Congratulations to Rick's dad, Rick Sr., who completed his last day of paid work today. He has officially retired from the city garage in Newport, and he seems to be very happy about this decision. The van is packed and ready to roll. We wish Rick and Jean a terrific trip to Florida. We are sincerely hoping they will return with some sunshine in a few weeks.
Those of you who teach with us know how significant it is that the fourth quarter has just started. We are in the home stretch. Given that we learned about Katie's illness two days after the third quarter opened, it would be safe to say that this has been a long semester thus far. Rick is posting grades as we speak. I finished mine at school this afternoon. While this is more a basic requirement than a major achievement, I'm proud of us for turning in grades on time. We continue to follow the rhythm of the school year. I have always been in school--literally--and its routines are comforting. I had my post evaluation conference today, and that was fine. I wrote an IPDP so I could renew my license. I'm gearing up to teach a new class next year. I love my job. I have never been so torn between work and family, though, as I have since Katie became sick. She was crying when we left the house this morning, and I felt like a failure. I had such a hard time leaving. I knew that both Katie and my mom would be fine--they had another really great day together--but it was difficult to walk away. I made Rick call home at lunch because I didn't want to hear Katie fussing in the background. I am such a wimp. As it turns out, however, Katie and Grandma were having a grand old time. They watched Dora movies, they read Dora stories, they ate and ate and ate...Katie splurged this morning and treated Grandma to an unsolicited statement of her affection: "I love you, Grandma." Thanks to Grandma Kathy, we can continue to manage the competing demands of our lives even when I am torn in different directions.
We had lots of help from friends at school today, too. They conspired to fill the refrigerator. Katie was interested in the meatloaf, the potato casserole, the stuffed shells and the apple pie, so we heated it all up, and this made for quite a dinner. (Frozen broccoli was my only contribution!) Neither of us has lost any weight, I might add...
Katie continues to find mornings difficult. Her sleep schedule is off by two or three hours, and she generally feels lousy until the Zofran kicks in. Once it takes the edge off her nausea, Katie is in better spirits and ready to play. She is really interested in costumes these days. She wears Dora sandals with socks, and she has a new interest in hats. This makes for some quirky ensembles. Josh is a sharp dressed man on his way out the door in his uniform, but Katie could use some fashion help. While it is hard to imagine that she will ever wear a skirt without lifting it to show off her derriere, I do look forward to sending her out into the world in a uniform, too. If only I could wear a uniform to school...
Peanut Girl has a dry cough that makes sleep difficult, and she is hacking on the keyboard as I type. I'm off to find a solution to this nagging little problem. Good night, all. Thanks for listening.
Monday, March 31, 2008
Sunday, March 30, 2008
A Furry Visitor
The cat's name is Tyson and he belongs to Katie's Nana. She just adores him and requests visits all the time. Every now and then I give in and bring him home. Tonight, I didn't tell her that I was bringing him home, I just showed up with Tyson in my arms. Katie was thrilled. In the picture, Tyson had already been in the house for a couple of hours but Katie was still following him around and hugging and petting him every chance she got.As for her overall health today, Katie was generally fine except for some nausia and a general yucky feeling that kept her from romping and playing like she had been a couple of days ago. Still, this was a pretty good day.
Saturday, March 29, 2008
Feeling the Cytoxan
Katie's cell counts may still be really good at this time, but she is definately feeling the effects of the Cytoxan that has been pumped into her body. She took a little longer to get going this mornig and had a little less energy to sustain her until nap time. She did, however find enough energy to have some fun playing in the homemade tent pictured to the right. The tent is actually her art easel with the futon cover draped over it.She has had a little nausia trouble, despite the Zofran that she had this morning and her appetite is suffering as a result. Food orders have been traditionally huge for a person of her size, but most of the food goes untouched. Luckily, she will drink when we push it so the Cytoxan should be flowing out of her body just like it is supposed to and not hanging around to damage her kidneys.
Friday, March 28, 2008
The Snuggler
Snuggler is an appropriate title for Katie today. She was much less of a commanding presence and much more of a tired little girl after her long day yesterday. We started the day by sleeping in late and then walking down to the local restaurant for breakfast. Katie wanted everything on the menu until breakfast arrived, then she filled her belly with home fries and was happy. We came home after breakfast planning to call a friend and arrange a play date for the morning, but Katie had other plans. She said she was tired and just wanted to snuggle so we curled up on the couch to watch some Dora until she fell asleep. I fell asleep first. After our morning nap, she wasn't feeling as well as she had been earlier, so we just played around the house, but she was never more than five feet away and usually she was in my lap or in my arms. I was the happy recipient of lots of hugs and kisses today.
This evening, after Amy got home and we were in the process of getting Katie ready for bed, we gave Katie her first shot at home. She was not very pleased about the idea, but it was much simpler and less traumatic than going to the doctor's office. She struggled and cried, and I had to hold her down just as firmly as if we were at the doctor's office, but she stopped as soon as we stopped. She didn't like it, but she agreed that it was better to get the shots at home than at the doctor's. And so it begins...
Right now, Katie and her mother are all snuggled into my bed, sound asleep, without a thought as to how much room might be left for me. So, I'll just stretch out in Katie's twin size bed and get a little sleep myself. Good night.
This evening, after Amy got home and we were in the process of getting Katie ready for bed, we gave Katie her first shot at home. She was not very pleased about the idea, but it was much simpler and less traumatic than going to the doctor's office. She struggled and cried, and I had to hold her down just as firmly as if we were at the doctor's office, but she stopped as soon as we stopped. She didn't like it, but she agreed that it was better to get the shots at home than at the doctor's. And so it begins...
Right now, Katie and her mother are all snuggled into my bed, sound asleep, without a thought as to how much room might be left for me. So, I'll just stretch out in Katie's twin size bed and get a little sleep myself. Good night.
Thursday, March 27, 2008
Queen of the Infusion Bay
I never really doubted Katie's potential as a world leader, but my worst suspicions were confirmed today. She will not be running for President because she will be far too busy proclaming herself Queen. We had a busy but very good day in Burlington, and Katie enjoyed herself immensely. (Isn't this a cancer blog?)
We got off to a good start this morning. Katie did not have any big procedures today, so she was allowed to eat and to drink. Her counts were high enough that we could safely stop in Johnson for coffee, and Katie could come in! She browsed every shelf in the mini-mart before selecting goldfish crackers and milk. Go figure. She was simply happy to have had opportunities to mingle. She talked at me from Barton to Burlington. She made me turn the radio off several times so she could have my undivided attention: "Turn the radio off, Mom. I have to tell you something." Yikes.
I was afraid this would wear off before we reached Burlington, but she raced me down the hall to the Children's Specialty Clinic. She was running and laughing as we entered, happy to see the ladies at the front desk and completely cooperative (for the first time) with Jess, the nurse who does the vital signs. Shannon was ready for us, with Dora already loaded in one room of the infusion bay, and Katied trooped right in on her own. She climbed into her chair, and off we went. She fussed very little when Shannon accessed her port, and she enjoyed her reward: an inflatable ball with the rubber band handle that she then danced with joyously, bopping herself and whacking me in the head with this thing as she sang the ABCs. We were off to a good start.
Katie had lots of visitors today. Heidi brought Katie a monkey, and she loves it. The folks from the Vermont Teddy Bear factory brought bears for the kids to stuff and clothes they could choose for their bears, and Katie thought this was great. She also met Monte, the hospital's mascot, a very large moose. Penny and Alex came to visit, as did the Child Life folks, and Katie had interesting tales to share with all of them. Nurses and doctors were in and out all day--we saw Dr. Homans for the first time in many weeks--and Katie was inspired to entertain. At one point she was standing on the bed in the infusion bay, clad in a diaper and striped knee socks, shaking her booty: "Dance, dance, boogie!" Grandma Kathy and Dora have been trying to teach Katie to share, and their efforts have paid off. Katie elected to share her precious stash of Pirate's Booty. She parceled out servings, one piece at a time, to all the infusion bay staff--the way a queen might reward her loyal servants with token gifts. Yikes. The good news is that Katie told everyone who would listen that Shannon takes good care of her. It's true. I hope Shannon knows just how much Katie really does appreciate her help.
(I appreciate Shannon's help. She taught me how to give subcutaneous injections today. I changed into shorts and let Katie watch as I gave myself a quick shot. I think Katie almost believes that these particular shots won't be so bad. I almost believe that this will be fine. We're determined to make this work. We'll let you know.)
We left the hospital much later than I had expected, so that limited our fun options. Uncle John was at work and the aquarium was closing, so the golden arches looked pretty good. We took Grandma and Grandpa to McDonalds and then to Kmart. (We know how to celebrate...) All I have to say about these episodes is that it is easy to remember, when Katie feels well, that she is two years old. (Why do little kids think its funny to run away from their frazzled parents in crowded discount stores?) I was glad to put Kmart behind us. Katie clearly had more energy to burn, so we surprised Auntie Heather and Uncle Ryan with a visit. This was another highlight of our day. Katie enjoyed the freedom to run and play in a supervised space. She was very happy to see Kyler and to check out his new room. Kyler made Katie a wonderful paper crown. I laughed as I thought about it on the way home; even her cousins are willing to serve Princess Katie.
I know, in my head, that Katie will get sick again, and soon. The drugs she took today are truly awful, and they will challenge her body. That is what makes us so desperate to fit fun into the good days. It is hard to reconcile Katie's behavior today with her diagnosis. No one would ever guess that she is a cancer patient. Even her doctors were pleasantly surprised by just how animated and energetic she was. I am tired, but I am very glad that I spent this day with my daughter.
We got off to a good start this morning. Katie did not have any big procedures today, so she was allowed to eat and to drink. Her counts were high enough that we could safely stop in Johnson for coffee, and Katie could come in! She browsed every shelf in the mini-mart before selecting goldfish crackers and milk. Go figure. She was simply happy to have had opportunities to mingle. She talked at me from Barton to Burlington. She made me turn the radio off several times so she could have my undivided attention: "Turn the radio off, Mom. I have to tell you something." Yikes.
I was afraid this would wear off before we reached Burlington, but she raced me down the hall to the Children's Specialty Clinic. She was running and laughing as we entered, happy to see the ladies at the front desk and completely cooperative (for the first time) with Jess, the nurse who does the vital signs. Shannon was ready for us, with Dora already loaded in one room of the infusion bay, and Katied trooped right in on her own. She climbed into her chair, and off we went. She fussed very little when Shannon accessed her port, and she enjoyed her reward: an inflatable ball with the rubber band handle that she then danced with joyously, bopping herself and whacking me in the head with this thing as she sang the ABCs. We were off to a good start.
