I like days like today. Katie played so hard that she is exhausted tonight. We had a play date at midday today with two of her cousins, ages three and five. She ran, she shouted and screamed, she kicked balls and played with dolls. She was a kid and a happy kid at that. Her brother was no slouch either. He had his own good time running, playing and pretending to be a dinosaur.
Josh is looking forward to skiing again on Sunday, but Katie is looking forward to spring. She was lamenting the fact that her swing set is buried in snow. She wants to run and play outside, but she is not a big fan of snow and cold temperatures. I can't blame her. If I were under three feet tall, playing in this much snow would seem daunting.
Katie has been on her new medications now for five days and has shown absolutely no ill effects. We are incredibly pleased that she is still taking her treatments so well. Every good day is a another blessing.
Friday, February 29, 2008
Thursday, February 28, 2008
Just Another Day
This day was rather quiet and uneventful. Amy and Josh headed off to Barre to watch the Lake Region Boys play some basketball while Katie and I headed to Newport. Katie received her third and final shot for the week at Newport Pediatrics this afternoon, and we visited grandma and grandpa Kelley for a bit before coming home. We then took a nap - yes both of us. After nap time, we had dinner, fed the horses and settled in for a little Dora before bed.
Katie was full of energy again today and in a very good mood. Even the shot didn't dampen her spirits for too long and she was smiling again before we had even reached the car to leave. She lost some weight too. The doctor's scale reported that she now weighs in at 27.5 pounds. She is losing some of that steroid induced weight she put on during that first month of treatment.
All in all, things are still looking pretty good for Katie and the rest of the family right now. We are looking forward to not having to go to a doctor's office or hospital for the next three days, and we are hoping to get out and play in some of this new snow.
Katie was full of energy again today and in a very good mood. Even the shot didn't dampen her spirits for too long and she was smiling again before we had even reached the car to leave. She lost some weight too. The doctor's scale reported that she now weighs in at 27.5 pounds. She is losing some of that steroid induced weight she put on during that first month of treatment.
All in all, things are still looking pretty good for Katie and the rest of the family right now. We are looking forward to not having to go to a doctor's office or hospital for the next three days, and we are hoping to get out and play in some of this new snow.
Wednesday, February 27, 2008
Playing and Relaxing
Katie Grace has finally succumbed. She is asleep. Little Katie No Nap has returned. She slept for a whopping ten minutes on the way to the pediatrician's office in Newport today, and that was it. While she pretended to sleep in the doctor's office, she was ever vigilant; she knew what to expect, and she watched the adults who stepped into the exam room very carefully. It was good to see Dr. Bannach again today. I know that lots of adults administer subcutaneous shots to their little ones, but I'm just not prepared to be the bad guy. In all honesty, it was funny but also a little scary to leave the hospital on Monday with chemotherapeutic medications in a simple plastic bag. I can handle the pills, but the shots? Not yet.
This treatment cycle, which is called consolidation, includes six (6!) medications, some of which are new to us. Katie's reaction to these medications has been very good so far. She continues to play with abandon. You should have seen her zipping about the Barton library this afternoon in a game of hide and seek. She has this odd new habit of screeching like a demented dinosaur, not because her verbal skills are in danger (they are not--she cannot seem to stop talking!) but because she likes to make noise. We were lucky. It was nice and quiet today, and the library's other patrons were willing to ignore Katie's quirks. Joshua learned how to stamp the date on the book return cards, and Katie wrote me a "note" reminding me to return my books on time. (I've decided that this is what it says, anyway...) It was so much fun just to watch both kids enjoying a very normal activity.
Joshua and I are looking forward to a very exciting day tomorrow--Walmart, dinner out and a high school basketball game. While I am most excited about our trip to Walmart, Joshua is happiest about sharing dinner in a restaurant. We are both eager to cheer for the Ranger boys. It is fun, now that he is older, to take Joshua out on the town. My mother used to take us out on "dates," and we always felt good about the extra effort she made to spend time with us. The activity might tucker us out, but we will enjoy our day. I look forward to taking Katie out on such excursions when she is old enough to enjoy them, too.
Let's hope she sleeps late tomorrow. (It's not likely, but I can dream...) Good night, all.
This treatment cycle, which is called consolidation, includes six (6!) medications, some of which are new to us. Katie's reaction to these medications has been very good so far. She continues to play with abandon. You should have seen her zipping about the Barton library this afternoon in a game of hide and seek. She has this odd new habit of screeching like a demented dinosaur, not because her verbal skills are in danger (they are not--she cannot seem to stop talking!) but because she likes to make noise. We were lucky. It was nice and quiet today, and the library's other patrons were willing to ignore Katie's quirks. Joshua learned how to stamp the date on the book return cards, and Katie wrote me a "note" reminding me to return my books on time. (I've decided that this is what it says, anyway...) It was so much fun just to watch both kids enjoying a very normal activity.
Joshua and I are looking forward to a very exciting day tomorrow--Walmart, dinner out and a high school basketball game. While I am most excited about our trip to Walmart, Joshua is happiest about sharing dinner in a restaurant. We are both eager to cheer for the Ranger boys. It is fun, now that he is older, to take Joshua out on the town. My mother used to take us out on "dates," and we always felt good about the extra effort she made to spend time with us. The activity might tucker us out, but we will enjoy our day. I look forward to taking Katie out on such excursions when she is old enough to enjoy them, too.
Let's hope she sleeps late tomorrow. (It's not likely, but I can dream...) Good night, all.
Getting Into the New Routine
Sorry we didn't post yesterday. We have a new routine to get used to and we are on vacation so our schedule is a little looser than usual. It's easy to just keep putting things off and then forget to do them at all. For instance, bed times, nap times, and morning routine are all over the board and whenever we feel like doing it. The kids got to bed around 9:30 last night for no good reason at all. We just weren't paying attention to the time. The horses finally got their morning hay at 11am, and lunch will probably happen some time around 2pm. Oh well.
Yesterday, Tuesday, we went to visit Dr. Banach at Newport Pediatrics for the first of Katie's three visits per week. A pediatrician's office is notoriously full of germs and sick kids, so they make sure that Katie gets in just before they actually open for the day, and then she leaves out the back door so that she won't have see all of those germy but tempting toys and kids in the waiting room. The whole visit is over in under fifteen minutes.
In about thirty minutes, we will be heading to Newport for our second of the three trips this week. We already have numbing cream on Katie's leg where the needle will go in, and a Bandaid on top of that to keep the cream in place. For her, I think the Bandaid is the worst part. She hates having bandages and tape put on her because she knows it has to come off some time.
As a reward after going to see the doctor, we have arranged for some quiet time at the library. Our friend, Susan Guillmette is working at the Barton Library today and believes that it will be a slow day without many visitors venturing out on the snowy roads.
Katie is really looking forward to her visit to the library. Her mood and her energy are still good. The latest round of chemotherapy have yet to produce any nasty side-effects other than a slightly upset stomach yesterday that was easy to fix with a little Zofran. She is sleeping well and playing hard just as any little girl her age does.
Yesterday, Tuesday, we went to visit Dr. Banach at Newport Pediatrics for the first of Katie's three visits per week. A pediatrician's office is notoriously full of germs and sick kids, so they make sure that Katie gets in just before they actually open for the day, and then she leaves out the back door so that she won't have see all of those germy but tempting toys and kids in the waiting room. The whole visit is over in under fifteen minutes.
In about thirty minutes, we will be heading to Newport for our second of the three trips this week. We already have numbing cream on Katie's leg where the needle will go in, and a Bandaid on top of that to keep the cream in place. For her, I think the Bandaid is the worst part. She hates having bandages and tape put on her because she knows it has to come off some time.
As a reward after going to see the doctor, we have arranged for some quiet time at the library. Our friend, Susan Guillmette is working at the Barton Library today and believes that it will be a slow day without many visitors venturing out on the snowy roads.
Katie is really looking forward to her visit to the library. Her mood and her energy are still good. The latest round of chemotherapy have yet to produce any nasty side-effects other than a slightly upset stomach yesterday that was easy to fix with a little Zofran. She is sleeping well and playing hard just as any little girl her age does.
Monday, February 25, 2008
More from Monday
We are home and the kids are in bed. We got home just shy of 14 hours after we left for the day and the kids are tired. For that matter, so are the parents. Josh went with us today for the first time since coming to visit us in the hospital during our first stay. He got to watch as his sister had her port cleaned and accessed, as she was actually given anesthesia and put to sleep, and as she received her various chemotherapy infusions. He also got to while away the hours with us, just hanging out in the hospital room and the infusion bay. When we asked what his thoughts of the day were, he summed it up with one word - boring. He was sorry that his sister had to go through that, he definatley didn't want to have to go through that, but he also didn't want to have to stick around and wait for it all to happen either. I think he has a new appreciation for why we keep sending him to school even when we have to turn around and head to Burlington after dropping him off.
In addition to the discovery of AMol indicators that I mentioned in the earlier post, we also learned the results of Katie's MRD test. The test indicated that she has as many or fewer blasts left in her body as a perfectly healthy person without leukemia. That is very good news. Now we just have to work to keep those numbers from every coming back up. The finding of possible AMol (Acute myeloblastic leukemia type 5) is frankly terrifying, but the MRD results are very encouraging. If AMol was present in her body when this all started, it seems to be gone now. Success rates for AMol are just a lot lower than I would like them to be and the disease is considered rare instead of common like ALL.
As part of our new round of chemotherapy, we will be traveling to Newport Pediatrics 3 days per week to receive some of the chemo drugs subcutaneously. We will also be giving oral chemotherapy drugs at home in doses that vary by the day on a schedule that has me slightly confused. Luckily, our doctor really likes calendars and thinks everyone should use them. She made us a calendar of what to give, how much and when.
Because of the new round of chemo, we can expect Katie's blood counts to start dropping again and she will lose the energy that she has been enjoying so much over the last week and she will likely become neutropenic again which make her nauseous. Wish us luck.
In addition to the discovery of AMol indicators that I mentioned in the earlier post, we also learned the results of Katie's MRD test. The test indicated that she has as many or fewer blasts left in her body as a perfectly healthy person without leukemia. That is very good news. Now we just have to work to keep those numbers from every coming back up. The finding of possible AMol (Acute myeloblastic leukemia type 5) is frankly terrifying, but the MRD results are very encouraging. If AMol was present in her body when this all started, it seems to be gone now. Success rates for AMol are just a lot lower than I would like them to be and the disease is considered rare instead of common like ALL.
As part of our new round of chemotherapy, we will be traveling to Newport Pediatrics 3 days per week to receive some of the chemo drugs subcutaneously. We will also be giving oral chemotherapy drugs at home in doses that vary by the day on a schedule that has me slightly confused. Luckily, our doctor really likes calendars and thinks everyone should use them. She made us a calendar of what to give, how much and when.
Because of the new round of chemo, we can expect Katie's blood counts to start dropping again and she will lose the energy that she has been enjoying so much over the last week and she will likely become neutropenic again which make her nauseous. Wish us luck.
Oh My! What a Day.
We left our house at 7am this morning, arrived at Fletcher Allen by 9:15 and didn't leave the hospital again until 4:30 this afternoon. We found out all sorts of information today, including the fact that a research facility that has been testing Katie's early marrow and blood samples has found what they believe are monoblasts, a symptom of AMoL, not ALL. This new information has changed how Katie's chemotherapy will be handled in the future. She will now be receiving a combination of drugs and treatments designed to kill off both ALL and AML.
