Wednesday, April 30, 2008

One Big Happy Family Again

I took this picture using the camera's self timer just a few minutes after Katie and Amy got home.
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She's Coming Home!

Amy and Katie are on the road now and heading this way after a quick stop for chicken nuggets, French fries and a hamburger. I spoke to Katie briefly by speaker phone as they were driving and she shouted from the back seat, "Daddy I'm Coming Home!!!". Now I have to go get ready for their arrival. Katie doesn't need any special arrangements, but Amy will be pretty upset if the house is as messy as it currently is when she gets home.

The Light at The End of The Tunnel

Things are looking up this morning - way up. Katie's ANC this morning was 190, which is not all that high by itself, but she has also been 48 hours without a fever which is another big milestone. The doctors have ordered her taken off all anti-biotics and completely off of her IV. If she shows no negative reactions to this new freedom, and she eats and drinks today like she is supposed to, she can go home.

So far, things are really on track. She is already eating and drinking today.

Her hemoglobin is currently at 9.5
Her platelets are 128,000

This news has made Amy and I both very happy.

Tuesday, April 29, 2008

The Good Signs Continue

I have just talked with Amy and gotten further updates on Katie's cell counts, her medications and her experiences wandering the halls outside her room. Katie's white blood cell count is now up to 1007. Her hemoglobin is currently 8.8. Her platelets are a blissful 103,000 which should mean that petechia are a thing of the past for now. Her antibiotics have been cut from the three that were giving her the nastier side-effects of whole body hives and the deteriorating stomach lining to just one. The remaining antibiotic is Ceftazidime, a drug that she has had in the past with no side-effects.

Katie is still feeling good. In fact, she walked on her own today without help from her mom. She found a little shopping cart to play with and she walked down the hall to a little kitchen area just for the patients at Baird 5. The room contains a fridge (stocked with ice cream, Popsicles, and milk), a microwave, a water and ice dispenser and cupboards filled with things like crackers, cereal, soup, and other kid friendly food. She put a container of ice cream in her cart, grabbed a spoon and headed down the hall to eat in the play room. Unfortunately, after twelve days of mostly bed rest and no walking, she was a bit unsteady on her feet and she ended up falling down and getting very upset about that. Her ability to walk has also been compromised the the Vincristine that she received as her last chemotherapy drug. It can effect a person's nervous system and make it difficult for the legs and feet to do what they are supposed to do.

Aside from that, she is having a really good day, and that has put Amy in a really good mood as well. Looking ahead to next week, we may actually be able to bring her home again. Bringing her home this weekend may even be a remote possibility. Of course, no doctor has been foolish enough to say this. I'm just sharing my hopes in a public forum.

ANC Still Climbing

The quick and dirty update of the morning is that Katie's ANC has climbed to 150, she has not had a fever for 36 hours and she is full of energy. Amy was unable to locate the other numbers from this morning's test results quick enough to make Katie happy because she was chomping at the bit to get out into the hallway to play with the pink car again. She was also trying to use her elevated hospital bed as a slide which was making Amy too nervous to stay on the phone for long. The doctors are happy with the current situation and are going to start dialing some things back. To start with, they are going to keep her on the total nutrition IV for only 12 hours per day now instead of the 24 hours per day. That should give her an appetite again and get her to start eating on her own. Beyond that, we are still just watching the numbers.

Monday, April 28, 2008

Late Night Update

This will be short. Katie felt better as the day wore on to the point where she got out of bed again and rode around the hallway in her favorite little pink car again. In fact, she went out twice to ride in that car this afternoon. That about sums it up. I spoke to Katie tonight on the phone and she sounded great. I can't wait to see what her numbers look like tomorrow.

The Numbers are Still Climbing

Katie's ANC is still climbing as of this morning. It has now reached 110. I am ecstatic, but that number just can't climb fast enough for me. Amy is feeling the same way and she has already asked the doctors to reduce the number of antibiotics that she is on, but the doctors want to keep her on the current levels of antibiotics until Katie's ANC is at least 500. Keep climbing Katie. Her platelets are up to 74. Her white blood cells are up to 740 and her monocytes are up to 39%.

Despite her cellular numbers climbing, she doesn't appear to feel any better today than yesterday. She has spent most of her morning snuggling in her mother's lap or resting in her birdie nest. She is playing opossum whenever someone enters the room. She closes her eyes and pretends to be asleep so that people wont bother her.

We are getting a bit anxious now because it seems like we can see the light at the end of the tunnel and we can definitely see the negative consequences of this many drugs for this length of time. Its time to bring her home.

Sunday, April 27, 2008

From a Promising Start to a Rough Day

So Katie's day started out on a high note, with her numbers being up pretty significantly for her. Her platelets climbed to 66. Her white blood cell count climbed to 570. Her ANC climbed to 20. And her monocytes, which are necessary for neutrophil production, climbed from a mere 4% yesterday to a whopping 30% today. For those of you who have gotten lost in all of the technical terms and acronyms we have been posting lately, the neutrophils are the N in ANC or Absolute Neutrophil Count.

From those good signs, things went down hill fairly quickly. Her temperature fluctuated up and down all day long ranging from 38+ degree fevers to 36.5+ low normal temperatures. Every time her temperature climbed over 38, she was given Tylenol to bring it back down. On top of the recurrent fevers, she had her very first allergic reaction today. She reacted poorly to her Vancomycin antibiotic today, developing large hives all over her head and body. She was quickly given a dose of Benadryl to combat the allergic reaction and the Vancomycin was allowed to continue flowing through the IV.

She spent the rest of her day either feeling bad, or sleeping. Much of her time was spent in something she calls her "birdie nest". The birdie nest is a large chair in her room that we fill with pillows, leaving a large depression in the the center, and cover with blankets. She snuggles into this nest quite happily and will spend hours in it playing and napping. The picture that I uploaded with this blog entry is of Katie in her birdie nest.

The final negative straw for the day as far as I am concerned is that she is now vomiting blood. She started when I was on the phone with Amy around 8PM tonight, getting the evening update. She vomited blood again at 10PM. The doctors have already taken a look at her, and believe that it may be the antibiotics that are irritating her stomach lining now and they are going to start giving her some stomach coating medications to counteract this new irritation. After getting this last update, I told Amy that she couldn't call with any more updates tonight because the news kept getting worse.