Katie had lots of visitors today. Heidi brought Katie a monkey, and she loves it. The folks from the Vermont Teddy Bear factory brought bears for the kids to stuff and clothes they could choose for their bears, and Katie thought this was great. She also met Monte, the hospital's mascot, a very large moose. Penny and Alex came to visit, as did the Child Life folks, and Katie had interesting tales to share with all of them. Nurses and doctors were in and out all day--we saw Dr. Homans for the first time in many weeks--and Katie was inspired to entertain. At one point she was standing on the bed in the infusion bay, clad in a diaper and striped knee socks, shaking her booty: "Dance, dance, boogie!" Grandma Kathy and Dora have been trying to teach Katie to share, and their efforts have paid off. Katie elected to share her precious stash of Pirate's Booty. She parceled out servings, one piece at a time, to all the infusion bay staff--the way a queen might reward her loyal servants with token gifts. Yikes. The good news is that Katie told everyone who would listen that Shannon takes good care of her. It's true. I hope Shannon knows just how much Katie really does appreciate her help.
(I appreciate Shannon's help. She taught me how to give subcutaneous injections today. I changed into shorts and let Katie watch as I gave myself a quick shot. I think Katie almost believes that these particular shots won't be so bad. I almost believe that this will be fine. We're determined to make this work. We'll let you know.)
We left the hospital much later than I had expected, so that limited our fun options. Uncle John was at work and the aquarium was closing, so the golden arches looked pretty good. We took Grandma and Grandpa to McDonalds and then to Kmart. (We know how to celebrate...) All I have to say about these episodes is that it is easy to remember, when Katie feels well, that she is two years old. (Why do little kids think its funny to run away from their frazzled parents in crowded discount stores?) I was glad to put Kmart behind us. Katie clearly had more energy to burn, so we surprised Auntie Heather and Uncle Ryan with a visit. This was another highlight of our day. Katie enjoyed the freedom to run and play in a supervised space. She was very happy to see Kyler and to check out his new room. Kyler made Katie a wonderful paper crown. I laughed as I thought about it on the way home; even her cousins are willing to serve Princess Katie.
I know, in my head, that Katie will get sick again, and soon. The drugs she took today are truly awful, and they will challenge her body. That is what makes us so desperate to fit fun into the good days. It is hard to reconcile Katie's behavior today with her diagnosis. No one would ever guess that she is a cancer patient. Even her doctors were pleasantly surprised by just how animated and energetic she was. I am tired, but I am very glad that I spent this day with my daughter.
Wednesday, March 26, 2008
Good News!
Rick just dragged me out of Joshua's room. I was sleeping peacefully, curled up in a lump with my sleeping boy, who smelled so sweet after a bath with his sister. (Joshua did so well today. He was reading and spelling words we made on the walls of the tub with soft foam letters. He was having fun with the bubbles and cheering Katie along. He is such a resilient kid...) I wasn't eager to leave his sleepy little self, but I wanted to give you the further good news:
Katie's cell counts are all good--all of them--so she will begin the second phase of consolidation treatment tomorrow morning at Fletcher Allen. Her Absolute Neutrophil Count (or ANC) is absolutely normal. This is surprising given how low it was just last week. Katie's body continues to power her along through a daunting regimen. She is a miracle, as is the science that allows her to heal and to grow. You would never know that Katie has cancer. She took a long nap for Grandma today, and it really charged her batteries. She ran and played. She shrieked and shouted. She peed on the potty. She was raring to go when she woke up, and it was a pleasure to run about after he (although we couldn't really keep up). Rick is in bed with Katie at the moment. He is probably sleeping, but I can still hear Katie...
Katie will have cytoxan (cyclophosphamide). cytarabine (Ara-C) and 6mp (mercaptopurine) tomorrow. These are the drugs that really depress her cell counts, so we can almost count on more frequent visits to Burlington two weeks from now as her cell counts bottom out again and we need blood products. We plan, therefore, to make the most of our journey into the Queen City tomorrow. Isolation is one aspect of this treatment that Katie just does not like. She needs people. She cried, Tuesday night, when we could not wait INSIDE the restaurant for the pizza we had ordered. Take out just doesn't cut it when there are live bodies just through the door that she would very much like to go visit. She is overdue for an adventure of some kind. We have to prove that the hospital is not the only attraction in Burlington. I don't know what we'll do, but we'll find some fun somewhere!
Here's a funny thought for you: Katie will need subcutaneous injections of cytarabine for three consecutive days beginning Friday, and the doctors have suggested that it might be less traumatic for Katie to receive these at home in the safety of her own space. This would mean fewer trips to Newport Pediatrics. While we are happy to visit the pediatrician in Newport, we don't want Katie to associate her office with SHOTS. When we asked Katie about these shots, she expressed a clear preference: "Mommy do it." Yikes. The current plan is that I will learn how to give Katie shots while Rick holds her. I will practice on my own leg while Katie watches so she can see how this works. I'm not completely convinced that this will reduce Katie's anxiety, but I'm willing to give it a shot. (Ha, ha, ha...)
On that ridiculous note, I'm going back to bed. Good night, all.
Katie's cell counts are all good--all of them--so she will begin the second phase of consolidation treatment tomorrow morning at Fletcher Allen. Her Absolute Neutrophil Count (or ANC) is absolutely normal. This is surprising given how low it was just last week. Katie's body continues to power her along through a daunting regimen. She is a miracle, as is the science that allows her to heal and to grow. You would never know that Katie has cancer. She took a long nap for Grandma today, and it really charged her batteries. She ran and played. She shrieked and shouted. She peed on the potty. She was raring to go when she woke up, and it was a pleasure to run about after he (although we couldn't really keep up). Rick is in bed with Katie at the moment. He is probably sleeping, but I can still hear Katie...
Katie will have cytoxan (cyclophosphamide). cytarabine (Ara-C) and 6mp (mercaptopurine) tomorrow. These are the drugs that really depress her cell counts, so we can almost count on more frequent visits to Burlington two weeks from now as her cell counts bottom out again and we need blood products. We plan, therefore, to make the most of our journey into the Queen City tomorrow. Isolation is one aspect of this treatment that Katie just does not like. She needs people. She cried, Tuesday night, when we could not wait INSIDE the restaurant for the pizza we had ordered. Take out just doesn't cut it when there are live bodies just through the door that she would very much like to go visit. She is overdue for an adventure of some kind. We have to prove that the hospital is not the only attraction in Burlington. I don't know what we'll do, but we'll find some fun somewhere!
Here's a funny thought for you: Katie will need subcutaneous injections of cytarabine for three consecutive days beginning Friday, and the doctors have suggested that it might be less traumatic for Katie to receive these at home in the safety of her own space. This would mean fewer trips to Newport Pediatrics. While we are happy to visit the pediatrician in Newport, we don't want Katie to associate her office with SHOTS. When we asked Katie about these shots, she expressed a clear preference: "Mommy do it." Yikes. The current plan is that I will learn how to give Katie shots while Rick holds her. I will practice on my own leg while Katie watches so she can see how this works. I'm not completely convinced that this will reduce Katie's anxiety, but I'm willing to give it a shot. (Ha, ha, ha...)
On that ridiculous note, I'm going back to bed. Good night, all.
Everything is fine
Sorry for not posting yesterday. I went sledding with Josh again last night after the sun went down and the snow froze solid again and we got home well after his bed time. I fell asleep putting Katie to sleep. Amy fell asleep even sooner. We simply ran out of time to post to the blog. I'm posting now during the last part of a study hall, but Either Amy or I will post a new update this evening from home. Just a hint of good news first... Katie's ANC is up over 1500 as of last night's blood test.
Monday, March 24, 2008
Sledding with Josh
This entry isn't so much about Katie as it is about an adventure that Josh I had today. Katie had a wonderful day today, eating like a horse, napping on schedule, playing, reading and exercising. So really, there isn't much more to write about her today. Josh, however had a fun time sledding with me after school on a hill that provided one of the fastest, longest toboggan rides I have ever had in my life. The snow (ice) around here is rock hard and even I can walk on top of it without cracking it. So Josh and I headed to the top of Burton hill where a large pasture covers a good portion of the whole side of the hill leading down into Irasburg. Each trip down the hill was so fast and lasted so long that by the time we finally stopped at the bottom, we both had tears on our cheeks from the wind whipping our eyes. We spent a couple of hours riding the toboggan on that hill and a good chunk of that time was spent walking since the trip back to the top took from 10 to 15 minutes each time. We are hoping that the snow conditions hold up and we can get in a couple more days of sledding this week before the snow softens up.
Sunday, March 23, 2008
Easter Sunday
Easter Sunday has come and gone and we all had a wonderful day. Josh and Katie had a great time looking for eggs this morning and romping around the house waiting for a breakfast of pancakes, bacon and sausage. Katie was a normal two year old today and she was able to celebrate this holiday like any other two year old would. For that I am grateful. Another thing worthy of note was that today was also my father's birthday. It has never fallen on easter before and that made this one somehow special. It also marks the birthday he has been waiting for for a long time because it means he can retire. I believe he has seven days of work left but at this point, he is probably counting the hours.
Grandma Kathy is here now so that Amy and I can both go to work in the morning and everyone in the house is asleep except for me. As soon as I finish uploading some assignments to the web, I will be headed to bed as well.
Good night everyone and happy Easter.
Saturday, March 22, 2008
Staying Inside Where It is Warm
It was cold outside today with the wind whipping up some nasty frostbite inducing temperatures during our brief excursions out to feed the horses. The horses were smart enough to stay in the woods all day in an effort to avoid most of the wind. We tried to do something similar and stay inside where it was warm and do indoor activities like movies, stories, coloring easter eggs and of course, naps. Saturdays are always good for naps.
The kids were - well, kids. They romped and played and argued and fought and hugged and made up in a matter of minutes and then repeated the cycle again and again throughout the day. The favorite toys of the day included transformers and tiny plastic easter chicks that pop out of a plastic egg at the push of a button.
Katie is feeling a little more like her old self each day as her body recovers from the last round of chemotherapy. She is running and climbing and screaming just for the fun of it. Josh has had several good days in a row now. I don't think he has had a melt down worth mentioning since last Saturday. I don't know if he is coming to terms with the situation or if his sister feeling better makes all the difference, but I'm happy to see him regaining some control over his emotions again.