Today was the first day of this new attack on Katie's leukemia. She received no fewer than 4 different forms of chemotherapy drugs today. She received 1 via a lumbar puncture and 3 via her new port. The port worked like a charm even though Katie screamed like a banshee as they prepared to access her port. She screamed as they wiped the site with alcohol, and continued screaming as they accessed the port but the screaming never intensified as the needle went in. I don't think she felt a thing, she just didn't want anyone near her "boo boo".
Everything just seemed to take forever as we waited for one fluid or another to drain from the IV bag into her little body. We are currently visiting with Grandpa Art and Grandma Kathy, preparing for our trip home. I don't think I'll have a hard time falling asleep tonight.
I'll give a longer update when we get home.
Today was the first day of this new attack on Katie's leukemia. She received no fewer than 4 different forms of chemotherapy drugs today. She received 1 via a lumbar puncture and 3 via her new port. The port worked like a charm even though Katie screamed like a banshee as they prepared to access her port. She screamed as they wiped the site with alcohol, and continued screaming as they accessed the port but the screaming never intensified as the needle went in. I don't think she felt a thing, she just didn't want anyone near her "boo boo".
Everything just seemed to take forever as we waited for one fluid or another to drain from the IV bag into her little body. We are currently visiting with Grandpa Art and Grandma Kathy, preparing for our trip home. I don't think I'll have a hard time falling asleep tonight.
I'll give a longer update when we get home.
Sunday, February 24, 2008
Happy Weekend
We had a wonderful weekend!
Joshua had a terrific time with Nana, who spoils him rotten (!), and he skied at Burke today with Rick. You should see the video! His skills have improved so quickly, and he has such confidence on his skis--I am so impressed with him! He didn't get it from me--I will have a hard time catching him the next time we ski together. He is very excited about going to Fletcher Allen with us tomorrow. He wants to know more about what Katie's days in the clinic are like. We actually have to report to the Comfort Zone, since Katie has to have a lumbar puncture, but I will try to sneak Josh into the Children's Specialty Clinic upstairs, too, so he can see the infusion bay where Katie receives a lot of her medications. He has learned a lot from the picture book we have for the siblings of children with cancer--he knows all about "chemo shark"--but it must be hard for him to picture Katie in place of the book's central character. With any luck this will make Katie's illness more real but also less daunting, ie. Katie really is sick, but she will get well, too, because she has such wonderful (and friendly) doctors and nurses. We are actively looking for creative ways to spend quality time with Joshua this week, and he is looking forward to basketball games at the Barre Auditorium. (Go Rangers!) We are open to other good ideas you may have...
Katie just gave up pretending that she is sleeping and wandered into our room. ("I missed you, mommom. I missed you so much. Is that a turtle on your shirt?") She is becoming such a night owl! We may have to begin parenting in shifts. I'll put Joshua to sleep with stories while Katie and Rick watch movies and work on the computer. Katie knows that she has to return to the hospital tomorrow, but this doesn't appear to inspire any real interest in rest. While she isn't excited about visiting with the doctors, she is willing to venture forth, anyway, and she promises to behave herself. We'll take her sticker book along. She likes to work on her "project." She is currently singing the song her piggy bank sings. She is free to learn now that she is feeling better, and we want to take advantage of this opportunity.
Katie's treatment continues tomorrow, and we will have answers to some of our questions. It will be good to touch base with the doctors tomorrow and to get moving again. We'll let you know what we discover.
Have a great week.
PS--Many thanks to Suzanne for Dora sheets! Katie's reaction to them? "Wow--Cool!..." She has been spending too much time with Joshua, I think!
Reality Check
This last four to five days have provided quite a reality check and a view into just how much the chemotherapy is affecting Katie. Since her next round of chemotherapy was postponed until Monday, she has been nine days without any drugs in her body and she is finally acting like the little girl that we knew before she got sick.
It was impossible to tell how much the drugs were affecting her earlier because when we first brought her to the doctor she was feeling lethargic and yucky from having one cold after another, not getting any sleep at night and being anemic. That general feeling has just sort of stayed with her for the entire duration of her treatment so far with little burst of energy here and there to remind us that she was still the same little girl, she was just struggling.
Now that the chemo is gone she is full of energy (we have to force nap time and bed time now), she is playing all day long, running around the house, dancing, jumping, giggling and just being a kid. This is, of course, a brief respite because the chemo will start up again tomorrow and it has to to continue battling the leukemia in her blood and bone marrow. But it has been nice to have our healthy feeling little girl back for a few days.
This morning, her last day without chemo, we are going to do a slightly brave, probably stupid thing and take her out to breakfast at Parson’s Corner. It is a small, family owned restaurant run by our neighbor and the kids just love eating pancakes there. Her blood counts are all good and she is allowed to have visitors and get out of the house, so we are expecting this to be a positive experience with no negative consequences.
Have a nice day. We will be.
It was impossible to tell how much the drugs were affecting her earlier because when we first brought her to the doctor she was feeling lethargic and yucky from having one cold after another, not getting any sleep at night and being anemic. That general feeling has just sort of stayed with her for the entire duration of her treatment so far with little burst of energy here and there to remind us that she was still the same little girl, she was just struggling.
Now that the chemo is gone she is full of energy (we have to force nap time and bed time now), she is playing all day long, running around the house, dancing, jumping, giggling and just being a kid. This is, of course, a brief respite because the chemo will start up again tomorrow and it has to to continue battling the leukemia in her blood and bone marrow. But it has been nice to have our healthy feeling little girl back for a few days.
This morning, her last day without chemo, we are going to do a slightly brave, probably stupid thing and take her out to breakfast at Parson’s Corner. It is a small, family owned restaurant run by our neighbor and the kids just love eating pancakes there. Her blood counts are all good and she is allowed to have visitors and get out of the house, so we are expecting this to be a positive experience with no negative consequences.Have a nice day. We will be.
Saturday, February 23, 2008
Vacation at Last
(With apologies to those of you who are not on vacation this week...)
Katie continues to thrive. She plays hard, as if she is making up for lost time. She talks nonstop. She cracks jokes. She even runs.
The rest of continue to hang on. I'm feeling droopy for some reason today, and Joshua is struggling. Rick is napping. I don't think we realize how draining this process is when we are engaged in the struggle. We just keep moving. Katie is energetic and enthusiastic now. She is enjoying her treatment vacation. We have let down our guard, and because we have stopped moving, we realize how tired we are and how this process challenges us emotionally. Joshua is having tantrums again. I think that he is just exhausted. As much as I would like to tell you that we are gearing up to suck the life out of every precious minute of this vacation, I think what we really need is just some time to mend. It is so hard to be positive all the time. The great irony is that it is easier, now, to be positive and yet I feel less healthy. I do not feel less positive. I am prepared to count the minutes of Katie's healthy days as great blessings. I just feel tired and antsy--like I want to redecorate our whole house but I just can't quite settle down into any project just yet.
I shouldn't complain. Katie's health is remarkable. Those of you who have known her a long time would recognize Katie again. She has fat cheeks and fuzz for hair, but she is animated, bossy, affectionate and funny--ready to take on the world and win. I may simply need to borrow from her stores of energy for a few days. I think I may go to Newport to buy running shoes. Maybe I just need to get moving again.
Happy vacation to all of you. Think Spring!
Katie continues to thrive. She plays hard, as if she is making up for lost time. She talks nonstop. She cracks jokes. She even runs.
The rest of continue to hang on. I'm feeling droopy for some reason today, and Joshua is struggling. Rick is napping. I don't think we realize how draining this process is when we are engaged in the struggle. We just keep moving. Katie is energetic and enthusiastic now. She is enjoying her treatment vacation. We have let down our guard, and because we have stopped moving, we realize how tired we are and how this process challenges us emotionally. Joshua is having tantrums again. I think that he is just exhausted. As much as I would like to tell you that we are gearing up to suck the life out of every precious minute of this vacation, I think what we really need is just some time to mend. It is so hard to be positive all the time. The great irony is that it is easier, now, to be positive and yet I feel less healthy. I do not feel less positive. I am prepared to count the minutes of Katie's healthy days as great blessings. I just feel tired and antsy--like I want to redecorate our whole house but I just can't quite settle down into any project just yet.
I shouldn't complain. Katie's health is remarkable. Those of you who have known her a long time would recognize Katie again. She has fat cheeks and fuzz for hair, but she is animated, bossy, affectionate and funny--ready to take on the world and win. I may simply need to borrow from her stores of energy for a few days. I think I may go to Newport to buy running shoes. Maybe I just need to get moving again.
Happy vacation to all of you. Think Spring!
Friday, February 22, 2008
Visitors At Last
We finally are allowed to have visitors, and Katie's Uncle Kim and Aunt Michelle came for a visit. Katie looks pretty happy to see someone other that her parents or a doctor. :)
Why The Delay?
Not that we were anxious to give Katie more drugs and make her feel bad again, but we were really curious about the results of the MRD test and we wanted to know what the hold up was. Well, we found out.
Early on I think I wrote that we had chosen to take part on a study where Katie would get a chemotherapy regiment that was being tested for its effectiveness. The doctors promised us that the tests were very controlled and very safe and that her health and progress would be monitored very closely to make sure that the leukemia was killed off as quickly and completely as possible with as few long-lasting side effects as possible. That part sounded good, but so did the next part.
Because the study is nationwide, and lots of doctors and scientists are trying to find better cures for leukemia, many people would be looking at Katie's test results and sending their data back to Fletcher Allen. Essentially we would be getting a free second, third or even fourth opinion on her test results at times.
Well, it paid off because that is what is holding us up right now. Two research centers currently disagree about Katie's last test results and those results determine her next round of chemotherapy. So her marrow is being tested and retested to make sure that she gets the best treatment possible, using the most accurate information available. I am very happy to be participating in the study.
Early on I think I wrote that we had chosen to take part on a study where Katie would get a chemotherapy regiment that was being tested for its effectiveness. The doctors promised us that the tests were very controlled and very safe and that her health and progress would be monitored very closely to make sure that the leukemia was killed off as quickly and completely as possible with as few long-lasting side effects as possible. That part sounded good, but so did the next part.
Because the study is nationwide, and lots of doctors and scientists are trying to find better cures for leukemia, many people would be looking at Katie's test results and sending their data back to Fletcher Allen. Essentially we would be getting a free second, third or even fourth opinion on her test results at times.
Well, it paid off because that is what is holding us up right now. Two research centers currently disagree about Katie's last test results and those results determine her next round of chemotherapy. So her marrow is being tested and retested to make sure that she gets the best treatment possible, using the most accurate information available. I am very happy to be participating in the study.
Pictures From Yesterday
It has been a while now since Katie had her last dose of chemotherapy, and the side-effects are wearing off allowing her to feel good for longer periods of time. While I was at work yesterday, Katie and Amy spent most of the day playing around the house. Playing is still a very rare activity for Katie and we are always very happy to see it. She sures does seem to be enjoying her rocking horse.
Thursday, February 21, 2008
A Trip Postponed
Our Burlington trip has been postponed until Monday. For some reason the MRD test results are still not in, and doctors cannot administer the next round of chemo until those results arrive. I did speak with Heidi today, and she gave me a better sense of our treatment options for this next round. Both options are aggressive. We would all prefer the slightly less aggressive of the two aggressive options because it may mean fewer longterm challenges, but that option might not be available. Doctor Bradeen will let us know ASAP, and we'll pass along the information.
The good news is that Katie has had an incredible day. She has played all day long. She danced and sang. She practiced her ABCs. She painted, she colored and she made Playdoh dinosaurs. She ran around the house--she ran! While it would be good to get on with her treatment, I am secretly glad that Katie has had another few days to be a kid.
Rick and the two kids are curled up on the couch watching Harry Potter in action, and I am tempted to join them. It has been a long week. This next week is February vacation--eleven days to be a family. Life is good.