Josh and I spent most of the day at or near the barn. We did get out a do a little fishing, but the fish failed to cooperate and we didn't get a single bite. However, we did have a good time just being outside in the sun and the fresh air. Josh's cold is mostly unchanged. He coughs a little during the day but sleeps soundly at night. His most serious coughing spells occur whenever he runs and plays.

A Sunday Morning Filled With Promising Signs

I'll get right to the good stuff and then get back to the more mundane stuff. Katie's white blood cell count is now up to 530 and her ANC is now up to 20 fom zero! That's the good news, and the rest is pretty much the same as it has been.

Katie slept well last night and she still has a cough, and now also has the sniffles and her left eye has begun to weep. She is still not eating, but she is drinking plenty of milk and water. She is still on her TPN and lipids. I may have forgotten to mention the lipids the other day, but the TPN provides all of the nutrients her body needs but it provides none of the fats. The lipids provide that little extra fat that she needs to continue being a healthy, growing girl.

The hemoglobin transfusion last night really helped to boost her energy and she has been moving about in her room ever since. She did still have a fever last night and she has one again this morning, but it's a low grade fever of 37.8 C. If it reaches 38 C, she will get some Tylenol.

Josh and I are headed out to his Nana's house for a pancake breakfast. Then will are going to try to get in a little bit of fishing before coming home. He even wants to try and talk his Nana into going fishing with us. We'll just have to see how that turns out.

Saturday, April 26, 2008

Saturday - Mostly Good With a Mix of Blah

Katie had a reasonable good day today. Her platelets came up a little bit, her white blood cells and ANC are pretty much unchanged, and her hemoglobin is low enough to require a transfusion. She got the transfusion this afternoon, and has been feeling pretty good ever since. However, before that time, her temperature kept rising and falling for no apparent reason until finally reaching 38 Celsius and then she was given Tylenol to break the fever. She spent most of the day relaxing and napping in her mother's arms while Amy read her story after story. I don't know how she reads so many stories, but she keeps going long after my mouth and throat are parched to the point where I have to stop reading out loud.

The transfusion really seemed to perk Katie up a bit and when I spoke to them last at 8:30, Katie was gleefully telling stories in the background as Amy and I tried to have a conversation. I told her she should try to read enough stories to get Katie to sleep some time soon, and she was going to try but she didn't have much hope of accomplishing anything soon.

Josh, however, is already fast asleep. When we returned from Milton today, we stopped at the house only long enough to put on some warmer clothes and then we went straight to the barn and stayed there until bed time. We took our first horse-back ride of the year, giving Charlie a bit of exercise and relearning how to ride double-bareback. It was fun and relaxing. Later we flew a kite in the strong winds that were blowing on top of Burton hill. We also sat and visited with Robin, Josh's Nana, and her son Sean and his girl friend Andrea. It was a very nice way to spend the rest of the day. Josh didn't take a nap while he was there, so he was tired when he got home. It didn't take him long to fall asleep.

Tomorrow morning will start off again just the way Josh likes it - at the barn for a breakfast of pancakes with his Nana. After that, I have some work to do to get ready for school on Monday. Living at Fletcher Allen for days at a time really makes it difficult to stay on top of my online interactions with my students. I have no connection in the room and I can't take Katie to a room with a connection, so I prepare for a week at a time whenever I'm at home.

The Morning After

The camping trip went well last night. The kids all slept through the night and the temperatures were pretty good for sleeping. It felt like it dropped into the low 50's or upper 40's last night. Josh's cough is worse this morning. In fact, I don't think I want to subject my brother and his family to the germs that Josh is spreading. He coughed to the point of vomiting just after getting up this morning.

Katie slept well last night after her fever broke at around 9pm. However, her fever came back this morning and is currently 37.7. She has had no adverse reactions to the TPN IV wich is good since she isn't eating much again this morning. She is also still coughing this morning and her cough has started to have a little bit of a loose, bubbly sound to it.

Since Josh is as sick as he is, I think I will take him home today instead of continue to subject other people to his germs. For now, we are finishing up breakfast packing up and deciding exactly what our day is going to look like.

Friday, April 25, 2008

Changing of The Guard

I'm back online and Amy has relieved me at the hospital. Interestingly enough, I am not online in a traditional setting but from my laptop while sitting in front of a campfire beside a tent in my brother's back yard with my brother Ryan, my son Josh, and his cousins, Kyler and Eric. I was not prepared for this makeshift camping trip, but Josh has a bit of a cold so Amy dropped him off at my brother's house before coming to the hospital. By the time I got there, they had already cooked up this little plan and were busy moving sleeping bags into the tent. So I just traded the hospital bed for the hard ground. Somehow, I don't feel like I'm getting the better end of this deal. I'm going to miss my Thermarest, my sleeping bag, my warm clothes and every other camping item that I would have brought had I been forewarned.

But enough about me - back to Katie. When I left the hospital this evening, Katie had a temperature of 38.4 Celsius. She was in good spirits and has been in good spirits ever since she vomited this afternoon. I'm not sure how much Amy has passed along in my absence (I didn't read the earlier blog postings before starting this one) so I will give a brief synopsis. She has had a fever, off and on, for the past couple of days and has stopped eating anything meaningful. To handle the eating problem, A new IV has been ordered called a TPN which should provide all of the nutrition she needs even if she doesn't eat. The fevers are a bigger problem. The doctors are not fond of this newest rash of fevers so that are starting Katie on a new round of antibiotics, afraid that they may be missing something in the cultures. In addition, Katie developed a small cough today which is really the first localized symptom that we have seen in days. Given the cough, no one wanted to take a chance that something might be wrong with her lungs, so a CT scan was ordered and Katie underwent her first CT scan with flying colors. We had a couple of hours to prepare for the scan so I spent some time telling her what to expect and explaining how the process would work. I even used a small toy dog and some parts from the hospital bed to simulate someone sliding into a CT scanner. Katie admitted that she was scared, and her eyes were as big as saucers going in, but she held still and the technicians were able to get a good picture of her lungs very quickly. It helped the the Child Life people hooked us up with a portable DVD player and a Dora video for Katie to watch while she was getting scanned. I was able to don a lead shielded apron and stand next to Katie, holding the DVD player so that she could look at the screen and watch the video upside down while being scanned.

