An Over Due Update

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

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

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

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

Infection Free

Katie's ear infections are officially gone. Apparently the Augmentin did what it was supposed to do and the pain that Katie was complaining about for the last couple of days before going back to the doctor for a follow-up was caused by the fluid that is still in her ears. The doctor prescribed a nasal spray to help drain Katie's Eustachian tubes and sent us on our way. To help keep the ear infections at bay, Katie is also taking 2400mg of Xylitol each day. Xylitol is a natural sugar-alcohol that comes in the form of gum, syrup, or candy and our doctor recommended giving it a try. We bought the candy from our local health food store and Katie has no problem gobbling it down. Although I just read that Xylitol needs be given in a dose of at least 8400mg to be effective. We will probably increase her special candy allowance now that she is infection free again and try to keep her that way.

School vacation starts this week, and Katie is looking forward to both down time and time for play. She took a 3 hour nap this afternoon and only woke up because I woke her up. I wasn't interested in her staying awake all night after sleeping too long in the middle of the day. Tomorrow, if the weather cooperates, the whole family is going skiing and riding at Burke Mountain. Hooray for vacation!

Update

Katie's fever dropped a little lower over night, to hover around 101. In the morning I spoke with her doctors and arranged for a follow-up. At her follow-up The doctor and I spoke about Katie's recurrent ear infections and decided to try Augmentin, and augmented dose of amoxicillin designed to stay in her system longer to kill off more bacteria.

From the doctor's office, we were transfered to the hospital for another blood count, blood culture, and another dose of Ceftriaxone. At the hospital we were told that the previous night's x-rays had just been read and that the doctor thought he saw a shadow of pneumonia. New x-rays were taken, and it was confirmed that there indeed was some pneumonia in her lungs. However, the Augmentin and the Ceftriaxone both fight pneumonia as well as ear infections so no change in her medications are necessary.

Port access was a breeze again, and Katie's blood counts were the pleasant surprise of the day. Her white blood cells climbed back up to 2.6 and her ANC climbed up over 1200. Her hemoglobin was still low (I don't have the number handy) and that concerns us since fever tends to kill off extra hemoglobin.

During our stay at the hospital, Katie's temperature began to rise again. She was given some Tylenol to help keep her comfortable and although she felt better, it certainly didn't keep her fever down. Katie was discharged with a fever of 103.7 and we headed home. By 9pm, her fever had risen to 104.9. Happily, that was its highest point. Her fever slowly dropped over night until it was once again hovering around 100 this morning.

She has spent most of today flopping back and forth between feeling sick and vomiting, and then feeling great and chattering and playing as if nothing were wrong. As I right this now, her temperature has started to climb a little, and she is ready for bed. I hope she gets a good night's sleep tonight so that her body can begin to recover from this round of illness.

So Much for Getting Well

That cough that we mentioned in our last post has progressed in to something that sounds croupy, the ear infections never did go away with that last dose of Amoxicillin,  and we are back in the hospital. This time, we are at North Country Hospital with a fever of 103.2. Katie is feeling awful, but dealing with it well as usual.

Port access went very smoothly. North Country doesn't stock the types of access needles that Fletcher Allen uses with Katie's port so access has historically been difficult here. However, at our last visit to Fletcher Allen we were given several access needles to keep with us in case Katie needed to have her port accessed again at North Country. The nurse used one of the Fletcher Allen needles today and accessed Katie's port with great ease. It made a real difference.

The plan for right now at least is to wait for the results of a blood count, wait for the Ceftriaxone to finishing dripping through her IV, get some medication for her recurrent ear infections and go back home. Hopefully, this will be just another routine visit to the hospital.

One Big Update: Good, Bad, and Ugly

It has been a long while since we added entries to the blog, but this has not been an uneventful stretch.

First there was Christmas. We wished for and received a Christmas at home. Katie's health was good, and we enjoyed ourselves tremendously. The kids had lots of energy, and they immersed themselves in parties and play. Santa spoiled us rotten, and we had time to breathe. It was glorious.

