An Over Due Update

Katie has fully recovered from her sprained ankle. Once again she is actively running and playing. During her recovery she was still able to have some fun. She celebrated Easter with not one, but two outdoor easter egg hunts. One with her friends and immediate family and the other with her extended family. Although she was a little sore at the end of the day, she was happy. Since that day, she hasn't favored that leg again.

She did, unfortunately, run into a little trouble with thrush again. This time, I'm sure that it was caused by her inhaler. We were issued the inhaler with specific instructions to rinse thoroughly after every use because the steroid in the inhaler could encourage the growth of thrush in her mouth. One morning, in our rush to get to school on time, I helped her use the inhaler and then we forgot all about rinsing. The next morning she had a white growth forming on the tip of her tongue. Luckily we still had some medication left over from the previous case of thrush so we started having her rinse and spit the medication twice a day immediately. The thrush never got any worse and two days later it was gone. We caught it quick.

This past week Katie has been dealing with a case of the croup again. It was keeping her up at night and she was coughing so much that she was having trouble taking a breath. However, we managed to get it under control by putting two humidifiers into her small room, rubbing her chest with Vics Vapor Rub and closing the door as she slept. In the morning, the inside of her windows were covered with condensation, but she slept well and that is all that matters. We continued to use both humidifiers until last night when her coughing seemed to be under control. She slept with just one humidifier running and the Vics last night and she still slept fine. She might be getting over this round of croup.

Things have happened on our farm since the last time we updated the blog too. One of our pigs, Charlotte, had finally grown big enough for the slaughter house and was sent to the butcher. The kids said their tearful goodbyes as we loaded her up, but they were smiling again shortly after when it was time to feed the newest addition to the farm. We acquired a new calf. He is a Jersey/Holstein mix and we named him Mocha. He is only three weeks old and has to be bottle fed by hand. Katie thinks he is absolutely adorable.

Two Kids Sick!

Katie's struggle with this virus continues. For the past three days I have been applying medicated Blistex lip ointment to her lips and a little to the sores on her face. The sores on her face are looking much better. They have dried up and the red areas around them are shrinking. Her lips are looking a little better too. However, during a close inspection of her lips tonight I found another new sore on the underside/inside of her top lip again. This one doesn't seem to bother her as much as the previous ones and she did let me touch it to apply a little Blistex to the outside of it. I'm curious to see how this one will progress now that the other sores seem to be getting better.

Josh is also sick tonight. This morning he complained of a headache, but we thought it was from lack of sleep since Katie had woken everybody up last night during a bad dream. In her dream she was screaming and saying "Don't take me to the hospital!" None of us got much sleep last night. Tonight, as we were putting Josh to bed, Amy noticed that he felt warm so she took his temperature. He has a fever of just over 100 and he is complaining of the headache again. We'll keep an eye on him through the night and see how he's feeling in the morning. Maybe my parents will have two kids on their hands tomorrow...

Still Coping

Katie had a restful weekend, and shook off some of the nocturnal habits that she was displaying by the end of last week. She is still sleeping heavier during the day than at night but she is getting some balance back. These days of being cooped up with her grandparents, unable to go anywhere or play with any other kids, are schedule altering. She gets bored with nothing to break up her day and she ends up watching a lot of Dora videos and reading a lot of books. She can only watch so much TV and read so many books before the desire to nap overwhelms her. Then, with no reason to wake up, her naps last for hours and by the time bed time rolls around she isn't tired. We all look forward to her getting back to a normal routine some time in the future. We just don't know when that future will be.

The sores on her face and lips are about the same. One heals, another begins to form. I don't think we are making any real progress. One of our readers, Sarah (www.allaboutmollie.blogspot.com), suggested Clindamycin because it worked for her daughter Mollie when she was suffering from something similar. We will ask the doctors about it this Thursday when we go back for another follow-up. We have also been trying warm, moist compresses and most recently some Blistex medicated lip ointment for cold sores. With any luck, some of this will start working to clear up this infection.

Doing Better

Katie slept through the night last night without medication. She fussed a couple of times in the night but never woke up crying. She even woke up in a much better mood this morning and was generally cooperative. Her lips and mouth are looking even better this morning. It seems like things are moving in the right direction.

