made Katie a new blankie just in case tragedy ever befalls the original. Auntie chose the same yarn for Blankie II and she same loose weave pattern that Katie likes; Katie can put her fingers through the holes and cuddle right in. What an amazing gift! Katie was very happy to meet this new blankie, although she continued to drag the original all over Chittenden county today. The difference between the two blankets is astounding. I had forgotten what the original blanket looked like before it weathered three years of continuous abuse. It may take her time to warm up to Blankie II, but I have a feeling that they will be fast friends soon. I am so grateful. I have often wondered what would happen if anything ever happened to blankie. I can easily imagine Blankie II making the trip to pre-K. It isn't hard to picture Katie all wrapped up in it, napping peacefully on her cot. Thank you, Auntie, for knowing. You have given her such great joy.

An Amazing Day

Rick suggested that I post an entry to the blog before the grin left my face, so I am trying to channel the glow here. Katie and I had a wonderful day.

Our trip to Burlington was uneventful. Katie snacked and slept. As I scooped her out of her car seat, she shouted, "Let's go see Shannon!" She was happy--no kidding--to reach the clinic, where she had time to play before our appointment and greeted Dr. Homans with a big smile. She was good for Jess, the nurse who does her vitals, and she enjoyed her time with Shannon. We met with Beth, showed off Katie's walk, played with a surfer toy from the prize box and honestly had a good time at the clinic. Shannon pushed two drugs through Katie's port, instead of letting them drip, and we were out of there. We have never had such a quick trip through the clinic, and the success of our visit carried over into the rest of the day. For the record, Katie can pronounce vincristine very clearly, but her efforts to pronounce methotrexate are hilarious--a crowd pleasing activity.

We have been out on the town a lot lately, and I was afraid that Katie's counts would be dropping, but they continue to be good. She has an ANC of 1210! (It was 10 three weeks ago!) I took this to mean that our social butterfly had permission to go play, and that is what we did. We took Grandma Kathy and Grandpa Heart to lunch with us, and Katie pigged out. She doted on me, and she cozied right up to my parents. She had smiles to spare, and she mingled up a storm. She was the center of attention, and she enjoyed the spotlight. Our trip to Talbots should have been a disaster, but she continued to soak up the love and attention of an ever increasing fan base--people flock to Katie--and played happily with toys. Then we went to the mall, where she filled her face and watched people before helping me choose a treat for Josh. She smiled all day long.

My dad commented on Katie's spirits. He thinks this is the happiest she has been in a long time. I think he's right. Her fuzzy little head, the peculiar gait and the weight loss are the only indications that this is a child with a serious illness. Katie knows something that most of us don't know about how to get the most out of the good days. Suffice it to say, she slept all the way home, stirred just very briefly and is sound asleep in her own room. She is exhausted, but she is tired because she has had a good and busy day that she thorouhly enjoyed. Oddly enough, we had fun today--FUN!

Sunday, May 18, 2008

Too Much of a Good Thing

Katie and Josh both had a long and active weekend with very little down time. We all had lots of fun and spent as little time as possible actually sitting still and recharging our batteries. Therefore, it wasn't much of a surprise when both kids had their own little melt downs at the end of each day. Josh had his yesterday after playing until he couldn't play any more and Katie had hers today at lunch before a short nap and again right at dinner time. Those little bodies need a break now and again, but when the weather is so nice and Katie is feeling so good, it is hard to sit home and just relax. Ah well... back to school and work for Josh and I tomorrow, and back to Fletcher Allen for Katie and Amy. But first, a good night's sleep for all of us.

Saturday, May 17, 2008

Another Gorgeous Day

We all had another nice day today, and we spent a good portion of it outside. Josh had T-ball this morning and then spent the rest of the day playing with the other kids who live nearby. He exhausted himself and was asleep by 7pm.

Katie, on the other hand, took a little nap to recharge her batteries this afternoon. She is still awake watching a movie with us now. Despite her seeming reserve of energy, she walked around quite a bit today. She walks a little more each day now. She isn't really getting any better at walking, but she is getting more confident since she hasn't fallen down for some time now. Plus, we pile on the praise whenever she takes a single step by herself, so she is often quite happy just to show off. We're looking forward to more of the same tomorrow.