New Year's even went off without a hitch, and the kids were happy to return to school, as were we. It is hard to believe that we are halfway through the school year. Katie continues to love school. She is always happy to get up and go. She has learned her letters. She recognizes her numbers. She can recognize (and even spell!) some words. She plays school. When her Nana asked Katie about her career ambitions the other day, she explained the full plan: She will teach at Lake Region with her parents. Then she will be President. Then she will be a surgeon. (Hmmm....Oddly enough, Joshua wants to be an engineer or an art teacher. It's hard to know whether or not to encourage the teaching madness...) Whatever the final outcome, we are thrilled that Katie takes such pleasure in doing well in school and that she has made sweet, thoughtful, energetic friends. (Joshua is also thriving at St. Paul's and has friends that we truly love.)

Katie's new project involves lots of snow and some fast skis. Joshua is a very skilled skier. He is brave, and he is fast. Katie is determined to catch up. She seems far too small to be skiing--in ski pants and a parka she is as wide as she is tall--but she got right into the J bar line at Burke with her dad, and off they went, proud mama trailing behind as Joshua went flying past. After two short sessions with her dad, she ventured off bravely on her own. Now we just need to teach her to stop (and maybe turn).

Unfortunately, we will not be skiing this weekend, as together we have managed to contract half the infectious diseases known to man in the last two weeks. Katie went to North Country hospital with ugly ear infections in both ears and with a fever that spiked through Tylenol and that continued for five days, causing her to miss an entire week of school. Before she had finished the amoxicillin, I ended up with impetigo, a skin infection that is surprisingly unpleasant and really unattractive. Joshua dragged himself through the week, tired and weepy. We thought he must be having another growth spurt. Wrong again. The lymph nodes that stuck out past his ears brought us back to our beloved pediatrician on Tuesday, where he was tested for mono. Despite all the physical indicators of mono, the test came back negative, but he is still pooped, and his swollen glands indicate that there is some kind of an infection swamping his system; because the infection remains unidentified and he cannot make it through the day without a LONG nap, he is home from school all this week. Is he contagious? Does he pose a threat to Katie? Who knows? North Country Hospital loves us, but our health insurance must have different feelings...

Katie returned to Fletcher Allen today for a lumbar puncture and her monthly chemo. She struggled with anesthesia, coughing a lot while under and producing phlegm during the procedure, so doctors had to sedate her more deeply than usual and vacuum the mucus from her airways. Gross...We are hoping that the contagion finds another family to torment and that the cough is not a sign of bad things to come. Despite the variety of germs and viruses that are likely actively attacking her body right now, her ANC is holding at 1600. Well enough to continue to live and play like any other 4-year old. Oh, well. Snow coverage is spotty after some rain last week, so we will abandon all hope of skiing and focus on getting well.

Chemo and Ear Infections

Overall, things are still going smoothly for Katie. She has only had to contend with minor incidents in the last few weeks. She had another ear infection a couple of weeks back that gave her enough of a fever to put in the emergency room at North Country Hospital for an afternoon. Her port access went smoothly and she was in at 1pm and out by 5pm. That's the kind of quick trip to the ER and back that we like.

This past Friday, she traveled to Fletcher Allen again for another round of chemotherapy. The last few monthly doses haven't had much of an effect on her other than to make her tired and a little ill - nothing that disrupted her activities. This dose of chemo had a more apparent effect. The Vincristine made her feel nauseous for the first time in a long time and she made several trips from her bed to the bathroom last night to get sick. I figured that she would be too tired to go to school today, but she woke up bright and early, ready for another day. She was more ready than Amy and I.

This past Saturday, we bought her her first pair of downhill skis, boots, and bindings. Now that there is snow on the ground she is eager to try them out. If the promised nor'easter hits tonight and we get a snow day tomorrow, we'll have to let her break her skis in in the back yard. Maybe she'll even let her parents sleep in late...

