Thursday, January 31, 2008

Hero of the Day

Special thanks to Kim, Michelle, Justin and Mikey Kelley. They have been raising money for Katie, they found frozen pancakes for Joshua, so he will never do without, and they continue to cheer us all on. We are grateful for their help. Rick was surprised to receive a call from our local radio station, WMOO. Justin contacted them with Katie's story, and they gave him air time; our Katie is famous!

Thanks to Rhonda and Patty for warm blankets, too, and thanks to our students, who continue to behave themselves beautifully and to troop right along in our absence, making it easy for us to go back to work and to combine our new projects.

The people of the Northeast Kingdom are so generous...

Tacos for Breakfast

Good morning! I thought we'd give you a quick update before Rick has to head in to Burlington with Katie on Friday.

We are riding a roller coaster, but its pace is decreasing, I think. Katie had a quiet day Wednesday, but she did have her first bloody nose. We're Vermonters, it's winter, and we heat the house with a biomass stove; this should not have been a big deal. In this case, however, a bloody nose is a big deal. Thankfully, the remaining platelets did their job, and Katie was comfortable just minutes later. She finally decided to clear all that food out of her system, so diapering was pretty interesting yesterday, but I would guess that she must feel a lot better now.

That is one challenge: Katie is just too inexperienced with the language of pain to communicate what she needs or how she feels. She is learning, however, and we are getting better at guessing what she needs. The VNA nurse, who is terrific, has us training Katie to point to pictures with smiling faces or frowns to indicate just how sick she feels at any one time. She came to draw blood today and Katie was a much better patient. (She wasn't perfect, but her behavior has certainly improved...)

Katie's appetite continues to improve, too. I'm embarrassed to tell you that she was happily eating tacos at 8:30 this morning. She requested chicken soup goop for lunch, and she helped me cook it. For those new to our custom food lingo, chicken soup goop is cut up chicken breast simmered in mushroom soup and served on rice or egg noodles. It is so much fun to have time with her when she feels well enough to play. We watered plants, too. I hope this means that she has adjusted to the steroids and that my strong but polite and cheerful child has returned.

I will ask Rick to post pictures of Katie that I took this morning. She likes her new butterfly hat. It did me a world of good to see her dressed in bright colors. About the most recent picture: Notice that Katie is sleeping on a Dora couch? It was a gift from Jeff and Jean Cota, Katie's day care provider and her husband. One difficult aspect of this for Katie is that she wants to go play at Jeanie's house when she feels well enough. She misses her buddies, especially Camden and Abbie. It's amazing how quickly children become attached to one another and how much they are capable of missing each other when they are separated. Thanks to Jean and Jeff, Katie can now watch Dora while curled up with Dora--paradise. Katie will be happy to return to Jeanie's house next fall!

Wednesday, January 30, 2008

Lab Results

For anyone out there who is interested in the nitty gritty detail. We have some lab results to share with you. These results are from yesterday's blood work, and they are what prompted the transfusion last night.

Everything in red is low
Everything in orange is high

WBC=0.46 (NORM=5.5-15.5)
RBC=1.89 (NORM=3.9-5.3)
HGB=6.2 (NORM=11.5-13.5)
HCT=17.8 (NORM=34-40)
MCV=94 (NORM=75-87)
PLT=64 (NORM=156-312)
Absolute Neutrophil Count=200

I should do some more research, but for now all I know is that the WBC is her white blood cell count, the RBC is her red blood cell count, and the HGB is her hemoglobin count.

The Gods are Smiling on Us

I just signed on to fill you all in and discovered that my husband has already done all the dirty work. I will sign off, then, to enjoy a badly needed shower. Before I go, I want to thank my parents, who continue to rescue us. When we are at home in the Kingdom, we have access to a tremendous network of friends and loved ones who meet all our needs. My parents are our best resource in Burlington. When it appeared that Katie would need a time-consuming transfusion last night, I called home immediately. It was 3:30, and Katie had not eaten since breakfast. She needed fish sticks--an item that does not appear (I can't imagine why!) on the hospital's menu. Just half an hour later, Katie was eating fish sticks, tater tots and buttered noodles--her current version of culinary paradise. Grampa remembered the ketchup. Thanks to my parents, Katie had everything she needed, and I was so grateful for the company. Grandma had also been shopping for warm, funny hats that will come in handy soon. We both really like the kitty cat hat, so we'll try to get a picture of her in it for you all. Many thanks, as well, to Susan Blanton, who knit Katie the softest and prettiest hat in raspberry and lime green. It looks like a dish of sherbet, and Katie wore it all day yesterday. It provided her with a lot of comfort during a long and challenging day. In blue jeans, a hoodie sweatshirt and this little hat, she looked like she belonged on a snowboard. We had planned to teach her to ski this winter, but our plans are on hold. How I wish this were a regular old winter just like every other...

The wonderful news is that freezing rain came to the Kingdom, and we have the day off. Joshua and I hunkered down under the blankets for hours. Someone is looking out for us. It is so nice to be home with my whole family.

Snow day!