After the CTscan, Katie happily went back to her room and took a desperately needed nap. Unfortunately, she vomited about 10 minutes into her nap and had to start all over. After I got her all cleaned up, she slept peacefully for the rest of the afternoon. She even got some of her appetite back and ate a little tortellini for dinner. She was very happy to see her mother, and spent lots of time giving her hugs and kisses and telling her she loved her. Josh was just as happy to see me, but Josh, I am unhappy to report, has a cold. He won't be allowed near his sister until his cold clears up, so they won't see each other at all this weekend. Katie asked for Josh too, but she accepted it well when we told her why he wouldn't be allowed to visit.

At this point, we are going to wait and see how Katie handles the new anti-biotic and anti-fungal medications. If things are pretty much the same next week, she will probably have her bone marrow pulled and tested on Wednesday. The bone marrow test will let the doctors know whether her marrow is producing healthy cells like it should be or whether it is producing leukemia cells again which might explain why her cell counts are not coming back up like they are supposed to. Hopefully, she recovers before that time and the tests only show healthy, productive cells that were just repressed for a while by a combination of chemotherapy and a viral infection.

With these happy thoughts in mind, I will now curl up next to my son and go to sleep in this tent with the smell of camp fire smoke in the air. This is our first camping trip of the year, even if it is in the back yard, and I will make the best of it.

Unhappy Update

I just spoke with Rick, who had a lot of news.

Because Katie has been sick so long, the doctors are changing some of her medications and preparing for some new tests. They are beginning to suspect that the source of infection may be in her lungs, so they are planning to perform a cat scan this afternoon. They are also planning to change her antibiotics. They are starting to look for less typical explanations of her illness.

(I am learning to hate the word "rare." "We don't see this much" is not a heart-warming phrase, as it places Katie in a category all her own, with possible complications that are more difficult to identify and to treat.)

Katie is getting intravenous liquids again. The doctors are planning to begin intravenous feedings this evening. Rick and I have been concerned about Katie's weight for a while; the doctors are worried, too, so they are preparing for iv food.This should help her keep some weight on. I hope it gives her some strength.

If we are still in the hospital in the middle of next week, the doctors will perform a lumbar puncture to rule out a relapse of the leukemia. So the nightmare continues. That is the worst possible outcome, of course, but I am busy reminding myself that it hasn't come to that yet and that nothing indicates a relapse. She is probably just fine. Our best bet is to stem the tide of panic and simply hold on.

Rick's plan is to enjoy the good moments--she was very happy to see the therapy dogs this morning!--and to remember, in the bad moments, that more good moments will come. I will be very happy to see my girl this afternoon.

Struggling

Katie continues to struggle. She had a rough day yesterday. She wouldn't eat, and she wouldn't drink. The doctors are planning to push fluids through her iv again, so "the tubeys" are probably coming back. The iv solution does contain sugar, too, so that should keep Katie going.

There were two highlights of Katie's day yesterday: a therapy dog visit featuring a Great Dane taller than her bed and a hot dog. The hot dog was apparently the only food item Katie was willing to consider--she saw one on television, and this inspired her interest--and the hospital staff worked together to pull off the miracle of a hot dog. The menu does not feature hot dogs, of course, and Katie's interest in the hot dog occurred after the cafeteria had closed for the day, so a very kind medical student named Liz probably had to beg, but she appeared with a hot dog just as I was talking to Katie on the phone, and it was clear that this was a breakthrough moment. God bless Liz and the kind fellow in the cafeteria. Susan Guilmette has suggested that we call him Saint Hot Dog, and I like this new moniker. Let's add these two to the list of incredibly kind people who help us out not because they have to but just because they are good. They made her day.

Katie is not having a great day today. Her fever has returned (38.3 C), and her ANC remains 0. I had planned to stay at my parents' house with Josh tonight, but plans have changed. Rick could probably use a break, and I need to see Katie. While it is good to be home--I am happy to be at school and to have some time to spend with Joshua--I need to get back to my girl. My return to her life won't help Katie much. I cannot take the fever for her or lend her my immune system. I need to get back to Katie for my own selfish reasons. I need Katie.

I am hoping to spend some time with my husband this weekend, too, and Joshua really wants to see his sister. We need some time as a family. It feels like each of us is a single parent, like the circumstances have broken our family into two halves that change every few days when we trade kids and locations and responsibilities.

We are managing, though, and I do have a funny story that features Joshua. When he got to Lake Region yesterday, he said, "I was only bad twice. Or maybe three times." What? A long story about rough behavior on the playground followed this revelation, and then he admitted that he had not listened to his teacher. (A mortal sin.) I marched him down the hall, where I called to get his teacher's home phone number and he began making her a picture. When we had finished our horse chores, we called his teacher, and he expressed a great deal of remorse before inviting her to go to the circus with us. When I had regained my sanity and could reflect on the day, I realized two things: He did a really good job in telling me what he had done wrong, and he did a very good job of apologizing. We're getting somewhere! The further good news is that I saw his teacher today, and she is planning to send him to first grade with the rest of his class in the fall. He will be thrilled.

Raising kids is such an adventure. I will forward further information about Katie's day after I have talked with Rick. Happy weekend to you all.

Thursday, April 24, 2008

Waiting...

We are waiting. That is, I'm sorry to say, all that I have to report. We are waiting for Katie's body to do what it does best.

I hate waiting.

The good news is that Katie's blood counts are dropping but slowly. The doctor assures us that this is a sign of growth. If Katie were in more trouble, her cell counts would drop quickly. The slow decline is an indication that her bone marrow is making new cells on its own. Her body isn't producing cells fast enough, but it is producing cells.

I was hoping that Katie could have a break from the antibiotics, as they affect her belly, but her doctors have elected to continue with antibiotics just in case. Yogurt does help, and my parents have delivered some smoothies. I wish there were another magic potion--a miracle food--but there is no such thing.

So we're just waiting. I'll let you know what I hear.

Wednesday, April 23, 2008

An Adventure for Miss Katie

The bad news is that Katie has another fever. Her temperature goes up at night, and she just cannot seem to shake whatever this is.