The good news is that Katie has had an incredible day. She has played all day long. She danced and sang. She practiced her ABCs. She painted, she colored and she made Playdoh dinosaurs. She ran around the house--she ran! While it would be good to get on with her treatment, I am secretly glad that Katie has had another few days to be a kid.
Rick and the two kids are curled up on the couch watching Harry Potter in action, and I am tempted to join them. It has been a long week. This next week is February vacation--eleven days to be a family. Life is good.
Wednesday, February 20, 2008
Caps for Katie
Just a quick update:
Miss Katie had a sleepy, pleasant day, the highlight of which was a visit to the horses. She misses her pals Chief and Charlie, and she was very happy to see them. As we buckled both kids into booster seats, it occurred to me that we have not been leaving the house much as a foursome. We have lots of time together at home, but we don't venture outside the house together. It was exciting to head out with my whole family in tow. It's the little things that count these days.
Katie has a low grade fever, but cultures came back negative--she doesn't have an infection--so we dared to make a surprise visit to Nana at Irasburg School. Nana had a surprise waiting for us. Students at Irasburg School raised money for Katie by paying to wear their hats today. We had no idea they were planning to pitch in. Students at Lake Region conducted a similar fundraiser, called Caps for Katie, at LR this past Friday. Filling the gas tank is so much less daunting thanks to these generous kids. If the kids' generosity is any indication of things to come, and I think it is, our community is in good hands. When Katie grows up and asks me about this experience, I will tell her that we learned how fortunate we are to live in a small town where people rally around their children. I don't cry very often about Katie's illness--crying just doesn't do much good--but tears come when I think about all the people we know (and the people we don't know) who pitch in to care for all of us. We know how lucky we are.
On another note, Katie's test results have not arrived yet, so we may not make our planned trip to Burlington tomorrow. Doctor Bradeen called to postpone her treatment. We'll let you know when we know more ourselves. Best of luck to those of you who eagerly await the February vacation: just two more days! It is so hard to be patient, isn't it? :)
Miss Katie had a sleepy, pleasant day, the highlight of which was a visit to the horses. She misses her pals Chief and Charlie, and she was very happy to see them. As we buckled both kids into booster seats, it occurred to me that we have not been leaving the house much as a foursome. We have lots of time together at home, but we don't venture outside the house together. It was exciting to head out with my whole family in tow. It's the little things that count these days.
Katie has a low grade fever, but cultures came back negative--she doesn't have an infection--so we dared to make a surprise visit to Nana at Irasburg School. Nana had a surprise waiting for us. Students at Irasburg School raised money for Katie by paying to wear their hats today. We had no idea they were planning to pitch in. Students at Lake Region conducted a similar fundraiser, called Caps for Katie, at LR this past Friday. Filling the gas tank is so much less daunting thanks to these generous kids. If the kids' generosity is any indication of things to come, and I think it is, our community is in good hands. When Katie grows up and asks me about this experience, I will tell her that we learned how fortunate we are to live in a small town where people rally around their children. I don't cry very often about Katie's illness--crying just doesn't do much good--but tears come when I think about all the people we know (and the people we don't know) who pitch in to care for all of us. We know how lucky we are.
On another note, Katie's test results have not arrived yet, so we may not make our planned trip to Burlington tomorrow. Doctor Bradeen called to postpone her treatment. We'll let you know when we know more ourselves. Best of luck to those of you who eagerly await the February vacation: just two more days! It is so hard to be patient, isn't it? :)
A Sleepy Morning
Amy has been writing the blog entries for days and now it is my turn. After Katie's 4am night the night before and her trip to the hospital last night, she is quietly recuperating in her bed right now, still soundly asleep. It is 9:45am.
I woke her up a couple of times during the night to check her temperature and change her diaper, but she fell back to sleep very quickly each time. The most recent temperature check was a lovely 97.7 degrees which is very close to normal for her.
She hasn't had any Tylenol since 5am and will not get any more for the rest of the day. Fletcher Allen called a little while ago to check on her and to tell me not to give her any more Tylenol. The doctors want to see how her body is responding this morning without the intervention of any drugs that would suppress a rise in temperature.
When one of my children sleeps this long, I start to get worried. I sneak into the room and watch their chests rise and fall to make sure they are breathing. I gently touch a forehead to check for fever. And when I can't take it any more, I sometimes even wake them up a little just to check their level of coherence. I am not worried about Katie yet because she was very aware of her surroundings when I last woke her up to take her temperature. She told me that she wanted to go back to sleep and she rolled her head so I could check her temperature in both ears. She then grabbed her blanket, snuggled in and closed her eyes tight. I quietly left the room--happy to see her resting peacefully.
I woke her up a couple of times during the night to check her temperature and change her diaper, but she fell back to sleep very quickly each time. The most recent temperature check was a lovely 97.7 degrees which is very close to normal for her.
She hasn't had any Tylenol since 5am and will not get any more for the rest of the day. Fletcher Allen called a little while ago to check on her and to tell me not to give her any more Tylenol. The doctors want to see how her body is responding this morning without the intervention of any drugs that would suppress a rise in temperature.
When one of my children sleeps this long, I start to get worried. I sneak into the room and watch their chests rise and fall to make sure they are breathing. I gently touch a forehead to check for fever. And when I can't take it any more, I sometimes even wake them up a little just to check their level of coherence. I am not worried about Katie yet because she was very aware of her surroundings when I last woke her up to take her temperature. She told me that she wanted to go back to sleep and she rolled her head so I could check her temperature in both ears. She then grabbed her blanket, snuggled in and closed her eyes tight. I quietly left the room--happy to see her resting peacefully.
Tuesday, February 19, 2008
Roller Coaster #2
Katie and I were both tired today after our Dora binge. (There is something nocturnal about Katie these days, and I don't care for it!) We had a pleasant but low key day. I should have known something was wrong when Katie took a long afternoon nap. Rick returned from work to find her sleeping on the couch and decided to wake her. One night of Katie' sleepless shenanigans would be enough, we thought. Unfortunately, he discovered that Katie had a fever, so our day changed, again, in the blink of an eye. Rick's parents popped in for a visit just as Rick was confirming that Katie's temperature was actually rising, and they took Joshua to Nana's house for a sleepover. Rick and I took Katie to North Country Hospital for blood counts, blood cultures, Tylenol and some antibiotics.
The odd thing about this trip is that we made the same trip just six weeks ago, and we ended up in the same room (Emergency Room #2) that we occupied then. This is the second Tuesday night we have spent in the ER at North Country, and the same staff was on duty. Weird. This is algo good news, however, as these are truly wonderful people. They have been following Katie's adventures. I hope they will read this entry. I hope they know how grateful we are for their help. I hope other folks who have not ventured into the ER at North Country will take my word for it: We are so lucky to have such kind and capable people working for us. I think they may have been as happy as we were to learn that Katie's counts were good, that her fever was responding to the Tylenol and that we could go home. (Of course, Katie was pretty fussy, so...)
Actually, despite the drama, we weathered this little storm pretty well. We are better prepared to accept that there will be bumps in the road. Katie is surprisingly good at submitting to routine medical procedures even when they are unpleasant. (She received two shots in the muscles of her thighs...blahhhh.) Joshua was amazing. He didn't panic or whine. He packed some toys, I packed his clothes for school and a lunchbox, and off he went. What a kid!
As I write, Katie is asleep in her own bed. She has a fever, and we don't know the exact cause, but she is fine and very happy to be home. We'll know more tomorrow. We're still waiting for results from the Minimal Residual Disease test, too, and we have to start planning for a trip to Burlington in which doctors will access and use Katie's port for the first time. Big doings. We'll keep you posted. Good night.
The odd thing about this trip is that we made the same trip just six weeks ago, and we ended up in the same room (Emergency Room #2) that we occupied then. This is the second Tuesday night we have spent in the ER at North Country, and the same staff was on duty. Weird. This is algo good news, however, as these are truly wonderful people. They have been following Katie's adventures. I hope they will read this entry. I hope they know how grateful we are for their help. I hope other folks who have not ventured into the ER at North Country will take my word for it: We are so lucky to have such kind and capable people working for us. I think they may have been as happy as we were to learn that Katie's counts were good, that her fever was responding to the Tylenol and that we could go home. (Of course, Katie was pretty fussy, so...)
Actually, despite the drama, we weathered this little storm pretty well. We are better prepared to accept that there will be bumps in the road. Katie is surprisingly good at submitting to routine medical procedures even when they are unpleasant. (She received two shots in the muscles of her thighs...blahhhh.) Joshua was amazing. He didn't panic or whine. He packed some toys, I packed his clothes for school and a lunchbox, and off he went. What a kid!
As I write, Katie is asleep in her own bed. She has a fever, and we don't know the exact cause, but she is fine and very happy to be home. We'll know more tomorrow. We're still waiting for results from the Minimal Residual Disease test, too, and we have to start planning for a trip to Burlington in which doctors will access and use Katie's port for the first time. Big doings. We'll keep you posted. Good night.
Roller Coaster #1
Much as I lamented the loss of another teaching day, I have to report that we enjoyed an amazing snow day. Katie had the most normal day she has had in a long time. She played with toys she hasn't even looked at in five weeks. She painted, she colored, she read stories, she sang songs, and she wrecked Joshua's Lincoln Log masterpiece. She giggled. She even danced. We had to intervene when the kids wouldn't share toys. As odd as this may sound, it was refreshing to separate two Kelley kids with enouth energy to play with--and to fight about--the same toys. Wonder Kid even ate foods that had not been processed--apples, carrots and whole grain bread. We had a brief glimpse of the Katie we knew B.L. (before leukemia). I can't describe what a treat this was and how it lifted our spirits to see her so happy.
Then our day took an odd turn. The good folks at Fletcher Allen called to check in and shared some good news. Katie's counts are high enough that she can have visitors! Katie really misses her buddies at day care. She needs to interact with other kids. She wants to go to the library. This is so exciting! We also started to speak about treatment options for Katie, though, too, and while that was exciting, it was vaguely disturbing. "Echocardiogram" is not a term I use a lot in my everyday life, and I don't associate it with Katie, so it was strange to start talking about long term effects of various treatment strategies, none of which are attractive. Katie will probably be just fine--she has survived quite a lot thus far, and with aplomb--but I spent time learning about some of the medications she may be exposed to in the next few months and trying to decide which are less terrifying. It was a grim reminder that we still have such a long way to go. Fortunately, the nurse practitioner at the clinic, whose name is Heidi, kept me laughing throughout our conversation. She has a gift. I didn't know whether to cry or to nap when our conversation had ended, so I retreated into my head and continued with research, the only marginally useful thing I could think to do.
I should have napped. Katie took a long afternoon nap--another treat, for us and for Katie--and woke up bouncing. She went to bed on time, snuggling in with stories and very content, but she popped up in our room as we were preparing for bed just after eleven p.m. That was the end of my night. The wiggling and energetic Katie insisted that we eat some more and that we watch Dora. I gave in when it became readily apparent that she had no use for a bed whatsoever, and we adjourned to the living room, where we remained until four o'clock in the morning. Katie laughed, she sang along with Dora, and she happily ordered me around our kitchen, but she would not return to bed. Thanks to Grandma Kathy, Katie has a new Dora book about camping, and I can deliver some of its pages verbatim for anyone who is interested. I was so thankful to return to bed for a few hours early this morning. If only that had been the end of our adventure...