We received the phone call at 5AM, notifying us that school was closed for the day. That is wonderful news for Amy who got home from the hospital at 10:30 last night. When she got home she said she was so tired that she was afraid she would fall asleep while driving the last little bit home. Karie was sound asleep, but with a stinky diaper. I quickly and gently changed her diaper and she woke up but quickly fell back to sleep. The 5AM phone call woke her up and she started asking for Goldfish and Tater tots so I got up with her and we left Amy sleeping. Now she is watching Dora with a belly full of fish sticks, Tater tots, and Goldfish. Amy and Josh are still asleep.

The transfusion yesterday helped, but it was an unexpected delay that made the day really drag on. From now on, the visiting nurse will always draw blood the day before a trip to the hospital so that there are fewer surprises.

The doctors almost didn't let Katie come home last night. They gave her Tylenol before the transfusion to make sure her temperature didn't climb as her body received the new blood, but her temperature spiked anyway and they monitored her closely while waiting for her fever to break. As a resultwe will be monitoring her temperature very closely today. If it goes back up, she goes back to the hospital. We were told to go to North Country first, where they would put her on antibiotics then transfer her to Fletcher Allen. Hopefully that doesn't happen because that would mean another ambulance ride.

Right now, she is nice and cool. Hopefully she stays that way.

Tuesday, January 29, 2008

Additonal Updates

The blood tests are done, and Katie is Neutropenic! That's good and bad. It means the chemo has done what it was supposed to and killed off her white blood cells. It also means that she now has absolutely no immune system. The doors to the house are now closed to all visitors for the time being.

Her red blood cells are also incredibly low right now. Amy tells me that Katie doesn't even want to sit up. She lies down everywhere and wants to be held. She is getting a transfusion right now and that should work wonders.

I'll post more information when I get it.

News from Today's Trip

It is 3:15pm and Amy and Katie are still in Burlington waiting for blood test results to come back. They think that Katie is going to get an unexpected transfusion this afternoon. The last transfusion that she got took 3 hours. If this one takes as long that will leave Amy and Katie in Burlington with freezing rain and terrible road conditions on the way. If that is the case, I will try to talk Amy into just spending the night at her parents house in South Burlington and coming home tomorrow.

As for Katie's medical update, her early cytogenetic tests are back and we were told that she doesn't fit into any of the 5, poor prognosis categories, but that she doesn't quite fit into the 2, good prognosis categories either. Once again, she is going to do things her way. The doctors said that most kids are not so easily categorized this early on, and that this news is not bad news. Just the opposite, they were pleased that they could rule out the worst possible prognosis.

That's all the information that I have for now. I will post an update again later when I have more information.

Terrific Tuesday

(We are hoping, at least, to have a terrific Tuesday!)

Katie and I are traveling to Burlington today for her first appointment at the Children's Specialty Clinic at Fletcher Allen--another part of the hospital for us to explore. Katie is meeting with her doctors today for a check up, and we are hoping to learn how to manage some of the side effects that are beginning to affect the quality of her life. Today we start anti-emetics to combat the nausea. It's time, unfortunately. We are also hoping to learn the results of the cytogenetic testing. Basically, doctors have analyzed blood and bone marrow in an effort to figure out just what is going wrong with the cells in Katie's blood. They need to know how the chromosomes are damaged so they can plan the next phase of her treatment. This also determines prognosis to some extent. I caved Saturday night and looked up ALL on the internet. I have been trying to avoid the madness! What I found, though, is a sample cytogenetics report, with prognosis, and now I am eager to learn Katie's results. Oddly enough, I wish I had never ventured online. "I'm an idiot," I said to Rick. He admitted that he had finally wandered online, too, and that it was neither helpful nor reassuring. When my technology geek of a husband won't go online, you know that something is wrong!

We are discovering that the doctors and nurses at Fletcher Allen really are our very best resource. I called Dr. Bradeen's answering service for help when Katie was vomiting last night, and she was on the phone with me herself just two minutes later. The doctors don't talk down to us--a relief--and they explain everything so clearly. They would make good teachers. The nurses are smart, capable and kind. It is such a relief to learn that our child is just like other children with ALL. She is so different. We have trouble recognizing our little beauty in the demon who spends all her time watching Dora and yelling at us. Apparently they all do this! While this doesn't make me feel a lot better about Katie's suffering, I am glad that her behavior is within normal limits for children in this new life we call "the new normal." Just keep telling me that it will be all right.

PS--Many thanks to the Lake Region staff. We aren't quite sure how to begin expressing our gratitude for all that you are doing to keep us afloat. It was such a luxury to be back at work Monday. Special thanks to those of you who are filling our bellies with pasta and cookies. Free range chicken with an apricot glaze? We have never eaten so well! Thanks to Barb for the pizza, too--pizza...

Monday, January 28, 2008

24 hours of Tantrums

I'm sorry that so much of the day has gone by without a blog entry, but what a day it has been. Katie has had a very cranky day that started at 6:30 this morning and hasn't stopped yet. Amy is upstairs right now trying to get her to lie down and go to sleep. She has thrown too many tantrums to count today.