The good news is that Rick talked her into eating real food for dinner AND he took her out on the town: The doctor allowed Katie to walk the hospital's halls this afternoon, and she enjoyed herself immensely. This was a brief sojourn--she was back in bed thirty minutes later--but she got to venture out into the hallway for a change of scenery and a dance with dad. She was thrilled, as was her proud papa. I'm so glad she got a break from the isolation chamber in which she has been living.

Joshua continues to do his level best at home. We are experimenting with an allowance that he earns by taking responsibility, himself, for getting dressed in the morning and brushing his teeth. He helped me water the plants today, too. Little by little, he is taking charge of himself. He had a good day at school and showed up in my classroom just before 3:00 with his best buddy Jack. We visited all of Lake Region's teams during a lengthy walk about school grounds (lollipops, too!) before Josh went to Jack's house to play so I could tend to the house. I raked leaves for ninety minutes, and it was great! It felt so good to move and to work some muscles that haven't had anything to do because I have been so busy watching Dora. I expect that I will sleep far better tonight. Joshua didn't even ask for stories. Zzzzzzzz....

Katie was asking for stories when I talked to Rick. She is a story piggy. When I have finished with the laundry, I am going to fill the bookshelves I prepared for her. I know she won't be coming home soon, but I want there to be a good surprise for her when she arrives! There has not been any indication of when the doctors will release Katie, but I can't imagine she will be home soon. I'll take family pictures with me when I visit this next time--and some dvds that do not feature every child's favorite explorer.

I hope that you will all sleep well, too.

Signs of Improvement

I had a hard time leaving Katie in Burlington last night, and I did not get home in time to put Joshua to bed, but I thoroughly enjoyed spending time with him this morning. It made me feel better about leaving Katie. She was very happy to see Rick, and I would guess that he was happy to see her, too.

She had a good night's sleep last night--the first in many days--and it appears to have done her some good. While her other counts are dropping, her white count has been inching up and is above 300 for the first time in a long time. When I talked with Rick this morning, he was still waiting for Katie's neutrophil count. He was happy to report, however, that she was willing to eat something other than chicken noodle soup--cereal!--and that she was relatively energetic. It appears that maybe she is turning an important corner. Keep your fingers crossed, ladies and gentlemen. I'll forward any further news as soon as I have it.

It is awfully nice to see the sunshine again...

Tuesday, April 22, 2008

Tuesday Update

I spoke with Amy earlier this morning to get an update on Katie. This is what she had to tell me:
Katie was sleepy this morning because her sleep was broken up again last night in a fashion similar to the night before. She would wake up every twenty minutes or so, toss and turn, whimper and fall back to sleep. She also went to sleep fairly late even though Amy dictated bedtime around 8pm. They spent lots of time reading together waiting for Katie to fall asleep, but the little girl is becoming nocturnal. Her days and nights are filled with the same atmosphere, the same activities and the same regular nurse visits whether day or night. Her internal clock has nothing to takes its cues from anymore.

Aside from being a little sleepy this morning, Katie is very animated. She is chatting, smiling, laughing and playing. She is also feeding herself now which is nice to see again. Before I left Sunday, she was unable to feed herself because she couldn't hold her hand steady enough to get the food to her mouth. Her hemoglobin is currently at 9.5 which is respectable and the doctors are happy with that. I'm actually a little disappointed because her hemoglobin levels Sunday were 10.2. Still, she is above the level of a red blood cell transfusion.

Her fluid levels are also good - so good in fact that the doctors are going to disconnect the IV except for when they need to use it to put in medicine. That will give Katie a few hours of freedom from her tangled up IV lines and might help her sleep better tonight.

The bacterial cultures have still not shown any signs of bacteria that would have made Katie sick. Therefore, the antibiotic drugs are going to stop going into her system tomorrow. In addition to that, her next chemotherapy session is being postponed to allow her to have some "normal" recovery time at home at the end of all of this.

That's all I have for now, but things seem to be looking up. Oh, and that massage I mentioned yesterday... Amy was scheduled to get that at 11:30 this morning.

Monday, April 21, 2008

A Little New Information

Katie's day has improved a bit since this morning, but not a great deal. She doesn't seem to be in as much pain and she is willing to eat. The good news is that her ANC might be starting to climb again. It is her ANC that lets us know how her immune system is doing - the higher the better to a point. Her ANC has been zero for a couple of days now and 500 is usually considered the cutoff point for an effective immune system. Well, as of this afternoon, it is up 4%. I asked what 4% translates into but I haven't gotten an answer yet. I'm going to assume that 4% does not mean 4, but that her ANC is probably a little higher - like maybe 25. Either way, it is good sign. Another good sign is that her intestinal bacteria test showed that Katie still has the necessary bacteria in her system to digest food properly, and they are not accompanied by any bacteria that would make her sick. Conversely, the good signs are accompanied by another bad sign. Her platelets are dropping again for no known reason when they should be recovering.

Earlier, I noted that Amy was pretty frazzled... The hospital staff noticed too. Keeping the parents mentally and emotionally healthy is an essential part of making the patient healthy again, so the hospital is taking steps to help Amy relax a bit. They have arranged for Amy to receive a massage. She LOVES massages. With that kind of treatment, she may not want to come home Tuesday night when I go there to relieve her.

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.

Sunday, April 20, 2008

Mostly More of The Same

Katie spent the day lying around, watching TV, napping, a playing with a little play dough. The big changes for the day are that she hasn't had a fever and she is eating more. Her ANC is still zero but the doctors expect it to start climbing soon. The underlying source of the fever and the low ANC has still not been discovered and may not ever be discovered. Josh and I are home and getting some sleep before starting our week of work and school. Amy and I will trade places Tuesday night. She will come back home to work and stay with Josh while I go to spend a few days in the hospital with Katie.

Saturday, April 19, 2008

Still No Change



Katie spent the entire day in bed, suffering from a low grade fever. I know that I wrote that her fever had broke last night, but it came back by 10am and stuck with her for the rest of the day. It left her feeling generally low on energy and unwilling to move, be moved or be touched. However, she did at least have enough energy to interact with people today and was generally in a good mood as long as the person she was interacting with was not trying to take her temperature, take her blood pressure, give her medicine or change her diaper.