Friday, May 16, 2008

I Love This Very Special Little Girl


Okay, so the title of this post is sappy and sentimental, but I mean it. Katie is an incredibly unique, special child with an absolutely beautiful heart. We just returned from another evening at the barn with Nana and Grandpa Jerry. We were there for five hours after school today and during that time, she told me she loved me at least a couple of dozen times and each time was accompanied by at least a hug and often a kiss as well. It is just heart warming to be around her when she is being so loving - which is a great deal of the time.

Katie has learned to really appreciate all the beautiful things around her too. For example, after dinner tonight Katie, Amy and I took a walk out into the pasture with the horses. Josh stayed in the house with his Grandpa and his Nana to watch a movie.

We happened to time our walk perfectly with the sunset and I captured the fuzzy photo posted with this entry with my cell phone because any picture was better than no picture. In the photo, Amy and Katie are just reaching out to give Chief some love and attention while the sun sets in the background. Katie was oohing and awing over the sunset by this time, but it got even better as I lifter her up to set her on Charlie's back when he walked over. She set there running her fingers through his fur, looking up at the pink and orange clouds with wide eyes for a time, then she looked down at me and said "Dad, that sunset is beautiful. I love you." I have to admit, I got a little chocked up at that point but I don't think she noticed. I helped her down off the horse and the three of us continued our walk to the back corner of the pasture and into the woods following horse tracks through the underbrush.

No Bad Cells!

Good news! The results are in, and they are good. The doctors at Johns Hopkins have looked at Katie's bone marrow sample very carefully, and they cannot find any blasts--no bad cells, no nasty leukemia creeping back in, nothing to worry about!

This does not mean that treatment ends or that Katie gets a break. The good doctors at Fletcher Allen will continue the barrage to ensure that Katie remains well and that the cancer does not return. We are not home free yet. We are making progress, though, and this is a good sign. We haven't had a bone marrow test in a long time, so we didn't know what the doctors would discover, and we are incredibly relieved to learn that her marrow is healthy.

Yeah, Katie! With much love for the whole wide world, because I am on cloud nine and a half and just brimming right over, Amy

Friday Morning

I fell asleep last night and forgot to post anything to the blog. I woke up just long enough to shut off the computer and crawl back into bed. However, there wasn't much to report anyway. Katie had a very pleasant day yesterday with nothing unusual or exceptional to report except that she has developed a cough and a runny nose. It doesn't seem to effect her while she is sleeping, but when she is awake she wants a box of tissues close at hand. Hopefully her little body can handle this little cold and it won't become anything to worry about. Her numbers should be high enough still, so I'm not worried yet.

Wednesday, May 14, 2008

Good Energy And No Nausea

Things went a little smoother for Katie today. She didn't suffer from any nausea at all today, and she was perky and energetic while hanging out with her grandparents. Her appetite was good too, and she ate like any other two year old.

In addition to Katie having a good day at home, we received good news from her doctor today as well. Dr. Bradeen called this after noon to tell us that Katie's initial bone marrow and enzyme test results were in. First the bone marrow - Everything looks good after the initial tests. All of her healthy cells are growing back just as they should and there don't appear to be a high number of potential leukemia cells - blasts. Her marrow contained 2% blasts which are hopefully completely normal cells in the early stages of development. The flow cytometry test, which was sent out to John Hopkins will check those individual cells to determine if they are healthy or not. But the fact that the numbers are low, hints that they are perfectly normal.

As for the enzyme test, Katie tested normal there as well. She has all of the enzymes necessary to properly process her chemotherapy drugs and get therm out of her system. The enzyme test results are neither good or bad, just good to have. Knowing that she has certain enzymes allows the doctors to plan her chemotherapy accordingly.

Still Doing Pretty Well

Sorry, we skipped yesterday. Grandpa Jerry came home from his winter get-away in Florida and we visited with him until the only thing on our minds was the thought of crawling into bed and going to sleep. We simply forgot to blog.

However, Katie is still doing pretty well. Her mornings are getting a little rougher and nausea is never very far away, but her afternoons have been full of fun. She is enjoying the warm, sunny weather and getting out to play in her swing and on her trampoline. Granted, she is not jumping around, but she likes sitting and bouncing and that has to count for more exercise than sitting on the couch so we're happy.

