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.
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