The wound on Katie's leg looks better today. The sore itself hasn't shrunk especially since Katie scratched it this morning and started it bleeding, but the redness around the sore has diminished quite a bit and it is starting to look more like a normal injury in the process of healing. Hopefully, by Wednesday, it will be completely healed and we can stay on schedule for our next round of chemotherapy.
Tomorrow is Easter and Katie's ANC is still too low for large gatherings of people so we are staying home and celebrating Easter. We plan an egg hunt in the morning and then a simple Sunday. Amy and Josh want to go to church. Katie and I will stay home and hang out until they get back, and then I have to put the Barn door back on its track. I knocked that off today after clearing ice so it would open wider. The rest of the afternoon will probably include school work until it is time for Easter dinner.
Grandma Kathy will be arriving tomorrow evening as well to cover for us again so that we can both go back to work on Monday. Her and Katie seem to be getting along just fine now and it makes things much easier for us and better for our students now that each of us can be at school four days per week. Thank you again Grandma Kathy.
The kids were - well, kids. They romped and played and argued and fought and hugged and made up in a matter of minutes and then repeated the cycle again and again throughout the day. The favorite toys of the day included transformers and tiny plastic easter chicks that pop out of a plastic egg at the push of a button.
Katie is feeling a little more like her old self each day as her body recovers from the last round of chemotherapy. She is running and climbing and screaming just for the fun of it. Josh has had several good days in a row now. I don't think he has had a melt down worth mentioning since last Saturday. I don't know if he is coming to terms with the situation or if his sister feeling better makes all the difference, but I'm happy to see him regaining some control over his emotions again.
The wound on Katie's leg looks better today. The sore itself hasn't shrunk especially since Katie scratched it this morning and started it bleeding, but the redness around the sore has diminished quite a bit and it is starting to look more like a normal injury in the process of healing. Hopefully, by Wednesday, it will be completely healed and we can stay on schedule for our next round of chemotherapy.
Tomorrow is Easter and Katie's ANC is still too low for large gatherings of people so we are staying home and celebrating Easter. We plan an egg hunt in the morning and then a simple Sunday. Amy and Josh want to go to church. Katie and I will stay home and hang out until they get back, and then I have to put the Barn door back on its track. I knocked that off today after clearing ice so it would open wider. The rest of the afternoon will probably include school work until it is time for Easter dinner.
Grandma Kathy will be arriving tomorrow evening as well to cover for us again so that we can both go back to work on Monday. Her and Katie seem to be getting along just fine now and it makes things much easier for us and better for our students now that each of us can be at school four days per week. Thank you again Grandma Kathy.
Friday, March 21, 2008
A Perfectly Wondrous Day
We had a very ordinary day. That is, perhaps, the most extraordinary thing about the day we had; it flowed much like any day we might have had in November before Katie got sick. Something about our routine suddenly seemed familiar.
Josh was happy to go to school. He had a playdate with his buddy Jack after school. He came home with a backpack full of Lego catalogs that the ever thoughtful Carmen Tarbox had assembled for him. He ate a good dinner, watched a good movie and went off to bed with Rick, happy to pore through his catalogs while snuggled up next to his dad. As we thought back through the week, we realized that Joshua has not had a real meltdown in nearly a week. It isn't always pretty here--we all get snappy from time to time, and the two kids had at each other a few days ago--but our efforts to stay calm, to set limits and to spend some extra time with Josh appear to be paying off. Spring will help. This is an active kid who needs more opportunities to stretch his legs and to tire himself out. While it certainly does not look like warm weather will ever come--it is very cold, and the wind is wicked--I have to believe that the sunshine will do us all some good.
Katie misses the swings in the backyard. She keeps asking me why the snow won't melt. She has plans for the slide. She doesn't understand why the weather report is still so grim. What can I possibly say to improve her spirits when I find myself opening windows and hoping to catch a warm breezes or some sun? I miss the smell of earthworms. Happy Spring, friends! (grrr...) I'm looking forward to swings and trampolines, too. Joshua isn't the only Kelley kid who has energy to burn.
What a delight it is to write that Katie feels pretty good. She does have some pain in her legs, but she is learning to ignore it, and it doesn't stop her. She played all day long. We watched very little television. I had to chase Katie to shovel in antibiotics. She danced through a cd today, running circles in Joshua's room and falling down dizzy, happy to be using her body and not just living in it. "Shake your booty," she sang, laughing and jumping. "Get up, Mommy. Run!" Good for you, Katie Grace. While Katie's abundant energy made it difficult to complete the housekeeping tasks I had assigned myself, I consumed enough coffee that I could (sort of) keep up with the littlest madwoman, and we just kept moving. We are both tired--a good sign, I think, of a day really lived. I am so proud of Katie, so fully impressed by the will to play I saw today.
This break from treatment will end, and soon. She still has too few white cells, but the numbers are improving, and the folks at Fletcher Allen expect to see us for treatment next Thursday. Another round of chemotherapy will begin, and Katie will get sick. She will be tired and cranky. We will be edgy and tense. We will need to travel to Burlington for transfusions. I am so glad to have had this regular old day. When Rick and I talked, throughout the day, we talked about vinegar for coloring Easter eggs and not about medications or labs. We sounded like our old selves.
There are, of course, reminders that life is not exactly normal. Katie is still neutropenic, so we cannot surprise our parents by showing up at the front doors to ask whether or not the Easter bunny has arrived. We cannot have our traditional Easter egg hunt at Auntie Heather's house. Katie remains confined to the house, so Rick will keep her company, while Joshua and I go it alone at church Easter morning. The Easter bunny will bring blueberries and books, as he always does, but we have had to alter some of our old routines. I am trying to think of this as an opportunity to create new traditions. We'll see what we can come up with. Easter has always been one of my favorite holdiays. I have always loved the way that celebrations and alleluiahs accompany the gradual greenup process of spring. I hope you'll all enjoy the festivities with your families and that daffodils will charm us soon with their cheerful bright faces. Happy Easter, all, and best wishes.
Josh was happy to go to school. He had a playdate with his buddy Jack after school. He came home with a backpack full of Lego catalogs that the ever thoughtful Carmen Tarbox had assembled for him. He ate a good dinner, watched a good movie and went off to bed with Rick, happy to pore through his catalogs while snuggled up next to his dad. As we thought back through the week, we realized that Joshua has not had a real meltdown in nearly a week. It isn't always pretty here--we all get snappy from time to time, and the two kids had at each other a few days ago--but our efforts to stay calm, to set limits and to spend some extra time with Josh appear to be paying off. Spring will help. This is an active kid who needs more opportunities to stretch his legs and to tire himself out. While it certainly does not look like warm weather will ever come--it is very cold, and the wind is wicked--I have to believe that the sunshine will do us all some good.
Katie misses the swings in the backyard. She keeps asking me why the snow won't melt. She has plans for the slide. She doesn't understand why the weather report is still so grim. What can I possibly say to improve her spirits when I find myself opening windows and hoping to catch a warm breezes or some sun? I miss the smell of earthworms. Happy Spring, friends! (grrr...) I'm looking forward to swings and trampolines, too. Joshua isn't the only Kelley kid who has energy to burn.
What a delight it is to write that Katie feels pretty good. She does have some pain in her legs, but she is learning to ignore it, and it doesn't stop her. She played all day long. We watched very little television. I had to chase Katie to shovel in antibiotics. She danced through a cd today, running circles in Joshua's room and falling down dizzy, happy to be using her body and not just living in it. "Shake your booty," she sang, laughing and jumping. "Get up, Mommy. Run!" Good for you, Katie Grace. While Katie's abundant energy made it difficult to complete the housekeeping tasks I had assigned myself, I consumed enough coffee that I could (sort of) keep up with the littlest madwoman, and we just kept moving. We are both tired--a good sign, I think, of a day really lived. I am so proud of Katie, so fully impressed by the will to play I saw today.
This break from treatment will end, and soon. She still has too few white cells, but the numbers are improving, and the folks at Fletcher Allen expect to see us for treatment next Thursday. Another round of chemotherapy will begin, and Katie will get sick. She will be tired and cranky. We will be edgy and tense. We will need to travel to Burlington for transfusions. I am so glad to have had this regular old day. When Rick and I talked, throughout the day, we talked about vinegar for coloring Easter eggs and not about medications or labs. We sounded like our old selves.
There are, of course, reminders that life is not exactly normal. Katie is still neutropenic, so we cannot surprise our parents by showing up at the front doors to ask whether or not the Easter bunny has arrived. We cannot have our traditional Easter egg hunt at Auntie Heather's house. Katie remains confined to the house, so Rick will keep her company, while Joshua and I go it alone at church Easter morning. The Easter bunny will bring blueberries and books, as he always does, but we have had to alter some of our old routines. I am trying to think of this as an opportunity to create new traditions. We'll see what we can come up with. Easter has always been one of my favorite holdiays. I have always loved the way that celebrations and alleluiahs accompany the gradual greenup process of spring. I hope you'll all enjoy the festivities with your families and that daffodils will charm us soon with their cheerful bright faces. Happy Easter, all, and best wishes.
Thursday, March 20, 2008
Farewell to Grandma
Today was the last day of Katie staying home with her grandmother for this week. Amy will stay with Katie tomorrow while I go to work. Happily, Katie was fairly pleasant for her grandmother today and reasonably cooperative. She was happy and high energy, so she acted like almost any other two year old today.
We certainly do appreciate what Kathy is doing for us by taking care of Katie three days a week for a while so that we don't have to use up all of our sick days so quickly. It is also very nice of Katie's grandfather, Art, to live on peanut butter sandwiches for three days while his wife is here caring for his granddaughter. Thank you, Grandpa Heart and Grandma Kathy. The future is so terribly uncertain that we have no way of knowing how much time we may have to take off from work later. Luckily, we have a vacation coming up soon, and the end of the school year creeps closer and closer (as long as we don't have any more snow days).
This evening, we took Katie to North Country Hospital for her weekly blood test. It wasn't pretty, but it was better than last time. She really is getting better at letting people stick her with sharp objects. Afterwards we treated her with whatever she wanted - she asked for Chinese take-out...
(Amy here.) I, for one, am learning to hate Chinese take-out. There are so many foods that will never look the same. Fortunately, Katie has been eating calorie rich--not calorie dense--foods high in protein, and that is just what the doctor ordered. Turkey roll-ups and hot dogs dominate the menu, but yogurt makes the occasional guest appearance, too. I'm waiting for Katie to request a milkshake.