Then our day took an odd turn. The good folks at Fletcher Allen called to check in and shared some good news. Katie's counts are high enough that she can have visitors! Katie really misses her buddies at day care. She needs to interact with other kids. She wants to go to the library. This is so exciting! We also started to speak about treatment options for Katie, though, too, and while that was exciting, it was vaguely disturbing. "Echocardiogram" is not a term I use a lot in my everyday life, and I don't associate it with Katie, so it was strange to start talking about long term effects of various treatment strategies, none of which are attractive. Katie will probably be just fine--she has survived quite a lot thus far, and with aplomb--but I spent time learning about some of the medications she may be exposed to in the next few months and trying to decide which are less terrifying. It was a grim reminder that we still have such a long way to go. Fortunately, the nurse practitioner at the clinic, whose name is Heidi, kept me laughing throughout our conversation. She has a gift. I didn't know whether to cry or to nap when our conversation had ended, so I retreated into my head and continued with research, the only marginally useful thing I could think to do.
I should have napped. Katie took a long afternoon nap--another treat, for us and for Katie--and woke up bouncing. She went to bed on time, snuggling in with stories and very content, but she popped up in our room as we were preparing for bed just after eleven p.m. That was the end of my night. The wiggling and energetic Katie insisted that we eat some more and that we watch Dora. I gave in when it became readily apparent that she had no use for a bed whatsoever, and we adjourned to the living room, where we remained until four o'clock in the morning. Katie laughed, she sang along with Dora, and she happily ordered me around our kitchen, but she would not return to bed. Thanks to Grandma Kathy, Katie has a new Dora book about camping, and I can deliver some of its pages verbatim for anyone who is interested. I was so thankful to return to bed for a few hours early this morning. If only that had been the end of our adventure...
Monday, February 18, 2008
Snow Day #3 (We're Not Kidding...)
Welcome to a rainy Monday morning in the Kingdom, where road conditions have forced ANOTHER snow day. We will be teaching in July. My friends have been telling me to enjoy the free days--I'm not using up my precious sick days if we're all home on a snow day. I miss teaching, though. Katie's illness and the weather have made this semester a choppy experience at best so far. It would be nice just to teach--to see the same kids every day, to grade papers, to enter grades, to run the photocopier. Sigh...
The good news is that the kids continue to do well. Joshua is glad to have another day at home. Katie just had her first real shower in weeks. Nausea has really settled in, but the antiemetic works quickly and well. We had a party yesterday: Chinese takeout for four! We have been limiting sodium for Katie (did you know they make low sodium hot dogs?), but I thought that maybe the kids deserved a little treat, so we splurged. Katie is officially finished with induction, and most of our doctors have said that it gets easier from here on in. It seemed like we might be overdue for a celebration. Joshua and Rick picked up takeout on their way home from skiing, and we had some fun. You should have seen their greasy little faces!
Once we had cleaned up our mess--Katie can spread rice through three counties in just minutes--we did some painting. We even shared a bedtime story. Joshua and I have been reading Little House on the Prairie, and Katie joined us in time to learn about fording rivers in covered wagons. She was enthusiastic and engaged, asking questions and retelling the story. Joshua was surprisingly patient with her interruptions. It is so much more fun to have time at home together when both the kids have energy enough to play and learn. Katie is currently dressed in an outfit she chose herself--a flowered shirt and striped pants. It seems her bossiness may be returning. She is pulling at the drawstrings on my pajama pants, looking for more breakfast and a good book. It may be a Laura Ingalls Wilder kind of day.
The good news is that the kids continue to do well. Joshua is glad to have another day at home. Katie just had her first real shower in weeks. Nausea has really settled in, but the antiemetic works quickly and well. We had a party yesterday: Chinese takeout for four! We have been limiting sodium for Katie (did you know they make low sodium hot dogs?), but I thought that maybe the kids deserved a little treat, so we splurged. Katie is officially finished with induction, and most of our doctors have said that it gets easier from here on in. It seemed like we might be overdue for a celebration. Joshua and Rick picked up takeout on their way home from skiing, and we had some fun. You should have seen their greasy little faces!
Once we had cleaned up our mess--Katie can spread rice through three counties in just minutes--we did some painting. We even shared a bedtime story. Joshua and I have been reading Little House on the Prairie, and Katie joined us in time to learn about fording rivers in covered wagons. She was enthusiastic and engaged, asking questions and retelling the story. Joshua was surprisingly patient with her interruptions. It is so much more fun to have time at home together when both the kids have energy enough to play and learn. Katie is currently dressed in an outfit she chose herself--a flowered shirt and striped pants. It seems her bossiness may be returning. She is pulling at the drawstrings on my pajama pants, looking for more breakfast and a good book. It may be a Laura Ingalls Wilder kind of day.
Sunday, February 17, 2008
Good Morning Princess
A wonderful and rare thing occured last night. Katie slept through the night again in her own bed. She woke up this morning to an exploded diaper that took a little while to clean up, but after a sponge bath and a change of clothes she headed down stairs for her breakfast of champions. Her choice of foods this morning included a blueberry bar, a granola bar, some cereal, some graham crackers the hot dog you can see her eating in this picture.In the picture, she is wearing her Dora dress and her princess tiara. What you can't see in the picture is her magic wand lying beside her on the floor which really completes the princess picture.
She is in a good mood this morning, but a little weaker than I am used to seeing her. The meds have really begun to affect her gross motor control and she can no longer stand up or sit up by herself. Her muscles simply don't respond accurately enough or with enough power to move her little body. Once she is up, she can still walk but she is very shaky and unsteady on her feet. She usually just holds one of our hands for balance as she totters from the living room to the kitchen to peruse the food options in the fridge.
Saturday, February 16, 2008
Dora Pajamas!
We have had a quiet day--lots of regular Saturday events like basketball, grocery shopping, the library and chores. It really is nice to have a regular day. Katie feels relatively good, and Joshua has had a lot of fun with Nana and with Susan Guilmette in the last few days. Joshua loves the light sabers that Grampa Heart picked out for him, and Katie loves the Dora pajamas that Auntie Heather found. (Go, Auntie Heather!) Katie is beginning to experiment with hats. Many thanks to those of you who are working to cover her nearly bald little head. It was a special treat to hear from Uncle Ryan this afternoon. He is in Tennessee, and we have not been able to contact him; we are thrilled to hear of his success (congratulations!) and look forward to seeing him soon. Enjoy the photos.
Friday, February 15, 2008
Photos of the Day
Here 
are a few photos
that I took at the hospital today. 
We arrived at 10:30 and waited until 1:30 before Katie went in for surgery. Remember, she hadn't eaten since 9pm last night. She was really good about food though and we got very few complaints from her today. We just told her it was a "hungry day" and that seemed to suffice. Three of these photos are of her and/or Amy waiting for surgery time to roll around while the fourth photo of Katie with her shirt off shows the incisions on her chest and neck where the doctors worked to place her new port. She has only complained about a little bit of pain, but we gave her Tylenol with codeine and that seemed to fix the problem. In a couple of days, her incisions will heal over well enough to get wet, and then we can move from the sponge bath back into the shower/bath. That will be a special treat.Home Again, Home Again, Jiggety Jig
I don't feel much like dancing a jig, actually, but I am very happy to be home. This was a long, hard day, but we are safe and sound in our own little casa. (My Spanish is improving, too!) Rick has pictures that document our adventure (only Rick would photograph this terrible day!), and he has promised to post some, so I will be quick. I simply wanted to tell you what a fierce and powerful young woman Miss Katie is. She spent most of the morning playing possum. It's an odd strategy, but also effective. When she wasn't ignoring the adults who intended her harm, she was screeching at anyone foolish enough to get close. While this was not pleasant, it did renew my faith in Katie; she is a survivor.
We don't have any updates yet. We won't have test results until Monday or Tuesday. The surgery went well, though, and Katie now has a port in her chest through which doctors will administer medications--no more PICC line. Further good news: Barring disaster, we will not have to travel to Burlington until next Thursday. I'm so glad Katie wil have some time to recuperate.
Thanks to Auntie Heather, who brought us lunch. Thanks to Grandma Kathy and to Grandpa Heart, who kept us company. Thanks to generous souls who raised the money we spent trying to feed the insatiable Katie, who ate eleven (!!!) chicken nuggets on the way home. We look forward to sharing more good news with all of you soon.
We don't have any updates yet. We won't have test results until Monday or Tuesday. The surgery went well, though, and Katie now has a port in her chest through which doctors will administer medications--no more PICC line. Further good news: Barring disaster, we will not have to travel to Burlington until next Thursday. I'm so glad Katie wil have some time to recuperate.
Thanks to Auntie Heather, who brought us lunch. Thanks to Grandma Kathy and to Grandpa Heart, who kept us company. Thanks to generous souls who raised the money we spent trying to feed the insatiable Katie, who ate eleven (!!!) chicken nuggets on the way home. We look forward to sharing more good news with all of you soon.
A Hungry Day Again
Today we are off to Fletcher Allen for all sorts of procedures. Several of them require Katie to be under anesthetic which means no food. So here is a picture of Katie having one of her last meals. That slice of pizza in her hand is slice number three, and that is her second helping of Tater Tots, chicken nuggets and fish sticks sitting in front of her.
Katie is already up and she has had her sponge bath. We are now getting ready to shuttle Josh off to school and head to Burlington. We don't expect to be back very early today if at all today so the blog posts might be late or even tomorrow. Wish us luck with this port placement surgery.
Katie is already up and she has had her sponge bath. We are now getting ready to shuttle Josh off to school and head to Burlington. We don't expect to be back very early today if at all today so the blog posts might be late or even tomorrow. Wish us luck with this port placement surgery.
Thursday, February 14, 2008
What's Love Got to Do With It?
Love, apparently, has everything to do with it. If I knew less about medicine, I would credit love with Katie's ongoing recovery. As it is, I'm pretty sure that love has supported the pharmacy's efforts in her body. We have been fortunate in our brief history as a family. We have always known great love. There is something about stress and sorrow, however, that inspires people to express their love in creative and perfectly practical ways. Phone calls, cards and letters remind us that we have the support of our community and that our family is really quite large. Casseroles nourish and sustain us. (I have never been much of a cook; I'll be hopeless by summer!) Gift cards make frequent trips to Burlington far less stressful; they help with the grocery bills when Katie wants two can of chicken noodle soup, three slices of pizza, carrots with dip and a glass of milk for dinner. There is nothing our extended family cannot do to provide for its children. There are challenging moments (!), but I try to count my blessings. This experience could be so much worse.
I wonder how I would survive this experience without all the help we have received. What would I do if I were a single parent and couldn't trade children with my husband some days? What would we do without health insurance? What if I couldn't afford prescriptions or the little treats that keep Katie positive? How would we care for Josh and make life normal for him without the army of people encouraging and entertaining him?
I am finally beginning to talk with other parents whose children have or have had leukemia. It is so good to talk with someone who shares or has shared this weird journey. We have been reading another family's blog about their daughter's experience with ALL--I check it at least twice a day, desperate for news of Maddie's health--and it is sort of soothing to share a vocabulary with another family. I sat Katie down today and showed her pictures of Maddie's port and her tubies. I'm not sure Katie gets it yet, but she was very excited to discover that Maddie has Dora pajamas. (Oh, well-it's a start!) I'm beginning to look forward to Thursday clinic days. I want Katie to see that she is not the only little kid with leukemia. I want her to know that other kids get sick, too, and that they get well. They lose their hair (Katie's is rapidly disappearing). They cry when they visit the doctor. They get medicines through their tubies. They watch movies. They hug their moms. They eat chicken nuggets. They are regular kids who just happen to share an unpleasant experience that will challenge them but not beat them. We have taken to saying a mantra: "I love you. You love me. It's okay." If love were all it took...It sustains us, at the very least, and for that we are grateful.