Because of the sustained fever, the doctors have added another antibiotic to the stream of drugs flowing through her IV. The cultures so far have tested negative for all of the nasty bacterial infections so far, so the doctors are thinking the cause of Katie's symptoms is some kind of viral infection that her body will have to fight off on its own.

Given that possibility, it now looks like Katie will stay in the hospital until Wednesday or Thursday of this week. Katie hasn't complained yet, but this stay at the hospital has to feel really long. The first time we were admitted, back in January, she was allowed to wander the halls at will, ride bikes, visit the play room, etc... This time, she has been and will be spending all of her time in her little isolated hospital room.


Josh and I will be headed home Sunday while Amy and Katie stay at Fletcher Allen. School starts up again Monday and Josh and I will be back in school and on our regular schedules again for a couple of days at least. Beyond that, Amy is definitely going to need a break and she will be wanting some time back at school herself, so I will probably finish out the week back at Fletcher Allen. I'm not looking forward to spending even a couple of days in Katie's little hospital room. I don't know how Amy has already spend three days in there and is looking forward to another two or three. I want to thank Ryan and Heather for letting Josh and I stay with them this week while Katie has been in the hospital. Josh and Kyler have had a great time playing together.

Saturday Morning Ups and Downs

As of this morning, Katie's hemoglobin was climbing again and was at the respectable level of 10.2. That is one of the "ups" for the day. Another up is that her fever broke last night at 10pm and she is feeling well enough this morning to be happily talking and eating this morning. She is requesting chicken soup as fast as she can get it.

The only down of the day so far is that her ANC has continued to drop and is now a perfect zero and her platelets are low enough to require a breakfast transfusion. Doctors have said that her ANC needs to be at least 500 before she can go home, so this is likely to extend her stay a little longer. On a positive note, the doctors told us this morning that we are likely through the hard part and now she should start the recovery process and we just have to wait.

Friday, April 18, 2008

Great Kid, Not a Great Day

As Rick reported, Katie and I made the customary trip to Burlington for chemo, and they decided to hold onto us a while longer. Katie did not have a good night. She didn't sleep much, so she has been lethargic, quiet and cranky today. (I'm familiar with cranky, but we don't see lethargic very much, so I would describe her behavior as unKatielike at best.) Her temperature continues to follow its own whims, scooting up and down according to its own schedule, so the doctors have ordered a second culture to determine what the culprit is: bacteria, virus or fungus. (Gross, eh...) I have read each of the stories we toted along eight or ten times, and we have watched a lot of television (I don't get SpongeBob), but Katie has actually done very little today. We are solving all of her problems (most of which are related to digestion) one at a time, hoping that each step forward will represent progress. I am in the Ronald McDonald room doing laundry so Katie can wear the new pajamas Grandma Kathy found for her. She is experimenting with PlayDoh--a sign of life!--while getting blood. She had not eaten enough to sustain a mouse today until she discovered a turkey sandwich. We're hoping this means she is turning a corner. We don't currently know how long we will be staying, but we do know that her ANC has to come up quite a bit and that she has to be fever free for forty-eight hours before we can make the trip to Barton. I'm sorry the news I have to deliver isn't more cheerful. I'm just not feeling that cheerful these days. Katie doesn't want to be here, and she isn't feeling particularly cheerful herself. It's best not to worry, though. Katie will be fine. We are in the best possible place, and we will travel on home as soon as we can. This is just a bump. It's not a fun bump in the road, but it's just a bump. We are actively hoping to see you all soon.

ANC of 10?

Katie was lying in bed, looking lethargic and feeling pretty bad when I got to the hospital last night. I was really quite shocked to see her like that since the last time I saw her awake she had been running around and dancing. Apparently, the all day fever was really taking its toll on her little body.

The highest temperature she reached yesterday was 101.3 and by the time I got to the hospital, her temperature with Tylenol was down to 99.8 but her entire body was aching and sore to the touch. The most impressive number I heard last night had nothing to do with her temperature, but everything to do with her blood tests. She is considered neutropenic if her ANC (a portion of her white blood cells) drops to 500 or below. At that magic number, she essentially has no functioning immune system left. Since this ordeal has started she has dropped below 500 many times, but usually, she would drop down to around 200 at the lowest. Yesterday's ANC was a whopping 10. I didn't even know that it could drop that low.

As a precautionary step, the doctors have placed Katie in a special isolation room of the hospital. It is a room separated from the hallway by another specially filtered, sealed off entry-way. On our first visit to Baird 5 back in January, we often walked by the isolation room and wondered who was in there and how sick you had to be to end up in there. Now we know.

At the time of this writing, I am assuming that Katie is still sleeping. Amy spent the night at the hospital with her, and Josh and I went to my brother's house. I haven't called the hospital yet because I don't want to wake them up. I'll call for an update around 9am. Katie should be up by then.

Thursday, April 17, 2008

Things Were Going So Well....

Things were going well until this morning. Katie slept late which wasn't surprising since she wouldn't sleep alone last night and we don't always make the best sleeping companions. Josh and I headed off to the barn to await the arrival of the vet and Amy crawled into bed with Katie to read her some morning stories and get her moving. They were going to go to Fletcher Allen for some chemotherapy today while we were working with the horses.

Unfortunately, while on the way to Burlington, Katie developed a fever. It did not subside at the hospital during the first couple of hours that she was there and her blood tests indicated that she might have an infection of some kind. All of her blood counts are up after her last transfusion except for her white count which is still lower. The fever and the still dropping white count have the doctors concerned enough that Katie will be spending the rest of her vacation in the hospital.

Josh and I have canceled our camping trip and are packing some things and heading to Fletcher Allen shortly to bring Amy and Katie some clothes and other necessities. We will be visiting my brother while we are down there so that Josh can have a chance to play with his cousins, Kyler and Eric again. My cell phone isn't working since it went through the wash yesterday. Amy's cell phone is working, but she left the charger here when she left this morning so she is only turning it on to make calls and check messages. I'm bringing a charger with me so her phone will be on full time again as soon as I get there. I will either update the blog again later tonight or tomorrow morning depending on whether we have any more information at that time.