No word on the bone marrow test results yet. I'm assuming that no news is good news, but I'm still going to call Fletcher Allen tomorrow just to make sure. Amy thought Katie was looking a little pale tonight and that we might be getting close to needing a transfusion again, but I don't think so because Katie had so much energy. She wasn't sluggish or logy tonight like she often is when she needs blood. I think we will be fine until the end of the week at least and we get her blood tested Sunday anyway just to be sure.

Katie got to bed a little earlier tonight, so I'm hoping that she will have a better start to her day tomorrow. It might be time to try starting the day with a little juice again too just in case her blood sugar is bottoming out in the mornings.

Sunday, May 11, 2008

Running Around

Happy Mother's Day to all of you.

We celebrated in grand style, fitting in as many activities as we could this weekend. Yesterday we got down to business, running to t-ball, packing books at the old Sacred Heart school and working on the basement. Today was a play day. We filled our day with fun and family.

Our day began at Parson's Corner, where we had breakfast with Rick's mother. Katie ate enough potatoes to feed a small nation. Joshua ate an astonishing amount; he can really wipe out pancakes. The kids were both very happy to take their grandparents to the barn for a visit with the horses, and we stayed at the barn to celebrate Mother's Day with Nana. Josh dragged Uncle Sean up to the hay loft for a game that involved a lot of running and noise, while Katie relaxed in her swing. Joshua washed my car while Rick set up the new television. There were adventures for all.

We raced home to meet my parents, who brought Uncle John for a visit, too. This is the first holiday we have spent together in a long time. Katie and my parents helped me weed the blueberry plants. Josh took Uncle John for a walk up to Crystal Lake, where they waded in the water, chased geese and told stories. They had a grand old time and returned to find that my clever husband had built Joshua a tree fort with nothing but wooden pallets and some baling twine. Joshua loves his new fort and spent much of the late afternoon and evening up in the tree. He wore a harness, and Rick supported him on belay, so he was safe--don't worry--and he thoroughly enjoyed swinging from the trees like a monkey. We called it a day after steak and potatoes (life is good), and Katie returned to her swing, full of broccoli and itching to play. Our life isn't perfect, but a day like today comes pretty close.

The unfortunate news is that the medications she took last Thursday and Friday are beginning to affect Miss Kate and that she is struggling along with both nausea and constipation. She got sick tonight, ended up in the tub with Rick and is now curled up next to me in our bed, sound asleep and very content. I am sorry that she got sick, but honestly, this isn't a bad way to end Mother's Day. When Katie really feels bad, I always ask, "What is the most important thing?" "I love you," she dutifully replies. "I love you, my little friend, and that is all that really matters." Happy Mother's Day to one and all. I hope you enjoyed the day.

Saturday, May 10, 2008

Fiddleheads

So it's a strange title for an entry in a blog chronicling the life of a child with Leukemia, but it makes sense because I am eating fiddleheads as I write this entry. At least I think I'm eating fiddleheads. I have never eaten fiddleheads or watched anyone pick, prepare or eat them. But after a little research on the internet, I am fairly confident that I can accurately identify fiddleheads growing in the wild, and tonight I stumbled across some beside the river where we had our dinner. So, Josh and I picked a couple of dozen and brought them home. I just cooked them up and ate about half of them while thinking about what to put in the blog for today. They weren't bad. They were nice and tender like a soft green been but they didn't have the asparagus/mushroom like taste that I had been lead to expect. Maybe I over cooked them. My main concern now is will I still feel good a few hours from now or have I just eaten something I probably shouldn't have. I guess I'll find out.

To tie this back to Katie, it is safe to say that I didn't feed her any of the fiddleheads. I am the only person taking part in that experiment. She is happily eating other, better known food tonight. She nibbled some popcorn chicken earlier along with a little of my chicken sandwich and her mother's fish sandwich. It was a fitting end to what has been an overall pretty good day.