I have taken over the computer to put commas where they belong. I also wanted to continue with further expressions of our gratitude. Many thanks to my cousin Kristi and her family and to my Aunt Sisty, who have sent bright and cheerful packages. I have not seen my Michigan family in so long...Many thanks to the Home Dem in Newport Center for the beautiful quilt. It matches the colors in Katie's room perfectly. Many thanks to the Parents Association at Lake Region for their support. That was quite a surprise, and it brought the tears that come when I am literally shocked by our neighbors' generosity. Many thanks to Kim and Michelle and Colleen, who are planning events to bring our community together. Thanks to those of you who continue to send along brightly colored notes and to pray for Katie's health. We appreciate all that you do--really. We have learned an important lesson about the health and the strength of our extended family, and we thank you.
We certainly do appreciate what Kathy is doing for us by taking care of Katie three days a week for a while so that we don't have to use up all of our sick days so quickly. It is also very nice of Katie's grandfather, Art, to live on peanut butter sandwiches for three days while his wife is here caring for his granddaughter. Thank you, Grandpa Heart and Grandma Kathy. The future is so terribly uncertain that we have no way of knowing how much time we may have to take off from work later. Luckily, we have a vacation coming up soon, and the end of the school year creeps closer and closer (as long as we don't have any more snow days).
This evening, we took Katie to North Country Hospital for her weekly blood test. It wasn't pretty, but it was better than last time. She really is getting better at letting people stick her with sharp objects. Afterwards we treated her with whatever she wanted - she asked for Chinese take-out...
(Amy here.) I, for one, am learning to hate Chinese take-out. There are so many foods that will never look the same. Fortunately, Katie has been eating calorie rich--not calorie dense--foods high in protein, and that is just what the doctor ordered. Turkey roll-ups and hot dogs dominate the menu, but yogurt makes the occasional guest appearance, too. I'm waiting for Katie to request a milkshake.
I have taken over the computer to put commas where they belong. I also wanted to continue with further expressions of our gratitude. Many thanks to my cousin Kristi and her family and to my Aunt Sisty, who have sent bright and cheerful packages. I have not seen my Michigan family in so long...Many thanks to the Home Dem in Newport Center for the beautiful quilt. It matches the colors in Katie's room perfectly. Many thanks to the Parents Association at Lake Region for their support. That was quite a surprise, and it brought the tears that come when I am literally shocked by our neighbors' generosity. Many thanks to Kim and Michelle and Colleen, who are planning events to bring our community together. Thanks to those of you who continue to send along brightly colored notes and to pray for Katie's health. We appreciate all that you do--really. We have learned an important lesson about the health and the strength of our extended family, and we thank you.
Wednesday, March 19, 2008
Stair Climbing
The highlight of the day was indeed the climbing of 14 stairs multiple times. You see, Katie's last couple of rounds of chemotherapy have included a drug, Vincristine, that generally causes side-effects such as reduced reflexes, fatigue, numbness and gait imbalance; all of which would make it very difficult to climb stairs.
Until yesterday, Katie had not been climbing stairs for fear of falling down. She would climb the first one or two and then ask to be picked up. She has never tried going down the stairs at all. But something changed yesterday. She climbed three stairs while I was chasing her around the house on my hands and knees. She wanted to get away by climbing the stairs, but she wanted to be picked up at the same time - she had a dilemma. We solved that dilemma by climbing the stairs very slowly, side by side on our hands and knees with the occasional tickle encouragement. At the top of the stairs we continued our game of pursuit.
Today, she willingly shot right up the stairs all by herself, celebrated at the top, and has climbed up the stairs again since then. We are very happy for her and extremely pleased to see her find ways to overcome some of the more debilitating side-effects of her treatments. To express my feelings in some of Katie's own words, "Yea Katie!"
Until yesterday, Katie had not been climbing stairs for fear of falling down. She would climb the first one or two and then ask to be picked up. She has never tried going down the stairs at all. But something changed yesterday. She climbed three stairs while I was chasing her around the house on my hands and knees. She wanted to get away by climbing the stairs, but she wanted to be picked up at the same time - she had a dilemma. We solved that dilemma by climbing the stairs very slowly, side by side on our hands and knees with the occasional tickle encouragement. At the top of the stairs we continued our game of pursuit.
Today, she willingly shot right up the stairs all by herself, celebrated at the top, and has climbed up the stairs again since then. We are very happy for her and extremely pleased to see her find ways to overcome some of the more debilitating side-effects of her treatments. To express my feelings in some of Katie's own words, "Yea Katie!"
Just An Average Good Day
Nothing much happened yesterday. Katie stayed home with Grandma while Amy and I went to work. Unlike last week there was no throwing of breakfast dishes and grandma wasn't yelled at quite so much.
This morning, we left without any tears or long hugs. Katie was sitting on the couch watching a Garfield movie and she just waved and said goodbye as we left.
This morning, we left without any tears or long hugs. Katie was sitting on the couch watching a Garfield movie and she just waved and said goodbye as we left.
Monday, March 17, 2008
End of the Day
Katie and I are home from Fletcher Allen. In fact, we got home soon enough to feed the horses, sit down and have dinner as a family, play some video games, and have some stories before bed. It is nice not to have to spend the entire day and most of the evening in the hospital every time we go in.
Katie had a really good day with only one little spot of sickness on the way home. She is getting much better at letting the nurses access her port. The wiggling, squirming and crying lasted less than 1 minute as the nurse cleaned the skin over the port and then accessed it. After that, Katie played happily in the comfort zone until it was time for her Lumbar Puncture. She even let one of the nurses hold her and carry her around in the comfort zone today.
When the procedure was complete, she woke up in a good mood and told me all about the hamburger that she wanted to eat as we drove over to pick up Grandma Kathy. Unfortunately, before we could get that hamburger into her, she become nauseas and wanted nothing to do with food. I gave her some Zofran to help out but it didn't work quick enough for her this time and she rode the whole way home feeling kind of queasy and not wanting to even see food. When we got home however, she was fine and she was hungry again. I cooked her up a hamburger for dinner.
Her blood cell counts should be starting to come back up now, and the next round of chemotherapy can't begin until the numbers do come back up. Everything had risen a little bit for today's test except her white blood cell counts. Her white blood cells were just over 1000 today and her ANC was a mere 70!
The doctor was just as concerned as I was about her leg today, but assured me that the sore tested negative for the drug resistant staff infection. She thinks that Katie's body is just too worn out right now to heal itself and this is another thing that may force us to wait a bit to begin the next round of chemotherapy. The doctor wants that sore to heal before she starts knocking Katie's immune system back down again. In the mean time, we are to keep a very close eye on her temperature. If it starts to rise above 100.4 she needs to go to the hospital for more antibiotics directly through an IV. She is doesn't want to let the infection in Katie's leg spread to the rest of her body and a fever would be an indication that it was doing just that.
For now, Katie is sleeping soundly in my bed, happy to be home and snuggled into her parent's bed. Josh is also asleep, and Amy and I won't be far behind.
Katie had a really good day with only one little spot of sickness on the way home. She is getting much better at letting the nurses access her port. The wiggling, squirming and crying lasted less than 1 minute as the nurse cleaned the skin over the port and then accessed it. After that, Katie played happily in the comfort zone until it was time for her Lumbar Puncture. She even let one of the nurses hold her and carry her around in the comfort zone today.
When the procedure was complete, she woke up in a good mood and told me all about the hamburger that she wanted to eat as we drove over to pick up Grandma Kathy. Unfortunately, before we could get that hamburger into her, she become nauseas and wanted nothing to do with food. I gave her some Zofran to help out but it didn't work quick enough for her this time and she rode the whole way home feeling kind of queasy and not wanting to even see food. When we got home however, she was fine and she was hungry again. I cooked her up a hamburger for dinner.
Her blood cell counts should be starting to come back up now, and the next round of chemotherapy can't begin until the numbers do come back up. Everything had risen a little bit for today's test except her white blood cell counts. Her white blood cells were just over 1000 today and her ANC was a mere 70!
The doctor was just as concerned as I was about her leg today, but assured me that the sore tested negative for the drug resistant staff infection. She thinks that Katie's body is just too worn out right now to heal itself and this is another thing that may force us to wait a bit to begin the next round of chemotherapy. The doctor wants that sore to heal before she starts knocking Katie's immune system back down again. In the mean time, we are to keep a very close eye on her temperature. If it starts to rise above 100.4 she needs to go to the hospital for more antibiotics directly through an IV. She is doesn't want to let the infection in Katie's leg spread to the rest of her body and a fever would be an indication that it was doing just that.
For now, Katie is sleeping soundly in my bed, happy to be home and snuggled into her parent's bed. Josh is also asleep, and Amy and I won't be far behind.
Sunday, March 16, 2008
Saint Patrick's Day
Saint Patrick's Day is upon us, and I have been busy finding green outfits for both of the kids. It's a dress down day at St. Paul's, in honor of Saint Patrick, and Joshua has elected to wear a camouflage shirt that effectively combines the worst shades of green anyone could ever want to wear. Ugh. He is, of course, just thrilled. I 'm learning to roll with his quirky decisions. There are only so many fashion catastrophes I can prevent. Katie will wear her favorite froggy sweater to and from the hospital but will have to take it off in time for her procedures. We have discovered that buttonup shirts work really well; she can be dressed while receiving care, as the iv hooked into her port can simply sneak out between the buttons of a dress shirt. Unfortunately, her bottonup shirts are not green, so I chose green socks for her in honor of the occasion. (On a related note, Katie opened her shirt for Shannon in the infusion bay on Thursday when we traveled to Burlington for blood; we appear to be making progress in the bid for Katie's acceptance of the port!)
The funny but gross story we have to tell you today features a green food known to many as one of Katie's favorites. She has always loved peas. She was eating peas for a snack this afternoon when she came suddenly popped into the kitchen, nauseated and nervous. I didn't know that she had eaten peas, so it was a terrible surprise when bright green vomit emerged in great quanitities. It was a scene out of the Exorcist. What a way to begin Saint Patrick's Day!
It strikes me that Katie may find some of these stories humiliating years from now. That is one of the reasons we began writing the blog. We wanted to keep in touch with all of you, but we also wanted to keep a record, for Katie, of all that she has endured. We want her to know herself as a survivor. We're planning to print this journal for her and to bind it, to give her something to read when she is ready to ask questions about this experience. It occurs to me that she might not enjoy the picture of the infection on her leg...Only my husband would post such an awful picture...