A Cough, A Fever, and the Emergency Room

Katie was up most of the night last night with a barking cough that sounded an awful lot like a case of croup. This morning, she woke up exhausted but feeling a little better. We let her go to school but warned the school about her night and told them to call us immediately if she was tired or sick. She made it through the day just fine.

However, when she finally arrived home after traveling around with her mom after school doing errands, she had a fever. Amy walked through the door carrying her and said “Take her temperature”. The thermometer read 102.8 and we were quickly on the phone with her oncologist, and then on the way to the hospital.

Happily, despite thirty plus minutes and three attempts, at accessing her port, it was determined that there was nothing seriously wrong with Katie. She tested negative for the flu. Her ANC is fine and her other vitals are what they should be. The doctor did find a double ear infection though, and are wondering if that might be what spiked the fever. The doctor said that the infection wasn’t bad enough to treat except for the fact that Katie was running a fever so he would give us some antibiotics to be on the safe side.

Four hours after leaving the house, we returned and Katie is now sleeping soundly in my bed… I think I’ll squeeze into her bed again rather than waking her up just to move her across the hall. She could use several hours of undisturbed sleep.

The Struggle Continues

At this point, the ealiest that Katie will get released from the hospital will be Thursday or Friday. It may be longer if her body fails to respond quick enough.

Her blood counts continue to drop and as a result her heart rate is rising and her breathing is getting rapid and more shallow. She is scheduled for a red blood transfusion tonight in an effort to remedy that situation.

Her pneumonia is still bad and her ear infections are still really bad, but drugs are flowing freely from several IV pumps attached to her port and hopefully things will start to turn around soon. Despite everything, Katie has remained in good spirtits for most of this latest hospitalization.

Josh and I came home tonight to get a few things done around the house. I have plumbing issues waiting for me in the morning, web site work that needs to be done and we are expecting a delivery of live baby chickens in the next day or so. We will be home for a couple of days before going back to Burlington and relieving Amy.

More Than a Simple Fever

Katie was transported by ambulance from North Country Hospital yesterday afternoon to Fletcher Allen Hospital where she spent the night last night and will apparently be spending several more. Her fever came and went throughout the day yesterday, but more concerning than that is the fact that she still has pneumonia and a nasty ear infection even after 10 days on antibiotics that she was taking specifically to cure those two problems. In addition, her blood counts have dropped.

The initial blood tests yesterday indicated that her ANC was just 420 again, considerably lower than it has been since the last precipitous drop back in January. This morning's blood counts show that her ANC has dropped even further, down to just 280. Her platelet and hemoglobin numbers are also low, although I have forgotten the exact numbers already.

We don't know exactly what we are in for yet, but it is starting to look like Katie may be in the hospital for many more days. On a side note, yesterday, her first day in the hospital, was the first official day of our summer vacation.

An Ear Infection That Led to a Fever

Katie has been suffering with an ear infection since Friday and ear infections never bother her. We were unable to get her to her doctors Friday before they closed and we wanted to hold of on another ER visit. We kept her as comfortable as possible over the weekend on rotating doses of Tylenol and Motrin, but as of Monday morning, her temperature has climbed above 101 so we are ER bound.

I'll post more updates later in the day when we know what is going on. For now we are headed to North Country Hospital.

Another Round of Pneumonia

Katie had a follow-up doctor's appointment today with her pediatrician to see how she was doing now that she is on an inhaler twice per day. She has been suffering from a cold again for several weeks and to our dismay, the doctor noted at this visit that her lungs no longer sounded clear. Yet again, another cold has settled into her lungs and caused Pneumonia. I think this is the third time in the past 8 months that she has had Pneumonia. To top it off, she also has fluid in both ears. Her ears are not very red and they are not bothering her, but there is a little infection there as well.
Oddly enough, she is feeling better today than she was just a few short days ago when her coughing was so bad that she had a hard time sleeping at nigh again.