Wednesday, April 16, 2008

More Vacation Fun

We continue to enjoy our vacation. I stained new bookshelves for the kids and worked on the yard. Rick worked on an old canoe.The kids played in the sun. (They take their responsibilities very seriously!) Katie struggled with nausea after a nap, but she rallied beautifully. We went up to the lake after dinner so the kids could play with their boats, and Katie had a grand time splashing about in her barn boots.

The adventures continue tomorrow. Rick and Joshua have been talking about an early camping trip; we'll have to see what they come up with. Katie and I travel to Burlington for treatment. We hope to get some sense of what awaits us as this next phase of treatment continues. Katie is happy to be making the trip. We'll try to have some fun along the way.

My kids are incredibly good at having fun. They were relaxing with a movie and some ice cream until Katie remembered the leftover pasta in the fridge. She is currently making trips between my chair, where she has stored her pasta, and her father's spot on the couch, where she feeds him olives. She fills her little face with rotini each time she returns. This is good news, as we are trying to help her gain weight. It is especially fun to watch, however, just because she is having such a good time. I love vacation.

Tuesday, April 15, 2008

Vacation

Josh and Katie know just exactly what to do with their vacation time.

Josh played his new video games, he bounced the life out of the trampoline, he floated boats in Nana's "pond," he got as dirty as he could get, and he ate a peanut butter and jelly bagel in just ten bites. Yikes. Proof: Children allowed to run wild can lose all semblance of polish or civilization in just two days of vacation. Joshua also talked Nana into a sleepover at her house, complete with pancakes. "I'll miss you, Mom," he said, "but not too much because I'll be so distracted and having fun and anyway big kids who are five or six don't miss their parents when they have sleepovers." Yeesh...I don't really know what to make of this wise and bratty preteen I'm raising. He told me that the lunch we ate in the warm sun did not meet the criteria for a picnic; there was no blanket, so it didn't "qualify" as the first official picnic of the season. Good grief.

Katie was very happy to be outside, too, even if our picnic did not feature a blanket. There was color in her cheeks this morning, and her heart wasn't racing just to deliver oxygen; she could run and play, and she did. After a nice long visit to the swingset, she happily ventured out to the barn, where she continued to play and to talk (talk, talk, talk) while exploring Nana's cupboards and while grooming Chief. (Bless Chief's heart. She insisted that he help her eat a peanut butter and jelly sandwich. Poor horse...) It was beautiful this afternoon--warm and sunny--and Katie was very good about wearing her hat to prevent sunburn. She was also very glad to see Uncle Mike this evening. Katie's neutrophil count is very low, so she won't be able to mingle much, but she is happy to be outside, so we are taking advantage of the weather. Let's hope it lasts!

Rick and I are both hoping that the weather holds, as we are racing to do as much work outside as we can before vacation ends. There is furniture to finish. We have to rake the lawn that we never got around to in November. There are new bird feeders and roosting pockets to hang. There is the basement...

I don't relax well, anyway, but it is especially difficult for me to waste time these days. Katie begins a new treatment cycle next week, and while it is less aggressive than the cycles she has completed, it is less predictable than the others. There is no clear routine, and medications cannot be administered, during this cycle, unless Katie's cell counts fall within specific parameters. This means, as near as I can figure, that we have to catch up now and remain caught up because we won't be able to anticipate our schedule. Please forgive us if it seems like we are flying by the seat of our pants at any point in the next few weeks. This could be interesting.

The good news is simply that Katie feels good today and loves the sunshine. I hope you'll enjoy the sunshine, too.

Monday, April 14, 2008

Video Games, Laser Tag and a Transfusion

The whole family took the trip to Burlington today. We brought Katie to Fletcher Allen for her transfusion and Josh and I left Amy and Katie at the hospital while we headed off to entertain ourselves in the greater Burlington area.

Katie's numbers were impressively low today and they definitely explain why she was feeling bad yesterday. Her hemoglobin was a mere 5.1, low normal range would be 11.5+. Her white blood cells were only .46, low normal range would be 5.5+. Her platelets were only 18, low normal range would be 156+. Katie received a hemoglobin transfusion and a platelet transfusion this afternoon and is feeling much better now that she has a little more blood in her.

Josh and I spent some time in the Square Mall with Gabe, a long time friend. We picked up a couple of new video games from the used game bin at the Game Stop and Josh is very excited about those. We even spent a little time playing games in the store before meeting up with my brother and his son, Kyler, to go to Pizza Put. Theoretically, one goes to a pizza place for pizza, but we never ate any pizza today. We spent our time playing laser tag and miniature golf there. It was loads of fun for all of us as we blasted away at each other in a maze lit with black lights. A computer tracked our performance and gave us a title at the end of each battle. Kyler earned the rank of Space Cadet. Josh graduated from Space Cadet to Lunar Private. Ryan (my brother) earned the rank of deck officer and I out blasted them all with the highest rank of Imperial Major. I wish every trip to Burlington for a transfusion could be this much fun.

Saturday, April 12, 2008

Hanging On

Katie is just hanging on and waiting for her next transfusion at this point. Her energy levels are really low and her whole Body is hypersensitive to touch right now. It hurts her just to pick her up. Her blood cell counts were really quite low when we left the hospital the other day. They were borderline at the time and the doctors decided to see if she could wait three more days before getting the next transfusion. Well she is wating, but I can't say that her quality of life is very good. She and I will both be glad to get some fresh blood into her on Monday.

Friday, April 11, 2008

A Typical Transfusion

video
For any of you wondering what a typical experience at Fletcher Allen is like, I video taped, edited and narrated Katie's last trip to the hospital for a transfusion. It is a ruffly three hour process, edited down to nine minutes and twenty three seconds.

We are due for another transfusion on Monday.

Thursday, April 10, 2008

Home again, Home again

Katie, Josh and I all traveled to Burlington today for a little chemotherapy. Josh is on vacation for the rest of the week, so he was obliged and willing to travel along. Katie was not as willing but I didn't give her the option.

Chemo was reasonably quick today... just 2.5 hours in the hospital plus the trip down and back. It was actually a nice day for a trip and we rode down with the windows part way down, nibbling on snacks and enjoying the sun.