On top of that, her brother has had 4 tantrums in the last 24 hours as well.

Wait... Amy is calling for me.
Ok, I'm back. Katie just vomited in bed and we had to do a little clean up. This is the first time that she has vomited since the beginning of this ordeal, but I'm not sure if it is because her stomach is upset or because she gagged on the medicine. She was in the process of taking one of her medications that comes in pill form and is reported to taste just aweful. The pills are small and she has to take three of them. We used to mash them up into some Popsicle slushy but then she started just picking out the meds and eating them. Now she just eats them alone. Apparently she vomited after already having eaten two of them. After we got her all cleaned up, she looked around, found the third one sitting on the shelf, picked it up and ate it too; telling me the her "medicine is all gone Daddy".

It has just been such a long day. I can't wait to crawl into bed. But first, I have to do some laundry.

Sunday Night

We had a long day, full of mood swings, and tantrums. On the bright side she had much more energy today than she did yesterday. She just didn't always direct it in a positive manner. We never did make it to the Pick & Shovel. We took our walk down to the river and Katie fell asleep during the walk. She woke up again when we got home, but then didn't want to go anywhere so we settled in for a day at home.

Josh had spent the weekend with my parents so he could visit and play with his cousin Kyler. He returned home just before 2pm and we made plans to go sliding. I took him to the big hill near the I-91 exits in Barton and we slid for a couple of hours. He loved it and we had a lot of fun. He should sleep well tonight. He climbed the entire hill all by himself every time. For those of you who don't know of the hill, it is huge and the climb to the top takes from 10 to 15 minutes.

Sunday, January 27, 2008

Sunday Morning - Tired and Cranky

Katie slept for a few hours in her own bed last night before waking up and asking for "Mom". I brought her into our bed and she snuggled in close and went right back to sleep. Five minutes later, she was kicking the covers off of all three of us. She has her own built in little heater and her thermostat has been set too high since the day she was born. She never stays under the covers for long. By 2:30 this morning however, she was complaining that her belly hurt and she was very restless. The rest of the night went by without a whole lot of sleep for any of us.

Now that we are all up, Katie is tired and cranky. She wants to snuggle, but she doesn't want to lie down. Hence the picture of Amy and Katie on the kitchen floor. She doesn't want to be separated from her mother or her blanket today.

Up next on the agenda is a peaceful walk down to the river. She loves seeing the river and will likely fall asleep in the stroller on the way. After that, a ride up to Pick & Shovel in Newport for a salt block for the horses. A little time in her car seat should put her right to sleep. Not to worry, she wont be going in to the store. She and her mother will wait in the car while I go in for the salt block.

Saturday, January 26, 2008

The Blahs...

We all have a case of the blahs today. Yesterday seems to have wiped Katie out. She is tired. The little girl who never knew how to sit still doesn't like to leave the couch anymore. She cannot point to any one boo boo, so our best guess is that she just feels terrible period. She did have a bath today (it was time!), and Rick patiently combed all the dreads out of her beautiful hair. (She still sleeps on her back, and she is a restless sleeper, so if we don't comb it out often, it really gets ugly on the back of her head.) The bad news is that she is beginning to lose her hair. It is thinning at any rate. She now has a braid, however, and it is pretty. Her papa does such a good job. We did tell Katie that she will probably lose some of her hair, so she is prepared, and Rick has agreed to shave his head in solidarity, but Josh doesn't want anything to do with this plan!...

The good news is that Joshua continues to hold up remarkably well. He thoroughly enjoyed skiing on Friday. He required reminders that technique is more important than speed (:)), but he returned unscathed from this adventure. He had his first basketball clinic today, too, and he really enjoyed it. We have some skills to work on(!), but it was fun to see him playing and being a kid. He was partners with his best buddy Jack during some exercises, and I was really pleased with how focused they were. He is a surprisingly good kid. I saw one of his teachers today, and she told me that Joshua has been teaching the kids at school all about leukemia. He is growing up so fast. I worry that we won't be able to spend enough time with him or to give him enough attention. It is hard to be a normal family. We are trying, though. We ALL fell asleep in the same bed last night after reading a Magic Tree House story, and it was so satisfying to have had that time together. Joshua is playing with his cousin Kyler today, and I expect that he is perfectly happy. Special thanks to the community at St. Paul's School, where everyone is working hard to maintain his routine and to provide Joshua with some extra love and encouragement. It is a safe and happy place for him, and I would guess that it will make a big difference to him in the long months to come.

I think that may be why we have the blahs. We have all been running on adrenaline for days, and the extra energy is finally wearing off. We are beginning to realize just how little we can do to make Katie well and that we have to allow the medications the time they need to work magic in her little body. It is so unsettling to sit idly by, waiting and watching. We are ALWAYS positive when Katie is near. She doesn't need to worry about us worrying. She will not see me cry if I can help it. We will probably have our low moments in the months to come, though, so please bear with us. What we know with our brains--Katie will be just fine--is sometimes hard to remember in our hearts. So many joys await our little girl. It's just so hard to be patient.