She got outside this morning to watch her brother play t-ball. She spent some time with Josh and I at the barn, shampooing the horses and going for a walk in the woods to try and find a turkey that we could hear calling. She got to take a nice little nap this afternoon while snuggled up next to her dear ole dad and her brother. And finally she got to go out to dinner at the B&W Snack Bar. That is where the popcorn chicken, the chicken sandwich, the fish sandwich and the fiddleheads came from. We had to order and pay for the normal, every day food; but I spied the fiddleheads from my vantage point at the picnic table and we were able to bring home that little experiment free of charge. Katie is now sound asleep and I will let you know how I'm feeling tomorrow. Happy mother's day to all the mothers who read this post Sunday. I wonder if my mom would like me to pick her some fiddleheads tomorrow...

Friday, May 9, 2008

Day 2 - Very Nice

Katie's appointment today was at 8:30am and it was over by 10. We didn't waste any time getting out of the hospital and into a toy store. We were shopping for a new tricycle for Katie so that she could have another opportunity to exercise her legs. Josh's old tricycle is still too big for her - she can't reach the pedals. We tried out every tricycle at Toys-R-Us until we were sure that we had the one that fit her the best. Then we road around the store shopping for a gift to bring home to Josh. We settled on a Transformer that he has been begging for for weeks.

We left the store with our new toys and headed out to lunch even though it was only twenty minutes after eleven. Katie claimed that she was hungry and I don't argue with her when she says she is hungry. We decided to try out the 99 restaurant because neither of us had eaten there before and we were not disappointed. We both ordered a baked scrod with the perfunctory potato and vegetable. Lunch was great and Katie ate very well.

After lunch, we finally hit the road for home and Katie fell asleep before we were even out of Essex. She slept all the way home and woke up just as we entered Barton. We were home in time to surprise Josh at school and pick him up instead of letting him ride the bus. He was ecstatic and couldn't resist showing off his sister to every kid in the kindergarten and any teacher passing by. We spent the rest of the afternoon caring for the horses and playing around in the backyard. Now we are off to bed because tomorrow morning starts early and it is full of activities. Josh has T-ball at 9 and the farrier is scheduled to show up at the barn at 10. I'll have to get to the barn early because I want to brush out and possibly shampoo the horses before the farrier gets there. They have been enjoying the warm weather and rolling around in the dirt, mud and loose hay.

Good night everyone. Oh, and Katie just told me she's hungry...

Thursday, May 8, 2008

Day 1 of 2 Done.

Our first of two days in the Burlington area is over and it went fairly smoothly. The ride here was nice (we're still here). By traveling back and forth so often, I have discovered a new and more scenic route to get to Essex from Cambridge, bypassing the small and tedious towns in between and replacing them with green pastures, and freshly turned over corn fields. Of course the smell of traffic is also replaced by the smell of manure but I'll take that trade any day.

We arrived at Fletcher Allen promptly at 9:30 and just as promptly wondered why we had bothered to get there on time. We didn't see our first doctor until 12:30 and didn't get our first procedure until 1pm. Of course, during this time Katie was hungry and thirsty. She had not been allowed to eat or drink since midnight the night before.

After we got going, things went smoothly and quickly. The LP and bone marrow extraction went smoothly and she woke up from her anesthesia quickly and happily. She then ate a sandwich and some macaroni and cheese while she got her last dose of chemotherapy and then we were out of there and off to spend the evening with Grandpa Art and Grandma Kathy. We were done by 3pm.

We made a quick stop on Church street to do a little shopping for mother's day and now we a hanging out, waiting for the hamburgers and hot dogs to be brought in off the grill. After dinner, we will be headed right to bed because tomorrow morning will start off with an 8:30 appointment for a shot, an hour of monitoring and then we're done. I'll be looking forward to a scenic trip back home.

Wednesday, May 7, 2008

A Productive, Fun Day

Katie and I ended up spending the day together after my parents called us at 5:30 this morning to say my dad wasn't feeling good, had a sore throat, and didn't want to expose Katie. So we started out with a bath and then headed out to do some errands. We went to the bank to make a deposit into Katie's Kids Club account. We went to the hospital to get a little blood drawn for cell counts. We went to the auto parts store for a new multi-meter. And we went out to lunch at Jennifer's in Derby. After that, I brought her home and she napped away the last couple hours of the afternoon while I did a little work cleaning out the winter stuff from the basement to make room for the summer stuff.