Out Of The Hospital

Katie and I are out of the hospital, but not home. We are staying with Art and Kathy because the doctors didn't want us to be too far away. We have never been out of the hospital with numbers as low as they are right now. Her ANC is still hovering between 10 and 20. Her hemoglobin and her platelets dropped again this morning and she got a platelet transfusion before we left the hopsital. But, the general consensus was that nothing was wrong with Katie and everyone was just waiting for her body to start to rebuild itself. Since she wasn't sick she might as well coninue the process in a more comfortable atmosphere. So she left the hospital wearing a mask and went straight to Grandma's house. This way we are just 3 miles away from the hospital and we can get back there in an instant if anything changes.

Right now, she is snuggled deeply into the blankets in her bed here at her grandparents' house. She is very happy to be in a place that feels like home and she is going to sleep great tonight without the regular checkups by the nursing staff all night long.

Tomorrow is her birthday. We are very lucky to that we aren't going to have to celebrate it in the hospital.

At Home and Doing Well

We did indeed bring Katie home yesterday and she came home with an appetite. She requested tacos for dinner and she ate more than anyone else at the table. She was feeling good. Bed time was a little off because her schedule was thrown off in the hospital so she was still awake at 10pm even though I started reading stories to her to put her to sleep at 8pm. But once she fell asleep, she slept like a log and didn't wake up until 10 this morning. Surprisingly, Josh slept most of that time too.

Starting with the bedtime routine last night, we began managing for hypoglycemia. Just before bed, she had a snack of crackers and peanut butter and a mozzarella cheese stick and a glass of milk. The object was to put some protein and more complex sugars into her system that would last longer into the night, and some fat that would slow the absorption of sugars down even further so that hopefully she would wake up feeling fine this morning. It worked. She felt great this morning and she was able to sleep much later that usual. When she got up, she requested tacos for breakfast...

I'll post another update late this afternoon after I see how the rest of her day is going.

Art and Kathy, this part is for you. We lost the phone number you gave us. It went through the wash in the Ronald McDonald room at the hospital. So, we got your message this morning but we can't call you back. Call us at home.

Lazy Sunday

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

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

Quiet, Lazy Weekend of Fun

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

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

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

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

Early, Short Update

It is Monday morning and Josh and I got off to school on time, but we haven't had much of an opportunity to get an update from Amy on how Katie is doing this morning. So far, all I know is that Katie's fever has not returned but she is absolutely miserable and she is a little tired this morning after waking up on and off most of the night. Amy told me that Katie woke up crying about every twenty minutes last night until around 2:30 this morning when she finally started sleeping soundly. We are definately worried at this point. Katie has been in the hospital for five days now and nobody knows what is wrong with her yet. We are starting to think all of the drugs are making her sicker instead of helping her out because they are treating her for everything just in case she has it. The cultures that were taken early on still have not grown anything, so it is very likely that she doesn't have a bacterial infection and all of these antibiotics are just throwing her system into a tailspin. When I got off the phone, Amy was headed out to track down a doctor and get some answers. She is frazzled this morning and I don't blame her.

That's all I have for now. I will try to get and post another update at lunch.

Watch Her Dance

Katie is having a pretty good day so far. She is full of energy and ready to play. But don't take my word for it... watch for yourself. I uploaded a short video. I can't actually believe she is so full of energy considering that she didn't fall asleep until after midnight and then she was up again by 7am.

The Day Before Infusion

Things went well for Katie today. She slept a little bit better last night with fewer coughing fits and she was able to get up at a reasonable hour this morning. She lounged and played all morning and then snuck in a quick two hour nap just before we got home from school. When we arrived, she was primed and ready to go. She played hard for the rest of the night - dancing, singing, running, climbing and bouncing. She eventually bounced into bed and finally fell asleep a little later than we would like, but much earlier than she had been going to bed for the last few days. An earlier bed time is a very good thing for her since tomorrow morning she and Amy are heading back down to Fletcher Allen for infusion.