Friday, January 25, 2008

News... not good or bad, just news

Katie and Amy have just returned home for their visit to Fletcher Allen and just as they got home the doctor called with preliminary results from the bone marrow tests. The doctors are aiming to get the percentage of leukemia cells in her marrow, called blasts, down to less than 5% of her total marrow. They were hopeful that it may have happened by now, but that is not the case. The preliminary results indicate that she is definitely above 5%, but not how far above. Had she been below 5%, she would not have needed another bone marrow extraction next week. As it is, she will be go through the whole process again next week, anesthesia, no food, no drink, and a nine hour long day. :(

On the bright side, her red blood cells and her platelets rose a little bit all on their own and she didn't need a transfusion today. Her white blood cell count continues to drop, but she is not neutropenic yet. When she gets neutropenic is when she is most susceptible to random germs, viruses, and bacteria. She is very tired right now and wants to do nothing more than lie on the couch, eat pasta, and watch Dora.

The First Trip Back

Today (Friday) is the first day that Katie goes back to the hospital for more chemotherapy, another bone marrow extraction, another spinal treatment and another round with anesthesia. Because of the anesthesia, she has not been allowed to eat since midnight last night, and could not drink after 7am this morning. She was not a happy camper this morning. At first she only demanded more fish sticks, but she ended up crying and begging for anything to eat. It was not a happy morning.

While we were getting Katie ready to go to Burlington, we were getting Josh ready to go to school. Today he goes skiing at Burke mountain with the first grade class. His personal chaperon will be Susan Gilmette. Thank you Susan.

Thursday, January 24, 2008


Katie has thoroughly enjoyed her first day home. She has eaten 27 fish sticks (27!), and she has worn a hole, I think, in Dora's Halloween dvd. How did kids get well before someone invented television? To her credit, Katie has also been up and RUNNING--for the first time in many days. I wonder how many miles she will have to run if she wants to burn off all those fish sticks?

A nurse from the Orleans Essex VNA was here today to assess Katie and to draw blood for the lab. This will simplify some aspects of Katie's visit to Fletcher Allen tomorrow. Oddly enough, she looks forward to the visit. While I am not eager to tell Katie she can't eat until noon tomorrow, I do look forward to continuing her treatment. Progress is so satisfying. Every treatment brings us closer to our goal: a healthy little girl. Thanks for your patience with all of us.

Best wishes to all of you, Amy

Special thanks, today, to our neighbors, who delivered FOOD. We are all working on gaining weight with Katie! With any luck, this too shall pass...

LR Hosts a Blood Drive.

LR hosted its annual blood drive today, and turn out was great. This blood may or may not end up being used for Katie, but it feels good to know that some blood is going back into the blood bank that we will rely so heavily on for the foreseeable future. My own blood is included in this batch.

Sleeping at Six

Ten fish sticks later, we are back in bed. My bed. The one with flannel sheets, wool blankets and a down comforter. This has always been my version of paradise, and I am happy to share it with a little girl who is now very happy.

Throughout this journey, Katie has been rough on a lot of people. She warms up to people after a bit, but it is hard for me to accept that my feisty but always friendly child is now capable of yelling at (really yelling at!) some of the people she needs most (like grandparents and nurses). Oddly enough, she rarely yells at me. It is an honor to belong to Katie's inner circle, but this membership terrifies me, too. This is the same (and very overwhelming) sense of responsibility that I first felt when Katie was born. She has faith in me. I have to make this work. For the record, I will cook hundreds of fish sticks and butter thousands of noodles if that is what it takes to keep her calm and content while the medications do their work.

If only it were that easy. Tomorrow morning we drive to Burlington for Katie's first outpatient visit, which will include a bone marrow aspiration and a lumbar puncture. Katie will be sedated for these procedures, and she will not be allowed to eat for eight hours. It won't be pretty.

Until then I will count my blessings. Josh has joined us in bed, so I'm signing off to curl up with both of my beautiful babies. What a luxury!

Fish Sticks at Five

Good morning, everyone. It is 5:25 a.m. as I draft this entry, and Katie is eating fish sticks. She is currently eating fish stick #8. Bear in mind: Katie weighs 24 pounds. The ratio of input to size is a little bit scary, eh?

We are home. I was choked up as we left Children's Hospital last night. "Freedom!" I thought. We have taken the first few steps toward Katie's recovery. Katie was well enough, as we left, to engage in conversation with the pharmacist, who had pity in her eyes as she handed us a very large bag of medications, most of which are laxatives. "Yes," I decided. "We'll take all four bottles of Miralax." Thankfully, we had occasion to dance the Poop Dance last night--and then again this morning at 5:15. There are reasons, my friends, that I am not a stay-at-home mother!

Wednesday, January 23, 2008

She's Coming Home

Amy and Katie are on the road as I write this. Katie is excited to be headed home, but as she left the hospital she shared a very unusual thought with her mother. She told Amy "That was a great adventure." I can't believe she has such a wonderful attitude after all of this.