I wonder how I would survive this experience without all the help we have received. What would I do if I were a single parent and couldn't trade children with my husband some days? What would we do without health insurance? What if I couldn't afford prescriptions or the little treats that keep Katie positive? How would we care for Josh and make life normal for him without the army of people encouraging and entertaining him?
I am finally beginning to talk with other parents whose children have or have had leukemia. It is so good to talk with someone who shares or has shared this weird journey. We have been reading another family's blog about their daughter's experience with ALL--I check it at least twice a day, desperate for news of Maddie's health--and it is sort of soothing to share a vocabulary with another family. I sat Katie down today and showed her pictures of Maddie's port and her tubies. I'm not sure Katie gets it yet, but she was very excited to discover that Maddie has Dora pajamas. (Oh, well-it's a start!) I'm beginning to look forward to Thursday clinic days. I want Katie to see that she is not the only little kid with leukemia. I want her to know that other kids get sick, too, and that they get well. They lose their hair (Katie's is rapidly disappearing). They cry when they visit the doctor. They get medicines through their tubies. They watch movies. They hug their moms. They eat chicken nuggets. They are regular kids who just happen to share an unpleasant experience that will challenge them but not beat them. We have taken to saying a mantra: "I love you. You love me. It's okay." If love were all it took...It sustains us, at the very least, and for that we are grateful.
Quick Update
Here's the plan, folks:
Josh will go to school Friday per usual, and he will thoroughly enjoy skiing in all our new snow. We will drop him off on our way to Burlington, and Nana will pick him up at the end of the day for an overnight at her house. Joshua loves sleepovers!
Rick and I will take Katie to Burlington together--a rare opportunity for us to spend time together. This will be, I'm sorry to say, a hungry day, and Katie is not likely to be happy about this wrinkle in her all-day bingefest plans. We need to be in Burlington by 10:30, but her actual surgery begins at 12:30. This probably won't be much fun for Miss Katie either, but she will officially be done with the induction process, and the port they will give her tomorrow should make life so much easier. Katie has just one more dose of steroids to take this evening before a hiatus from the madness. We all look forward to putting steroids behind us for a time. Assuming that Kate's pain is manageable, we will return to Barton for a quiet celebration of Katie's progress through this adventure. Josh will go to basketball in the morning, and life will continue as normally as is possible at this time.
We may not have time or opportunity to write tomorrow, but we will share any information we receive when it comes in. The doctors will do a bone marrow aspiration and a lumbar puncture. They continue to look for leukemia cells in Katie's marrow and in the cerebrospinal fluid. They will also search for Minimal Residual Disease. Basically, they will look for damaged chromosomes again and work to confirm that Katie's leukemia is in remission. Keep your fingers crossed. It is absolutely amazing what the human body can withstand. It is absolutely amazing what doctors can do to support the body's efforts. We are grateful both for the miracle of modern medicine and for the miracle of Katie, who continues to waddle through her days with a cranky je ne sais quoi. What a character!
Happy Valentine's Day to my little family and to yours.
Josh will go to school Friday per usual, and he will thoroughly enjoy skiing in all our new snow. We will drop him off on our way to Burlington, and Nana will pick him up at the end of the day for an overnight at her house. Joshua loves sleepovers!
Rick and I will take Katie to Burlington together--a rare opportunity for us to spend time together. This will be, I'm sorry to say, a hungry day, and Katie is not likely to be happy about this wrinkle in her all-day bingefest plans. We need to be in Burlington by 10:30, but her actual surgery begins at 12:30. This probably won't be much fun for Miss Katie either, but she will officially be done with the induction process, and the port they will give her tomorrow should make life so much easier. Katie has just one more dose of steroids to take this evening before a hiatus from the madness. We all look forward to putting steroids behind us for a time. Assuming that Kate's pain is manageable, we will return to Barton for a quiet celebration of Katie's progress through this adventure. Josh will go to basketball in the morning, and life will continue as normally as is possible at this time.
We may not have time or opportunity to write tomorrow, but we will share any information we receive when it comes in. The doctors will do a bone marrow aspiration and a lumbar puncture. They continue to look for leukemia cells in Katie's marrow and in the cerebrospinal fluid. They will also search for Minimal Residual Disease. Basically, they will look for damaged chromosomes again and work to confirm that Katie's leukemia is in remission. Keep your fingers crossed. It is absolutely amazing what the human body can withstand. It is absolutely amazing what doctors can do to support the body's efforts. We are grateful both for the miracle of modern medicine and for the miracle of Katie, who continues to waddle through her days with a cranky je ne sais quoi. What a character!
Happy Valentine's Day to my little family and to yours.
Wednesday, February 13, 2008
The Only Way To Spend a Snow Day
This is how Amy and Katie are spending a portion of their snow day. We hope that you are all staying nice a warm and dry on this snowy morning too. :)
Snow Day #2 (Or is it 200?)
We may be serving our last school days in July, but it is nice to have the day at home together. Katie has emptied her belly--finally!--and is filling it back up. Josh looks forward to unusual treats like video games. Rick is giddy with the joy of a snow day that we didn't really need, as the snow has not started yet, and I am making coffee. Ahhhhh...Life is good.
Lazy fat flakes of the good stuff are beginning to fall. I hope you'll all have opportunities to enjoy playing in piles of them later in the day. We'll be watching Dora!
Lazy fat flakes of the good stuff are beginning to fall. I hope you'll all have opportunities to enjoy playing in piles of them later in the day. We'll be watching Dora!
Tuesday, February 12, 2008
Long Day #2 (Or is it 200?)
Katie and I drove to Burlington today for an early appointment that ran long--another nine hour day for Princess Kate. There is good news. Katie's white cells continue to divide and to multiply as they should; she has more healthy white cells than she has had in weeks. Thanks to some kind soul out there who remembered to give blood, Katie received a wonderful gift: healthy red blood cells to combat the anemia that leaves her so sluggish. I think of this as an especially fitting gift given that Valentine's Day approaches! The further good news is that Katie spent the day with Grandma Kathy, who continues to provide us with nourishment and good cheer. (Josh likes the Valentine's Day cookies, while Katie cannot get enough of the hospital's Southwest chicken wraps. Personally, I depend upon Grandma for deliveries of liquid caffeine in all its delicious forms. There is no accounting for tastes...)
Unfortunately, Katie continues to find many food items tasty despite ongoing problems with constipation. Lots of food goes in, but very little ever comes back out. She is absolutely miserable. The further problem is that the doctors are running out of medical solutions to our little dilemma. Katie takes two prescription laxatives now, and the doctors gave her an additional incentive today. She has had enough medical help that she should be able to pass a bowling ball. Katie has always been strong willed, however, and she is apparently refusing to cooperate. I cannot imagine why she refuses to go, as she is extremely uncomfortable. The aforementioned bowling ball would be smaller than the belly she carries around all day, and she complains constantly about belly pain. She hurts. The truly awful part is that I have yet to relieve her pain--a difficult truth to accept. Katie is increasingly good about articulating her needs--she is learning to communicate in this new language--but we cannot meet some of her needs. She has leg pain, for instance, and we knew to expect this, but it is still frustrating to note that the side effects have multiplied. When I talked with Dr. Homans Monday night, he told me that his last toddler patient (a little boy Katie's age) was absolutely miserable in the last few days of induction but that the situation improved not long thereafter. I am hanging on to this idea with a desperation born of fatigue and worry. It is comparatively easy to rely upon my sense of humor during the day, but more difficult to do so in the evening, when I get tired and grumpy. Say it with me, folks: Just two more days of steroids. Just two more days of steroids. Just two more days of steroids.
Tomorrow we learn more about plans for Friday's port placement. More about that when we have heard...
Best wishes. Thanks for listening.
Unfortunately, Katie continues to find many food items tasty despite ongoing problems with constipation. Lots of food goes in, but very little ever comes back out. She is absolutely miserable. The further problem is that the doctors are running out of medical solutions to our little dilemma. Katie takes two prescription laxatives now, and the doctors gave her an additional incentive today. She has had enough medical help that she should be able to pass a bowling ball. Katie has always been strong willed, however, and she is apparently refusing to cooperate. I cannot imagine why she refuses to go, as she is extremely uncomfortable. The aforementioned bowling ball would be smaller than the belly she carries around all day, and she complains constantly about belly pain. She hurts. The truly awful part is that I have yet to relieve her pain--a difficult truth to accept. Katie is increasingly good about articulating her needs--she is learning to communicate in this new language--but we cannot meet some of her needs. She has leg pain, for instance, and we knew to expect this, but it is still frustrating to note that the side effects have multiplied. When I talked with Dr. Homans Monday night, he told me that his last toddler patient (a little boy Katie's age) was absolutely miserable in the last few days of induction but that the situation improved not long thereafter. I am hanging on to this idea with a desperation born of fatigue and worry. It is comparatively easy to rely upon my sense of humor during the day, but more difficult to do so in the evening, when I get tired and grumpy. Say it with me, folks: Just two more days of steroids. Just two more days of steroids. Just two more days of steroids.
Tomorrow we learn more about plans for Friday's port placement. More about that when we have heard...
Best wishes. Thanks for listening.
Monday, February 11, 2008
A Long Day
I am sorry for not posting to the blog at some point earlier in the day, but it has just been one of those days. Katie just didn't feel good from the second she got up this morning and required quite a bit of attention. She didn't nap well either, so I didn't have much time to get away. However, when I did get a moment to myself I spent it working at my computer. I wasn't blogging though. I was grading student CAD drawings. I am still teaching full time, I just don't go to school every day. I run all of my classes through the internet and work keeps pouring in even when I am not physically with my students.
Amy and Katie are headed down to Burlington again tomorrow morning for a 10am appointment. Katie will get a checkup, some more chemo and a transfusion tomorrow. The transfusion will make it a long day, but Katie should feel much better after getting it.
Her weight is up a little more again this week, but not so drastically as last week. She now weighs in at 29 pounds, 1.5 ounces.
The visiting nurse stopped in this morning for a check up and to draw blood for testing before tomorrow's trip. I received a phone call from Fletcher Allen with the results this afternoon and they are encouraging. They are as follows:
WBC 1.6
Hemoglobin 7.6
Platelets 62000
ANC 976
All of those numbers are down a little except for the ANC, but that is what the transfusion will help with. The ANC is the interesting number here. That is the number that lets us know how her immune system is doing. At number of 500 or less, she is restricted to spending time with just her parents and her brother. Last week she was at 290. At nearly 1000, she could start getting more visitors except for one little problem. One of her chemotherapy drugs, the dexomethazone, is still suppressing her immune system so Katie will not get the benefits of having her ANC climb back to 976. We have been told to continue restricting visitors until her numbers are good and she is done taking the dexamethazone. For reference, I think I remember the doctors telling us early into this process that a ANC of 1500 or better was considered normal.
Katie is now sleeping soundly in her own bed, and I am going to climb into my bed. I am the one who has to go into school tomorrow morning while Amy and Katie head off to the hospital.
Amy and Katie are headed down to Burlington again tomorrow morning for a 10am appointment. Katie will get a checkup, some more chemo and a transfusion tomorrow. The transfusion will make it a long day, but Katie should feel much better after getting it.
Her weight is up a little more again this week, but not so drastically as last week. She now weighs in at 29 pounds, 1.5 ounces.
The visiting nurse stopped in this morning for a check up and to draw blood for testing before tomorrow's trip. I received a phone call from Fletcher Allen with the results this afternoon and they are encouraging. They are as follows:
WBC 1.6
Hemoglobin 7.6
Platelets 62000
ANC 976
All of those numbers are down a little except for the ANC, but that is what the transfusion will help with. The ANC is the interesting number here. That is the number that lets us know how her immune system is doing. At number of 500 or less, she is restricted to spending time with just her parents and her brother. Last week she was at 290. At nearly 1000, she could start getting more visitors except for one little problem. One of her chemotherapy drugs, the dexomethazone, is still suppressing her immune system so Katie will not get the benefits of having her ANC climb back to 976. We have been told to continue restricting visitors until her numbers are good and she is done taking the dexamethazone. For reference, I think I remember the doctors telling us early into this process that a ANC of 1500 or better was considered normal.