She gets Cytarabine and a check-up tomorrow and gets to bring home three needles for shots at home over the following three days. I don't recall whether or not we mentioned this last week, but the Cytarabine is administered in four consecutive doses, twenty-four hours apart. So instead of traveling to the emergency room on Sunday to get the fourth shot, we give the shot at home. If we have to give one shot, why not save a few more trips and give all three shots? That is exactly what we did last week and will be doing again this week. The shots at home are relatively easy when compared with driving to the doctor's office, seeing the nurse, calming Katie down, seeing the doctor, calming Katie down, seeing the nurse again and finally getting the shot and calming Katie down. At home, the whole process is over in less than two minutes. She is not a big fan of the shots, but she doesn't cry any more at home than she does in the doctor's office.

Happily, her blood cell counts still appear to be OK so we are hoping that she won't need a transfusion tomorrow. We don't know what her counts are for sure because her blood wasn't tested this week, but she isn't displaying any of the symptoms of low blood counts. Her skin looks good, her energy is good and all other symptoms are absent. With luck, Amy and Katie will be home again before it gets dark tomorrow evening.

Tuesday With Grandma

Katie spent her first day with at home with Grandma Kathy today while Amy and I both went to work. Aside from a little breakfast tossing incident, the day went fairly smoothly for both participants.

Her cough doesn't seem to be getting any worse. It is actually a little looser today than it has been. Josh's cough seems to be gone. I'm the one who seems to be coughing a little more each day.

The sore on Katie's leg hasn't change much, but I don't think it is any worse. The color around it is a little deeper red, but no larger than it was yesterday and the sore itself is scabbed over and doesn't appear swollen. She says that it still hurts when I touch it, and I only touch it very gently.

The length of the day yesterday must have tired her out a bit because she took a nap for her grandmother today that lasted four hours. Kathy told us about that long nap while we were still at school and I didn't give it a second thought. Amy though, had different feelings about a four hour nap. She rushed me out of that school 6 seconds after we were contractually allowed to leave so she could get home to check on her baby. I am happy to report that her baby met us at the door with a big smile and huge hugs and kisses. She is happily playing downstairs right now.

A Timely Transfusion

Katie is at Fletcher Allen right now getting her fourth transfusion and she really needed it again. Her hemoglobin numbers have been dropping steadily since starting this latest round of chemotherapy and it finally caught up with her. She was tired this morning--very tired, and she was complaining about a headache yesterday afternoon. She hadn't gotten out of bed by the time I left for school, and when I talked to Amy two hours later she was sleeping in the car. We are also wondering if she may be coming down with something or if she is feeling nauseous due to her chemotherapy despite her anti-nausea medicine. She vomited in the car this morning, and she hasn't had vomiting issues before.

This just in. Amy called while I was writing this post, so I can add some additional information.

Katie is most of the way through her transfusion at this point and is feeling great. She has a nice pink color to her skin, she is warm and she is wiggly. Her headache is gone, and even her stomach feels fine.

I also just learned that a researcher at the John Hopkins Hospital has confirmed that the original blood samples did contain small numbers of monoblasts, the indicators of AMoL. Therefor, Katie is no longer considered to have just ALL, she officially has a mixed lineage form of leukemia. The MRD results have also been confirmed, and the monoblasts do appear to be gone at this point.

The doctors have told Amy that these results don't change her prognosis at all because of her previous successes so far. She is still an early responder, and she is still accepting her chemotherapy very well. She is uncommon. She is special. She is Katie, and she is working hard to beat this.

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.

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.

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...

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.

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.

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.

Sunday Morning Update

Katie slept well last night with only a few nurse visits to wake her up. She is having a low key morning so far and is cheerful and happy, but tired and not very hungry. All she has eaten so far this morning are a few saltine crackers. She had a lot of visitors yesterday and missed her normal nap time. We are hoping that is why she is tired today, but we are waiting anxiously for her latest lab results.

In addition, another side-effect of the chemotherapy is becoming apparent. One of the drugs has a constipating effect, and we are now on day three without any bowel movements. Oddly enough, we are hoping for one of those today and a laxative is being mixed into some of her food and drink to help get things moving.