Wednesday Morning Update

Amy and Katie were able to sleep through the night last night without a nurse visit. They are still on schedule to come home today and should be home by 5pm. Art and Kathy, Amy's parents are bringing them home.
At the time of this writing, Katie is napping.

Some people have asked how they can participate in the blood drive, and whether or not it is ok to send gifts to the kids because of the possibility of germs riding along on the gifts. Unfortunately, the blood drive is happening only during school, so you won't be able to donate after work. However, Katie is not the direct recepient of this blood any way. She gets her blood from the Red Cross blood bank, and blood collected at the school will simply go back to the blood bank. Once the blood is collected, it is tested, and then radiated before it ever goes to the hospital for Katie. The blood drive should be thought of as a way to give something back to the people who have already given something to Katie. Blood only last so long (I don't remember the shelf-life) so repeated donations are necessary to keep blood available at all times. This drive is just one more opportunity to donate.

As for the gifts, they are as safe as they can be. The doctors don't want her living in a bubble. They want her to live as full a life as possible and that means she gets to open gifts too. I wouldn't buy something from a person who is obviously sick, but something off the store shelf or made by hand at home should be safe enough. If you are really concerned, a squirt of Lysol spray couldn't hurt.

Tuesday, January 22, 2008

Tuesday Night Update

It has been confirmed. Katie will be coming home Wednesday. She had a good, although slightly less energetic day today and is looking forward to coming back home. Her blood counts are still dropping as they should be, but that means she is getting closer and closer to that point where no visitors will be allowed.

Her PICC line was redressed again today because a nurse found some blood under some of the bandages so they had to take it all off just to make sure that everything was OK. During the redressing, the IV nurse was concerned that the PICC line seemed to be slipping out of Katie's arm so she ordered x-rays of Katie's chest to make sure that the line was still in a main artery. The only problem was that she forgot to mention that to Amy so Amy was a bit alarmed when a team of new nurses descended on her and Katie to take them away to x-ray. The nurses only new that they were to pick them up for unplanned chest x-rays, but not why the x-rays were ordered. Happily, her PICC line was still in place and working perfectly. Had it not been alright, she would not be coming home tomorrow.

When Katie gets home, I would expect that things will get less interesting. I will most likely be posting updates to the blog only once each day instead of twice unless something unexpected happens. Whenever she goes to Fletcher Allen for testing or treatment I will be sure to post the results here. Thank you to everyone who has taken the time to read the blog, and thank you to everyone for all of the offers of help and support. It is greatly appreciated.

On a related note, Lake Region Deca is hosting a blood drive on Thursday at LR and they are dedicating the drive to Katie. I will definitely be donating. We are going to be using so much blood over the course of the upcoming months just to keep Katie healthy that it is the least I can do.

Amy and I are handling the situation well at this time, now that we are over the initial shock. Josh is handling it very well on the outside, but I wonder what is going on on the inside. He is sillier and more emotional than usual and he is having a hard time listening; but he never talks about his sister unless asked directly. We have talked to him about the cancer in his sister's body and how that affects her and what doctors are doing to get rid of it. I think he is struggling to process all of that information and sort out his feelings. Right now, he needs lots of love and support, but also guidance, rules and routines. I would like to keep him near us right now and give him lots of family time, but as he becomes accustomed to his sister's new limitations I would like to give him opportunities to get out and spend some time with friends and family, just playing and be five. I will keep you updated on how he is doing over time.

Tuesday Morning Update

I am home now and back at work. I just called Amy for an update on Katie's condition and she had nothing but good news. Katie has been officially cleared to come home Wednesday. From that point forward, she will be taking a trip to Fletcher Allen every Tuesday and Friday for additional treatments, blood transfusions, and bone marrow extractions. To help expedite the process, the VNA will be coming to the house on Mondays and Thursdays to draw blood from Katie so that it can be forwarded to Fletcher Allen for testing.

Katie is currently covered with petechia indicating that her platelet count is low, but she is otherwise fine. Her IV has been removed, although the PICC line remains in for treatments when she returns to Fletcher Allen. She is still eating and drinking well on her own. She even took her worst tasting medication without problem. The doctors were a little worried that she wouldn't take it, and it has to be taken by mouth. She continues to be an amazing patient.

Monday, January 21, 2008

Monday Night Update

Katie had a low key day today, taking naps and just hanging out around the room with only a couple of 5 minute excursions down the hall to the ride-on toys. Her cough is better, although I am still not happy with it. She can at least sleep without coughing now and that is a tremendous help.

She still has her appetite and is eating a lot. She still favors pasta and Popsicles at this point.

She received another new chemotherapy drug today and doctors watched her closely for adverse reactions. She had none. This drug was not fun to take. She had to get it by needle and that is never fun. However, she clung to her mother and took it like a trooper.

Her battle with constipation is finally over. I guess all of that pasta, combined with regular doses of laxative worked. The laxative will be carefully administered for the next month or so while she is taking the chemotherapy drugs that cause the constipation. The goal is to get her back to a once-a-day girl and keep her that way by varying the amount of laxative that she gets each day.