Mouth Sores Again

The steroids are wearing off and Katie was just starting to return to a normal emotional and behavioral level. However, she now has something else to deal with. Yesterday afternoon she began complaining that her teeth hurt and she blamed it on getting bumped in the mouth at day care. When she complained again this morning that her mouth still hurt I asked her to open up and say ahhhh while I looked in with a flash light. What I found was more mouth sores located on the roof of her mouth this time, right behind her teeth. They are small, but white and well defined. We immediately started using the magic mouth wash again, hoping to give her some relief from the pain and minimize the length of time that she has to suffer this time.

Home Again

We were released from the hospital as planned last night at approximately 12:30 AM. She came home still running a fever of over 101 and she fell asleep instantly. We all slept a little later than usual this morning, and when she woke up her fever was gone. The one additional point of interest from last night's endeavor... She has a double ear infection that has developed since Thursday.

March Update

It has been too long since our last post and people have started asking how Katie is doing. As always, when things start going well, we begin to forget about updating the blog. But don't fret. Katie has been having a pretty good time and feeling very well.
The only noteworthy events are another round of chemotherapy and an LP that happened last Thursday (everything went smoothly), and the appearance of some new mouth sores as of two days ago. Since the chemo and LP were fairly routine, I will skip right over that and go into more detail about the mouth sores.
She has 4 and we discovered them all at about the same time. The largest sore is on the inside of one cheek. It doesn't seem to bother her too much unless we want to look at it or probe it with a medicine covered Q-tip. Another possibly smaller sore is on the other cheek, but it is tucked up in between her cheek and her top gums. She won't let us get a good look at that one, but she complains so much about pain when we try to move her lip to look that we stop. I have only seen the very edge of it. The remaing two sores are on her upper lip again, just as before. They are small and we are treating them early, but I'm afraid that they may get as bad as the previous round of sores. The doctors want a quick blood test to determine what is happening with the rest of her body as her mouth deals with these sores, so we will be off to North Country hospital for a finger pick tomorrow morning. This evening we already have plans. Katie is going to the dinner theater at Lake Region. She is all excited about going to the play and we are not going to cancel that outing to replace it with a finger pick. That just doesn't seem fair.

All Tests Are In

Since I express some feelings in this blog post, I wish to point out first that I, Rick Kelley, Katie's dad, am the one writing this entry and not Amy, her mom.

The remaining test results from Katie's bone marrow are in. There is still no sign of cancer and the tests revealed that her cells are maturing as they should be. To say that information was a relief is an understatement. Further blood tests also indicated that Katie's antibody count was low. Her count was 420 but I foolishly didn't ask what normal counts should be. Her ANC dropped again too. She was just over 500 Monday, but by Thursday she was back down to 220. However, in an effort to boost her immune system and fight off her cold and her virus, she received her first IVIG (Intravenous immunoglobulin) Thursday. We have been asking for Neupogen for some time to help boost Katie's immune system, but we didn't even know another option was available in the form of the IVIG until two days before Katie received it. I can't tell you exactly why one option was chosen over the other option, but I can tell you that I am glad that something was done.

Today, several days after the IVIG, Katie is feeling better. She is currently suffering from Laryngitis, and her swollen voice box is making it difficult to breathe, but she had that problem before we went to Fletcher Allen on Thursday. The doctors checked her over and told me to call if it got worse. It was bad Thursday night and Friday night. I was up a lot those two nights, checking on her to make sure that she was still breathing okay. Luckily, it never quite became bad enough to take her back to the hospital. Last night, she slept better and breathed easier and today it is a little better than that.

We are still fighting the battle to heal her lips but we are winning. I don't know if the IVIG is helping at this point or if the continued heavy use of the Medicated Blistex is working wonders all by itself. Her lips look normal at this point, but if she lets us look under her top lip, a sore is still hiding there. However, this last remaining sore doesn't seem to be causing her any pain and she will let us lift her lip up to apply the Blistex directly to the sore. The remaining sore is not a nasty, white hole surrounded by angry, red flesh any more. It is only slightly off-color and there is no redness surrounding it at all. She even brushed her teeth all by herself tonight before bed, which is quite an accomplishment since teeth brushing has been a real battle these last couple of weeks because of the sores on her lips.