The funny but gross story we have to tell you today features a green food known to many as one of Katie's favorites. She has always loved peas. She was eating peas for a snack this afternoon when she came suddenly popped into the kitchen, nauseated and nervous. I didn't know that she had eaten peas, so it was a terrible surprise when bright green vomit emerged in great quanitities. It was a scene out of the Exorcist. What a way to begin Saint Patrick's Day!
It strikes me that Katie may find some of these stories humiliating years from now. That is one of the reasons we began writing the blog. We wanted to keep in touch with all of you, but we also wanted to keep a record, for Katie, of all that she has endured. We want her to know herself as a survivor. We're planning to print this journal for her and to bind it, to give her something to read when she is ready to ask questions about this experience. It occurs to me that she might not enjoy the picture of the infection on her leg...Only my husband would post such an awful picture...
Neurotic Father
I'm sure that Amy thinks I am completely neurotic by now, but I don't like the looks of the sore on Katie's leg. It isn't responding to the antibiotics that she is on and it is getting larger. Neosporin and Bandaids aren't helping either. I know that her immune system is suppressed, but with all of the drugs in her system, it should at least be slowly getting better.
The infection started as two small red bumps placed close together on Katie's thigh at one of the shot sites. Those two dots have merged into this much larger sore on her thigh with an ever increasing area of redness around it, a large open area in the center, and Katie says it hurts. I have not heard anything back about the culture that was taken on it last week, but I am going to ask for another culture or tissue sample to be taken again this week when we travel to Fletcher Allen on Monday. I hope this is just another problem related to her suppressed immune system and not some dangerous infection in its early stages.
Saturday, March 15, 2008
The Consolidation Blues
Hey, faithful readers. I'm sorry we never posted yesterday. Don't worry. We're struggling--let's be honest--but we're fine.
Our trip to Burlington on Thursday was long. Katie received platelets and red cells. Her cell counts were not as low as they have been, but she was symptomatic (she wasn't herself), so the doctors chose to err on the side of caution. "It's the Ara-C," they all said, nodding sagely. Loose translation: The subcutaneous shots Katie received apparently contain some potent toxins, and they are doing what they have to do--they retard rapid cell division--but they are also wreaking havoc with Katie's cell counts. No one was surprised. Doctors and nurses knew what to expect. They are not concerned in the least. This is normal. We just didn't see it coming. When doctors told us that we would really love life at the end of induction, they were right. We thoroughly enjoyed the return of our typically energetic Katie, and we chose to assume that life would resume its normal course. That was dumb. As it turns out, consolidation isn't all that easy on most kids either. I don't know what we were thinking.
To further complicate matters, Katie has a cold--a normal, everyday run of the mill cold. I spent most of Friday pushing her to eat and to drink. She just didn't want very much. The good news is that Katie is eating and drinking relatively well today. Do you remember the day she ate 28 fish sticks? She declared her belly full after just one fish stick and a half this morning. What a difference! Because she is eating something today, though, she has more energy, too. She has been painting, and she just covered the television in playdoh--there are lots of yellow gobs where Bambi's little face should be. We are learning to take this phase of treatment one step at a time. Katie will travel to Burlington with Rick on Monday, and doctors are already preparing to give her platelets before the last scheduled lumbar puncture. The further good news: This is our last scheduled lumbar puncture for several weeks, so there won't be any hungry days for a while, so Katie won't roll into Grandma Kathy's house quite so desperate to eat.
On a funny note, Grandpa Heart has learned to cook chicken nuggets and tater tots. He also thought to bring me a yogurt in the hospital the other day, and that was good. You would not believe just how much junk we are eating these days. Someone at Lake Region makes really good oatmeal raisin cookies. I would know. Katie still doesn't want much sugar, so I have to pick up the slack where cookies are concerned. Fortunately, the kind folks at LR contnue to stock our freezer, so we haven't had to prepare anything more complicated than taco salads.
We did sit down for a family dinner last night, our first really positive family dining experience in some time. We told the kids all kinds of funny stories they would not remember about their early days, pouring in extra rations of love and attention along with the ham and the pasta. It did seem to be working until I was foolish enough to empty the dishwasher by myself. Josh, who was talking to my parents on the phone, discovered that I had continued without him and melted down. This has been so hard on him. Mrs. Trevits tells me that he continues to behave admirably at school and that he prays for Katie every day. We are so fortunate that he has this time for daily meditation. He is stressed out, though, and we are working to support him through daily temper tantrums that are really awful. When he stopped crying last night, he made me promise that I would wait for him to unload the dishwasher. We agreed that we would make that OUR CHORE--time for the two of us to connect while putting away the silverware. This meltdown clearly didn't have much to do with silverware. And we do try to make opportunities to connect with Joshua. We simply cannot fill the bucket quickly enough. I will try to spend some quality time with him today (pizza?!), and Rick will take him skiing tomorrow. I hope these gestures will help. We have also decided to find him a therapist, someone who can teach him strategies to use when deep breathing just doesn't cut it. There is no way of knowing, of course, but I am curious about how this madness will affect him many years from now. This is a life changing event for him, too.
With any luck, spring will come, and we can leave the house for daily jaunts that should lift all our spirits. I am desperate for glimpses of the sun. We all listen carefully for evidence of birds returning to the Kingdom. Keep your fingers crossed, friends. It's only March, after all, and we still have several feet of snow in the front yard. Sigh...
On a positive note, we want to thank my mom, who let us both go back to work last week. Thanks to my parents for keeping us company in the PPR on Thursday. Thanks to Rick's parents and to Heather, whose cheerful telephone calls keep us going. Thanks for your comments on the blog. Thanks for the money you are all raising to cover the cost of gas and to get us out of that (very expensive!) parking garage. Thanks to Suzanne, who sent Katie a Dora pillow and a Dora blanket--she loves them! Thanks to Nana, who continues to care for our horses and for Joshua. Thanks to the good folks at LR, who understand that our children come first and who continue to employ us anyway. This isn't a particularly fun experience, but you're all making this much easier than it could be, and we are grateful.
Our trip to Burlington on Thursday was long. Katie received platelets and red cells. Her cell counts were not as low as they have been, but she was symptomatic (she wasn't herself), so the doctors chose to err on the side of caution. "It's the Ara-C," they all said, nodding sagely. Loose translation: The subcutaneous shots Katie received apparently contain some potent toxins, and they are doing what they have to do--they retard rapid cell division--but they are also wreaking havoc with Katie's cell counts. No one was surprised. Doctors and nurses knew what to expect. They are not concerned in the least. This is normal. We just didn't see it coming. When doctors told us that we would really love life at the end of induction, they were right. We thoroughly enjoyed the return of our typically energetic Katie, and we chose to assume that life would resume its normal course. That was dumb. As it turns out, consolidation isn't all that easy on most kids either. I don't know what we were thinking.
To further complicate matters, Katie has a cold--a normal, everyday run of the mill cold. I spent most of Friday pushing her to eat and to drink. She just didn't want very much. The good news is that Katie is eating and drinking relatively well today. Do you remember the day she ate 28 fish sticks? She declared her belly full after just one fish stick and a half this morning. What a difference! Because she is eating something today, though, she has more energy, too. She has been painting, and she just covered the television in playdoh--there are lots of yellow gobs where Bambi's little face should be. We are learning to take this phase of treatment one step at a time. Katie will travel to Burlington with Rick on Monday, and doctors are already preparing to give her platelets before the last scheduled lumbar puncture. The further good news: This is our last scheduled lumbar puncture for several weeks, so there won't be any hungry days for a while, so Katie won't roll into Grandma Kathy's house quite so desperate to eat.
On a funny note, Grandpa Heart has learned to cook chicken nuggets and tater tots. He also thought to bring me a yogurt in the hospital the other day, and that was good. You would not believe just how much junk we are eating these days. Someone at Lake Region makes really good oatmeal raisin cookies. I would know. Katie still doesn't want much sugar, so I have to pick up the slack where cookies are concerned. Fortunately, the kind folks at LR contnue to stock our freezer, so we haven't had to prepare anything more complicated than taco salads.
We did sit down for a family dinner last night, our first really positive family dining experience in some time. We told the kids all kinds of funny stories they would not remember about their early days, pouring in extra rations of love and attention along with the ham and the pasta. It did seem to be working until I was foolish enough to empty the dishwasher by myself. Josh, who was talking to my parents on the phone, discovered that I had continued without him and melted down. This has been so hard on him. Mrs. Trevits tells me that he continues to behave admirably at school and that he prays for Katie every day. We are so fortunate that he has this time for daily meditation. He is stressed out, though, and we are working to support him through daily temper tantrums that are really awful. When he stopped crying last night, he made me promise that I would wait for him to unload the dishwasher. We agreed that we would make that OUR CHORE--time for the two of us to connect while putting away the silverware. This meltdown clearly didn't have much to do with silverware. And we do try to make opportunities to connect with Joshua. We simply cannot fill the bucket quickly enough. I will try to spend some quality time with him today (pizza?!), and Rick will take him skiing tomorrow. I hope these gestures will help. We have also decided to find him a therapist, someone who can teach him strategies to use when deep breathing just doesn't cut it. There is no way of knowing, of course, but I am curious about how this madness will affect him many years from now. This is a life changing event for him, too.
With any luck, spring will come, and we can leave the house for daily jaunts that should lift all our spirits. I am desperate for glimpses of the sun. We all listen carefully for evidence of birds returning to the Kingdom. Keep your fingers crossed, friends. It's only March, after all, and we still have several feet of snow in the front yard. Sigh...
On a positive note, we want to thank my mom, who let us both go back to work last week. Thanks to my parents for keeping us company in the PPR on Thursday. Thanks to Rick's parents and to Heather, whose cheerful telephone calls keep us going. Thanks for your comments on the blog. Thanks for the money you are all raising to cover the cost of gas and to get us out of that (very expensive!) parking garage. Thanks to Suzanne, who sent Katie a Dora pillow and a Dora blanket--she loves them! Thanks to Nana, who continues to care for our horses and for Joshua. Thanks to the good folks at LR, who understand that our children come first and who continue to employ us anyway. This isn't a particularly fun experience, but you're all making this much easier than it could be, and we are grateful.