Tomorrow, Katie and I head out early for Burlington. We have a long procedure to look forward to and then another one on Friday so we will be spending the night with Art and Kathy. Katie's blood cell count results came in this afternoon and they are impressive. Her ANC is up over 900 now. She has officially recovered from the last round of chemotherapy. That's why we start again tomorrow. Here we go again...

Tuesday, May 6, 2008

Sorry For Skipping a Day

Alas, my days are often filled to overflowing with a long list of things I have to do. Some days, by the time I get to the end of the list, I have forgotten what was on the list in the first place. Yesterday's blog entry was one of those list items that I kept trying to find time for, and finally forgot about. Happily, there were no earth shattering bad reports to deliver or questionable test results to worry about. Katie had a fine day hanging out at home with Grandpa and Grandma Kelley. They are covering for Amy and I this week while we go to school for the first three days of the week. Thursday and Friday, Katie and I will be at Fletcher Allen for her next bone marrow extraction, lumbar puncture and chemotherapy.

Today was similar to yesterday for Katie. She stayed home with my parents and had kind of a lazy day. She didn't feel like doing much walking or swinging in the back yard, but she played quietly in the house, got a stroller tour of the neighborhood, got in a nap and worked a little with her physical therapist. I can't say the physical therapy is going all that well because Katie simply doesn't want to cooperate. She is still not interested in walking for the sake of walking and doesn't want to "play" with the therapist. However, on her own or with Amy and I, she will walk when its convenient, fun and safe. Her walking still bothers us, but it is getting better. She is more confident and more willing to take short walks (approximately 3ft) without prompting.

Both children and both parents for that matter are showing signs of being tired so the focus this evening is on an early bedtime for all. The kids are winding down with a movie right now, and as soon as I'm done writing, I will be reading them stories as they lie in bed and hopefully fall asleep quickly. Josh gets grumpy when he is tired and Katie just slows down and wants to stare off into space. A long night of sleep will do them good.

Sunday, May 4, 2008

Quiet, Lazy Weekend of Fun

As it turns out, we never made it to the hardware store, but we did get to the LIBRARY--a favorite Kelley family destination. Katie was very happy to be out and about. She walked about the library on her tiptoes, sneaking up on Rick and on Susan Guilmette, who forgave Katie all her wiggles. We had to cut our visit to the library short, I'm sorry to say, because Katie was hungry. She has been eating like a pig, so we took her out to lunch at the Parsons Corner, where she ate and ate and ate. (She has an interesting relationship to potatoes. When Laurie asked her what she wanted, she ordered mashed potatoes and home fries. We had to lobby for some scrambled eggs and some ham, all of which she ate.) She woke up hungry after a long nap, during which I spread mulch, and she requested dinner. She is especially partial to Sara McKenny's noodles, and she ate more than I did. She is clearly making up for lost time.

We were very happy to see Joshua this morning. The Kings called about a play date, and off we went. Joshua was happy to share his play date with Katie--he is such a good kid--and Katie was so happy to see other kids. She watched for a while before she was ready to play herself, but she warmed up to the idea during a game of hide and seek during which she got to her feet and tottered about the Kings' house. She snacked her way through their house while Joshua played with Legos. She played happily with Sam and Olivia. She gave Jack a big kiss. it was so exciting, and so comforting, to hear her chirping away cheerfully with people she likes and sees so rarely. Katie's approach to the world has changed considerably. She pauses before leaping in. She is relearning how to make friends, though, and she is remembering how to play.

Suffice it to say, she was asleep five minutes later, and she continues to rest peacefully in a nest Rick built for her in the living room. Joshua is watching a movie in our room. Rick is grading student work. I did get to the blood drive in Glover, but that is the sum total of my productivity today. The house is quiet. We are all quiet. It is so very nice to have a quiet, lazy Sunday. I have missed these cozy days.

I hope that you have all had a quiet, peaceful day, too.

Saturday, May 3, 2008

A Saturday Morning at Home

This morning is like many other Saturday mornings. We started out with a leisurely breakfast and then I started gathering recycling while Amy started doing chores around the house and Katie started watching a movie. Not terribly exciting, but pleasantly normal. So where is Josh? Well, his absence is pretty normal for a Saturday morning as well. He spent the night with Robin. He is always begging to spend Friday nights with her and we give in quite often.