Her spirits have been good and her energy has been great. She played around the house all weekend with her brother - running laps from room to room and climbing stairs and sword fighting in between coloring, painting, and just being a kid. It would have been nice to spend more time with her while she was feeling good this weekend, but I had a lot of work waiting for me and it kept me busy all weekend. She played around me as I sat at my computer for hours on end. Since Friday after work, I created and published a new website for a company that I work for our of St. Johnsbury, and I wrote two college papers for a course that I'm taking as part of my Master's program. I am very pleased with myself for getting that done, but I am sorry that I missed another opportunity to play with my children. Unfortunately, weekends spent working are pretty common place for me when my college is in session. There isn't time to do the work any other time.

Some Preliminary Good News

As you may know, Katie had some bone marrow samples taken again this last Monday. Normally a bone marrow sampling for Katie consists of a single bone marrow aspirate from one hip. However, Monday, the doctors took bone marrow aspirate from both hips and they also did a bone marrow biopsy. Due to the extra medical attention she received Katie was a little more sore coming out of this procedure than she historically has been.

The bone marrow was extracted at around noon on Monday, and at 2:30 on Tuesday the doctor called me at work with the preliminary results. I am happy to report that when Katie's bone marrow samples from Monday were compared to those just a couple of weeks ago, the doctors were able to observe her cells maturing normally just like they are supposed to. In addition, they did not see any signs of leukemia cells in the sample. I am happy at the news, but I am also trying not to be too excited about it. The bone marrow samples will still undergo sever more tests and be looked at by many more people, and any one of them may report something that I don't want to hear, but for now things look good.

On another positive note, Katie's ANC on Monday had climbed substantially and was at 520. If that number is a sign that she is recovering and not just an abnormally high spike, we will soon be back to something closer to normal.

Tomorrow, Thursday, Katie has to return to Fletcher Allen for a follow-up appointment. We are hoping that more news has come back from the bone marrow and we are hoping that her ANC has climbed even higher. Her infection seems to be almost over, but her lips still look pretty bad. The sores left a lot of damaged tissue and her lips are cracking as they heal - leaving her with blood stained teeth several times each day. Her lips are still sore to the touch and putting any kind of lip balm on them is still a challenge unless she is sleeping. She also has a nasty sounding cough that she managed to pick up from her brother and it wakes her up at night. I think her throat hurts from coughing but it is hard to tell. For now she is sleeping soundly, and when she wakes up in the morning we will be headed back to Burlington.

Two Kids Sick!

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

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

Still Coping

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

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

Healing a Little More

Katie had a good day with Grandpa and Grandma Kelley today. She fussed very little and was quite content. To top it off, she lost the dry, dead skin that was covering her upper and lower lips and hiding what was really there. Her lips look much better and some of the swelling has gone down too, but with the dead skin out of the way, we can see what is left of another open sore that had formed on her upper lip. Apparently, the first sore spread. Despite being able to see the sore now, she is looking much better than yesterday. Maybe tonight she will sleep through the night without pain medication at 2am.

She is Tough

She is indeed tough -- and still mad too. Katie is slowly recovering from the infection that has manifested as the sores in her mouth. Her lips are looking a little better and the sore inside her mouth is shrinking. The sores still hurt though, as evidenced by her behavior. She is still mad at the world and is prone to emotional outbursts directed at any and all people in the room for reasons as small as "he talked to me" or "I'm not hungry". She also isn't sleeping through the night. She is waking up at least once in the night crying because her mouth hurts. Tylenol and Liticain usually work quick though and she is back to sleep in 10 minutes or less.

Grandpa and Grandma Kelley picked her up this morning and are going to stay with her while we are at work until she recovers enough to return to day care. I hope they have good luck today and manage to avoid the worst of her outbursts.