Thursday, March 13, 2008
Post Transfusion Bliss
I just got off the phone with Amy and Katie is done with her transfusions, is feeling much better and is on the way home. She has energy again, is eating finally and is no longer complaining of any discomforts of any kind. I continue to be amazed by the number and severity of symptoms that can be corrected by the simple addition of some blood. It really is the best medicine she gets. When was the last time you gave blood? *wink* *wink*
I talked to Katie on the phone after Amy gave me the update and she was just full of life. She was earnestly directing her mother into a McDonald's drive through before they got too far out of town. I am looking forward to seeing them arrive safely at home again in a couple of hours. Of course, the weather isn't cooperating again and it is snowing just enough to make the roads slippery. But Amy took the Subaru today, and that all-wheel-drive has gotten us safely over these Vermont winter roads in much worse conditions than this.
Tomorrow, one of us will be staying home with Katie again since Grandma Kathy has gone back home. I think the week went well and Grandma is likely to come back again next week.
I talked to Katie on the phone after Amy gave me the update and she was just full of life. She was earnestly directing her mother into a McDonald's drive through before they got too far out of town. I am looking forward to seeing them arrive safely at home again in a couple of hours. Of course, the weather isn't cooperating again and it is snowing just enough to make the roads slippery. But Amy took the Subaru today, and that all-wheel-drive has gotten us safely over these Vermont winter roads in much worse conditions than this.
Tomorrow, one of us will be staying home with Katie again since Grandma Kathy has gone back home. I think the week went well and Grandma is likely to come back again next week.
Bad Day
I went to work today and Amy took Katie to Fletcher Allen for her transfusion. Katie wasn't feeling all that good when I left this morning, and when I got my last update around 5pm, Amy said she wasn't going to lie to me, Katie was having a really bad. I guess she has been complaining that she feels nauseas but the nausea medication that usually works so well for her isn't working. She has had two doses of Zofran where normally she would need only one if she even needed one at all. She refuses to eat and I can't blame her for that. I wouldn't want to eat either under those circumstances. She has a headache that won't go away despite pain medication and she just feels weak all over. When I got off the phone They were in the middle of a platelet transfusion and were awaiting the transfusion of red blood cells. I'll update again when I get another call.
Wednesday, March 12, 2008
Funny Forgotten Details
Rick's cold and his ongoing sleep deprivation have clearly affected his sense of humor. He forgot to mention the funniest moment of our day (which was long...) Grandma Kathy stayed home to watch a (very bad) movie with Joshua so we could both go to North Country Hospital for a quick stick blood draw with Katie. She talked incessantly during our drive to Newport, reviewing the plans for our hospital visit. We thought we had it made. As we reached the hospital parking lot, however, she began to cry. Oddly enough, she was not all that upset about the lab work. She was disappointed in our destination. She WANTED to go to Fletcher Allen. She continued to cry when we revealed that the lab techs would be drawing blood from her finger and not from her port. "Why don't we access the port?" she whined. Now that was shocking! I cannot imagine that anyone who works in the infusion bay at Fletcher Allen will believe this story--Katie is not the most cooperative patient the infusion bay has ever hosted, and she fights the poor nurses required to access her port--but every word of this bizarre tale is true. She was relatively well behaved for the lab tech at North Country Hospital, who was very kind, she was very happy to have earned some new Dora stickers, and she was happy to make a quick trip to the barn on our way home. Here's the interesting question: Will she be happy to see the kind folks at Fletcher Allen this week? Will she cooperate with the nurses who access her port? (My guess, for the record, would be no--but Katie has always been a character...)
Wednesday Update
Amy and I both went to school again today and Katie stayed home with Grandma Kathy. She didn't make it easy for us to leave the house this morning. She wanted either her mother or myself to stay home and she cried as we left. Amy had an especially hard time leaving the house as Katie cried for her mother from the other room. However, after we left Katie and grandma both had a good day.
Katie continues to grow a little sicker and a little weaker each day as we get closer and closer to transfusion time. She complained of a headache earlier, which generally means her Hemoglobin is low, and she has developed a few new spots of petechia which indicates that she also has low platelet levels again.
Because of her symptoms, we decided to take her to the hospital for lab work one day early. After school today, we picked her up and headed right to the Hospital to have blood drawn. Katie was great! She talked to the lab tech about horses as the tech drew her blood. We were already scheduled for a trip to Fletcher Allen this Friday for another transfusion, but if the blood test show that her levels are as low as we think they are, Amy and Katie will be headed to Fletcher Allen tomorrow instead.
For now, we are just following the normal bed time routine of stories and a quick cuddle and then off to sleep. Oh, I almost forgot to mention it but I am doing my part of the routine in a hospital mask since I now definitely have a cold. I feel tired and rundown with a tight, painful cough to top it off. The cold is a really nice addition to the multitude of complications that we already deal with every day.
Katie continues to grow a little sicker and a little weaker each day as we get closer and closer to transfusion time. She complained of a headache earlier, which generally means her Hemoglobin is low, and she has developed a few new spots of petechia which indicates that she also has low platelet levels again.
Because of her symptoms, we decided to take her to the hospital for lab work one day early. After school today, we picked her up and headed right to the Hospital to have blood drawn. Katie was great! She talked to the lab tech about horses as the tech drew her blood. We were already scheduled for a trip to Fletcher Allen this Friday for another transfusion, but if the blood test show that her levels are as low as we think they are, Amy and Katie will be headed to Fletcher Allen tomorrow instead.
For now, we are just following the normal bed time routine of stories and a quick cuddle and then off to sleep. Oh, I almost forgot to mention it but I am doing my part of the routine in a hospital mask since I now definitely have a cold. I feel tired and rundown with a tight, painful cough to top it off. The cold is a really nice addition to the multitude of complications that we already deal with every day.
Tuesday, March 11, 2008
Tuesday With Grandma
Katie spent her first day with at home with Grandma Kathy today while Amy and I both went to work. Aside from a little breakfast tossing incident, the day went fairly smoothly for both participants.
Her cough doesn't seem to be getting any worse. It is actually a little looser today than it has been. Josh's cough seems to be gone. I'm the one who seems to be coughing a little more each day.
The sore on Katie's leg hasn't change much, but I don't think it is any worse. The color around it is a little deeper red, but no larger than it was yesterday and the sore itself is scabbed over and doesn't appear swollen. She says that it still hurts when I touch it, and I only touch it very gently.
The length of the day yesterday must have tired her out a bit because she took a nap for her grandmother today that lasted four hours. Kathy told us about that long nap while we were still at school and I didn't give it a second thought. Amy though, had different feelings about a four hour nap. She rushed me out of that school 6 seconds after we were contractually allowed to leave so she could get home to check on her baby. I am happy to report that her baby met us at the door with a big smile and huge hugs and kisses. She is happily playing downstairs right now.
Her cough doesn't seem to be getting any worse. It is actually a little looser today than it has been. Josh's cough seems to be gone. I'm the one who seems to be coughing a little more each day.
The sore on Katie's leg hasn't change much, but I don't think it is any worse. The color around it is a little deeper red, but no larger than it was yesterday and the sore itself is scabbed over and doesn't appear swollen. She says that it still hurts when I touch it, and I only touch it very gently.
The length of the day yesterday must have tired her out a bit because she took a nap for her grandmother today that lasted four hours. Kathy told us about that long nap while we were still at school and I didn't give it a second thought. Amy though, had different feelings about a four hour nap. She rushed me out of that school 6 seconds after we were contractually allowed to leave so she could get home to check on her baby. I am happy to report that her baby met us at the door with a big smile and huge hugs and kisses. She is happily playing downstairs right now.
Monday, March 10, 2008
Not a Great Day
The good news is that Joshua had a good day at school. We are at Lake Region still, and he is happily watching Magic School Bus episodes as I try to get organized. He looks forward to visiting the barn, and I will try to choose a special treat for dinner, as we are on our own.
Rick has been calling with updates today. He and Katie are still at the hospital as I write (it is four o'clock in the afternoon), and they have had a long day. We suspected that Katie's platelets were down--she had some bruising around her port and that old familiar rash that brought us to the doctor's office for the first time seven weeks ago--and we were right. That's the bad news. This was a hungry day, too, and she wasn't sedated or allowed to have the lumbar puncture for which she was scheduled until she received some platelets. The platelet infusion went well, however, and Katie was ultimately cleared to move on through the scheduled procedures. Rick watched the lumbar puncture today--an adventure for him, but not as interesting, he reports, as the Cesarean section through which Katie entered the world. (Ewwww...) Doctors would not clear Katie until she had eaten, and she was munching on popcorn just a few minutes ago. She sounds tired, as does Rick. I would guess that the ride home will be a quiet one.
The further possible wrinkle in our plans is that Katie has a nasty infection on her left leg. We both wonder how she could have such a sore since she takes a broad spectrum antibiotic three days a week. The doctors have given her a new antibiotic, and we'll hope that it works. We'll probably be heading back to visit the hospital later this week, anyway. Katie's hemoglobin is low, and the doctors suspect that she will need another transfusion. Thanks to the blood donors among you--who knew how often Katie would need blood products?!
The good news is that my mom is traveling up to the Kingdom with Rick this afternoon. She will be staying with us for the next few days, keeping Katie company so we can both go back to work. Thank you, Mom. That retirement sure came in handy for us, even if it isn't all that relaxing for you!
We're off to the barn, but we'll post an update later with more details. Don't worry. Our girl will be fine. We're just working on learning to ride with the bumps.
Sunday, March 9, 2008
Katie's First Cold
Everything was going well Sunday until bedtime. That's when she started coughing. Josh has had a horrible sounding cough for a couple of nights now. He sounds like a seal barking, with a loud reverberating sound coming from deep within his chest. It is a very tight cough, not loose in any way. Vicks seemed to help out, while he was asleep and a steamy shower loosened things up in the morning. We can't keep him away from his sister though, so we just hoped it wasn't going to last and that she wouldn't catch it. Now she is asleep behind me as I work at my computer and she just made the very same coughing sound. I guess I'll get out the Vicks and hope her immune system can deal with it.
A Peaceful Saturday
We have nothing exciting to report about yesterday's activities. Katie was feeling good and in a great mood. She spent the day playing around the house with her mother, her brother, and me. She is starting off this morning in the same fashion, sitting in her mother's bed with her mother and her brother, eating a granola bar and watching Dora on a laptop computer. A bath is in her near future, but other than that, the plans for the day are not set in stone. We will most likely have another quiet and peaceful day, cozy and warm inside the house.
Friday, March 7, 2008
Liquid Life
Transfusions are the greatest things. Yesterday Katie was lethargic, pale and weak. Today, with new blood running through her veins, she is bouncing around the house again, dancing, singing and zooming around the house on her wheeled horse. She says she is a crazy driver and I'm on her road so look out.