Katie is now sleeping soundly in her own bed, and I am going to climb into my bed. I am the one who has to go into school tomorrow morning while Amy and Katie head off to the hospital.
Sunday, February 10, 2008
A Perfect Patient and A Sassy Skier
What a nice quiet afternoon...Actually, Joshua and Rick had an exciting afternoon at Burke, but Katie and I spent some quiet time together relaxing. Katie ate her way through our kitchen before consuming most of a package of turkey pepperoni. (Our pizza is a little bland as a result!) Katie is a model patient some days, and this was one of them. While she is beginning to experience some really strange side effects (eyelid drooping is pretty weird!), she is increasingly good about participating in her own medical care. She asked for her evening meds tonight (!), and while she still can't get excited about taking a bath, she is willing--if not eager--to see the doctors Tuesday. "They're nice people," I said, and she nodded in agreement. "They're working hard to get you healthy," I said, and she agreed: "They take good care of me," she said. We are making progress!
Joshua is making excellent progress as a skier. He played with his dad in fresh powder this afternoon, and he got his first taste of the glades. I think he's a little young to be skiing in the woods, but Rick assures me that he did a terrific job and was fast but also careful and in control of his skis. Fortunately, Rick also made Joshua promise that he would never ski the glades in my company because I can't keep up and would have a heart attack watching him bound off into the woods. Yikes...
On another note, we wanted to tell you all how much we appreciate the phone calls we have received. It was nice to speak with Colleen and with Katie's Uncle John this weekend. It's nice to have company over the phone. Best wishes for a good week to you and to yours. Happy Valentine's Day, a little early, from my family to yours.
Joshua is making excellent progress as a skier. He played with his dad in fresh powder this afternoon, and he got his first taste of the glades. I think he's a little young to be skiing in the woods, but Rick assures me that he did a terrific job and was fast but also careful and in control of his skis. Fortunately, Rick also made Joshua promise that he would never ski the glades in my company because I can't keep up and would have a heart attack watching him bound off into the woods. Yikes...
On another note, we wanted to tell you all how much we appreciate the phone calls we have received. It was nice to speak with Colleen and with Katie's Uncle John this weekend. It's nice to have company over the phone. Best wishes for a good week to you and to yours. Happy Valentine's Day, a little early, from my family to yours.
Big Birthdays and Tingling Tastebuds
Many happy returns to Jeanie Beanie, Katie's grandmother in Newport. Jean celebrated her sixtieth birthday in style Saturday afternoon--she took Joshua ice fishing. (Not my first choice of a birthday activity either, but Josh really enjoyed it!)
Katie did help me make chocolate cupcakes with strawberry frosting for JB's birthday. The real shocker is that she then refused to eat them. The infamous Hessler-Kelley sweet tooth seems to have abandoned our girl, who still prefers protein products and starch. I worked so hard to train that kid's palate--veggie burgers and brown rice and blueberries. She wouldn't even try the hot fresh blueberry cobbler a neighbor delivered Friday, and she preferred frozen fish sticks to fresh fish fry from St. Paul's. There is no telling what her tastebuds will do next. It's a wild ride, friends.
We have not been riding horses, by the way, and it may be a long time before Katie can ride again. We don't talk much about Chief and Charlie so Katie won't know what she is missing. Many thanks to Nana, who has been caring for the horses during all our distractions. Thanks to Cahill and Cindy for their ongoing efforts to keep us going, too. We appreciate the rides, the use of the truck and the vitamin e. The little goodies realy do add up. We need some help with this new normal.
Joshua is looking forward to a good normal day. He plans to ski at Burke with Rick this afternoon. I hope that all of you will enjoy a little fun this weekend, too.
Katie did help me make chocolate cupcakes with strawberry frosting for JB's birthday. The real shocker is that she then refused to eat them. The infamous Hessler-Kelley sweet tooth seems to have abandoned our girl, who still prefers protein products and starch. I worked so hard to train that kid's palate--veggie burgers and brown rice and blueberries. She wouldn't even try the hot fresh blueberry cobbler a neighbor delivered Friday, and she preferred frozen fish sticks to fresh fish fry from St. Paul's. There is no telling what her tastebuds will do next. It's a wild ride, friends.
We have not been riding horses, by the way, and it may be a long time before Katie can ride again. We don't talk much about Chief and Charlie so Katie won't know what she is missing. Many thanks to Nana, who has been caring for the horses during all our distractions. Thanks to Cahill and Cindy for their ongoing efforts to keep us going, too. We appreciate the rides, the use of the truck and the vitamin e. The little goodies realy do add up. We need some help with this new normal.
Joshua is looking forward to a good normal day. He plans to ski at Burke with Rick this afternoon. I hope that all of you will enjoy a little fun this weekend, too.
Saturday, February 9, 2008
Riding the Recovery Rollercoaster
We have been riding the emotional rollercoaster lately. Katie's treatment really knocked her out last night, and she was very uncomfortable. She has had a terrible case of the blahs this morning. She was sluggish and mopey. While the television was on, the volume was very low, and no one could actually hear Stuart Little say anything, but Katie did not care. She stared in the general direction of the tv but couldn't focus long enough to take it in; she was in the zone. Fortunately, Katie finally admitted that she had a headache and that "belly hurt." Several medications later, she is perky and bright, eating and drinking and chattering up a storm. She ate MY bowl of chicken soup, and she has requested broccoli (a request with which we are happy to comply!). She is telling Dora what to do and how to do it in her inimitble Katie fashion, and she is grateful for every little bit of happiness: "Thank you for washing my blankie. Thank you for washing my sheets. Thank you for cooking me noodles. Thank you for starting the movie..." It is amazing what some Tylenol and an anti-emetic can do.We catch the occasional glimpse of our Katie, who continues to inspire me.
We are working hard to govern our own emotions, too, but some days are easier than others. We ride the rollercoaster, too. If you see us out and about, and we look happy, we probably are. We are working hard to stay positive and to enjoy our friends, our family and our work. It is much easier for us to remain focused and positive because we have such tremendous support. People we don't even know continue to care for us. Katie receives gifts in the mail--blankets, a beautiful backpack, cheerful cards, balloons and bears. We receive gifts of food, warm hugs, bright smiles and our community's best wishes. We know full well that Katie will survive this ordeal. Thanks to all of you, we will survive it, too!
We haven't figured out how best to express our gratitude or how to repay the myriad kindnesses from which we have benefitted, but we are committed to repaying our debt to the community.It is hard to accept help with grace. It is hard to know what to say. The kids at St. Paul's have made Katie a quilt, for instance, and it is beautiful. What a thoughtful and encouraging gift! Words just aren't strong or interesting enough to communicate what that means to us. We hope you all know how much we appreciate all your efforts on our behalf. We will "pay it forward" some one of these days. :)
We are working hard to govern our own emotions, too, but some days are easier than others. We ride the rollercoaster, too. If you see us out and about, and we look happy, we probably are. We are working hard to stay positive and to enjoy our friends, our family and our work. It is much easier for us to remain focused and positive because we have such tremendous support. People we don't even know continue to care for us. Katie receives gifts in the mail--blankets, a beautiful backpack, cheerful cards, balloons and bears. We receive gifts of food, warm hugs, bright smiles and our community's best wishes. We know full well that Katie will survive this ordeal. Thanks to all of you, we will survive it, too!
We haven't figured out how best to express our gratitude or how to repay the myriad kindnesses from which we have benefitted, but we are committed to repaying our debt to the community.It is hard to accept help with grace. It is hard to know what to say. The kids at St. Paul's have made Katie a quilt, for instance, and it is beautiful. What a thoughtful and encouraging gift! Words just aren't strong or interesting enough to communicate what that means to us. We hope you all know how much we appreciate all your efforts on our behalf. We will "pay it forward" some one of these days. :)
Sleeping Through the Night
Every now and then we get a lucky break. Last night, we got one of those breaks. Katie slept through the night in her own bed. In fact, it is 10 past 7 in the morning and she is still sleeping. Of course Amy got up a couple of times in the night just to see why Katie hadn't woken up yet, and I woke up first thing this morning in a small panic wondering the same thing, but she is genuinely asleep and sleeping quite soundly. I am very happy for her. She needed the rest. Sometimes the chemo really sucks the energy out of her.
Friday, February 8, 2008
We're Back
It's Friday, so it was time for a trip to Fletcher Allen to visit with the doctor and receive some more chemotherapy. The blood tests from yesterday indicate that Katie is still holding her own and in no need of a transfusion at this time. In fact, her blood cell counts in all areas are slowly starting to climb a little. She is still neutropenic but she is also still very healthy.
The doctor gave us an extra laxative prescription to help us help her move food out as fast as it is going in. Hopefully that will make her more comfortable. At this point, she looks pretty content.
She was in good spirits for the trip today even if she wasn't high energy. She didn't get too upset at the doctors or nurses who came to visit and she took the chemo while quietly watching Dora in her hospital bed/chair.
Right now, she is resting to the point of almost sleeping with one eye partially open so she can watch a movie while lying on her fold-out Dora sofa/bed. She didn't nap that well in the car because she wanted to lie down and was a little cranky that she had to stay in her car seat, so I don't expect this half-awake state to last very long. The long trips back and forth to Burlington take a lot out of her.
The doctor gave us an extra laxative prescription to help us help her move food out as fast as it is going in. Hopefully that will make her more comfortable. At this point, she looks pretty content.
She was in good spirits for the trip today even if she wasn't high energy. She didn't get too upset at the doctors or nurses who came to visit and she took the chemo while quietly watching Dora in her hospital bed/chair.
Right now, she is resting to the point of almost sleeping with one eye partially open so she can watch a movie while lying on her fold-out Dora sofa/bed. She didn't nap that well in the car because she wanted to lie down and was a little cranky that she had to stay in her car seat, so I don't expect this half-awake state to last very long. The long trips back and forth to Burlington take a lot out of her.
Thursday, February 7, 2008
Just A New Picture
Not much to say right now. Today went something like yesterday, but I was at work and Amy was home. She might find time to add to the blog later, but for now I wanted to show you just how much she has changed in the last month. The top right picture is a picture of Katie in early January of this year, so long ago. The other two pictures are of her tonight. Click on the picture for a larger version.
Wednesday, February 6, 2008
A Toddler on Steroids is Scary
I don't think Katie went one entire hour today without eating something, and usually lots of something. She ate so much today that the skin around her belly is stretched tight like a water balloon about to burst. Amy and I failed to communicate accurately about how much of what food she has been eating, and I'll admit that we have both been giving in to her raging temper tantrums and giving her whatever she wants most of the time. However, in the last two days she managed to get us to feed her mozzarella cheese whenever she wanted it. "what's that Honey? You want more cheese? OK. Just stop crying." That is how the days went. Well, we just added up all of the empty string cheese packages and the missing blocks of cheese. In total, she has now eaten 3lbs of cheese in two days. On top of that there has been plenty of pasta and an amazing number of hot dogs. She is growing so big, so fast that I wouldn't even recognize her if I didn't know it was her. The diapers that were way too big on her at the beginning of this whole mess are now stretched to the max and barely clinging to her fast growing keister. Right now, the steroids are scaring me more than the chemotherapy. Oh and did I mention the constipating effect of cheese? For so much going in there isn't much coming out...