Josh and I are finally home. We arrived this evening around 6pm and he is now sleeping soundly. We each go to school tomorrow and try to get back to something resembling our previously normal routine.

The doctors are trying to prepare us for taking Katie home. The lesson for the day was hand washing, hand washing, hand washing. Did I stress it enough? Despite the fact that outside germs pose a significant risk to her health, one of Katie's biggest risk factors is the fact that she is two and puts things in her mouth or touches everything and then puts her hands in her mouth. We are going to have to make sure that she washes her hands often and that we wash our hands just as often to keep the spread of germs to a minimum. The doctors also warned us to look out for some much more serious side-effects once we get home including unstoppable bleeding, blood clots, extreme lethargy,and necrosis of tissue exposed to some of the more potent chemotherapy drugs. It's all enough to make me want to keep living at the hospital with her where she can be monitored by professionals 24-7.

Monday Morning

Good morning everyone. Katie was in a cheerful mood all night long despite being woken up almost every hour last night. We had a couple of blocks of 2 hour stretches that were pretty nice. She woke up hungry this morning and immediately wanted pasta. She didn't want to wait for room service to bring her normal breakfast up so we dug in Grandma Kathy's cold spaghetti and meat sauce. She loved it and ate two bowls before room service brought up her English muffin, fruit, yogurt and juice.

She is due for two shots today as part of her chemotherapy. We are waiting until Amy returns from her parents house at noon before giving her the shots so that both parents can be there to comfort her.

Josh is currently out and about with his friend Jack King and family. Barb and Bill, Jack's parents, offered to take josh with them for a time this morning for some play time. He was really eager to go. Thank you Barb and Bill for helping to make this easier for Josh.

Kate is a little sluggish this morning with only small bursts of energy. She is currently sitting on my lap asking to go back to her room to lie down. We have only been out of the room for 10 minutes at this point.

The doctor told me again this morning that it is very likely she will be allowed to go home Wednesday. He said hers has been the perfect text book case so far. She and her leukemia are responding to the chemotherapy just as they should. She is still constipated, but with the sudden increased appetite, that should pose a problem for much longer. Then they begin weening her off of the IV and getting her ready to go home. Knock on wood. We may be out of here soon.

However, when we get home, don't come visiting right away. She is only allowed to see people who she has had frequent and regular contact with before coming to the hospital, and even those people need to wear masks. The theory is that she already has the germs and viruses in her body that those people are carrying. The doctors do not want her exposed to any new germs and viruses from any person she gets to see only every few months or so. As her immune system continues to get worse, her visitors will be restricted to just her parents, her Nana, and her brother. And since we all work in schools, bringing home lots of germs through the course of the year, we may all have to wear masks at home.

Sunday, January 20, 2008

Sunday Evening

Only my husband would talk about our daughter's toilet habits online. What is the world coming to? For what it is worth, we are learning to disguise some fairly disgusting medications in some creative ways. What did parents ever do before popsicles? I am learning to hate popsicles...

Katie had another good day today. She has less energy now. As Grandma Jean said, "She looks like a regular kid now." In other words, she isn't running circles anymore. She is, however, catching up on years of television she has missed. Dora and the Wiggles have a certain kind of power; it eludes me entirely, but Katie is enthralled. As the medications begin to affect her more, she turns to these her new best friends for solace and some "veggie time." Once Katie is awake and moving, she is fairly animated and relatively cooperative. She is far more kind to her nurses now. She showers Rick and I with love and affection. Quality bonding time with Katie is one of the unanticipated benefits of her hospitalization. We would much rather be home, but it is nice to have quiet time together.

Once she is awake and moving, Katie is very happy to see her family and friends, and she has had lots of company this weekend. Cousins Kyler and Eric brought her nice new crayons, cool new markers and lots of love. Nana brought Josh up for the weekend, and Katie had time to simply relax with her brother, who is responding to this crisis with a kind of grace I had not expected. Rick and Jean came to visit two days in a row, as did Grandma Kathy and Grampa Heart. Uncle Mike and Uncle Brendo turned the day around for Princess Cranky today.They can always get her to smile.

We should warn you that one of the drugs she takes may have an adverse affect on Katie's behavior. Take a minute to imagine it: Take one redhead, make her two years old, give her Katie's backbone and then add steroids. Yikes. We are working hard to reinforce some limits, but you've been warned. It may not always be pretty. She was pretty feisty to begin with. We may be looking at sassy...

There is a lot about Katie that will begin to change soon. We keep an eye on her blood counts, for instance, and they indicate that the chemotherapy is doing its job. This is good news. The medications need to eradicate damaged white cells before Katie's body can begin to manufacture healthy new cells. This is also the bad news. Once Katie's cell counts really get low, we will have to be extremely careful about her exposure to germs. She won't be fully quarantined, but the effect will be the same. Please bear this in mind: We would like to see all of you--Katie would like to see all of you--but we will not be able to receive many visitors once the medications she is taking have done their work. She will not be strong enough to fight off infection, and we won't be able to take any risks. At this point, oddly enough, loving Katie may mean leaving her be. Isn't that a sad reality? Especially for a social butterfly like out Kate. On the other hand, if the steroids she is taking really do mess with her 'tude, it may be safest to stay away from demon baby!