The other news that we got about Katie yesterday was that her ANC is back up to something close to normal again. So, on a beautiful day like the one we just had, I did not feel inclined to stay trapped in the house all day. We went for a drive to Newport where we stopped in to visit Grandpa and Grandma Kelley, did a little shopping at the Pick & Shovel (Katie's favorite store in the Kingdom), and spent some time poking around the Newport library. The library has a small display case filled with stuffed and mounted animals. Along with water fowl, birds of prey, and various small mammals, the display includes a ten foot long American alligator from Florida. The alligator quickly became the only part of our trip to the library that Katie remembers.
Now that we are back home, we are looking forward to a fun filled evening of coloring, puzzles, towers, and of course, Dora. As I write, Katie and Josh are running around the house playing cops and robbers (a polite term for crazy, noisy, children with toy guns).
The other news that we got about Katie yesterday was that her ANC is back up to something close to normal again. So, on a beautiful day like the one we just had, I did not feel inclined to stay trapped in the house all day. We went for a drive to Newport where we stopped in to visit Grandpa and Grandma Kelley, did a little shopping at the Pick & Shovel (Katie's favorite store in the Kingdom), and spent some time poking around the Newport library. The library has a small display case filled with stuffed and mounted animals. Along with water fowl, birds of prey, and various small mammals, the display includes a ten foot long American alligator from Florida. The alligator quickly became the only part of our trip to the library that Katie remembers.
Now that we are back home, we are looking forward to a fun filled evening of coloring, puzzles, towers, and of course, Dora. As I write, Katie and Josh are running around the house playing cops and robbers (a polite term for crazy, noisy, children with toy guns).
Thursday, March 6, 2008
A Timely Transfusion
Katie is at Fletcher Allen right now getting her fourth transfusion and she really needed it again. Her hemoglobin numbers have been dropping steadily since starting this latest round of chemotherapy and it finally caught up with her. She was tired this morning--very tired, and she was complaining about a headache yesterday afternoon. She hadn't gotten out of bed by the time I left for school, and when I talked to Amy two hours later she was sleeping in the car. We are also wondering if she may be coming down with something or if she is feeling nauseous due to her chemotherapy despite her anti-nausea medicine. She vomited in the car this morning, and she hasn't had vomiting issues before.
This just in. Amy called while I was writing this post, so I can add some additional information.
Katie is most of the way through her transfusion at this point and is feeling great. She has a nice pink color to her skin, she is warm and she is wiggly. Her headache is gone, and even her stomach feels fine.
I also just learned that a researcher at the John Hopkins Hospital has confirmed that the original blood samples did contain small numbers of monoblasts, the indicators of AMoL. Therefor, Katie is no longer considered to have just ALL, she officially has a mixed lineage form of leukemia. The MRD results have also been confirmed, and the monoblasts do appear to be gone at this point.
The doctors have told Amy that these results don't change her prognosis at all because of her previous successes so far. She is still an early responder, and she is still accepting her chemotherapy very well. She is uncommon. She is special. She is Katie, and she is working hard to beat this.
This just in. Amy called while I was writing this post, so I can add some additional information.
Katie is most of the way through her transfusion at this point and is feeling great. She has a nice pink color to her skin, she is warm and she is wiggly. Her headache is gone, and even her stomach feels fine.
I also just learned that a researcher at the John Hopkins Hospital has confirmed that the original blood samples did contain small numbers of monoblasts, the indicators of AMoL. Therefor, Katie is no longer considered to have just ALL, she officially has a mixed lineage form of leukemia. The MRD results have also been confirmed, and the monoblasts do appear to be gone at this point.
The doctors have told Amy that these results don't change her prognosis at all because of her previous successes so far. She is still an early responder, and she is still accepting her chemotherapy very well. She is uncommon. She is special. She is Katie, and she is working hard to beat this.
Wednesday, March 5, 2008
Heading to Burlington
Katie and I are heading to Burlington tomorrow for a blood transfusion. The doctors are not surprised that her counts have dropped. This is part of the plan. We knew it was coming. It just won't necessarily be fun. A transfusion takes several hours, and doctors will have to access her port. Doctors want to sneak us in for blood products before her symptoms are worse. She has a headache but is still
relatively active. There may be another storm coming, though, so we were happy to learn that there is room in the infusion bay for our little pest, who is currently talking to Dora.I splurged this week. I treated Katie to some new Dora dvds the other day, and she is hooked on Dora's Pirate Adventures: "If there's a place you need to get, I can get you there I bet. I'm the map." Thanks to Nana, who has loaned us her portable dvd player. The drive to Burlington is much shorter with Dora chattering happily in the back seat. We will pack up all our snacks and stories and head west early tomorrow morning. We're hoping to be home in time for dinner. Thanks to Barb and to Jack for the playdate--now Josh has something to look forward to as well!
Please don't worry. Transfusions are pretty standard practice for us by now. We'll let you know how it goes, but I expect that Katie will feel better when we return and not worse--always a good thing.
Funny (?) Bills
The care we have received thus far is worth every penny, but it costs a lot of pennies...
Given that we are in the midst of an election and that rising health care costs are likely to be a matter of some debate, I thought I'd tell you about some of the statements we are beginning to receive from Fletcher Allen. My jaw drops each time I open the envelope. Individual items are incredibly expensive, and they add up quickly. It would be cheaper to buy Katie a house. And a car. And some ponies.
This is not to complain--My feeling is that the quality of care we have received is worth every penny our insurance company pays for it. This is why I am writing. I am writing with news about our incredible good fortune. Our insurance company has covered all of Katie's bills thus far. The medications she needs have been out long enough that there are generic versions, and they are not expensive. (We hit our annual pharmacy deductible early!) I am happy to make the $10 copay. "You want ten bucks? No problem!"
It is no exaggeration to say that these medications and procedures are saving Katie's life. I would mortgage my life to raise the money myself if I had to. Let me say, right out loud, how fortunate we are. Money is the least of our worries, thanks to Blue Cross. We are very grateful to our insurance company. We have jobs we like with good benefits, and those benefits make all the difference.
What do people do when they don't have health insurance? It's a question I'm thinking about a lot more this year.
Given that we are in the midst of an election and that rising health care costs are likely to be a matter of some debate, I thought I'd tell you about some of the statements we are beginning to receive from Fletcher Allen. My jaw drops each time I open the envelope. Individual items are incredibly expensive, and they add up quickly. It would be cheaper to buy Katie a house. And a car. And some ponies.
This is not to complain--My feeling is that the quality of care we have received is worth every penny our insurance company pays for it. This is why I am writing. I am writing with news about our incredible good fortune. Our insurance company has covered all of Katie's bills thus far. The medications she needs have been out long enough that there are generic versions, and they are not expensive. (We hit our annual pharmacy deductible early!) I am happy to make the $10 copay. "You want ten bucks? No problem!"
It is no exaggeration to say that these medications and procedures are saving Katie's life. I would mortgage my life to raise the money myself if I had to. Let me say, right out loud, how fortunate we are. Money is the least of our worries, thanks to Blue Cross. We are very grateful to our insurance company. We have jobs we like with good benefits, and those benefits make all the difference.
What do people do when they don't have health insurance? It's a question I'm thinking about a lot more this year.
Tuesday, March 4, 2008
Ridiculous Research
When I first proposed the title for this blog entry, Rick agreed immediately: "Sounds right." With a good DSL connection and some help from our friends at Yahoo, I whiled away the hours tonight, trying to understand some very technical aspects of Katie's blood test results. I don't know what compelled me to waste time this way, but I did learn a lot. I have no idea why I need to know any of this information--Katie's doctors have everything under control--but one question led to another ad infinitum until I realized that time was passing and that vacation ends with our first day back at school tomorrow. My quest began with some of Katie's test results from Monday. I was specifically interested in her metabolic panel, a set of results I had never considered and didn't understand at all. I needed help reading the document to begin with, and when I had identified a few items that were funky, I had to know why they were abnormal. Once I had identified the problem, I needed to know the cause. And so it went. Two hours later, I knew what I have known all along: Chemotherapy is really toxic.
Katie is fine--really. And I have more precise information about the drugs she takes and their effects. But I don't know that I have gained much. (Do I NEED to know how antimetabolite medications disturb cell division or how this affects enzymes in the liver?) Parenting a child with leukemia is a little bit like taking a biochemistry class. Do you remember that high school chemistry teacher who promised that all that information would come in handy some day? She was right. I should have paid more attention. Thanks to Mrs. Voorheis, my high school biology teacher, for providing some of the basic information that makes all of this easier to digest!
The source of all this madness is in her own bed for once, sleeping peacefully as freezing rain hits the skylight above my head. I should follow her lead and head for bed. It will be good to get back to work tomorrow. Good night, all.
Katie is fine--really. And I have more precise information about the drugs she takes and their effects. But I don't know that I have gained much. (Do I NEED to know how antimetabolite medications disturb cell division or how this affects enzymes in the liver?) Parenting a child with leukemia is a little bit like taking a biochemistry class. Do you remember that high school chemistry teacher who promised that all that information would come in handy some day? She was right. I should have paid more attention. Thanks to Mrs. Voorheis, my high school biology teacher, for providing some of the basic information that makes all of this easier to digest!
The source of all this madness is in her own bed for once, sleeping peacefully as freezing rain hits the skylight above my head. I should follow her lead and head for bed. It will be good to get back to work tomorrow. Good night, all.
Monday, March 3, 2008
Getting Used to the Port
We are home! This was a busy but basically very good day. Katie kept us up late at Grandma's, and the four of us spent too much time fighting about blankets, but we rolled out of bed on time and had emla cream on Katie's port in plenty of time. Katie is beginning to make peace with her port. She wanted to show Grandma Kathy and Grandpa Heart her port this last night--a good sign--so we encouraged her to show it off. It was not fun to access her port this morning. She shrieked, and she fought me, wriggling about until Rick finally pinned her down for the actual pick, which takes just seconds. As with so many aspects of her treatment, anticipation is worse than the actual event. Once the (very patient) nurses had accessed her port, Katie was perfectly happy to cooperate and gave up ordering the nurses out of the room. (What do you do with a toddler who has the chutzpah to order an adult out of the room?) T.C. (the teaching doll) wasn't available, so the nurses gave Katie a small muslin doll of her own to color with markers and to keep. Rick helped her decorate her new baby and gave it a port, which Katie then taped over with a bandage much like her own. She was cheerful and well-behaved through the rest of our activities at Fletcher Allen, thanking nurses and charming the anesthesiologist. Joshua did a great job of cheering her along, and we had story time in the PPR (the post procedure room). At some point, Katie will have all her procedures upstairs in the Children's Specialty Clinic, but our current schedule doesn't mesh with the Clinic schedule, so we remain downstairs in the PPR. At one point today I reminded Rick that we will eventually transition upstairs, and he panicked. "But I LIKE the PPR," he whined. I like it there, too. The nurses are so kind, and they are so forgiving. It is helpful to see some of the same faces each week and to feel at home.