A Long Night
Katie decided that sleep was not as important as food last night, and she kept us up most of the night asking for and then demanding food every hour on the hour. I hate steroids. The steroids make her hungry around the clock, and now that she is starting to feel better and have more energy more of the time, she wants to act on that hunger more and more. My little girls is plumping up faster than a Butterball turkey. Her latest craving is for mozzarella cheese, and she can't get enough of it. She is capable of eating a pound in one day and asking for more.
Since she was up almost all night, guess where she is right now... She is in my bed, fast asleep. But, she didn't go down without arguing about whether or not she needed more cheese first. *sigh*
Yesterday's visit to the Clinic was good. They change the dressing on her PICC line and just did an overall check-up; no additional drugs. Then they discussed her progress with Amy and told her a little bit about her treatment plan for the future.
Apparently, the bone marrow test coming up in two weeks will confirm whether or not she is in remission. As of right now, it looks like she is in remission, but that next test will either confirm or dispute it. Remission was redefined for me yesterday. I had always believed that remission was the stage when all signs and symptoms of cancer had disappeared. The doctors at Fletcher Allen have a slightly different definition. They define remission as a reduction of the detectable disease even though some cancer is left in her body. I don't like their definition.
As for the future, we have a choice to make soon and I believe it is an easy choice. We have been participating in a study with Katie's treatment so far. The doctors have been giving her drugs and doses that are known to kill the cancer while at the same time upping the dosage or giving her additional drugs to see if they can kill it faster without making her too sick in the mean time. It seems to have worked. Now that she is in an unconfirmed remission stage, we get to choose whether we want to stay in the study or just go on to standard treatment.
The messed up chromosomes that are the cause of Katie's leukemia do not fall into the easiest to treat category, but they do not fall into a hard to treat category. They are somewhere in between. Therefor, the doctors are recommending that Katie stay on the study and get a slightly more aggressive form of chemotherapy during the next stage of the treatment plan, especially since her body was apparently able to handle higher levels of toxicity without getting really sick. We have been told that other children spend much of their time vomiting and feeling really horrible during the part of the treatment that we have almost completed.
I believe that the study has really worked out well for us, and I am all for aggressively going after every last bit of cancer in her body if her body can handle the drugs that the doctors are going to pump into it. I don't want to see this little girl have to start all over because the cancer survives and comes back again a few years down the road.
Since she was up almost all night, guess where she is right now... She is in my bed, fast asleep. But, she didn't go down without arguing about whether or not she needed more cheese first. *sigh*
Yesterday's visit to the Clinic was good. They change the dressing on her PICC line and just did an overall check-up; no additional drugs. Then they discussed her progress with Amy and told her a little bit about her treatment plan for the future.
Apparently, the bone marrow test coming up in two weeks will confirm whether or not she is in remission. As of right now, it looks like she is in remission, but that next test will either confirm or dispute it. Remission was redefined for me yesterday. I had always believed that remission was the stage when all signs and symptoms of cancer had disappeared. The doctors at Fletcher Allen have a slightly different definition. They define remission as a reduction of the detectable disease even though some cancer is left in her body. I don't like their definition.
As for the future, we have a choice to make soon and I believe it is an easy choice. We have been participating in a study with Katie's treatment so far. The doctors have been giving her drugs and doses that are known to kill the cancer while at the same time upping the dosage or giving her additional drugs to see if they can kill it faster without making her too sick in the mean time. It seems to have worked. Now that she is in an unconfirmed remission stage, we get to choose whether we want to stay in the study or just go on to standard treatment.
The messed up chromosomes that are the cause of Katie's leukemia do not fall into the easiest to treat category, but they do not fall into a hard to treat category. They are somewhere in between. Therefor, the doctors are recommending that Katie stay on the study and get a slightly more aggressive form of chemotherapy during the next stage of the treatment plan, especially since her body was apparently able to handle higher levels of toxicity without getting really sick. We have been told that other children spend much of their time vomiting and feeling really horrible during the part of the treatment that we have almost completed.
I believe that the study has really worked out well for us, and I am all for aggressively going after every last bit of cancer in her body if her body can handle the drugs that the doctors are going to pump into it. I don't want to see this little girl have to start all over because the cancer survives and comes back again a few years down the road.
Tuesday, February 5, 2008
Thanks For All of the Comments
This is just a quick thank you to everyone who has and is continuing to post comments to the blog. Every comment ends up in our email and we read them there and on the blog itself. They inspire us, give us hope, and help to keep us going. Thank you.
Over the River and Through the Woods, But Please Not to Grandma's
Amy and Katie are at Fletcher Allen this morning for another check-up and treatment. I am home with Josh and we have another snow day.
From what Amy told me this morning, Katie was not happy to end up at Grandma Kathy's house last night. She stayed awake for the entire trip to South Burlington and did not give here grandparents a warm welcome when she got there. Apparently she was even physically violent last night. Unfortunately she was still grumpy about the situation when she woke up this morning. I think the whole Burlington area is now a scary unwelcome sight for Katie. She knows that the only thing we go there for is to go to the hospital. With her immune system down, we can't take her to any stores, restaurants, or play areas. For her, there is no good reason to get in the car and travel for two hours unless it is to come home.
The Tuesday trips to Fletcher Allen a different than the Friday trips. They are quicker and easier on Katie, which should help her mood a little bit, and that should get them back home early this afternoon, which should help her mood improve even more.
From what Amy told me this morning, Katie was not happy to end up at Grandma Kathy's house last night. She stayed awake for the entire trip to South Burlington and did not give here grandparents a warm welcome when she got there. Apparently she was even physically violent last night. Unfortunately she was still grumpy about the situation when she woke up this morning. I think the whole Burlington area is now a scary unwelcome sight for Katie. She knows that the only thing we go there for is to go to the hospital. With her immune system down, we can't take her to any stores, restaurants, or play areas. For her, there is no good reason to get in the car and travel for two hours unless it is to come home.
The Tuesday trips to Fletcher Allen a different than the Friday trips. They are quicker and easier on Katie, which should help her mood a little bit, and that should get them back home early this afternoon, which should help her mood improve even more.
Monday, February 4, 2008
Another Good Day
Katie had another wonderful day today. Her spirits were good, her energy was good, and her health was good. What more could I ask for? She fell asleep late in the afternoon, shortly after Amy got home from work. She then slept for another three hours before waking up and being shuffled off into a waiting car to be transported to Grandma's house before the freezing rain hits.
She and Amy are headed down to South Burlington tonight because Katie's appointment tomorrow is at 9am. So rather than leaving here in the freezing rain at 6am, it was easier to pack her up tonight and head out. Katie wasn't all that pleased with being bundled up and hauled off, but if the drooping eyelids were an indication, she won't be awake for much of the ride.
Josh and I are on our own for the rest of the evening and for the morning routine. I bet I won't spend more than a few hours in bed alone tonight, and I can guarantee that we will be scrambling to be just barely on time tomorrow. Amy is the one who keeps us on schedule in the morning. Josh and I tend to take showers that are too long and then linger over breakfast as if it were the only meal of the day. We will both be glad to see Amy and Katie at the end of the day.
She and Amy are headed down to South Burlington tonight because Katie's appointment tomorrow is at 9am. So rather than leaving here in the freezing rain at 6am, it was easier to pack her up tonight and head out. Katie wasn't all that pleased with being bundled up and hauled off, but if the drooping eyelids were an indication, she won't be awake for much of the ride.
Josh and I are on our own for the rest of the evening and for the morning routine. I bet I won't spend more than a few hours in bed alone tonight, and I can guarantee that we will be scrambling to be just barely on time tomorrow. Amy is the one who keeps us on schedule in the morning. Josh and I tend to take showers that are too long and then linger over breakfast as if it were the only meal of the day. We will both be glad to see Amy and Katie at the end of the day.
Signs of an Early Responder
I just got off the phone with the doctor and she had good news. The bone marrow results are in and Katie has fewer than 3% blasts left in her bone marrow! The first mark of a fast early responder is to have less than 5% at this point. If you recall her stats when she was first admitted to the hospital, her blast percentage at that point was estimated at greater than 65%. I am very happy.
The next indicator comes at the end of the month with further testing, but if she is under 5% now, she is likely to still fall into the fast early responder category at the end of the month as well.
In the mean time, the picture on the right shows where she chose to take her nap this afternoon. Lying in the sun, snoozing away seems like a good way to spend a cool winter day. I might have to join her. :)
3 Pounds in 7 Days
The VNA nurse was just here drawing blood, and checking vitals on Katie. She also weighed our little pork chop only to discover that the endless supply of food going into her body is not going in without consequences. Last Tuesday, Katie weighed only 24lbs, 5.5oz. Today, she weighs a whopping 27lbs, 1.0oz. That is some pretty incredible weight gain for a toddler of her size.
So far this morning she is having another good day. She woke up bright and early this morning wanting a bagel. Then she wanted toast. Then she wanted pizza. Now she is lying on the couch, quite full at the moment, watching Happy Feet. It took a little convincing to get her away from Dora, but it was worth it.
She was so good for the nurse this morning. She helped the nurse hold the stethoscope to her chest and she even told the nurse, "Thank you for taking care of me". It is so nice to have her positive little attitude back.
So far this morning she is having another good day. She woke up bright and early this morning wanting a bagel. Then she wanted toast. Then she wanted pizza. Now she is lying on the couch, quite full at the moment, watching Happy Feet. It took a little convincing to get her away from Dora, but it was worth it.
She was so good for the nurse this morning. She helped the nurse hold the stethoscope to her chest and she even told the nurse, "Thank you for taking care of me". It is so nice to have her positive little attitude back.
Sunday, February 3, 2008
One Day at a Time, Happily
What a pleasant weekend we have had. One happy day at a time...
Rick and Joshua know how to keep moving. They have not rested much this weekend; they have been far too busy exploring. Joshua was especially happy to get out on his skis this afternoon. He is learning to glide and finding his feet. They came home with flushed pink cheeks this afternoon, a picture of perfect health.
I really do believe that Katie is slowing regaining her health, too. She took a long nap this morning and continues to spend time on the couch, but she is up and active for longer periods of time, and she interacts far more with the world around her. She scoots around the house, troops up the stairs and manages the affairs of our household with a ferocity and sense of purpose that I admire. I had missed my bossy boots. She continues to paint and to experiment with new ways of making a total mess while painting. It comes as no surprise to me that her new favorite book is "Ain't Gonna Paint No More." She has a lot in common with the messy little creature in this story, and she is learning some of its rhymes. It's thrilling to discover that she is still enthusiastic about learning when she is feeling well enough to practice new ideas. As I write, Dora is teaching us to ward off snakes with the word for snakes in Spanish. Katie should be bilingual by the time this madness has ended!
It would be fair to say that Katie's illness has changed our priorities. We are learning to appreciate minor miracles and to enjoy small victories. My husband, for instance, returned from a trip to the barn with a Diet Pepsi for me, despite his very cranky feelings about soda. How many relationships survive because of small but meaningful gestures? A few weeks ago I might not have been quite so excited about a peaceful weekend at home with two happy children. It was just another weekend at home. Given all that we have experienced in the last few weeks, however, this is a minor triumph, and we are far better prepared to venture forth into the challenges of the week. I hope you'll have a good week, too.
Rick and Joshua know how to keep moving. They have not rested much this weekend; they have been far too busy exploring. Joshua was especially happy to get out on his skis this afternoon. He is learning to glide and finding his feet. They came home with flushed pink cheeks this afternoon, a picture of perfect health.