One challenging aspect of this process for me is that my little family is rarely united in one place. I worry that Katie will receive much more attention and that our relationships with Joshua will suffer as a result of the ongoing separation. I am really looking forward to pulling us all together again in our little house in the Kingdom. I am recuperating at my parents' house as I write, and Joshua is sleeping happily. I am excited about spending some time with him tomorrow morning. He may have a chance to play with his best buddy, and we will make time to buy some more Magic Tree House books. Sometimes it is just thrilling to spend time doing some very normal everyday things.

On a happy note, Rick will return to Barton with Joshua on Monday.We both miss our students and our school community. We should publicly recognize, again, the wonderful people--adults and teenagers alike--who are working with us to come up with a plan that meets all our needs. The odd but true story is that I miss teaching. Grading papers never looked so good.Many thanks to the students who have sent us cards and letters. They mean a lot to us.

It will be so nice to go home, but we should also mention the incredibly kind and generous people at Fletcher Allen who have done so much to make us comfortable during our stay--competent nurses who are also friendly and forgiving and capable doctors who know how to smile. Katie loves her doctor, who gave her a LiveStrong bracelet today. She took a nap with it in her hand today.

That's a good place to end this post, I think--with a sense of optimism and gratitude. Many thanks for the well wishes. We'll keep you posted.

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.

Saturday, January 19, 2008

Saturday End-of-Day Update

Katie had another great day today. She was energetic and in good spirits despite being woken up every 3 hours during the night for a check up and then not getting a nap today until about 3pm. Her blood counts are good right now. Red blood cells, white blood cells, platelets and hemoglobin are all within acceptable limits.

After changing the PICC line, we have had no further troubles with that and blood is being drawn and medicines given without needles or further pain.

Josh finally got his chance to come to the hospital and visit his sister. He knows that she is sick and that she is in the hospital, but he doesn't quite grasp just how sick she is or why it is so important to keep germs and viruses away from her. However, he is playing along nicely and wearing a mask and washing his hands frequently while here. They got to spend some time checking out the play room with us and then hanging out in bed watching TV and eating Popsicles. Katie just can't seem to get enough Popsicles.

I wanted to post the actual cell counts from her blood tests today, but I left them at the hospital and I am now resting comfortably with my in laws who live nearby in South Burlington. I have Josh with me tonight while Amy stays at the hospital with Katie. I will try to post specific cell counts tomorrow for those of you who are interested. I will also take Josh back to the hospital to spend more time with his sister and tomorrow night Amy may take a break and come stay here with Josh while I stay with Katie. Parents just don't get much sleep in the hospital.

Saturday Morning

Good morning, everyone. Katie is happily riding around in her favorite car this morning but has allowed us to stop and write while she eats chocolate cake. (Life is so hard...:))

The good news is that the nurses have fixed Katie's PICC line, so they can draw blood and administer medicines very easily. Katie is reacting well to her medications so far. It is early, and she may have more trouble with side effects pretty soon (24-48 hours), but she is managing well for now. Mornings are rough--she has trouble waking up and getting moving--but she is surprising lively once she is up and moving. She isn't eating as much, but that's normal. So far her blood counts are good. That will change soon, and we will need to be very careful about her exposure to germs, but she is learning to wear a mask. I have these funny pictures in my head of my littlest tomboy wearing a basketball sweatshirt (always basketball), a tiara, clip on princess earrings and a mask. It should be quite a look.

Katie continues to impress us with her strength and with her quirky sense of humor. She does what she is asked to do, plays when she can, smiles when she can and chatters away through it all. (She has not stopped talking in days!) She is ambivalent about nurses--they do the mean things--but she is warming up to them (she has favorites), and she loves Dr. Hollmans, who tickles her and even kisses her stinky feet. (Ewwwww...He's a brave soul.)

This is a challenging time for us because we are in something of a holding pattern, waiting to see how the medication affects her cell counts and hoping that her strength will return full force after the chemo breaks down and then flushes out all the leukemia cells. One funny note: We wear gloves now when changing Katie's diapers because of the toxicity of her urine. We probably should have been doing that all along! (Wouldn't that have made her first year with us more pleasant?!) We continue to smile and to laugh, and Katie responds well to good cheer.

Katie is really looking forward to seeing Joshua today. She asks about him often. We are even more excited to see him. We are eager to return to normal activities like playing with Legos and fighting about who gets to take the recycling out.