The rest of the day is up in the air. Amy wants to get outside and do some planting. I want to get a little grading done and we both want to get Katie out and about. I think our first stop of the day will be the hardware store. What better place for a toddler to stretch her legs. :)

Friday, May 2, 2008

Further Good News

"Blog, woman. Blog," my husband scolds. He is putting Katie to bed, and I don't expect him to return any time soon. It's a lengthy process involving many stories, and they are just getting started.

I am fighting fatigue myself, but there is very good news to report: Miss Katherine Grace made a trip to the lab for blood tests today, and the results are amazing. She has platelets to spare (123,000!), her hemoglobin is fine (9.9), and her ANC has jumped from 190 to 726. She has not had a neutrophil count this high in a long time.

I called the kind folks at Fletcher Allen today to express our gratitude and to tell them just how well Katie is doing. There is no way to explain just how happy I am to be home with two healthy children. The version of Katie I came home to after work today shares very little in common with the Katie who occupied that hospital bed. The Katie who lives in this house doesn't need to watch television because she is so busy playing. And eating. And laughing. Katie was out back in the swing when we made it home from school, smiling and celebrating our return.

Josh was right about "the happy tears," by the way, and he deserves credit for having inspired them. Katie was laughing last night as she ran between her brother and her dad. "Come to me now, Katie," Josh would cheer, and Katie would lurch in his direction, giggling and reaching out for his hug. It was a tender moment. I was happy to see Katie enjoying herself and using the muscles she needs to develop. Her strength is returning. The real beauty of the moment for me, though, was the joy I saw in Joshua's face as he encouraged his sister to run and celebrated her efforts. Most of the time, I have ordinary children who fight about toys and boss each other around. These were not ordinary children. The love reflected in those two smiling faces was real, and it was powerful. I was so proud of them, so fully in love with them. Joshua can make Katie laugh like no one else can. He is such good medicine for her. I can be hard on Joshua--he is five, and he is relentless--but there is such good in him.

I am a very lucky woman. I don't need a thing for Mother's Day this year.

Home Improvement

Boy am I glad that this little girl is out of the hospital. She is so much more alive when she is home. Katie is animated, motivated and hungry. She spent the day yesterday, smiling, laughing, playing and loving everyone around her. She also spent a good portion of the day eating. She ate everything in site - never much of any one thing, but no food was safe within her sight. This morning has started out much the same. She asked for cereal for breakfast, but in the picture included with this post, she is eating my English muffin and turkey sandwich. She slept through the night peacefully in her own bed and didn't wake up this morning until after her mother and brother had already left for school.

Being home for her is the magic medication that is doing more to improve her mental and physical health than any of the drugs at the hospital. She is more active, more satisfied, and more willing to do the things she needs to do to regain some of the physical capabilities that she lost during her latest round of illness.

We will be going to North Country Hospital this morning to get the blood drawn for her first cell counts since leaving the hospital so that we can hopefully have counts back before the end of the day. Otherwise, if we wait till this afternoon for counts, we won't get the results back until Monday.

Her physical therapist will meet us at home this afternoon and we can begin to work on getting her to walk confidently again. Her muscle control is very shaky right now, and while holding a cup or some food, her arms shake uncontrollably and make it difficult for her to feed herself. Her legs are just as unreliable, but cause more problems for her when they fail. She is afraid of falling down, so she tries not to walk much at all and if she has to walk, she walks the shortest distance possible. The only way to describe her walk is to compare it to a the gait of a person with mild cerebral palsy. This new inability to walk is a direct result of her chemotherapy. The Vincristine that she gets generally causes this side-effect after a while and we have been told that Katie resisted the side-effect for a longer time than normally expected. With Therapy and time, this side-effect will eventually reverse itself, but for now we have to deal with it.

Amy has her own opinions about how beneficial it is for Katie to be home and I am encouraging her to add those at some point today. But just to give you a heads up, Josh said last night that he has caught her crying happy tears several times already while watching Katie interact with Josh and I.

Thursday, May 1, 2008

A Good Morning

videoKatie is have a great morning at home and rather than describing how she looks and feels, I thought I would post a video so that you could see for yourself. Here she is, sitting on my lap in front of my computer, planning her lunch.