Katie was good for her doctors and nurses throughout the procedure and Josh was happily occupied with coloring and playing. When everything was said and done, we stopped in to visit Grandpa Art and Grandma Kathy for a quick bite, a drink and a hug. Then we were off and headed home. Katie slept, but Josh stayed awake and kept me company all the way home.

Despite the transfusion Tuesday, Katie's numbers are still low - especially the hemoglobin which is currently only 7.2. The doctors expect that she will need another transfusion by Monday. For right now though, we are all set for a good weekend. Hopefully the warm, sunny weather will hold out so we can get outside a little.

Wednesday, April 9, 2008

Spring Has Sprung

I know better than to say this out loud, but I am compelled to say that I think Spring may actually be on its way. The front yard is still covered in white, but the sun has melted much of the snow in the backyard, and Katie Grace got her wish: We ventured out to the swing set today so she could swing and slide. While my feet were firmly planted in slushy snow as I pushed her up and into the air, she basked in the warm sun. She had to wear a hat and some mittens with her sweatshirt, but she went out without a coat, and she enjoyed every minute of our adventure. Quote of the day (after each trip down the slide): "Let's do that again." She has been looking out at the swing set for weeks. It was such a blessing to spend some time with her in the backyard. I know this sounds like such a simple thing. And we were only out there for half an hour. But the little things matter these days, and she was so happy. She fell asleep on the way home from a trip to the grocery store, desperately clinging to the bag of chips I was crazy enough to purchase. It was quite a look. It was a treat to have a regular old day with my little family. Best wishes to you and to your families, too.

Tuesday, April 8, 2008

Heading Home

It's 11:00 p.m. Do you know where your children are? My son is sleeping peacefully in his own bed, tucked under the covers and dreaming of t-ball. My daughter is on her way home, still, after a very long day in Burlington. Rick and I went to work this morning hoping to hear that Katie's blood counts were high enough that we could postpone the inevitable just a bit longer. Those medications caught up with us, however, and Katie's counts bottomed out; it was time for platelets and for red blood cells. Rick left work at lunch and traveled with Katie to Burlington, where she happily returned to her throne in Post Procedure Recovery (the PPR). She ate like a pig, took a good nap, and behaved herself admirably while receiving the transfusions that sustain her through chemo. We heard an interview on NPR recently in which a comedian talked about his experience with cancer. When asked who he wished to thank for his recovery, he thanked the people who agree to participate in clinical trials, who allow doctors to experiment and to make life-saving discoveries. If I had to thank a group of people who make a real difference, I would thank blood donors. Blood is such a strange gift. But it makes such a difference to kids like Katie. I wouldn't understand what a valuable commodity blood is if I hadn't seen it for myself. I get it now.

This was a difficult day for me, to be honest. I am tired. I am angry and frustrated. I am stressed out. But Josh was a wonderful companion this evening--sweet and funny and calm--and Katie continues to inspire me with her strength and her exuberance. I would be remiss if I didn't mention my husband, who continues to slog through this with me despite what a grouch I am. We realized, yesterday, that we have not had an uninterrupted conversation lasting longer than five minutes in a long time. "What is the point of being married?" I asked. "Would you rather do this alone?" he asked. Good point. Thank God for my husband, who always knows how to settle me down and to keep me focused. Maybe we should take lessons from our kids.

I think they're home! My family is home! Good night, all.

Monday, April 7, 2008

Monday Update

video
Katie spent the day with Grandma Kathy again today while Amy and I went to school. We think that this week will be a short week for Katie and her grandmother because Katie appears to be getting closer and closer to needing another transfusion and may not make it to Thursday. The petechia seem to be taking over her body, her color is becoming more and more pale and even though it doesn't always seem it, her energy levels are dropping and she is getting tired more easily. We will find out tomorrow whether or not we have to take her in to Fletcher Allen a day early.

She had a good day today, even getting a chance to get outside and get some fresh air and she and her grandmother walked around town. She romped and played like most any other day when she is feeling good. She also got a kick out of watching men climbing on scafolding outside the window as they were working on our roof today.

When Amy and I got home from work this afternoon, we took her for a ride to North Country Hospital for a little blood work. She took it well even though the blood was drawn from her arm instead of the usual finger prick so that her liver enzymes could be tested too this time. The only trouble we had was on the way home when she didn't get her way and she cried all the way home - showing us just how tired she was.

I shot the video tonight at bedtime as Amy was reading Katie some of her favorite bedtime stories. She didn't last too much longer after I turned the camera off.

Sunday, April 6, 2008

Sunny Sunday

What a beautiful day! Every member of our little family went to Burke today, and three Kelleys went skiing! Burke was closing today, so it ran a special: Anyone from the Kingdom could spend the entire day skiing for just fifteen bucks, and we just couldn't pass up a bargain like that!

Joshua and Rick were skiing by 9:30. Katie and I had a quiet morning and joined them at noon. We figured we could chance the outing, as it was warm and sunny today so we could be outside in the fresh air. Katie was thrilled to leave the house. She basked in the sun on the back steps of the lodge, watching skiers and mingling with anyone who was willing to talk. "This is my Mommy," she would say, introducing me to anyone who looked even remotely friendly. (And there were a lot of friendly people taking in the sun this afternoon. She cheered for Rick and for Josh as they appeared and clapped as they made their way down the hill. "That's my Joshie. He's a good skier," she happily reported.

She's right. Josh is great. He paused long enough to wolf down a peanut butter sandwich, celebrated the arrival of his friend Jack and ventured back out. Rick and Katie took in some more sun while Josh and I took our first run together all winter. We skied with the Kings this afternoon, and everyone had fun. Katie, who was camped out on Rick's shoulders, wearing new goggles to protect her eyes, waved greetings as we approached. She was so happy to get out of the house and to see people. The isolation required by her immune system is bad for all of us--I miss the nearly constant traffic through the house--but it is most difficult for Katie, who really needs people.

Joshua was surrounded by people he loves this afternoon. He skied all day. I thought he might agree to head home after we took a break for snacks, but he was concerned that we had neglected the J bar, so out we went again. We closed the lifts. That bit of exercise should tide him over for a few days! He was happy to play Legos and to visit with Grandma Kathy, who is here to spend a few days with us. (Bless Grandma's heart!)