I really do believe that Katie is slowing regaining her health, too. She took a long nap this morning and continues to spend time on the couch, but she is up and active for longer periods of time, and she interacts far more with the world around her. She scoots around the house, troops up the stairs and manages the affairs of our household with a ferocity and sense of purpose that I admire. I had missed my bossy boots. She continues to paint and to experiment with new ways of making a total mess while painting. It comes as no surprise to me that her new favorite book is "Ain't Gonna Paint No More." She has a lot in common with the messy little creature in this story, and she is learning some of its rhymes. It's thrilling to discover that she is still enthusiastic about learning when she is feeling well enough to practice new ideas. As I write, Dora is teaching us to ward off snakes with the word for snakes in Spanish. Katie should be bilingual by the time this madness has ended!
It would be fair to say that Katie's illness has changed our priorities. We are learning to appreciate minor miracles and to enjoy small victories. My husband, for instance, returned from a trip to the barn with a Diet Pepsi for me, despite his very cranky feelings about soda. How many relationships survive because of small but meaningful gestures? A few weeks ago I might not have been quite so excited about a peaceful weekend at home with two happy children. It was just another weekend at home. Given all that we have experienced in the last few weeks, however, this is a minor triumph, and we are far better prepared to venture forth into the challenges of the week. I hope you'll have a good week, too.
The End of a Good Day
Yesterday was one of our better days. Katie was feeling good and in a good mood all day long. She still didn't have enough energy to get off of the couch, but she did do a little painting and was happy to knock over any block towers that I built close enough to the couch for her to reach.
She also finally developed a taste for foods other than fish sticks yesterday. She ate oatmeal, salad and Sheppard's pie on top of her normal dose of fish sticks and Tater tots. In addition to that, I was also able to get her to take a little bit of a Dora break, mostly to save my own sanity. Instead She watched Open Season, Cars and The Cat in The Hat.
The complete immersion into a world of watching videos all day long while lying on the couch eating is not something we have promoted in the past and is something I will happily get away from again as soon as she has the energy to get off of the couch. We purposely did not pay for cable, dish, or even an antenna in our house. The kids exposure to TV was specifically limited to the DVDs that we purchased or rented through NetFlix, and then it was only one video per day if we were really feeling too busy to entertain them in any other way. The TV is now on all day long with one DVD or another playing in it, and I can't wait for the day when I get to shut it off again. But for right now, while Katie's entire day is spent either on the couch or on the little fold-out Dora couch/bed right in front of the couch what else are we going to do?
She doesn't usually have enough energy to color, play with blocks, her tea set, doll house, or hundreds of books. On top of that, she gets sick of listening to us read to her after a while. I'm really looking forward to the day I get to see her running and playing again.
Our house has a fairly open design which allows the kids to run in a circle from the dining room into the living room and through another connected room back to the dining room. It is their own personal race track for all sorts of games and I miss the sound of running feet as half of the family zooms around the house, running lap after lap just because they are young and have energy to burn.
Josh had a great day yesterday. We started his day with some sliding. I took him to a farmer's pasture that sloped gently down hill for a REALLY long way. With the icy snow conditions, that made for a very long, fast ride. We played on that hill for a little over an hour, then he went swimming. His mother took him to IROC to meet some of his friends for a little swimming adventure. When that was complete, He went to a friends house to play for a bit and finally came back home to relax at the end of the day. He had a great time. We will probably get some more sliding in today to take advantage of these excellent snow conditions.
She also finally developed a taste for foods other than fish sticks yesterday. She ate oatmeal, salad and Sheppard's pie on top of her normal dose of fish sticks and Tater tots. In addition to that, I was also able to get her to take a little bit of a Dora break, mostly to save my own sanity. Instead She watched Open Season, Cars and The Cat in The Hat.
The complete immersion into a world of watching videos all day long while lying on the couch eating is not something we have promoted in the past and is something I will happily get away from again as soon as she has the energy to get off of the couch. We purposely did not pay for cable, dish, or even an antenna in our house. The kids exposure to TV was specifically limited to the DVDs that we purchased or rented through NetFlix, and then it was only one video per day if we were really feeling too busy to entertain them in any other way. The TV is now on all day long with one DVD or another playing in it, and I can't wait for the day when I get to shut it off again. But for right now, while Katie's entire day is spent either on the couch or on the little fold-out Dora couch/bed right in front of the couch what else are we going to do?
She doesn't usually have enough energy to color, play with blocks, her tea set, doll house, or hundreds of books. On top of that, she gets sick of listening to us read to her after a while. I'm really looking forward to the day I get to see her running and playing again.
Our house has a fairly open design which allows the kids to run in a circle from the dining room into the living room and through another connected room back to the dining room. It is their own personal race track for all sorts of games and I miss the sound of running feet as half of the family zooms around the house, running lap after lap just because they are young and have energy to burn.
Josh had a great day yesterday. We started his day with some sliding. I took him to a farmer's pasture that sloped gently down hill for a REALLY long way. With the icy snow conditions, that made for a very long, fast ride. We played on that hill for a little over an hour, then he went swimming. His mother took him to IROC to meet some of his friends for a little swimming adventure. When that was complete, He went to a friends house to play for a bit and finally came back home to relax at the end of the day. He had a great time. We will probably get some more sliding in today to take advantage of these excellent snow conditions.
Saturday, February 2, 2008
Naps, Noodles and Nuzzling
I was so happy to have my handsome husband home for dinner last night. He brought my beautiful baby back home to me. Joshua made a pizza to welcome them home, and I put on coffee for Rick, who was exhausted. I was surprised that they chose to come home--they were pretty happy with my parents, who were spoiling them!--but very glad to have us all back together, safe and sound in one location. "Home" is such a powerful idea.
Rick took some great pictures of Katie at the hospital yesterday, and he will post them soon. One photo clearly shows Katie eating noodles, per usual, in her Lake Region t-shirt. She has three LR t-shirts, and she insists upon wearing them to the hospital each time we make the trek to Burlington. She developed an addiction to Rangers basketball early in the season, and she continues to cheer for our teams. I probably shouldn't dare to dream, but I am hoping that her immune system will recover in time so Katie can attend another basketball game before the season ends. She has been so good about some really unpleasant aspects of her treatment. It would be nice to give her this reward. We'll have to see how her body cooperates.
We are still waiting to hear about the number of blasts in Katie's blood. We may not hear until Monday or Tuesday. Welcome to the waiting game. The good news is that Katie's cell counts are up; it appears that her bone marrow is learning to make healthy cells again. She has more color in her cheeks, and she has enough platelets to protect her in case of emergency. On the other hand, her neutrophil count is the lowest it has been (120), so she continues to live in virtual isolation in our home. While we appreciate all the efforts on our behalf, we cannot even invite our benefactors in for a cup of coffee--I'm so sorry. We look forward to throwing a major party for all of you just as soon as we are able. We promise that it will not be a Dora party!
That is another spot of good news. Katie is experimenting with variety again. She has been watching videos other than Dora (yay!), and she ate pizza last night. She even had vegetables! We are making slow progress...
Best wishes to all of you. We are thinking of you, too, and relishing the support you have given us. What a miracle...
Rick took some great pictures of Katie at the hospital yesterday, and he will post them soon. One photo clearly shows Katie eating noodles, per usual, in her Lake Region t-shirt. She has three LR t-shirts, and she insists upon wearing them to the hospital each time we make the trek to Burlington. She developed an addiction to Rangers basketball early in the season, and she continues to cheer for our teams. I probably shouldn't dare to dream, but I am hoping that her immune system will recover in time so Katie can attend another basketball game before the season ends. She has been so good about some really unpleasant aspects of her treatment. It would be nice to give her this reward. We'll have to see how her body cooperates.
We are still waiting to hear about the number of blasts in Katie's blood. We may not hear until Monday or Tuesday. Welcome to the waiting game. The good news is that Katie's cell counts are up; it appears that her bone marrow is learning to make healthy cells again. She has more color in her cheeks, and she has enough platelets to protect her in case of emergency. On the other hand, her neutrophil count is the lowest it has been (120), so she continues to live in virtual isolation in our home. While we appreciate all the efforts on our behalf, we cannot even invite our benefactors in for a cup of coffee--I'm so sorry. We look forward to throwing a major party for all of you just as soon as we are able. We promise that it will not be a Dora party!
That is another spot of good news. Katie is experimenting with variety again. She has been watching videos other than Dora (yay!), and she ate pizza last night. She even had vegetables! We are making slow progress...
Best wishes to all of you. We are thinking of you, too, and relishing the support you have given us. What a miracle...
Long and Draining Trip
Wow! Friday's are long and draining. I didn't post to the blog again yesterday because we didn't get home until a little after 5pm and then I was too tired to do much of anything. We did come home yesterday despite the road conditions. I didn't feel that they were too bad actually. The roads all the way back to Eden were just wet with a little slush here and there. The roads from Eden back were more interesting. From that point on I was dealing with mostly corn snow. The hard granular pieces of ices were piling up and sticking together on the road making a smooth semi-firm carpet to drive on. Going over Burton hill I could feel the tires our awd subaru slipping a little, but I didn't have any problem tracking straight or slowing and stopping. We came home mostly because Katie wanted to be home and she wanted to see her mother.
She slept very well in her own bed last night. That was the first night she has spent the entire night in her own bed since she got sick. Not to worry, we weren't lonely. Josh picked up the slack and joined us some time around 2am. He was such a bed hog that I ended up going to his bed to sleep the rest of the night.
Katie is up and active this morning, in a good mood. Josh and I are looking outside at the new layer of snow and ice and planning a sliding trip. Amy, Is planning a trip to Iroc to go swimming later with Josh, Carmen, Barb and family. Right now, I have to go get the recycling ready and get that out of our basement. It has piled up a bit over the last couple of weeks. Another post should be coming shortly. Amy is planning to write something up.
She slept very well in her own bed last night. That was the first night she has spent the entire night in her own bed since she got sick. Not to worry, we weren't lonely. Josh picked up the slack and joined us some time around 2am. He was such a bed hog that I ended up going to his bed to sleep the rest of the night.
Katie is up and active this morning, in a good mood. Josh and I are looking outside at the new layer of snow and ice and planning a sliding trip. Amy, Is planning a trip to Iroc to go swimming later with Josh, Carmen, Barb and family. Right now, I have to go get the recycling ready and get that out of our basement. It has piled up a bit over the last couple of weeks. Another post should be coming shortly. Amy is planning to write something up.
Friday, February 1, 2008
Hungry Day
It's Friday morning and we are getting ready to go to Fletcher Allen for a bone marrow extraction and some more chemotherapy. Whenever she gets bone marrow taken she has to be put under with anesthesia, so she can't eat anything when she wakes up. She has already had two bouts of crying and begging for food. First at 3:30 this morning and again at 6:30. We gave her some juice instead and she fell back to sleep. But now that it is past 7am, she can't have anything more to drink either. We are letting her sleep until it is time to leave so that the suffering is minimized. Days like this are known as hungry days. I tell her she has to have a hungry day and she knows that means no food.
Fridays are also a day of fun for Josh. He is going skiing again at Burke today. We are hoping that he slows down a little bit more today and doesn't make Susan chase him so much. She is nice enough to chaperon these Friday ski trips, but she follows behind him on her cross country skis, making it a challenge to catch him at all times. He's fast.
Thanks to Gerry and Cindy for his new set of cross country skis. He wanted to take them to Burke today. We talked him out of that, but he still wants to take the poles to Burke.
The weather today might get interesting, either on the way down or after the procedure. I may end up staying in South Burlington tonight at Art and Kathy's house if things get nasty. I just got the Subaru out of the shop yesterday (cv joint) and I put a lot of confidence in that things ability to handle a little snow and ice. If things aren't too bad, I'll be on the road.
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