On that note, we really want to thank everyone who has pitched in. Thanks to my parents for bringing us really good cookies, lots of hugs and encouragement and the little important things like laundry detergent. ("Don't you even think about it," Grandpa.) Thanks to Rick and Jean for caring for our naughty little dog and for finding her a good new home. (We'll grieve that later, but we really do appreciate their efforts to find her some great new people to live with so we can get some germs out of the house and not have to put her in the kennel every time we return here for more therapy.) Thanks to Nana for raising Joshua in our absence. Thanks to Joshua, who is an extraordinary boy. Thanks to Auntie Heather for distracting us during Katie's tests on Thursday and for the Wiggles dvds. (We have already learned to hate the Wiggles!) Thanks to Sara, who is teaching my classes, to Mr. Harter , who is giving us time to figure this out, and to everyone at Lake Region who has sent along kind wishes. The littlest things mean a lot to us right now. It is really difficult to express just how much we appreciate your support. Thank you for running our lives so we can be here with Katie. We are looking forward to seeing all of you very soon! Love, Amy, Rick and Katie Grace

Friday, January 18, 2008

Friday Update

Today is the first day of Katie's official chemotherapy treatment. She actually got her first dose of chemotherapy yesterday during the bone marrow extraction, but that was a generic treatment that would have a positive affect on whatever form of leukemia she had. The new treatments beginning today are designed specifically to attack the form of leukemia that was found in her bone marrow.

Katie hasn't had any real side effects from yesterday's treatment. She has only experienced a small tummy ache that has diminished her desire to eat a little bit, but we have been assured that it is only temporary. A side effect of another one of the drugs she will be getting is that she will end up with a serious case of the munchies.

She is becoming accustomed to all the doctors and nurses that keep visiting, testing, and medicating her. Her IV was replace with a PICC line yesterday during the marrow extraction. The PICC line is more durable and more useful than the IV and it allows blood to be drawn without using any more needles. She was actually able to sleep through her blood withdrawal this morning.

The PICC line is also placed in her upper arm instead of in the veins at her wrist, so she has a lot greater freedom of movement. She has been playing, crawling, and even trying to jump in her bed.

She has been taking her medicine as if it were candy. Anything that needs to be taken by mouth goes in effortlessly, and usually in a mixture of drugs/melted popcicle. She likes the red ones.
One of the doctors told us this morning that they are expecting Katie to respond well to the chemotherapy and have scheduled her next bone marrow extraction, which is next Friday, as an out-patient treatment. We like the atmosphere here at the Vermont Children's Hospital, but it would be nice to take her back home too. So, we are crossing our fingers.

We have also been told that she is expected to get sicker over the next couple of days as her body learns how to deal with all of the different chemicals and all of the dead leukemia cells. The chemotherapy should kill off one to one and one-half pounds of leukemia cells in the next 48 hours. Given the fact that she only weighs 24 pounds, a pound of dead cells is a significant portion of her overall body weight.

Katie also had her first of many transfusions last night. The idea of a transfusion, or even of needing one is frightening. However, after watching her get the transfusion last night and seeing how much more life she had after the fact, I am thrilled. She went from a lethargic, pale, child to an energetic, animated bundle of wiggles after about twenty minutes of transfusion. The whole process took about three hours and she was asleep by the end of the transfusion.

Thank you to everyone who is already pitching in and helping out. A special thanks goes out to Robin Kay (Nana) for taking care of Katie's brother, Josh; and to my parents for taking care of the dog; and to Gerry and Cindy for taking care of the house; and to everyone else who is doing what can be done to make this difficult time easier. Thank you.

Initial Bone Marrow Results

Katie's early bone marrow tests are complete and the results are in. She definitely has A.L.L. (Acute Lymphocytic Leukemia). The doctors are telling us that this is a "good" thing, and that if she has to have cancer, this is the one to have. ALL is the most common form of childhood leukemia and chances of successful treatment are pretty good.
As of right now, initial treatment will last for 7-10 days depending on how she reacts to the chemotherapy and how well the leukemia cells are responding to the treatment. If all goes well, we could be back home within a couple of weeks, and then just traveling back and forth a couple of times per week. If all does not go well, the initial treatment will be modified and we will be here longer.
She has already had her first chemotherapy treatment and that seemed to go well. so we are hoping for the best.

The Katherine (Katie) Grace Kelley Blog

What & Why?

This Blog exists because Katie was just diagnosed with Acute Lymphomic Leukemia and we, her parents, want the people who know and love her to be able to follow her daily progress as we battle this disease.


Katie is the daughter of Rick and Amy Kelley of Barton, Vt. She is two years old. She has one brother, Josh, who is five years old. She loves basketball, dogs, cats, and especially horses.


Katie was first diagnosed with Leukemia Tuesday, January 15, 2008. She had been sick for a few days at home, coughing all night long and having trouble sleeping. She was pale, weak, and tired. She had also been sick off and for a little more than a month. Amy scheduled a doctors appointment for after work and we picked her up from day care and had her to he doctor's office in time for her 5:20pm appointment. By 6:30 we had been sent to North Country hospital for x-rays and lab test to figure out why she wasn't getting any better. At around 8:30pm, her pediatrician informed us that the blood samples taken in the lab indicated that she might have Leukemia and that she would be transfered to Fletcher Allen for further testing.
The next morning, she took her first ambulance ride to Fletcher Allen for testing of her bone marrow.


Katie is currently a patient at the Vermont Children's Hospital, a part of the Fletcher Allen Hospital.