Speaking of home, we made the rounds today and visited all of Katie's grandparents in their homes. We had lunch with my parents, we had dinner with Rick's parents, and we dropped Joshua off at Nana's house for a sleepover. Our kids are so lucky to have such incredible grandparents. The kids were very happy to play hide and seek with my dad. Katie didn't really get it--"I'm in here, in the closet," she would yell as Grandpa Heart looked for her--but she had fun nonetheless, and Joshua had a lot of practice counting while Grandpa hid. He could have played for hours. We rolled home to Newport in peace, as both kids napped. Rick worked on his dad's computer while the kids talked Grandma into more cartoons. (Katie loves Max and Ruby. Joshua loves the Wonder Pets.) It was exciting to see Uncle Kim, home from his adventures in Florida, and we are very happy to hear that Auntie Michelle is feeling better. It was a nice treat to see Cousin Colleen, too. Katie was happy to unbutton her shirt each time she saw someone new. She wants to show off her port. It seems we are making progress in this one area at least.
This leads me to the (sort of) bad news. Katie's counts are down. We knew this would happen. The medications Katie has to have kill rapidly dividing cells indiscriminately; low blood counts indicate that the medications are effective, so that is good news. She will have to return to relative isolation in our home, though, and that is bad news for the master mingler. While she did not have a transfusion today, she is anemic. The doctors elected to wait and see since Kate has so much energy. We will see her pediatrician each day for the next three days, so Dr. Bannach can keep an eye on her, and a quick blood test Thursday will determine whether or not we return to Burlington on Friday for blood products. If all goes well, Katie will have a nice long weekend--no shots for three days--and return to Burlington Monday morning.
While the drive is a drag and some aspects of Kate's treatment are unpleasant at best, I remain profoundly grateful to the folks in Burlington who are caring for our beautiful baby. It is a little strange to know the pharmacist at Fletcher Allen by his first name, for example, but he always makes sure we have what we need. The nurse practitioners who work for the hematology/oncology department are fabulous. The anesthesiologist who put Katie to sleep today was awesome. She drifted off quietly while watching a movie; she never even knew he was starting her sedation. This is an amazing team. They are so good to us. WOKO, a local radio station, was broadcasting live from the lobby of the hospital today, and I listened while waiting for the pharmacy. Their "Big Change Roundup" has raised $133,000 for the Vermont Children's Hospital thus far--six tons of change! I cannot imagine a better way to "spend" my change. We are so lucky that this facility exists right in our own backyard.
On that cheerful note, we are still happy to have come home. We are looking forward to a good night's sleep. Katie is still zipping about the house, of course, but I have friendly thoughts about flannel sheets...Good night, all.
Speaking of home, we made the rounds today and visited all of Katie's grandparents in their homes. We had lunch with my parents, we had dinner with Rick's parents, and we dropped Joshua off at Nana's house for a sleepover. Our kids are so lucky to have such incredible grandparents. The kids were very happy to play hide and seek with my dad. Katie didn't really get it--"I'm in here, in the closet," she would yell as Grandpa Heart looked for her--but she had fun nonetheless, and Joshua had a lot of practice counting while Grandpa hid. He could have played for hours. We rolled home to Newport in peace, as both kids napped. Rick worked on his dad's computer while the kids talked Grandma into more cartoons. (Katie loves Max and Ruby. Joshua loves the Wonder Pets.) It was exciting to see Uncle Kim, home from his adventures in Florida, and we are very happy to hear that Auntie Michelle is feeling better. It was a nice treat to see Cousin Colleen, too. Katie was happy to unbutton her shirt each time she saw someone new. She wants to show off her port. It seems we are making progress in this one area at least.
This leads me to the (sort of) bad news. Katie's counts are down. We knew this would happen. The medications Katie has to have kill rapidly dividing cells indiscriminately; low blood counts indicate that the medications are effective, so that is good news. She will have to return to relative isolation in our home, though, and that is bad news for the master mingler. While she did not have a transfusion today, she is anemic. The doctors elected to wait and see since Kate has so much energy. We will see her pediatrician each day for the next three days, so Dr. Bannach can keep an eye on her, and a quick blood test Thursday will determine whether or not we return to Burlington on Friday for blood products. If all goes well, Katie will have a nice long weekend--no shots for three days--and return to Burlington Monday morning.
While the drive is a drag and some aspects of Kate's treatment are unpleasant at best, I remain profoundly grateful to the folks in Burlington who are caring for our beautiful baby. It is a little strange to know the pharmacist at Fletcher Allen by his first name, for example, but he always makes sure we have what we need. The nurse practitioners who work for the hematology/oncology department are fabulous. The anesthesiologist who put Katie to sleep today was awesome. She drifted off quietly while watching a movie; she never even knew he was starting her sedation. This is an amazing team. They are so good to us. WOKO, a local radio station, was broadcasting live from the lobby of the hospital today, and I listened while waiting for the pharmacy. Their "Big Change Roundup" has raised $133,000 for the Vermont Children's Hospital thus far--six tons of change! I cannot imagine a better way to "spend" my change. We are so lucky that this facility exists right in our own backyard.
On that cheerful note, we are still happy to have come home. We are looking forward to a good night's sleep. Katie is still zipping about the house, of course, but I have friendly thoughts about flannel sheets...Good night, all.
Sunday, March 2, 2008
Let it Snow, Let it Snow...
I finally played in the snow today. Susan got me off my derriere and out into the woods. What a beautiful day to ski--warm and sunny. It was paradise. It would have been quiet except that I talked and talked...It was nice to have some grownup company. Many thanks to Susan for reminding me that there are good reasons to live in northern Vermont.
Joshua and Rick are skiing this afternoon. (We take turns!) Joshua is especially excited about skiing with Uncle Mike, who has never seen Joshua in action. This should be interesting for all of them.
Joshua is also gearing up for another trip to Burlington. We are heading down tonight because Katie's appointment is early Monday morning. We will stay with Grandma Kathy and Grandpa Heart, who have designated one portion of their house the Kelley suite. We can be up at all hours, playing and reading stories, without waking anyone. Joshua loves the television at Grandpa's house--it has cable and, therefore, cartoons--and he looks forward to playing with his light sabres. He meets with the hospital's in-house therapist tomorrow. She met him last Monday and wants to spend more time with him. She plans to talk with him more openly about Katie's leukemia and to ferret out his questions.
Katie does not know we are heading to the hospital. She is simply happy to be visiting with Grandma. Devil Child will tear the house apart in ten seconds, of course, but Grandma will forgive her. :) She has plans for Grandma's kitchen, too--something about tater tots... Believe it or not, her diet has returned to normal with some minor modifications. She eats blueberries and strawberries again. She asks for carrots. We have not had to cook fish sticks in a long time. Personally, I am thrilled. I have a bad feeling I may always associate the smell of fish sticks with the sad and frustrating parts of this episode. If only I could talk Katie out of popcorn, we would be all set.
Our day begins with a lumbar puncture at 8:30--yikes--but it should not be a particularly long day. We'll get in touch if we learn anything interesting.
PS--Congratulations to the Ranger boys, who won the Division III championship for the first time in the school's history! Well done, gentlemen!
Joshua and Rick are skiing this afternoon. (We take turns!) Joshua is especially excited about skiing with Uncle Mike, who has never seen Joshua in action. This should be interesting for all of them.
Joshua is also gearing up for another trip to Burlington. We are heading down tonight because Katie's appointment is early Monday morning. We will stay with Grandma Kathy and Grandpa Heart, who have designated one portion of their house the Kelley suite. We can be up at all hours, playing and reading stories, without waking anyone. Joshua loves the television at Grandpa's house--it has cable and, therefore, cartoons--and he looks forward to playing with his light sabres. He meets with the hospital's in-house therapist tomorrow. She met him last Monday and wants to spend more time with him. She plans to talk with him more openly about Katie's leukemia and to ferret out his questions.
Katie does not know we are heading to the hospital. She is simply happy to be visiting with Grandma. Devil Child will tear the house apart in ten seconds, of course, but Grandma will forgive her. :) She has plans for Grandma's kitchen, too--something about tater tots... Believe it or not, her diet has returned to normal with some minor modifications. She eats blueberries and strawberries again. She asks for carrots. We have not had to cook fish sticks in a long time. Personally, I am thrilled. I have a bad feeling I may always associate the smell of fish sticks with the sad and frustrating parts of this episode. If only I could talk Katie out of popcorn, we would be all set.
Our day begins with a lumbar puncture at 8:30--yikes--but it should not be a particularly long day. We'll get in touch if we learn anything interesting.
PS--Congratulations to the Ranger boys, who won the Division III championship for the first time in the school's history! Well done, gentlemen!
Saturday, March 1, 2008
Snowshoes and Stories
Another day passes quietly in the north country. Joshua is helping Rick with some fencing at the barn. They are fencing in teh woods, extending the pasture and providing the horses with some variety. Rick reports that Joshua is tromping through the woods like a pro; the snowshoes are just extensions of his own big feet. He will be one tired little cowpoke when he returns. Rick sounds very happy to be working away in the snow. I can hear him smiling through the phone. Katie has played all day long, screeching and cackling through the house. She finally relented and agreed to stories, but I read for nearly an hour before she conked out. Curious George was today's favorite, but Katie wasn't willing to nap until we had visited the strange little town of Chewandswallow twice. She is very proud of her pink toenails. They won't last long, as she would not sit still for a second coat, but I did manage to paint every toe this time--you can tell that we are all on vacation!
There is a pot of beef stew on the counter, and I am thinking of making some fresh coffee. It's a good day to hunker down. I hope you're all enjoying the snow. Best of luck to the Ranger boys, who play for the Division III championship tonight. Best wishes to all of you.
There is a pot of beef stew on the counter, and I am thinking of making some fresh coffee. It's a good day to hunker down. I hope you're all enjoying the snow. Best of luck to the Ranger boys, who play for the Division III championship tonight. Best wishes to all of you.
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