We don't know what this week has in store for us, but it was wonderful to have a sunny, warm day in which to play. We'll hope to write with continued good news soon. Happy Spring!

Saturday, April 5, 2008

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. video

Friday, April 4, 2008

What Does Spring Look Like at Your House?

Rick took this picture from our front porch this afternoon. This is what a spring day here in the Kingdom looks like. (I thought it was April?) Katie had a relatively good day. She spent the day a good portion of the day napping in our bed. What a beautiful girl...

I went to work today, where I was pleasantly surprised by positive reports from the sub who covered my classes. It's always a little scary to open the sub folder the day after I have been out, but it's clear that the kids had a good day in my absence. Maybe I should be out more often?

Joshua had a good day at school, too. They are working on addition facts, and he enjoyed making Flubber. (The flubber project appears to have been more exciting than the math facts...) We went out for ice cream after school today with Auntie Teri, and that was fun. I finally caved and bought Joshua the Spiderman Legos he has been coveting, so that was a treat for him, and I enjoyed some grownup conversation.

Poor Rick, on the other hand, spent the day washing Katie's car seat, and that cannot have been a treat given yesterday's vomitfest. The straps were especially disgusting. All the car seat's various parts are strewn about the living room, and I am sincerely hoping that I will not have to reassemble it; that sounds like a good job for gadget guy.

Katie appears to have recovered from yesterday's excitement, although she is complaining about pain in her legs this afternoon. That is easy to fix, and the Tylenol she just took should make it easier to give her a shot of cytarabine, too. The potential glitch, as we look at next week's treatment, is that Katie's liver enzymes are high, and she cannot continue with vincristine until those return to normal. We are hoping that Katie will not need blood or platelets until Wednesday or Thursday, but it is hard to guess what will happen. I would readily admit that my control freak self finds it difficult to accept that some (all?) of this is beyond my control altogether. The best laid plans of mice and men and all that. Oddly enough, I think this process is teaching me to roll with challenges outside my traditional comfort zone. Maybe I will finally "mellow out." Or maybe not. There just isn't enough room in my day for panic. Don't you worry, either. Katie will be fine. Katie will be fine. Katie will be fine. It isn' t a catchy mantra, but it works!

Joshua and Rick are planning to ski this weekend. Many thanks to Gigi Poginy, who found a very short pair of skis in her garage. Katie will be all set next winter if we can just find her some boots. I love looking forward to the adventures Katie will have once she has finished these aggressive treatment cycles. It's fun to imagine a day we can all ski together! Enjoy the snow, friends. (Or join me in hoping that it all melts and quickly! Happy Spring?) Have a nice weekend.
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Thursday, April 3, 2008

Home Again and Feeling Okay

Katie and Amy made it home by about 5:30 pm and a quick look at Amy's face told me just what kind of day she had had. Katie was subdued but happy and feeling alright for the moment She was just glad to be home.

The rest of the evening has gone pretty well, with Katie remaining comfortable but a little low on energy. Josh played video games with me and Katie watched some Dora and also watched us play a bit. Amy tried to get a little time by herself, even if it was just in the kitchen loading the dishwasher and putting away dishes.

We think we now know what was so wrong with Katie this morning. The doctors at Fletcher Allen, after listening to Amy explain Katie's symptoms, believe that Katie was displaying signs of a very low blood sugar level. We had been told that a diabetic-like inability to control blood sugar levels was a possible side-effect of the 6MP that she has been taking, but we had not seen any signs of it up until now. Apparently, we could have minimized the problem or even eliminated it this morning if we had just given Katie something sugary to eat or drink. Instead we gave her water and bland food so we wouldn't upset her stomach further. That, of course, didn't help to raise her blood sugar level at all.

At least there is an upside to this new side-effect - Katie now has a good reason to start her day with a little chocolate...

Quick Update

Katie has an ear infection and she is not getting a transfusion. Her numbers aren't low enough right now but the doctors expect that she will end up getting one early next week. She still feels horrible though and I could hear her crying and complaining that her "belly hurts" while I was on the phone with Amy.

They are done for the day at Fletcher Allen. Katie has another dose of Cytarabine in her and is headed home shortly, still in pain, still feeling sick. She will also be bringing home another antibiotic to clear up the ear infection.

Not According to the Plan

Apparently, last night's post was wishful thinking. Katie took a turn for the worst over night and woke up this morning complaining of ailments that her normal medicines did not help. She woke up crying because her stomach hurt and we gave her some Zofran. She complained of her head hurting and we gave her some Tylenol but became concerned because her headaches usually only happen when her blood counts drop. She was still in bed when I left for work.

Amy called me about an hour ago with her update. They were almost to Fletcher Allen and Katie had not gotten any better. She had vomited several times already which was very unlike her and she was still complaining that her head hurt and she just didn't feel good. Amy also told me that when she changed Katie out of her pajamas and into clothes for the day, she found many petechia.

Not surprisingly, I'm not pleased with the suddenness of the change and I'm worried about my little girl. I just tried to call Amy but go no answer, so I will try again after classes this afternoon. I'm assuming - no, I'm hoping that this means she will get a transfusion while she is at Fletcher Allen. Transfusions always make her feel so much better.

Wednesday, April 2, 2008

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, April 1, 2008

Night Owl

Oh boy are we in for it now! Katie has become a bit nocturnal, sleeping until almost noon and staying awake until almost midnight. Josh described her behavior tonight as being like an owl and only waking up at night. You see, she has a cough again and it keeps her up at night. She will lie down to sleep and she might even doze off for a while. But sooner or later, a dry, non-productive coughing fit will wake her up. These coughing fits last up to 10 minutes and nothing seems to stop them. She does this on and off throughout the night and it has been going on for about three nights now. By the time morning arrives, she is so tired that her body finally stops fighting with her and she falls asleep deep enough to stop coughing. She laid around most of the day today, not wanting to do very much, but when we got home from work, she perked right up and hasn't settled down yet. It is just about 11:15pm as I write. She is snuggled in beside me, watching me type, but also wiggling incessantly. I'm willing to bet that I will be the first of us to fall asleep, lulled into unconsciousness by the soothing scent of Vics wafting off of her body.